Re: [M_H_E] not bitter, just frustrated.

2007-08-31 21:06:35

Hello,
I understand your sentiments Deena. While I can not advocate the throwing
of rocks, I do think that it is important to stand up for yourself. Also,
many people take it for granted that their physicians are working in their
best interests, and unfortunately, this is not always the case. (Well, I
guess this depends on how you read the word "their").
It is hard to beg for help, only to be treated rudely. I actually filed a
report against my former orthopedic doctor because he ignored my pain
symptoms because now I am realizing that I have substantial problems that
should have been addressed earlier. I even wrote to the chief medical
officer of OSU hospitals. Over the phone, the staff at the hospitals was
completely in agreement with me and my complaints. However, I eventually
received a letter pretty much saying that they apologized for any
miscommunication, that they could not substantiate or negate my concerns,
that they were unable to talk with the doctor or review my medical records,
but that they did look at my x-ray and that they were sorry if my
perceptions caused me to be dissatisfied with my health care. It was quite
silly. I essentially had to send the letter back to them.
I don't know what the solution is. I really wish that I would have stood up
for myself earlier. I also feel that this man should somehow be accountable
because he did not misdiagnose me out of incompetence, but rather it is my
belief that he was acting with prejudice. I am still feeling sad about this
situation, but I know that I must move past it too. After all, he probably
has helped others. Also, I need to focus on what I need to do to get better
(and not what I need to do to get even).
There is a book called Blink, and since it is a best seller I assume that
some have read it. According to Blink, physicians that rank low in terms of
bedside manner are sued far more times than those who are ranked more
favourably. Indeed, patients would forgive outright incompetence provided
the physician was polite about it. Tells you something.... huh?
-Christina

not bitter, just frustrated.

2007-08-31 16:48:33

I, too, am not bitter. No, wait. I take that back. I am bitter. I want to be
seen and treated as a person, not a misguided sentence in an old book. MHErs of
the World, Unite--Tell those doctors about your pain!!!
Why is it that doctors have to be hit over the head with something to change
their beliefs? The guy who discovered h pylori, the bacteria that causes most
ulcers, actually had to DRINK the bacteria at a conference to prove that it was,
indeed, the bacteria.
Ulcers, too, btw, are painful. So are kidney stones. So are root canals. So
are wisdom teeth extracted without anesthesia (I have a bad reaction to
anesthesia). But I have had all of these painful experiences. And in each and
every one of them, I can honestly say "This is nothing compared to a bad bone
day."
Deena

Re: [M_H_E] Use the rock analogy

2007-08-31 15:10:53

Hello,
Reading my earlier email, it sounds more bitter than I wanted it to sound.
Maybe I am a bit frustrated, but really my comment was more relating to the
state of medical knowledge than to a personal triad. The truth be known, I
read "Invasion of the Body Snatchers" yesterday and it got me to thinking
about the modern health care system.... All joking aside... (Actually, I am
not really joking if you read it you will see what I mean-- )
I think that part of the problem is that MHE may not be subject to the same
process of revision that many other diseases are. By this I mean that ideas
about more common ailments, such as diabetes and MS for instance, are
constantly reevaluated both in accordance with scientific research and in
the general media. As a result, physicians must continually evolve in the
ways that they treat and evaluate patients. Indeed, in order to maintain
their accreditation, they go through continued training, much of which deals
with the more common ills of humanity. For the most part, MHE does not get
the benefit of this sort of revision. While research shows a correlation
between MHE and pain symptoms, doctors still seem to rely on that same
paragraph from the 1960's textbooks that says that there is no pain for
people MHE. Indeed, having MHE seems to even disqualify people from being
able to relate pain experiences because as soon as you say, "I am in pain,"
the doctor will say, "there is no pain with your disorder, enjoy your
weekend."
This is why I think that it is important to stand up for yourself and to
drag the literature around with you to the doctors. The best doctors know
the research and so do not have to be reminded that it is no longer the
1960s (sigh), but others are still in the dark ages-- their assumptions
based on outdated textbook. The best thing to do is to keep asking
questions and to make sure that you are not bullied into making medical
decisions to which you do not agree.
Warm regards,
Christina

Use the rock analogy

2007-08-31 03:32:06

I was told so many times that I was not in pain that I developed an F**You too
attitude. (Sorry for the profanity, but this is a deep seated rejection that
goes beyond polite language.) Finally I learned to accept myself and believe
myself about pain--only after I'd walked on broken legs and have nothing left
but fractures on irrepairable knees.
My pain has either gotten worse over the years or I have a blissfully
forgetful memory. But it is severe. I had a root canal without anesthesia, and
all I could think of was that that pain was less than the severe bone pain I get
at least every week or so. I rate root canals without anesthesia as an 8 on my
1 - 10 pain scale.
I have learned to use this analogy with each and every doctor. "Ok, you say
that the bone can't cause pain as it does not have nerves. Fine. I have a rock
in my hand. The rock can not feel pain, right?. So if I throw the rock at your
head, there will be no pain and this is really ok to do, right?"
The doctors all, funnily enough, do not want me to throw a rock at their
heads. So then I say, ok. I am in pain, and let's consider the idea that the
bone is misplacing tendons, etc., and this can cause pain.
Also, ask them if they have had any patients with bone spurs. These patients
invariably have pain. I had two coworkers with bone spurs at the same time, and
every day they would compare notes about how much it hurt. I finally asked them
to imagine having a bone spur near almost every joint, and they finally *got*
that I was actually in pain.
Thanks for letting me vent...one more time.
Deena

Update and Adult Pain

2007-08-30 23:47:37

I am going for my CT Scan on Tuesday and GET to wait for 1 week
before we can discuss the results. I have decided to take as
positive an attitude about it as I am able to. My doctor is
reasonably confident the new tumor is MHE related, probably benign,
and is willing to remove it for me if I choose to. The scan should
tell us if it is out of the ordinary. I did find out it quite
larger than I thought. Surgery is tough decision, but likely a move
I will make. At 30, I feel I have a better shot at a quick recovery
now than waiting until I am older and in much more pain. I have had
7 removed since I was 16 years old. This is the longest stretch I
have gone (5 years). Hate to say I had two broken bones in between!
Crutches have become a way of life.
Adult Pain: I have been an adult over a decade now, and while I
hear MHE stop progressing in adolescence or skeletal maturity? Pain
does not go away. I also find mine has gotten worse over the
years. Climate change, age...you name it, I just ache more. I gave
up on rationalizing my MHE pain to doctors that often know less
about MHE than I do! The fact is we live with it, and have a right
to get a little bit of compassion. I got rid of my last Doctor for
thinking my pain was imaginary. Stay strong and try out the
suggested Pain Relief methods. One will likely work for you.
Kami :)

Re: [M_H_E] Scared over new growth/tumor!

2007-08-30 16:57:36

Kami,
I am 36 years old, and have known for as long as I can remember that I have
MHE. Last month I had an exostoses removed from the same area you described.
The majority of my problems with MHE were when I was a child growing up,
starting at age 10. I honestly could not tell you if the exostoses that my
doctor just removed has been there for a long time, or if it developed recently,
but I assume that it's been there for a while. When I was a child my doctor
always told me that when I stopped growing my bumps would stop growing. At that
time I believed it, but I know now from reading others' stories that this is not
always true. To my knowledge none of the bumps that I've had removed in the
past have returned, but I have heard others say that some of theirs have grown
back.
Everybody is different, but I would advise you to try not to worry too much
about it until you know for sure. I know, that's easier said than done. I
stressed over my recent surgery for weeks before it happened, but the main thing
that stressed me was my loss of independence. I am now pretty much back on my
feet and hardly limping at all. I still don't quite have all of my flexibility
back (what little I had to begin with...lol) but I think I am going to try to
start doing some simple stretching exercises and hopefully that will help. I
know it will take more time to get that back.
Keep us informed. I'm sure that everything will work out.
Shelly Muller
Utica, Ky
Hi All!
My name is Kami. I am 30 years old, and was diagnosed at when I was
in preschool. I went into the Urgent care yesterday about some major
abdominal pain. It honestly felt like I was being stabbed. I had
X-rays done, and they concluded they thought it was a Kidney Stone.
While doing the X-ray they discovered something interesting. I could
here them outside my door debating over what it was.
They told me a tumor had been spotted on my Femur on the inner side of
my leg towards the hip joint, and did I think it was related to my
MHE? I love going to new doctors and having to explain my MHE to
them in detail. When they showed me the X-ray it did not look like a
normal exostosis. It was very mottled or had varying spots over this
massive area. It did not appear to be solid bone. I am very scared
of the unknown with this looking so different from others I have had.
I had a baseball sized tumor removed from my pelvic area 9 years ago,
and this did not show up then.
Has anyone had the experience of having tumors in this area. Does it
seem odd that one would appear after my growth should be complete?
Any advice or suggestions would be appreciated. My appointment with
my doctor isn't until Monday and I am very uneasy at this time.
Thanks, Kami
Bonney Lake, WA

Re: Adult Pain?

2007-08-30 13:28:56

Thank you for the reply. I went to a new doctor Monday and she said
that she had seen lots of MHE cases and no one felt pain from the
disease. I was beginning to think that I had a serious problem. At
least now I know that its not unheard of.
Sammi

Re: Scared over new growth/tumor!

2007-08-30 05:30:29

I am 32 and I have bone tumers on the inside and outside of my hips. two
of them have apeard with in the last year. I know what you are going
throw. my brother 33 just had 17 bone tumers removed from his hip and
pelvic area last week. they told us the bone tumers would stop growing
at a certain age. I wonder what age that is.

Scared over new growth/tumor!

2007-08-30 01:19:57

Hi All!
My name is Kami. I am 30 years old, and was diagnosed at when I was
in preschool. I went into the Urgent care yesterday about some major
abdominal pain. It honestly felt like I was being stabbed. I had
X-rays done, and they concluded they thought it was a Kidney Stone.
While doing the X-ray they discovered something interesting. I could
here them outside my door debating over what it was.
They told me a tumor had been spotted on my Femur on the inner side of
my leg towards the hip joint, and did I think it was related to my
MHE? I love going to new doctors and having to explain my MHE to
them in detail. When they showed me the X-ray it did not look like a
normal exostosis. It was very mottled or had varying spots over this
massive area. It did not appear to be solid bone. I am very scared
of the unknown with this looking so different from others I have had.
I had a baseball sized tumor removed from my pelvic area 9 years ago,
and this did not show up then.
Has anyone had the experience of having tumors in this area. Does it
seem odd that one would appear after my growth should be complete?
Any advice or suggestions would be appreciated. My appointment with
my doctor isn't until Monday and I am very uneasy at this time.
Thanks, Kami
Bonney Lake, WA

Re: [M_H_E] Adult Pain?

2007-08-29 16:31:23

I'm 37. Since the age of 14, I've had 6 (I think) surgeries to affect
8 different places on my body. Bone pain seems to come more often as
I've grown older than it used to when I was younger.
There are lots of things you can do to reduce it. Hot/cold pads, pain
patches, warm baths, braces, painkillers, etc.
I highly recommend downloading the MHE Handbook and browsing through
that document for different ideas and then experimenting to see if
they might work for you. Because each of our cases are unique, what
works for one might not work for another person, but it might spark
another suggestion which no one has yet thought about and/or tried.
Kimberly Lowe

Adult Pain?

2007-08-29 11:44:20

Hello everyone.
I'm 24 years old and I was diagnosed with multiple hereditary
osteochondroma syndrome when I was two years old. I still have a lot
of pain and I'm wondering if there's anyone out there my age or older
who has the same problem. Also, I've had 8 surgeries, all of them
since I was fourteen. Has anyone else had multiple surgeries?
Please reply. I'm desperate for answers.
Thanks,
Sammi

Re: Hi from new member!

2007-08-29 02:40:37

Hi,
My mom is named Gudrun too!
I'm 31 years old and have MHE. I've got my own website about MHE:
http://web.telia.com/~u53501658/
/Siw (in Sweden)

Re: MHE in pregnancy

2007-08-28 21:42:01

Hi,
I've got a 2-year-old son. When I was pregnant I went to physical
therapy and thus didn't have any problems.
The delivery ended in an unplanned caesarean birth. A already removed
bump in my pelvis caused an incredible pain when the child couldn't pass.
The major problem came after the birth. Lifting my son made my right
arm ache and I lost functionality in the arm. It's probably permanent
and I can only work half-time. I haven't been able to lift my son for
about a year.
Unfortunately I don't think I can risk having any more children.
/ Siw (in Sweden)

Re: [M_H_E] Hi from new member!

2007-08-28 15:09:28

Welcome!
Best wishes and prayers for a successful surgery.
Kimberly Lowe

MHE in pregnancy

2007-08-28 09:29:00

Hello!
Anyone with experiences about beeing pregnant with MHE? Has this
affected your pregnancy or birth in any way?
Annbjørg, Norway :-)

Hi from new member!

2007-08-28 02:36:30

Hi!
My name is Gudrun and I have a 12 year old son, Eirik, with MHE. He is the first
in our family with this condition and was diagnosed at age 3, but we had seen
bumps long before we got the diagnosis. He's going in for his 7th surgery on
monday and they will remove exostoses on his shoulder, around knee and ancle,
all on left side. We know this surgery will be hard, but hope for a speedy
recovery.
We hope to meet new friends here and learn more about MHE.
Many thanks!
Gudrun, Norway

Re: New to MHE

2007-08-27 22:08:33

Emily,
Glad to see you posting at last. I've reaaly enjoyed getting

New to MHE

2007-08-27 15:13:53

Howdy all, I'm new and lookin for a penpal for my MHE Daughters. My
eldest is Jessica (jes)14 yrs and going in 9th grade. She loves
sports, mostly Volleyball and Basketball, she is on the school team.
We live in a small town so they need anyone they can get. Melee is
9yrs. and is going in the 4th grade, she has a twin brother who shows
no sign of MHE..Yet! My husband has mhe and so does my eldest son. We
have 5 kids and only three show it. You can write to us anytime and we
will try to write back. Jes says, she would like to find someone her
age who has lots of peer preasure and likes to write poems and loves
the outdoors,(camp,fish,hike and so forth). only my husband and eldest
son have had surgeries, Waitin to see if my daughters will. We go to
Shriners hosp. in Spokane, Washington. We live in Montana. Well thats
all I can think of at the moment, so I look forward to meetin
everyone, My husband is very shocked to find out he ain't the only
one..LOL...Live is wonderful if U make it that way...Seeya Em

Re: [M_H_E] It was I that went to Italy to give a presentation on MHE at a co...

2007-08-27 10:55:07

Hi Sarah.....you were able to say what I was trying to pass on soooo much
better. It still amazes me that you met with Dr. Randall while there....he is
awesome! Hope you are doing well and still reliving your trip to
Italy....it's got to be just amazingly beautiful!
Kristine
************************************** See what's free at http://www.aol.com.

Re: [M_H_E] My daughter was officially diagnosed today

2007-08-27 04:37:32

Hello,
I am sorry that your family is going through this difficulty. However, at
least now you know what is going on and can start to make decisions about
your daughter's health care.
Warm regards,
Christina

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Re: My daughter was officially diagnosed today

2007-08-27 01:27:21

That is very true. I'm thankful that now we know what is going on.
Its amazing how putting a name to it all puts things into
perspective. I don't know how much I respected what the doctor said
yesterday but my husband made a very good point in that maybe I need
to give myself a few days before I make a final decision on him. So -
at any rate that is where we stand now. We are getting a second
opinion next week at John Hopkins. It will be interesting to see if
there is a variation in treatment recommendations. Maybe we'll be
looking for a third opinion. I just don't want to make the 'wrong'
decisions here.

It was I that went to Italy to give a presentation on MHE at a conference in italy

2007-08-26 14:47:40

Hi it's Sarah
It was I that went to Italy to give a presentation on MHE at the
Connective Tissue Oncology Society Conference in Venice Italy last
Nov. From everything I personally know about MHE, there is a 2-5% rate
of malignant transformation. Malignant transformation mostly accrues
in adults, but can happen in children at a lower rate then the 2-5%.
Do not have the numbers off the top of my head and they have not been
published recently. The major take home message from all of the
Oncologist at this conference was for people with MHE to have regular
check ups including x-rays every 18 - 24 months throughout their life.
This really does help the doctors as they have a good base line to
work with. Keeping it simple exostoses are not uniform, the doctors
need to compare to see if the exostoses are changing.
Regards,
Sarah

FOP Fred Kaplan just has a meeting with him....

2007-08-26 14:36:08

Hi Deena
I just saw (FOP) Fred Kalpan a few weeks ago at a skeletal biology and
medicine conference I just attended. We had lunch together a few times
during the conference, had some great talks concerning research....
Did you know that 92% of children with FOP have exostoses. Fred and a
number of MHE researcher are planing to do some mice model research
together.
Fred will also be attending the next MHE Research Conference in San
Diego July 2009.
Here is the abstract form his presentation at this conference.
Speaker: Frederick S. Kaplan, MD*
The Departments of Orthopaedic Surgery and Medicine, and the Center
for Research in FOP and Related Disorders, the University of
Pennsylvania School of Medicine
Fibrodysplasia ossificans progressiva (FOP) is a disabling genetic
condition that leads to the formation of a second (heterotopic)
skeleton, and is the most catastrophic disorder of heterotopic
ossification (HO) in humans. Throughout childhood and early adult
life, FOP progressively immobilizes all of the joints of the
normotopic skeleton rendering movement impossible. At present, there
is no effective prevention or treatment. Recently, a recurrent
mutation in the glycine-serine (GS) activation domain of activin
receptor IA/activin-like kinase-2 (ACVR1/ALK2), a bone morphogenetic
protein (BMP) type I receptor, was reported in all sporadic and
familial cases of classic FOP making this one of the most highly
specific disease-causing mutations in the human genome. The discovery
of the FOP gene establishes a critical milestone in understanding HO,
reveals a highly conserved druggable target in the TGF-â/BMP signaling
pathway, and compels therapeutic approaches for the development of
small molecule signal transduction inhibitors (STIs) for ALK2.
Effective therapies for FOP, and likely for a vast array of more
common conditions of heterotopic ossification, will be based on
blocking ALK2, a critical node in the BMP signaling pathway.

My daughter was officially diagnosed today

2007-08-26 05:27:19

It is MHE. I don't really have a lot to say right now but wanted to
let you all know that we are officially here now.
Thanks,
Mandy

Re: MRI may work somehow differently for the other?

2007-08-26 04:33:17

Hi Christina,
Thanks, yet my MRI result may not be.
The below image is one of them;
http://sysynt.dyndns.org/photos/neck02a.png
http://sysynt.dyndns.org/photos/neck01.png
I really wonder whether the circled part is normal or not, cause
there bones may be almost broken because irregular cells are growing
the outer area.
O.T.
JAPAN

Re: [M_H_E] MRI may work somehow differently for the other?

2007-08-25 14:01:36

Hello, It could be that the results of the MRI made you feel better about
your situation... I remember when I had to have a Catscan every 6 months.
I always felt less pain after the test because I knew that my bone was still
okay.
Warm regards,
Christina

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MRI may work somehow differently for the other?

2007-08-25 13:10:17

I got MRI twice recently, then somehow feeling better than before. It's
simply feeling so nothing can be said more, cause the possibility that
feeling better sometimes means actually/physically bad, yet it may be
true that MRI's huge magnetic power probably makes some sort of effects
to human nerve system, or cells, or the blood stream, either good or
even worse. Please up if anyone has experienced any with MRI.
O.T.
JAPAN

Re: [M_H_E] Some questions while I "patiently" wait for my daugther's follow up

2007-08-25 11:29:17

Hi,
1. I think it depends on the surgery... I've had 7 &
I'm 18.
2. If I am correct tumors grow generally when the
person is
3. I've got plenty on my hands, they don't bother me
if I don't bother them (I made a mutual agreement with
them)
4. I forgot how old your daughter is but the little
buggers are still popping up on me and again I'm 18.
I hope I said the right stuff
Nicole "I'm done with highschool soon!" Wynn

Re: [M_H_E] Some questions while I "patiently" wait for my daugther's follow up

2007-08-24 23:43:55

Oh, I forgot... Yes, my hands are affected. It looks like I broke my ring
finger, which is the result of an osteochondroma. Also, my ring finger on
the left hand is the same size as my pinky, and my index finger is the same
size as my middle finger (kind of like Homer Simpson). I have had surgery
for this particular issue, and did not find it to be particularly painful.
Of course, I am an old lady and so it might be more difficult for a child.
-C

Re: Spontaneous Mutation.

2007-08-24 22:28:03

My oldest son's MHE is a spontaneous mutation. He was diagnosed at 7 yrs old.
His brother doesnt have it that we can tell and no one on either side of the
family has it either.
Denise

Re: [M_H_E] Some questions while I "patiently" wait for my daugther's follow up

2007-08-24 17:32:01

Hello,
You may get some pretty inconsistent answers to these questions.
Conventional knowledge holds that the osteochondromas do not grow after
skeletal maturity. However some will tell you that they experienced new
growth, particularly after surgery. Also, I think that new osteochondromas
may become evident as your child grows. Personally, I remember experiencing
huge changes during the 5th grade, which must have been around my growth
spurt. As for Osteochondromas vs. Enchondromas, I have been told that it is
difficult to tell the difference between the two when looking at the flat
bones (i.e. ribs and carpals). I have an enchondroma on my upper arm and
rather than sticking out as a lump, the bone feels rather heavy and club
like. I also have enchondromas on my ribs, but do question this
identification based on the fact that such things are difficult to determine
because of the type of bone that is affected. However, based on what I have
read, bulbous deformities of the fingers do tend to be the result of
enchondromas rather than osteochondromas. My knowledge is at best limited.
I hope that this helps,
Christina

Some questions while I "patiently" wait for my daugther's follow up

2007-08-24 05:41:55

1. Do the specialist tend to want to do surgery young or put it off
until they are done growing? I've read somethings that make me think
that it makes sense to do the surgeries now in the hopes that her
bones will grow normally once they are removed rather than wait and
try and do limb lengthing things later?
2. Do the tumors grow more after you are an adult - or do they really
stop when you stop(unless they are cancerous)?
3. She seems to have most of these things in her hands (they actually
look more like enchondromas than osteochondromas to me based on the
xrays I've seen online). Do you have any in your hands? I feel like
they will become extremely painful and cause major functionality
problems, but my husband had hand surgery a few years ago and it was
so painful....
4. Do more of them pop up? Meaning, are the ones she has now the
only ones she'll have - they'll just get bigger? Or will new ones
grow in until she is done growing?
I tried searching the backposts to get answers so I apologize if I
missed something but the buzz words I used didn't really pull me up a
lot of specific information. :)
Thanks,
Mandy

RE: [M_H_E] Some questions while I "patiently" wait for my daugther's follow up

2007-08-24 00:26:54

Hi. I am 33 and have never had surgery. My mother chose not to remove any
tumors because she didn't want me to have scars on my legs. I'm not sure if
that was wise or not. From what I've been told you are always subject to
more tumors popping up but they mostly form during the growing years. I
have large ones around my knees that hurt quite often, but usually an advil
& a heating pad take care of the pain. I have one leg that is longer than
the other (common with MHE from what I understand) as well as uneven toes on
one foot (also common from what I understand) No one in my family has MHE.
I live in Texas and am searching for a new dr. if anyone has any info please
let me know.

Re: [M_H_E] Coincidence

2007-08-23 23:34:17

Hello,
For me the only think that works for nerve pain is Cayenne pepper cream.
Basically, the cream tricks the skin into feeling the burn of the peppers,
thus making the nervous system forget about the other pain. The only
problem is that if Bry is really little this might not be such a good idea.
My nephew liked this solution just fine, but he is all snips and snails.
There are some products that contain smaller amounts of the right chemical,
i.e. capacian. It might be worth trying out on yourself, to see if this is
apropriate for your child.
Warm regards,
Christina (who is much happier today)

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[M_H_E] Coincidence

2007-08-23 09:01:32

Hello all,
I spent the weekend reading posts off and on....about surgery and nerves
and pain management... Well...Bry gets off work after school, her dad picks
her up and brings her home....she sits on the couch and is in tears....The
nerve that had given her trouble pre surgery has been aching her all
day....mind
you this is the child who cried twice, both post surgery when she HAD to get
out of bed and when they pulled out the drain.....After thinking it
over...not wanting to rush to Shriner's I realize that if there isn't anything
"wrong" that we will be looking at pain management....While my heart has ached
reading posts here...I now see her dealing with some of the same issues....
So, any "tricks" out there for the nerve that runs down the back of your
leg, below the knee? I know when she had "rib" aches from the bumps catching
muscles, she would lie flat on her back...the only thing that helped today
was ibuprofen, and I don't want her relying on pain meds completely....
Ok I feel better after getting this off my chest...she is a lot stronger
than she ever realized and I know this will only make her stronger!!!
Kristine
the compulsive optimist
************************************** See what's free at http://www.aol.com.

Re: [M_H_E] Spontaneous Mutation.

2007-08-23 05:36:37

Corinne,
My daughter is the only one we have found with mhe and we have asked
great-grandparents. Of course that doesn't mean there isn't someone with a
very
"mild" case. Hmmmm think I need to go poke around her younger brothers ...lol
************************************** See what's free at http://www.aol.com.

Spontaneous Mutation.

2007-08-23 01:27:40

In a message dated 5/29/2007 5:18:34 PM Pacific Daylight Time,
kaseyroo12345678910@... writes:
Neither my husband nor myself have any signs of osteochondromas and
have never heard of any of this until last week. Does anyone have a
case of spotaneous mutation? Or is this something one of us could
have and just not know about?
I have MHE and passed it on to two of my three children. I am the first in
our family to have it. I have three siblings that don't have it and lots of
Aunts, Uncles and cousins. Nobody has it but me. And now my children. My
son has chosen not to have children because of the disease. My daughter with
MHE hasn't found the right guy yet..so my only grandchildren are from my
daughter who doesn't have MHE. The grandkids have not been diagnosed with it.
I have never heard of someone being a carrier of MHE but I think someone
posted a few years ago about thinking she was the only one in her family with
MHE but later they found one or two tumors on her brother...small and not
bothersome.
Corinne
************************************** See what's free at http://www.aol.com.

Re: Scapula problems

2007-08-22 13:56:11

Chistine, my son, George had a bump under his scapula that was
slightly larger than a golf ball...this is on a smallish 7 year old!
His scapula stuck out like a wing. He almost never complains of pain,
but after the bump was removed and the shoulder healed a bit, I
noticed an increase in his appetite and improvement in his general
mood. He felt better even though he never admitted to feeling bad.
I'm not sure if that is useful to you, but I hope it is
Rebekah

Re: I'm not a doctor, but avoid surgery at all costs!!

2007-08-22 10:06:06

Dear Deena
I like the way of your saying, it's just strait forward to express
surgery is not an easy way-out to escape current problem. I can
agree with your opinion and I myself do the similar way of your hot
pool therapy on daily base. It's really true heating body or the
part with MHE, such as knees, elbows, shoulders,...etc, is effective
to get the dull pain mild or to get it completely disappearing. We
Japanese have a traditional custom to visit such hot pools, we call
ONSEN, to ease various kinds of health disorder, including broad
band pain care. So in that point of view, your saying is quite
reasonable at least for us Japanese.
O.T.
JAPAN

Re: [M_H_E] Scapula problems

2007-08-22 05:37:06

((((((Christina))))))) I wish I could help but all I can do is send my
thoughts to help you to feel better.
Kristine
************************************** See what's free at http://www.aol.com.

Scapula problems

2007-08-22 04:02:27

Hello,
There is something liberating inthe phrase MHE sucks! To speak
truthfully, I have been feeling a bit blue myself this week. Last
Sunday, I was walking to get my coffee, and I suddenly felt as if I
were hit in the back by an arrow. I tried to sleep it off, and the
severe pain abated leaving in its wake a general ache and some
stiffness, with only intermittent bouts of intense burning pain. I
went to the doctor on Wednesday for a follow-up on another injury and
was diagnosed with muscle strain due to scapular insufficiency. The
doctor said that my scapulae were winged and so this was causing me
problems.
I know that I have a huge osteochondroma underneath my scapula and so
it does not surprise me that I would have problems with this joint. I
was also told that surgery on this area was absolutely out of the
question. I got a prescription for physical therapy and that was
that. While I did not like to be told that I would have to wait so
long to get relief from my symptoms, I also was happy that this was
simply a bad case of muscle strain.
However, the intense pain returned on Thursday, abating somewhat
through the day on Saturday. I tried to call the doctor and was told
that there was a huge conference and so this was not a good day for an
injury and that no one was available to address my injury. The pain
was so bad that it made me nauseous and dizzy, and I am afraid for it
to come back. I almost went to the emergency room on Friday, but
thought that they would treat me poorly and that I would only be
wasting my money. I spent all day Saturday at the movies, and while
this was a nice distraction, and while it normally helps to distract
me from my symptoms, it did not help me much this time.
While I have experienced pain before from MHE, this is the first time
that I have been frightened by the quality and intensity of the pain.
This was even worse than the nerve pain I experienced after leg
surgery and was comparable to pain that I experience from kidney
stones (maybe not quite as bad). I have decided that my problem can
not be mere muscle strain. I strain my muscles all of the time, but
never have I had this type of pain.
I guess my question is.... Does anyone else experience this problem?
What did you do about it? Has anyone heard the term scapular
insufficiency? I really need to deal with this before it brings my
spirits down....
Thank you.
Warm regards,
Christina
--
Please visit my online gallery at:
http://www.digitalimagecafe.com/member_profile.asp?member=kalavinka
or at:
http://www.betterphoto.com/gallery/gallery.asp?memberID=158280

Re: [M_H_E] I'm not a doctor, but avoid surgery at all costs!!

2007-08-21 13:45:24

I am so sorry to hear of your horrible experiences with surgery. I am
curious though. When Bry was first diagnosed and the doctor told us of
possible
future options he did say surgery. He also said that the bumps would only be
removed if they caused extreme pain or mobility problems. He also said that
if the surgeries were to be done while she was still a child and growing that
they would put a seal of wax of some sort over the spot on the bone to
prevent further bone growth. Is this something any of you have heard of? I
know
they didn't use any with Bry's last surgery basically because they feel she is
done growing. I was just curious if this is something you had heard of.
Kristine
************************************** See what's free at http://www.aol.com.

Re: Adult son needs help

2007-08-21 10:19:04

I had a tumor on my ankle that encompassed the nerve. It was very
painful and occasionally if I moved wrong it would give me
a "shock", like when you hit your funnybone, causing me to fall down
(very dangerous on the stairs). Anyway no doctor would touch it
because of fear of nerve damage. Finally, when I was 32, I found a
quack surgeon who had no such concerns and lopped it off. The pain
and the shocks disappeared, but I was left with a case of drop foot.
Let me tell you, paralysis is the worst. Because the foot wouldn't
respond to my commands, the foot kept flopping this way and that,
even when I was sitting or lying down, causing pain from muscles
being stretched in ways they shouldn't. I had tremendous problems
putting on my shoes or socks, and walking was difficult, sort of a
shuffle. I was told I would never recover and would have to wear a
leg brace for life.
But you know what? After about 6 months, I began to move my foot a
little, and after a year, I had a range of motion comparable to what
I had before. 15 years later, my foot is still a little numb, but I
don't have any restrictions of movement. Best of all, the pain and
the shocks never returned.
So think long and hard before you attempt this surgery. Drop foot is
really unpleasant. However, the body is still a mysterious organism,
and miracles do occur, as nerves can repair themselves. But they do
so imperfectly, and they do so very slowly.

I'm not a doctor, but avoid surgery at all costs!!

2007-08-21 07:33:14

Note:
This is my own personal opinion. I am not a doctor. I am not in any way
affiliated with a medical practice. This is in no way giving medical advice. I
just need to vent and share my experiences.
That said, I stay away from surgery at all costs. Here is a bit of why:
1) My bones grow back. FAST and furious, any time they are cut. Luckily, I
have a really nasty bone/keloid on my wrist that I got when I sliced my wrist
open falling through some glass. The bone even took the form of the stitches,
so you can feel the actual bone growth through the skin. I tell the surgeons
"my body heals trauma to the bone with osteoblasts--in other words, with more
bone cells." They feel the bone, nod, get some colleagues in to feel the weird
bone, nod again, and leave me alone. I am in a wheelchair now because doctors
cut out tumors on my leg and the tumors grew back along the cut shaft. Then they
fractured, leaving me with bone shrapnel embedded in muscle.
2) I can not find it at the moment, but a couple of years ago there was an MHE
study. It stated that 75 percent of the time, people had MORE pain and LESS
mobility after surgery. This makes surgery a 1 in 4 shot of getting better.
Anecdotally, My mother had surgery on her hip and knee and the pain grew much
worse rather than better. I am not willing to play those odds with my body.
3) Find other options. Get with a good pain doctor (See Dr. Barre at
303-431-0755 if you are anywhere near Colorado. Some of her patients fly in
from California, Montana, etc. She is worth it--she understands pain management
and works with a broad range of traditional western meds and accupuncture,
accupressure, etc.) I have also found relief for arthritis in a hot pool
therapy, MSM, glucosimine, etc. The hot pool therapy is the best. Please
please please before you have surgery, find a hot pool (preferably one for
arthritis--look for them at hospitals, rehab centers, some towns have them, and
call Easter Seals). Go to this pool every day for one month. Then decide if it
helps. It won't cure my arthritis, but at least I can keep going.
Please, surgery is like suicide--it is a permanent choice. Before you do it,
exhaust all other options.

Re: [M_H_E] Hello! Randy here - formerly from NC, now NJ

2007-08-21 05:15:12

Randy, glad to hear that you're employed and that
you're our neighbor now. We remember meeting you at
Susan SWynn's gatherings, and hope to see you at the
gathering coming up on July 21.
Audrey & Gerry Feldman (Susan's parents)

Re: [M_H_E] Adult son needs help

2007-08-20 12:23:55

Corinne,
I don't know if this will help but it might be worth looking into. As
I've stated recently, I am in Salt Lake City. The Dr. I have been referring,
Dr
Randall, is a resident at The Huntsman Cancer Institute and Primary
Children's Hospital. I don't know what he offers as far as mhe surgeries, my
daughter was referred to him by her Shriner's Doctor who also works with Dr
Randall
at Primary's, but her surgery was also very detailed as the growth had
entwined several nerves, veins and vessells into it. They too were worried
about a
possible "drop foot" outcome but she has no problems at all! It might be
worth looking into to get in touch with him and see what he can do to help.
Salt Lake is only about 15 hours from So Cal so not too bad. Good luck
and I hope this helps
Kristine
************************************** See what's free at http://www.aol.com.

Adult son needs help

2007-08-20 09:57:47

Hi everyone,
I haven't posted in awhile so I am sorry for just jumping in like this. My
son (age 32) has MHE along with other physical problems - the poor guy has
gone through not only many MHE surgeries but he has a connective tissue
disorder that has caused him to need a very involved intestinal surgery and
several
hernia repairs over the past few years. Anyway, he doesn't have
insurance...that's a long story. He was denied Social Security Disability
because he
hasn't put enough in the system (because when he has been able to work he
worked
for temp agencies - they don't put enough in the system).
He has a growing tumor that has fused his fibula and tibula together. The
tumor is running near a major nerve and the doctors he saw last year when he
had HMO insurance would not touch the tumor because of the risk of him ending
up with "drop foot" I paid for him to see the surgeon I used for my last
few surgeries and he verified that prognosis. My son is in a lot of pain and
tries very hard to be a normal functioning adult but he is getting so
discouraged now.
I need a reference to a good Orthopaedic doctor in Southern Californa. I
would like to find out how to get my son medical care through some disability
program but if push comes to shove, I am willing to go into debt to get him
the surgery he needs by a reliable surgeoin. My son read of a skeletal
disorder clinic at USC or UCLA but I can't find one on the internet. I know
that
most of you are dealing with your young children with this disease - I have two
adult children with it (my first daughter didn't get it...I was the first in
my family to have it and none of my three siblings or many aunts, uncles or
cousins have it).
I thought dealing with the disease in my children was hard when they were
going through surgeries during childhood but at least I could cover them under
my (or my husband''s) medical insurance back then. Now I feel helpless.
Even though my son is an adult - he is still my child. I still feel the same
protective motherly feelings. I still hurt when he hurts. And yeah, I do feel
guilt because I brought him into this world and he got MHE from me only his
is much much worse. Mine is bad...I have had over thirty surgeries but my
son's condition is worse.
It seems to me that if my son's tumor has grown in the last year to the
point it fused his fibula and tibula - it's not unlikely that it will continue
to
grow. It is dangerously close to that nerve so I imagine he has the risk of
developing the "drop foot" whether he has surgery or not. Surgery can cause
it but a growing tumor can cause it too - at least that's what I think. No
doctor has addressed what would happen if he just kept the tumor in him. I
also am afraid that their is a risk of breaking the fibula or tibula if my son
moves wrong. If they are fused and they are supposed to move
independently...doesn't it make sense that they might break? Especially since
he has had
surgeires on both the bones and the removal of tumors that go deep in the bone
compromise the strength of the bone.
Now reading on this list of people that had a malignant MHE tumor...I am
scared to death!
Any ideas out there...I really need to help him.
Corinne
************************************** See what's free at http://www.aol.com.

: [M_H_E] Research and info I've found

2007-08-20 03:50:21

Hello again...lol....I did some digging and was able to find a couple of
things. Here are the links.
_Chondrosarcoma of Bone_
(http://www.sarcomahelp.org/Newsletters/V03N01/Chondrosarcoma/chondrosarcoma.htm\
) This one has a lot of info on bone cancer
but also goes into a little bit of detail on mhe, ya gotta read down about half
way to find it. It's not too medically worded but Latin knowledge is
helpful...just kidding.
_Multiple Hereditary Exostoses and Chondrosarcoma, the genetic connection_
(http://members.tripod.com/MOONROSE_22/)
This one has a personal story from someone with mhe
I hope this helps, it did me. And with most research, I'm sure there are
articles out there that will dispute all of this. But, with Bryana getting
older I think I'll side on the caution side and make sure she is checked out
often as suggested. This personal story also shows how far research and
treatment has come over the years!
************************************** See what's free at http://www.aol.com.

RE: [M_H_E] Pain.

2007-08-20 00:37:58

Hello Ruta, Yes I can so relate, I have MHE as do my 2 boys Steph (18
yrs) and Jack (12yrs). Both Steph and I experience pain in the area you
mention to the point that it is difficult to walk or drive and sit. I
have seen a spinal specialist who did not shed any light, I have another
appointment for another opinion in 3 weeks and am now waiting for Steph
to see a spinal specialist in 2 weeks at the Childrens hospital which I
am hoping will give some answers. So at the moment Steph has osteopathy
on his back and neck which gives him relief for 2 days or so, but we
cannot afford more than one treatment.Will post when I find out anymore
information. At this stage we both try and do various stretches on the
floor, and try and vary the time limits we do each activity.
Love and Peace
Nathalie ( New Zealand)

Re: [M_H_E] Kids in Chicago

2007-08-19 16:02:08

Rebekka, Just wanted to let you know that there is going to be an MHE Gathering
on July 21st in Waterford, Wisconsin sponsored by The MHE Coalition and hosted
by a family with an 11 year old boy who is very anxious to meet other kids with
MHE! Here's info from the website (which mentions that they're not far from the
Chicago area). You can visit the Coalition website (www.mhecoalition.org) and
get further details in the gathering section, or contact Kris for more info...
We'll be hosting a gathering at my home in Pine Island, NY on the same day!
Kris and I both hope to hear from many of you that you'll be attending!
Susan Wynn
mheandme@...
"Motels/Hotels for Wisconsin Gathering Gathering Location: Waterford,
Wisconsin (Southeast Wisconsin). For more information, email Kris at
mhegathering@....
Waterford is approximately 20-25 miles south from downtown Milwaukee. We are a
small rural community, with approximately 6500 people. There is one hotel in
Waterford, and it is only a few years old, The Baymont Inn & Suites. I have also
included 3 hotels that are located 18 miles from Waterford, in New Berlin and
Brookfield (suburb of Milwaukee, nice, safe area). Via the freeway it would only
take about 20 minutes to get to our home. They are listed below. If anyone would
like me to check rates for them I would be happy to. Milwaukee has a very nice
zoo, and beautiful art museum. We are also not far from the Chicago area and
attractions in Northern Illinois. If anyone would like to make a vacation out
of visiting Wisconsin (from out of state), I would be happy to fill you in on
different things to see and do. We are approximately 2-1/2 hours from the
Wisconsin Dells, a huge tourist town, filled with wonderful indoor/outdoor water
parks..."
geoampersand <rebekahpersaud@...
Hi group, I was wondering if there are any other families on this
group with kids who have MHE, and live in Chicago on the NW side? I
would like to have Georgie meet someone else his age, or close to it
who has similar issues. He is a nine year old boy, and we live right
in the city. Maybe a small group could get together at a park or
something this summer.
Rebekah

Kids in Chicago

2007-08-19 11:30:31

Hi group, I was wondering if there are any other families on this
group with kids who have MHE, and live in Chicago on the NW side? I
would like to have Georgie meet someone else his age, or close to it
who has similar issues. He is a nine year old boy, and we live right
in the city. Maybe a small group could get together at a park or
something this summer.
Rebekah

Hello! Randy here - formerly from NC, now NJ

2007-08-19 01:59:08

Hi folks,
I haven't been in contact with the group in quite a while. I spent a
year unemployed. During that time all I could do was focus on getting a
job. Well, now I've got one. I'm no longer in North Carolina, but in
Northern NJ. I sure would like to hear from some of the folks I have
either met in person (mostly at Susan Wynn's 2003 gathering and in 2005
trip to So. Calif). Joel D., Jimmy B., Susan W., Teresa S., Mike K.,
Nancy P., etc - I hope to get a chance to meet up with you again soon!
You're in my thoughts,
Randy

Pain.

2007-08-18 20:49:30

Hello all dear people,
I have joined this group one year ago and it is really interesting to read. But
now I have one question. I feel quite big pain in my coxa (I am not sure if it
is a right word), especially when I walk. I have never had problems with it
before and the pain is really strange. Have you ever had smth similar? Can MHE
affect it? Painkillers don't help me a lot and now I have exams time, so I
don't have time to go to doctors. and here, in Lithuania, I don't know doctor
where I could go, because when I was a child, I have a doctor, but when I am an
adult, I don't have any doctor now.
I had 14 surgeries before. I am 19 year old.
Ruta

Re: Should I allow my doctor to break my arm?

2007-08-18 18:19:22

Sir.
If I were you, I never visit the doctor, rather seek 2nd/3rd opinion
first. Cause it's the most important to know where the pain come
from currently.
The possibility is serious if the previous surgery somehow damaged
your nerve fiber near by, or related tissue around it. This is
because it means the doctor may not have proper skill to handle such
a difficult condition or can't deal the situation.
Therefore, unfortunately, it may happen once again. Some surgeons
here in Japan are also similar, knowing nothing MHE but thinking
only cut it out, simply much like a butcher level, so I've heard the
pain has increased after the removal surgery.
Take care!
O.T.
JAPAN

FOP mystery solved

2007-08-18 10:25:58

http://www.washingtonpost.com/wp-dyn/content/article/2006/04/23/AR2006042300414.\
html
Scientists Solve Bone Disease Mystery By VERENA DOBNIK
The Associated Press
Sunday, April 23, 2006; 10:57 PM
NEW YORK -- Scientists have discovered a mutant gene that triggers the
body to form a second, renegade skeleton, solving the mystery of a rare disease
called FOP that imprisons children in bone for life.
The finding, reported Sunday, may one day lead to development of a drug, not
only to treat the rare bone disorder, but more common bone buildup related to
head and spine trauma, and even sports injuries, the researchers said.
In this handout photo provided by the University of Pennsylvania, a CAT scan
showing the back of an unnamed 12-year-old patient of Dr. Frederick Kaplan,
showing bone formation typical of FOP, is shown. Scientists have discovered a
mutant gene that triggers the body to form a second, renegade skeleton, solving
the mystery of a rare disease called FOP that imprisons children in bone for
life. The finding, reported Sunday, may one day lead to development of a drug,
not only to treat the rare bone disorder, but more common bone buildup related
to head and spine trauma, and even sports injuries, the researchers said. (AP
Photo/University of Pennsylvania and Nature Genetics) (AP)
Biotechnology Researchers and regulators are reshaping the landscape
of science, medicine and health, engendering hope -- and disquiet -- for the
future of humanity.
Gene Therapy Used to Cure Mice Blindness
States Balk at Cancer Vaccine Mandate
Too Much to Carry?
FDA Panel Supports Expanded FluMist Use
U.S. Health Advisers Say FluMist Is Safe
More News
var technorati = new Technorati() ;
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Mystery','http://www.washingtonpost.com/wp-dyn/content/article/2006/04/23/AR2006\
042300414.html','NEW YORK -- Scientists have discovered a mutant gene that
triggers the body to form a second, renegade skeleton, solving the mystery of a
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setTimeout('update_delicious_form(delicious_cookie)',1) "We've reached the
summit," said Dr. Frederick Kaplan, an orthopedist whose team at the University
of Pennsylvania School of Medicine pinpointed the cause of FOP, or
fibrodysplasia ossificans progressiva. The disease is believed to afflict only
2,500 people worldwide.
The research was reported in the online edition of the journal Nature Genetics
by Kaplan, geneticist Eileen M. Shore, and their Penn colleagues, with
contributions from researchers in Australia, Brazil, France, Germany, Great
Britain, the Netherlands and South Korea.
After 15 years of work involving study of the genetic makeup of
multigenerational families around the world, scientists at Penn's Center for
Research in FOP and Related Disorders found that FOP is caused by a single
mutation in a gene called ACVR1. This devastating glitch means that tendons,
ligaments and skeletal muscle begin painfully transforming into bone, sometimes
locking joints overnight.
The genetic twist that leads to FOP, Kaplan said in a telephone interview, "is
relevant to every condition that affects the formation of bone and every
condition that affects the formation of the skeleton."
The researchers believe it should be possible to develop a drug that would
block or bypass the genetic trigger of the extra bone growth. Eventually, it
might block the unneeded bone that occasionally forms after hip-replacement
surgery.
"In the next five years, this might open up the possibility of developing
drugs that would be effective in stopping bone formation," said Dr. Victor A.
McKusick, a genetics pioneer and professor of medical genetics at Johns Hopkins
University School of Medicine in Baltimore.
He said the FOP genetic breakthrough is likely to shed light on other related
diseases.
"The first thing that comes to mind is osteoporosis, which is the flip side of
the coin when it comes to bone formation," he said. "When one learns about one
side _ extra bone growth _ it helps you understand what goes the other way" _
bone breakdown.
Stephanie Snow, a 15-year-old with FOP, hopes the finding will lead to a drug
that can stop the stiffening damage to her body, which includes a fused,
immobile neck, arms she can't raise and problems with hip mobility. The Santa
Maria, Calif. teenager dreams of becoming a veterinarian.
"If they develop a pill we can take every day, I can move and do more things,
and it might be easier for me to become a vet, like I've always wanted to," she
said.
FOP patient Jeannie Peeper, 47, of Winter Springs, Fla., is totally
immobilized but still a leader in the International FOP Association that
represents patients and their families.
"The gene discovery is an extraordinary gift to the FOP community and a
monumental milestone on our road to a cure," she said.

Re: Dealing with MHE.

2007-08-18 09:25:52

Christine, I really value your input. It's true when my little guy
was diagnosed, we were not even all that concerned. Our pedatrician
was facinated because in her 30 or so years in medicine, she'd only
ever heard of it. The funny thing is, after he had his full skelatal
X rays, and the bumps were pointed out, we were like...oh, yeah,
there is a bump there, and oh, look, his shoulder blade really
sticks out a lot, We had NEVER noticed. (in my defence, he is one of
four kids,they have to pretty much be on fire to get scrupulous
attention, haha) We feel glad that he's had only two surgeries so
far, with one more coming in the fall, but really sad when we see
him struggle. He can't tie shoes, Thank goodness for velcro! He
can't sit for a long time, and his ankles have days when they're not
so good. I wondered before if other kids with this disease are given
pain killers regularly, just to get through the day comfortably. He
refuses to take medicine most of the time, but still....
I am happy to have joined this group, I keep encouraging him to
check out the other kids' stories on the bumpy bones club, but he's
not interested yet.
have a great day!
Rebekah

Re: [M_H_E] Dealing with MHE.

2007-08-18 00:50:13

Hi, Rebekah! It is my understanding that solitary osteochondromas are 1%, and
my doctor told me that multiple osteochondromas have a 15-20% chance. They're
always changing the number, though, so I'm not sure what the probability is at
now:).
geoampersand <rebekahpersaud@...
Mandy, I'm glad you have found this group. I am a new
member myself, and I have already learned so much just by 'listening'.
I, too have a child with spontaneous mutation MHE. I just say we have
MHE, hold the H. I had NO idea what we would be in for when we were
first diagnosed, we just thought it was interesting. Mind you, this
was a few years ago and resources were slim. We dealt with a
prominant Orthopaedic doctor at Chicago's Children's Memorial Hospital
who made us wait four hours at our first appointment, and in response
to questions, wrote down some medical website, and said, "look it up".
(There was nothing about MHE there, by the way) We have since learned
a lot, and had some surgeries, and now Georgie is a happy, healthy 9
year old who simply isn't as fast as the other kids, but doesn't seem
to care.
To the group; it is my understanding that cancer in MHE tumors is
extremely rare. It occurs primarily in bumps in the pelvis, mostly in
boys, and in less than 1% of cases. IS this right? That is what I
read, so I really haven't even worried about it.
Have a nice day everyone, and thanks for all the info.
Rebekah
"Everyone falls-- but not everyone rises..." Maren Ord "World More Perfect"

Re: [M_H_E] Should I allow my doctor to break my arm?

2007-08-17 18:53:41

Hello,
I would get a second opinion on this. I was also born with a short ulna and
have experienced some pretty severe problems because of it. I also have
bowed arms and have looked into surgical intervention. Last year I was told
that I was not a good canidate for limb lengthening surgery because I am an
adult. Instead, I had some of the osteochondromas removed and this did the
trick. Your situation is probably different. However, your doctor sounds
like he can not give you a probable outcome, and so I think that another
medical point of view would be a good idea. It sounds pretty dramatic to
me.
I wish you well.
Christina

--
Please visit my online gallery at:
http://www.digitalimagecafe.com/member_profile.asp?member=kalavinka
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http://www.betterphoto.com/gallery/gallery.asp?memberID=158280

Should I allow my doctor to break my arm?

2007-08-17 14:59:31

Hi,
This is my first message to this board. I've been following the
discussions for about seven months. I'm 31 years old and I live in
Sweden. I was diagnosed with MHE at the age of two and have had about
15 surgeries. Now I'm interested to know if anyone else has had the
same experiences as I'm about to have.
When I was about 12 years old my right forearm bowed due to a short
radius bone. I didn't have any arm lengthening procedure done, because
my doctor at that time said it was a too experimental procedure to do.
As a result the radius head got dislocated in my elbow. I didn't have
much problem with that until I had a son two years ago. Carrying him
caused a kind of arthritis to my elbow and thus a lot of pain. The arm
specialist I'm currently seeing said that the pain would go away if
the radius head was removed. The surgery was done last September.
Unfortunately he was wrong. My radius bone was bent in an S-shape, so
it didn't go back into the elbow joint. In addition I got problems
with my right wrist after the surgery. I haven't been able to take
care of my son, do housework or to work after the surgery. I'm in
constant pain.
Now my doctor says that he wants to do another surgery to help me get
rid of the pain. He wants to break my forearm in three or four places
in order to straighten the bone and try to put it back into the elbow
joint. He says that he can't guarantee any results, but hopefully I
won't be in pain when everything has healed. He also says that the
wrist will probably become unstable and I won't be able to use it as I
did before the surgery last September. This kind of surgery is very
experimental and has never been done in Sweden before, but it is his
best guess to help me. Without the surgery I probably won't be able to
continue my job (I sit in front a computer).
Has anyone else heard about this kind of surgery? How did it turn out?

Dealing with MHE.

2007-08-17 10:35:43

I want to say to Mandy, I'm glad you have found this group. I am a new
member myself, and I have already learned so much just by 'listening'.
I, too have a child with spontaneous mutation MHE. I just say we have
MHE, hold the H. I had NO idea what we would be in for when we were
first diagnosed, we just thought it was interesting. Mind you, this
was a few years ago and resources were slim. We dealt with a
prominant Orthopaedic doctor at Chicago's Children's Memorial Hospital
who made us wait four hours at our first appointment, and in response
to questions, wrote down some medical website, and said, "look it up".
(There was nothing about MHE there, by the way) We have since learned
a lot, and had some surgeries, and now Georgie is a happy, healthy 9
year old who simply isn't as fast as the other kids, but doesn't seem
to care.
To the group; it is my understanding that cancer in MHE tumors is
extremely rare. It occurs primarily in bumps in the pelvis, mostly in
boys, and in less than 1% of cases. IS this right? That is what I
read, so I really haven't even worried about it.
Have a nice day everyone, and thanks for all the info.
Rebekah

Re: 2 Two year olds with MHE

2007-08-17 04:57:58

I definitely understand what you are saying. I agree wholeheartedly
in fact. Obviously as a parent, my job is to get her through life as
happy, healthy, and well-rounded as possible. So, OF COURSE I am not
letting her see any of these feelings that I'm currently having. And,
I expect that as I work through the stages of grief that I'm
experiencing, that I'll become my 'normal' optimstic self again.
At the same, remember where I'm at in this entire process. I just
found out last week that my 2 year old baby who's, up until last
Monday, biggest health issue was some acid reflux when she was a
newborn, has a potentially serious and rare genetic disorder. I
don't know any details about her case, the severity, if she does in
fact have one of the more risky and malignent types, what sorts of
treatments and therapies we can try to help alleviate future pain and
problems...... I'm scared, I feel guilty that somehow this is our
fault. I don't want to think about my child possibly having cancer,
or being in such severe pain that she can't tie her shoes, or having
severe deformities and have emotional stress because of it.
So, while my message implied that I'm being completely pessimistic,
that is not really the case. At this point, I'm setting myself up
for worst case scenarios so that hopefully when we do get some
answers from the specialists in June that they give us something more
positive than the worst case scenario. Or even if they do give us
worst case scenarios that I'm somewhat emotionally prepared for it so
I don't waste the entire appointment being an emotional mess. Its
probably dumb, but its always how I deal with things. My hubby on
the other hand just says everything will be fine....
I realize that once we get a handle on the reality that is in front
of us, whether it be MHE, Ollier's, or some other form of dysplasia,
that our definition of 'typical' is going to change a little. And,
that we'll do our best to leave her as unscarred as possible
throughout this ordeal - mentally and physically. It just makes me
ill that this is happpening - I'm still working to get out of denial
and anger at this point. I'll eventually make it around - and then I
will be able to see something other than the negatives.

Re: [M_H_E] 2 Two year olds with MHE

2007-08-16 23:01:10

I'm so sorry. Seriously I don't know what to say either. It just makes me want
to throw up. I'm not sure if my Kiersten does in fact have MHE or some other
dysplasia. I just want some answers and some treatments! It makes me ill to
have to just sit here and wait. She seems fine and I guess that is a blessing.
But, to think about how terrible her future could be makes me so angry and sad.
I just want to hold her and rock her and comfort her for the pain that she may
experience years down the road. I know that every person has hard times, but
man life is hard enough without this... It just makes me cry and cry and I
don't even have a for sure diagnosis yet. Its just what I think she is going to
have based on the doctor's opinion to my pediatrician. I'm just hoping and
praying that it is something else - something mild, something treatable that
won't impact her entire life. At any rate, sorry I'm rambling.... I am so
sorry that your babies have to go through
this. Its just not fair as stupid as that sounds. They are just babies.
Laura Dedrick <lauradedrick@...
post, but I had to comment. I have 2 two year olds that
have multiple osteochondromas. I don't even know what to say next. We
have been to many specialist appointments and I feel as though we are
getting no-where fast. My husband and I don't have a history of it either.
Laura Dedrick, mother of triplets Holly(2), Lauren(2), Dane(2) & Nina(5),
wife to Bob(14 years)
_____

2 Two year olds with MHE

2007-08-16 17:20:07

This is my first post, but I had to comment. I have 2 two year olds that
have multiple osteochondromas. I don't even know what to say next. We
have been to many specialist appointments and I feel as though we are
getting no-where fast. My husband and I don't have a history of it either.
Laura Dedrick, mother of triplets Holly(2), Lauren(2), Dane(2) & Nina(5),
wife to Bob(14 years)
_____

Re: New here - not sure yet if we belong

2007-08-16 01:30:27

Thanks for the welcome. We are in Virginia. We have our first
appointment with the pediatric ortho in Richmond. Then the follow up
with the pediatric orthos at John Hopkins in Baltimore. It seems
like I should start finding a pediatric ortho oncologist too.
I am definitely scared and feel alone at this point. My husband's
reaction is completely opposite of mine. He says it will be fine and
we can fix whatever comes our way. I like to be positive but I also
like to be realistic.
The research I've done really leads me to believe that she will be
diagnosed with MHE....or whatever acronym they choose to give it.
Now I have issues because my immediate reaction is to remove them
asap so that she can grow the way she would without them, avoid pain,
and avoid the risk of them turning cancerous. But, I read things
that make me fear that even if we get them removed that they might
come back. And, no where can I find the answer to my biggest
question...are the ones she has the only ones she'll ever have? I
get that they will grow until she is done growing, but will new ones
pop up or will she just have the ones she has already? Not to
mention the scariness of putting my baby under the knife and the
scars that will bring. But, I also feel like if I do the surgeries
now and if the growths stay away that she won't even ever 'feel' the
impacts as much as I feel like she could.
I don't remember where I read that thing about the knee - I thought
it seemed a little bogus, but I was kind of holding onto anything at
this point. A future of possible pain, numerous surgeries, possibile
deformities and the emotional stress this could bring, lack of
mobility....these were definitely not in my plans for my baby girl.
I am heartbroken about what the future may hold for her.
Sorry I'm rambling. I'm just so lost right now

RE: [M_H_E] New here - not sure yet if we belong

2007-08-15 23:55:07

Hi Mandy,
My name is JoAnn and I have a 13 year old and I also have MHE. When I read
about your daughter it took me back to my childhood. My finger also did the
same thing. At the age of 2 they thought that I had broken it and splint it
which didn't do much then cause me more pain. They later did more studies
and took a series of xrays and dx me with it. I was the first and only in
my family that has MHE. I didn't have my first surgery until I was 18
because back then they didn't know a whole lot about it. I am 34 now. When
I had my first son I would look at him pretty much every day, he did ended
up having it found out at 15 months old. My second child which is going to
be 3 next month doesn't show any signs of it as yet. If you would like to
talk email me I will email you my phone number. I don't want to post my
personal information on the list.
BTW welcome to the group.. Where do you live? I am in Minnesota
JoAnn
Minnesota
_____

New here - not sure yet if we belong

2007-08-15 14:18:26

Hi,
My name is Mandy and my just turned two year old daughter Kiersten
was diagnosed with osteochondrodysplasia last Wednesday. We took her
in to the pediatrician on Monday because her ring finger looked
broken or dislocated at the knuckle. The ped sent her to the
orthopedic and he took xrays of her hand. He said it wasn't broken
or dislocated and that he wasn't sure exactly what it was. He said
it was one of those things you study in med school but never see in
real life and sent her for a skeletal survey. We followed up with
him on Wednesday.
He showed us numerous points in her body where she has these growths -
her hands, shoulders, legs, feet, pelvis. He said he was not the
doctor to be treating us but referred us to a pediatric orthopedic
(we have that appt June 5th). He gave us the general d/x of
osteochondrodysplasia but said he couldn't tell us for sure what it
was. Apparently the radiologist report suggested it was Ollier's
disease or Maffuci syndrome, but the orthopedic told my pediatrician
that he thought they were osteochondromas not enchondromas. So -
with that....we are in limbo. I'm not sure what our final diagnosis
will be. I've got an appointment made with the pediatric orthopedics
at John Hopkins to get a second opinion on June 14th.
I'm scared and worried from all the reading I've done, but there
doesn't seem to be much I can do now but wait for a firmer d/x so I
know what we're dealing with.
I can feel the bumps in her legs and see and feel the ones in her
fingers - but not the ones in other places at this point. When I
googled MHE, I found something that said this d/x is only made when
the osteochondromas are in the knees and I don't see any in her
knees...just in her leg bones next to the knee.
Neither my husband nor myself have any signs of osteochondromas and
have never heard of any of this until last week. Does anyone have a
case of spotaneous mutation? Or is this something one of us could
have and just not know about?
Thanks
Mandy

RE: [M_H_E] arm fixator question

2007-08-15 13:37:55

Hello Angela, my son Jack was 10 yrs when he had an arm fixator, he is
now 12, due for some ankle surgery on Wed. My oldest boy, Steph 18, had
and still has a very bowed short arm, did not have the fixator procedure
done, they did break it ( he was 10 also at the time) and put pins etc
but it did not correct the arm and he still suffers greatly with it.
Hope that heps
Cheers Nathalie (New Zealand)

Re: arm fixator question

2007-08-15 05:50:18

Angela, When I questioned our Ortho's opinion, I got a second opinion
from someone else. In the end we changed doctor's completely to see
someone a little more proactive.
Also, how old is your son?
Rebekah

arm fixator question

2007-08-15 03:34:53

Just wondering for those who have had an arm fixator, at what age did
you have it put in? My son has about a five inch arm length
discrepency and the dr keeps saying to wait on doing anything. We have
another appt coming up and I wanted some imput from others in the group
that are fimiliar with this surgery.
Thanks
Angela

Re: [M_H_E] recovery

2007-08-14 19:45:24

Hang in there, Shelley. Wishing you a very speedy
recovery. Sounds like you're doing great.
Audrey & Gerry in Pine Island, NY
--- ohiovalleygirl71 <ohiovalleygirl71@...

recovery

2007-08-14 17:42:31

Hello everyone,
Hope all you mothers out there had a good mother's day yesterday. I
am sitting at home now while my hubby and the kids are at soccer
practice. I'm getting a little stronger every day since my surgery
one week ago. I saw my doctor on Friday and so far everything is
looking good. I can finally take showers again (can't tell you what
a relief that was-sponge baths just weren't cutting it). I'll be on
crutches for a while yet, but it's not nearly as difficult to get
around as it was the first couple of days. I went outside to watch
my husband and daughter wash my car the day after I got back, and
that nearly did me in. Now I can go a lot farther. The pain is
minimal compared to what it was before my surgery. I am so glad I
finally got this done. I go back to the doctor on the 24th of May,
and I will find out then, depending on how well I'm doing, if I'll
need physical therapy or not.
The kids have been very helpful to me since I came home. Jordan
likes to help me lift my leg up into the bed when I lay down. That
was pretty difficult at first, but now unless I'm really really
tired, I can manage it without having to physically hold my leg and
pull it up into the bed.
Well, I think it's time for me to go take a nap before they get home.
Shelly Muller
Utica, Ky

Re: [M_H_E] New Member Questions

2007-08-14 04:21:51

My Kenny has a hard time concentrating for sure he is seven years old

Re: [M_H_E] Lyrica??

2007-08-14 03:38:18

I have been taking Lyrica but don't feel a difference how long before it worked?
It has been about 12 days.
Alida

Re: New Member Questions

2007-08-13 20:38:37

Dear Rebekah san(this is Japanese courtesy);
Answer1:
My bumps get pain, not sharp but dull, once the part being exposured
in lower than 15 degrees Celsius atmosphere, therefore I need
supporters for both knees even now June, and using electric blanket
to keep my back/shoulder bones warm in sleeping.
Answer2:
I'm also none H patient. No other family members/relatives had have
bumps like mine. I am 55 years old mail and it's started 3 years ago
that the first bump started growing on my upper left jar.
Though the doctors in my city Nagoya, it has 2.6 million population,
including the chief doctor of the Cancer Center Hospital, said 'no
need to worry, it's just slowly growing at that part and never
spread', it did spread.
It spread to upper right jar soon and lower jars, then got the
shoulder, back, hip and reached knees, elbows and wrists.
From the beginning of the bumps growing, I've got fatigue so easily
and nowadays I can't keep on standing more than 3 hours because of
it. I've got MRI, CT, PET and X-ray check sometimes but no clear
cause found yet, except the lymph cells get slightly less numbers
recently. Of course I never have HIV or any other blood related
problems currently.
Hope this info. works somehow.
O.T.
Japan

Re: [M_H_E] mom's surgery.

2007-08-13 16:53:32

Glad your mom's surgery went well. Tell her we all hope she's feeling better
very soon! Thanks for posting to let us know...
Susan
(Pine Island, NY)
ohiovalleygirl71 <ohiovalleygirl71@...
Mom's surgery went well. She is feeling very sore.

New Member Questions

2007-08-13 09:10:20

Hi all, I am brand new to the group! My nine year old son, George has
MHE, and I am glad to finally have others to bounce questions off...the
doctor is always so busy! (He's great though, if you are in/near
Chicago, consider Dr. Dias)
Question: For those with MHE, how constant is pain in your life? My
son would rather pull out his teeth one by one without anesthetic than
take a medicine that tastes "YUCKY!" OK, I'm exaggerating, but not
much. He will NOT admit to pain, and I worry about him.
Question 2: For parents of MHE children, do yours have trouble
concentrating in school? He does, and I wonder how much of it is
distraction because of physical issues.
That's it! I would really appreciate any input. His MHE has no "H",
really, nobody else in our families have it, no history at all, even
with his three siblings.
Rebekah

mom's surgery.

2007-08-13 00:53:46

Mom's surgery went well. She is feeling very sore.

Re: [M_H_E] MHE: Braces

2007-08-12 21:01:21

Hello,
I found that braces for the most part increase my levels of pain. I think
this is because they do not accomodate my bumps. However, maybe you could
have something professionally fitted. This might be better than just buying
one at the CVS....
-C

MHE: Braces

2007-08-12 11:13:59

I was just wondering-- has anyone ever tried the use of a back brace to help
relieve discomfort, or to try to help with poor posture due to MHE? Or has
anyone tried wearing a knee brace to help with bowed legs? Has it been of any
help to anyone? My right leg, which is pretty bowed, pops when I walk, but I
really don't want to have surgery right now, so I'm thinking of alternatives, if
there are any. Thanks!
-Charissa
Deena Larsen <deenalarsen@...
I just tried lyrica for pain, as I hate being on the
narcotics. I want a life. I want to function. But I
also want to have some time when I am not in agony.
My pain management doctor suggested lyrica, and I
reallly liked it--it was so wonderful not to be in
pain!! But there are some side effects--I gained 20
pounds (not so good for the knees) in about a month.
And ALL pain was gone, so I embedded a sliver of glass
into my palm, burned my hand holding a hot cup that I
could not feel was too hot, etc.
Still...ask your doctor about this one...
http://www.lyrica.com/
Deena

Re: new date

2007-08-12 04:59:40

Hi. Shelly
I'm not sure whether you've checked blood check for the reason
persistent disorder. In my case, since I've got cold for almost a month
and still getting cough and runny nose, I checked the detail, so far 3
times, and found there a bit less numbers of lymph cells.
For I have no HIV or Leukemia, or any other blood related problems
currently, I'm thinking MHE may effects such immunity cell production
in bones, somehow in progress.
And if so, your surgery has to be carefully operated and must keep on
eyes even after the recovery. Yet I sincerely hope the all are going
well and get back your family life normal soon.
O.T.
Japan

Lyrica??

2007-08-12 00:38:59

I just tried lyrica for pain, as I hate being on the
narcotics. I want a life. I want to function. But I
also want to have some time when I am not in agony.
My pain management doctor suggested lyrica, and I
reallly liked it--it was so wonderful not to be in
pain!! But there are some side effects--I gained 20
pounds (not so good for the knees) in about a month.
And ALL pain was gone, so I embedded a sliver of glass
into my palm, burned my hand holding a hot cup that I
could not feel was too hot, etc.
Still...ask your doctor about this one...
http://www.lyrica.com/
Deena

Re: Introducing...

2007-08-11 19:01:34

Wow. She is too gorgeous. Congratulations on your beautiful little
darling.
-Christina

Re: [M_H_E] Introducing...

2007-08-11 12:15:21

Congratulations, Allison! March 28th is my sister's birthday. Glad to hear
everything went well and that you are both doing well.
Shelly Muller
Utica, Ky
auroradraconis <auroradraconis@...
Just wanted to say hello to everyone and announce the arrival of my
little girl, Kaira Josephine [:D]
She was born March 28, 2007 at 8:46 am and weighed 6 lbs 11 oz (she was
actually 13 days early) She is absolutely perfect!! I posted pics of
her in the photos section of the group (the album name in Allison in IL)
Anyway, just wanted to update everyone. As for me, everything is going
well. My MHE is hardly giving me any problems so I can't complain.
Hope all is well with everyone. Take care.
Allison in IL

Introducing...

2007-08-11 05:12:26

Just wanted to say hello to everyone and announce the arrival of my
little girl, Kaira Josephine [:D]
She was born March 28, 2007 at 8:46 am and weighed 6 lbs 11 oz (she was
actually 13 days early) She is absolutely perfect!! I posted pics of
her in the photos section of the group (the album name in Allison in IL)
Anyway, just wanted to update everyone. As for me, everything is going
well. My MHE is hardly giving me any problems so I can't complain.
Hope all is well with everyone. Take care.
Allison in IL

Re: [M_H_E] growing up

2007-08-11 03:12:10

Congratulations to you and your little man.
Audrey & Gerry in Pine Island, NY

growing up

2007-08-10 19:27:43

They grow up too fast. I spend so much time worrying about Kenny's future and it
is creeping up on me. He made his first holy communion the other day. He looked
so grown in his little suit. I was one proud mama. He had to recieve by mouth
because he can not turn his wrists over. He was nervous about being different
but he did fine in the end.

new date

2007-08-10 08:13:51

Okay, my new surgery date is Monday, May 7th at 2 pm. Hopefully I'll
be well enough for that one. So I sent my husband off to work today to
save his vacation time for next week. I'm feeling even better today,
but I'm still congested. Hopefully I can get rid of that by next
Monday.
Shelly Muller
Utica, Ky

Re: [M_H_E] going to reschedule

2007-08-10 04:36:32

Waiting is probably the most difficult party of
surgery. Hope the wait is short and the surgery
successful.
Audrey & Gerry in Pine Island, NY
--- ohiovalleygirl71 <ohiovalleygirl71@...

Re: [M_H_E] long day

2007-08-10 04:32:07

Praying for you, Shelly. It's about time for your luck to change! Mary
H.

going to reschedule

2007-08-09 20:33:57

Well, even though I am feeling better today, I am still pretty
congested, so I'm about eighty percent sure that my surgery will be
rescheduled tomorrow. I don't want to do it, but I probably don't have
much choice. My doctor's assistant is supposed to call me first thing
in the morning to see how I'm feeling, and I'm sure at that point she
will say that we'll reschedule the surgery. So I'll post agai