MS MHE

Alida,
You and your family are in my prayers. Have as much bottled water available as
possible.
Sending lots of hugs,
Barb & family

Hello my MHE family,
Well, we are stuck like Chuck. We can't get out. Shannan and Haley left
yesterday to go with John's parents to Livingston up north it took them 12 hours
for a regular two hour drive. People are running out of gas on the freeway. I
can't sit in traffic for 12 hours in 100 degree temp. We even had a flight to
Dallas this morning at 7:30 this was 1 am and we could not get airport in time
and it is only 30 away. They said it would take 8 hours. Traffic is at a
gridlock everywhere. People are running out of gas on the freeway.Passing oout
from
heat stroke and dehydrating. Wow our gov. officials were not ready again.
Scared in Texas,
Alida

Hi everyone;
I had my post-op visit today. I was scheduled with the assistant, Shelby,
but she was called away on an emergency. So I saw Dr. B., who was running
about an hour and a half behind schedule, I greeted him with, "Hi Shelby!"
It always feels good to start off with a little laughter.
The nurse had to take a double look at my file because she couldn't believe
I was there for a one week post-op on my ankle. I wasn't even limping. Dr. B
started to say that I could slowly go back to weight bearing...then shook
his head and said, "Never mind". LOL
He gave me some exercises to do every day. This was a new one on me... He
wants me to write the letters of the alphabet in the air with my foot every
day, from A all the way to Z. I just finished with Z and I have to admit
that it puts my ankle through a full range of motion gently, but
effectively. It is tired!
---Tessa
Olympia, WA

Way to go, Tessa!!!!!!
Audrey & Gerry in Pine Island, NY

Hi Annjørg;
Welcome!
My ancestors are mostly of German heritage. I've had Chele scan the members
lists for some of my ancestor's surnames in hope that MHE might be traced
through another decendant's line. However, so far no relative of mine living
in Germany has joined the group. (pout, pout) Good luck trying to reunite
with family here in the states!
---Tessa Schulze (maternal surnames: Schmitt, Mersch, Bohlig, Pinck and
Sames)
Olympia, WA

We'll be thinking of you all with prayers and love.
"Mom"Audrey & "Pop" Gerry in Pine Island, NY

Alright Chris, the best news I have heard in a long time.
Allison know what you sre going through , so sorry.
Allan- hope you are doing better.
Sorry so long before posting. I have been sick, better, sick,better
@#$#$%, I have had my Mother in Law here for two weeks going back and forth to
doctors for her back. And helping with Katrina people. Now it looks like we are
going to have to leave. We are surrounded by the ship channel, Galveston Bay and
the gulf. Not to say all the rivers(SanJacinto and Netches River. So we will
have to leave if it is a 4 or 5. So been busy getting stuff together.
Can't wait until Nov. to see everyone.
EVERYONE PRAY FOR US!
Hugs from Texas,
Alida

Hello everyone!
I am a norwegian girl diagnosed with MHE. I inherited this from my
grandmother and what I am wondering if there is any of you who know if
you have relatives from Norway? Why I am wondering about this is that
my grandmothers family all moved to the US and I do not know where they
live today.It would be lovely to come in contact with them to see if we
have all herited this illness.
Thank you for the attention!
Annjørg Opheim Heggseth
x

Charissa:
There is also a difference between an emergency C-Section, which I had
and a planned C-Section. I would not choose to have c-section again,
but I had an emergency c-section gave birth to twins 12 weeks early and
some of my pain discomfort and bad feelings come not from the c-section
but the trauma surrounding it. So my point is to be wary when you ask
for info on c-sections because there are often other factors that
influence a persons experience.
My dearest friend had three c-sections, after her first, she scheduled
each of the following children. She thinks that I was crazy to insist
on having a vaginal birth after a c-section. She never had a terrible
amount of discomfort, she planned the birth of her children to her
convenience and never suffered the pains of labor.
The bottom line is that no matter they came into this world my children
are my greatest joy and there is little that I would not have done to
bring them into this world. I always said there must be a hormone that
makes us forget any discomfort of pregnancy and birth or we would never
have a second child, and I had four.
Deborah Roff

Charissa,
I have had two C-Sections. The first was in 1985 this was an emergency
C-Sections because in all the wisdom of my 23 years I thought I knew more then
the doctors. My doctor had said from the 1st visit that I should have a
C-Section when I went into labor I refused to grant permission for the operation
19 hours of hard labor almost 48 hours total labor my baby went under distress
at this moment I wised up and within 16 minutes of my signature to grant my
permission for the operation my daughter was born. I tell you this to let you
know that doctors more often then not know better then you, so if they say you
need one you may want to believe them. After my daughter was born I was
exhausted but otherwise in good shape. My emotions were what suffered the most.
My second C-Section was in 1999 it was planned I was emotional prepared and I
was both emotional and phycially great after my son was born. I was out of bed
that night and ready to go home the next day. The difference was
amazing. I share this with you to let you know that your attitude plays a big
part in how you feel after your operation at least it did for me.
NP
Charissa Darland <ctr_allijo@...
Okay, so this is going to ask a very personal question, so please-- no one feel
required to answer. This has come up a little here and there over the years-- I
guess my parents were told that if I were to have kids, I would need to have
them all by c-section. Of course, that was when I was really, really little,
and maybe it's not true anymore, or maybe it is. It probably is. But that's
okay-- it's just that, the normal thing is for people to have children
naturally. When my sister was having her baby, she wanted to know what as much
as possible what it was going to be like-- be a little prepared. It wasn't as
scary for her if she knew what was going to happen. When I first learned that I
would have to have c-sections, I started to ask adults I knew, when they would
talk about having their kids by c-section, what it was like. They, not knowing
why I was asking, would tell me horror stories. Every once in a while, I would
tell them why I asked, and they'd be like, "Oh... well,
it wasn't that bad. I mean, it hurt, but..." So, I guess my message boils down
to this-- I have no idea what a C-section is like, other than it hurts, and you
can't do heavy lifting for 6 weeks. I've read some messages about people being
surprised in a C-section. In school, they only teach about a normal delivery--
they don't go into detail on what will happen in a C-section. So, if there's
someone out there who doesn't mind, could you please tell me what exactly a
C-section is like? Never too early to start preparing yourself mentally, right?
First, I'll probably freak out and say, "AH!!!!!!!!" then I'll get used to the
idea, and then I'll be able to face it. Or maybe I will just freak out-- I
don't know. Although I have no idea when I'll start having children, I just
don't want to be surpirsed. Thanks!
-Charissa from Indiana
21 years old
"Everyone falls-- but not everyone rises..." Maren Ord "World More Perfect"

Charissa,
No horror story here. I had a c-section with my son. I had been nervous about
it, but it turned out just fine. It was not bad at all post-op, and my advice
is to get an epidural FIRST before any of the pre-op, certainly before they
insert a cathader or shave the area for surgery. DEMAND THIS IF NECESSARY! I
didn't get my epidural first and in turn was VERY uncomfortable which in turn
affected how I was feeling. Instead of being excited about the birth, my
excitement turned to anxiety and put a damper on the experience for me a bit
because I was so consumed with how uncomfortable I was. I will most certainly
get the epidural first for my next child. At 41 weeks I was big as a house and
completely uncomfortable anyway, so I really didn't need anything adding to it,
if you know what I mean. Aside from that, no problems pre-op.
The incision is just below the hair line, below the bikini line, so yes you can
wear a skimpy bathing suit again, if you don't mind showing off stretch marks.
(heehee) The length of the incision is about 5 inches, which is amazing when
you consider that an entire baby is taken out of there! :-O My surgery started
at 8:00a and my son was delivered by 8:07a and I was in recovery less 20 minutes
later. During the surgery you can feel pressure but no pain, if you have the
epidural. With a spinal you feel nothing (or so I'm told). You can feel
pressure like someone pushing on your chest, almost like an elephant sitting on
you, but that is only for a few seconds while they are getting the baby out.
Again, there was no pain. When I say pressure, imagine someone just touching
your arm, and that is what I am talking about. You can feel the touch sensation
a bit, but nothing that hurts.
Afterwards, the doctor pumped in a lot of drugs before removing the epidural, so
that I would be fairly numb for a while. I was given as much pain meds as I
needed through the IV and when the IV was removed the next day I was given
darvoset or tylenol 3 for pain and I was sent home with darvoset and motrin.
The only thing that was "difficult" was keeping the cathader for 24 hours
afterwards (will certainly ask my doctor about this next time) and not being
allowed to eat for 24+ hours sucked, because I was nursing and "starving to
death" after not eating past midnight the night before surgery. I delivered on
Wednesday morning and my first "full" meal wasn't until a late dinner Thursday.
I was ready to eat my feet!!! We left Friday evening for home with our little
guy, so my stay wasn't that long either, which was fine - I was ready to go home
to my own bed.
The first few days are pretty sore, but with the pain meds, nothing too
terrible. I had my staples removed a week later and once those were out I felt
like a new woman, because those pinch.
Aside from lifting my son, I didn't lift anything for about a month that was
heavier than him or our stroller. I healed pretty quickly and have no bad
feeling about having another one in the future, as any future births will be
c-section for me.
Hope this helps - if you have any other questions, feel free to email me.
Melanie Johnson - Bloomington, IL
Melanie A. Johnson - mjohnson0321@...
Creative Memories Consultant - Memory Keeping At Its Best!
Complete an entire album in hours - ask me how!
Now Shop Online w/ Me - www.creativememories.com/melaniejohnson
"A Birth Certificate shows you were born - A Death Certificate shows that
you died - A Photo Album shows that you LIVED!"

Getting symptoms addressed by doctors can frequently be a challenge. Doctors
are very special people, and that comes with some weaknesses. Their brains
have been disciplined to look for and recognize specific symptoms that rule
out some options until one possibility is left and they can make a
diagnosis. The challenge for them is to sift through a bunch of symptoms a
patient reports, some of which may not be related to the problem at hand. So
when a cluster of symptoms don't fall neatly into the cascade of symptom
diagnosis, then symptoms may go unaddressed.
Doctors are very special people, but they are not gods. A year and a half
ago I went to the doctor with specific symptoms and they ran every test they
could think of on me and could not find anything except that my immune
system was in overdrive. Six months later I found a lump in my breast and
was diagnosed with breast cancer. It is likely that my previous symptoms
were the early signs of my cancer returning, but until I had the symptom
that was critical for diagnoses (a lump in my breast) they couldn't tell me
what was wrong.
I am a partner with my doctors. I have to note symptoms and how often they
are occurring and when they are occurring. And I need to ask a lot of
questions. What might be causing these symptoms? Are there specific tests
that may rule out some of the possibilities? Although 'I don't know' is a
valid answer from a doctor, it is not a satisfactory one. So it is my job to
ask alot of questions about my most serious concerns. 'Why don't you think
it is cancer?' Frequently they have very clear reasons why they say, 'don't
worry'. Many times asking has gotten me the satisfaction I needed.
After my last round of chemo my vision has become quite blurry. I finally
was referred to an eye doctor who said that he couldn't find any reason for
my blurred vision and I would just have to live with it. I was getting up to
leave when I made the comment that something was causing the blurrred vision
and I guess I needed to talk to my oncologist about getting a brain scan.
The eye doctor looked surprised and called me back to the chair. He did a
few nuerological tests and said that it wasn't a brain tumor, and explained
to me exactly why my symptoms were inconsistant with a brain tumor. That was
my biggest concern, so I am satisfied with 'I don't know'.
Sometimes I am not satisfied with the answers I get. Then I have to either
wait to see if I develop any knew symptoms, keep going back to the doctor
with new questions, or seek another opinion. It can be a long road to
finding answers, and yes, sometimes answers are not found.
So my suggestion is to keep trying! Ask lots of questions! Let the doctors
know that you are very concerned about this. My oncologist wanted to take a
wait and see approach to some chest pains I was having. I told him I wasn't
comfortable with that. So he sent me for a CT scan and an MRI. It turned out
to be nothing more than a viral infection between my ribs. But I felt a lot
better knowing that cancer had been ruled out!
Good luck to you!
---Tessa
Olympia, WA

The only definite way to be sure if a bone lump is or isn't
cancerous is to take a biopsy and get it looked at. MRI
scans, technetium based bone scans, and xrays over a period
of time can all identify rapidly growing, suspicious, bones.
Usually even these rapidly growing bones are not malignant.
But the only way to be sure is the biopsy as far as I know.
I hope you get some answers soon
Kate

Thanks the comments, Tessa and utek_2000, about my symptoms.
Yet I am warring because of the satiation on-going never match the
doctor's diagnosis. As for the suggestion from utek_2000, I have
visited a dental surgeon, a professor of Aichi Gakuin Univ. Dental
Hospital and been diagnosed buccal exostosis at that time, aprox. 40
days before already.
However, if the things he said was really so, my symptoms should not
get worse like as I have experienced so far. the progression after
that is more likely multiple myeloma or something else. 1st getting
swelling lymphs around the mouth then it got down neck and moved to
shoulder, starting to dull pain the collar bone then blade bone and
breast bone now, sometimes the pain goes haunch bone or thigh bone
recently. Night sweat also these days.
It's not so severe currently and sometimes, in the morning, mostly
none. Yet once getting fatigue, it's turning back, and often so in
the night time. I got inspection both CT and MRI with my head and ,
doctor said, nothing found there, large intestine endoscope also the
same, in ordinal blood examination no abnormal values except bit
exceeding the urea nitrogen, though not checked CA19-9 or PSA or
other cancer related makers cause of the current medical insurance.
Now in my mouth, the torus started to grow left lower jaw and the
similar uncomfortableness, some sort of oppressive feeling at the
dental root, beginning.
Is HME normally grow so rapidly after 50? Has any there heard the
similar developement like my own before? And if any malignancy I
have to concern, what markers I have to check next in my blood
stream? Although the doctors have said no care was needed, I am
still anxious.
Any suggestion greatly appreciated.

I have fairly severe MHE throughout my body, including two exostoses
inside my lower jaw. They don't cause me any problems, and they've
never gotten bigger. I had a dentist once who noticed them and told
me not to worry about it, that these things are fairly common---they
might not even be related to my MHE.
Your symptoms sound disturbing. Have you ever thought of going to an
orthodontist to ask his opinion? He's probably seen more mouth
problems than an oncologist, and can tell you whether or not your
case is unusual.
Good luck.

Okay, so this is going to ask a very personal question, so please-- no one feel
required to answer. This has come up a little here and there over the years-- I
guess my parents were told that if I were to have kids, I would need to have
them all by c-section. Of course, that was when I was really, really little,
and maybe it's not true anymore, or maybe it is. It probably is. But that's
okay-- it's just that, the normal thing is for people to have children
naturally. When my sister was having her baby, she wanted to know what as much
as possible what it was going to be like-- be a little prepared. It wasn't as
scary for her if she knew what was going to happen. When I first learned that I
would have to have c-sections, I started to ask adults I knew, when they would
talk about having their kids by c-section, what it was like. They, not knowing
why I was asking, would tell me horror stories. Every once in a while, I would
tell them why I asked, and they'd be like, "Oh... well,
it wasn't that bad. I mean, it hurt, but..." So, I guess my message boils
down to this-- I have no idea what a C-section is like, other than it hurts, and
you can't do heavy lifting for 6 weeks. I've read some messages about people
being surprised in a C-section. In school, they only teach about a normal
delivery-- they don't go into detail on what will happen in a C-section. So, if
there's someone out there who doesn't mind, could you please tell me what
exactly a C-section is like? Never too early to start preparing yourself
mentally, right? First, I'll probably freak out and say, "AH!!!!!!!!" then
I'll get used to the idea, and then I'll be able to face it. Or maybe I will
just freak out-- I don't know. Although I have no idea when I'll start having
children, I just don't want to be surpirsed. Thanks!
-Charissa from Indiana
21 years old
"Everyone falls-- but not everyone rises..." Maren Ord "World More Perfect"

Hi Alan;
I can relate to crisis clusters! I'm glad you are through with the first
surgery and I pray that it is of great benefit to you. Good luck!
---Tessa
Olympia, WA

Hi Max;
Congrats on getting the SSI!
I also have suffered great aggrevation trying to get medical records sent
anywhere. I find that I have to show up in person if at all possible. It
amazes me how even 1001 phone messages can be ignored. I get so frustrated I
want to strangle my teddy bear...
---Tessa
Olympia, WA

The symptoms you describe are not within my experience. It could be MHE, and
it may well be something else. I would definitely be concerned if the mass
is still growing. I hope that you can find a specialist that can address
your concerns.
Good luck
---Tessa
Olympia, WA

Tessa,
Hope all went well and you are home recovering. Big hugs and get well
quick wishes!
Love,
Max

We got the news today that Chris has been approved for SSI benefits. I
think what is more important is that his case manager told me that
most people are denied because they cannot get medical records. They
requested medical records from UCSF FOUR times and never got a
response. I finally called Delgado's surgical assistant and she copied
his clinical and surgical notes for the last two years and I forwarded
them on; also, all his x-ray and MRI and CT records, I collected them
and sent them in; also his clinical notes from his primary care
physician. I called them at least three times to insist they get it
done and sent in. I ended up having to collect, copy and forward most
of his medical records myself. I hope this information is helpful to
others having problems with SSI and getting benefits.
Love,
Max

Linda,
I went in to have a tumor looked at on my hip at 21 years. They came
in after the x-ray, and showed me a tumor on my pelvic bone the size
of a baseball. I decided to have that removed to avoid any
complications if/or when I was pregnant.
In 2002 I became pregnant. I didn't experience too much pain during
pregnancy itself, other than back pain. I did have Level 3
Ultrasound at 20 weeks to make sure no tumors had grown back in the
pelvic area.
We opted to try normal delivery. This is a choice I honestly wich had
not been made. My body/ pelvis were not equipped to deliver my son.
We only realized this after 3 hours of pushing, asthma attacks, and 2
epidurals. The end result was a C-Section and a 9 lb. baby boy.
I would recommend definitely discussing a planned C-section in your
case. With you already in so much pain, it is important to think
about the stress on both you and the baby. Also see if you can have
advanced Ultrasound like I had to see of any potential problems ahead
of time.
Kami Voliva (Bonney Lake, WA)

Had the operation to remove nerves from my left arm to ease the pain
in my left wrist.
Will knowin about 2 weeks if it was sucessful.
Found more exotocis in my shoulders, pressing on my nerves.
Next need MRI scan in 2 weeks when l go back to have stiches out.
It never rains but pours sometimes, always when you least expect it
Keep you all informed as it is going to take longer than they first
thought
alan

Jake never complains. It's been one of the toughest things about
helping him. He's finally beginning to drop some clues. I don't know
if it's finding the words or that something bad has gotten bad enough
to say something. Ugh. This morning he was being excited about
Halloween coming up (already have his costume, it's "Dash" from the
Incredibles) and he asked if I could drive him to some houses
because, "I lose some of my speed at nighttime." I told him I thought
we could find a wagon and Daddy or I would pull it.
He's had some aggression at school and their guess is as good as mine
as to whether it's medication for other conditions, fatique, pain or
him just being a rowdy six year old. Last week he pulled a hunk of
hair out of another kid's head and the kid had to go to the nurse for
ice. I don't want him to be in pain, and I don't want him to be a
bully. He needs to be appropriate and/or get help. How did you moms
make it all the way to college?
Julie in Columbus
Mom to Jake 6, Dani 11 and Kirk 14

Dear Sir/Madam,
I'm a 53 M Japanese patient being diagnosed as Exostosis in upper
jaw. The picture is the one at 7/15 to 8/24, and the summary of
development is as follows;
http://sysynt.dyndns.org/photos/715to824.jpg
1) I've found one small bone mass on left side upper jaw, and for
years it got larger very slowly and came to multiple yet no pain and
other symptoms.
2) However during last 2-3 month, it suddenly increased the volume
and spread to right side of upper jaw.
3) Therefore I've got anxious and visit Head and Neck trauma
department in Aichi Cancer Center at 7/15. Then the
otorhinolaryngologist told me it's a typical Exostosis and OK to
leave, he diagnosed by the outlook, palpation and 3 X-ray images.
4) I got ease at that time but after the date sometimes I felt a
kind of ache deeply inside the upper jaw, it's not actually pain but
like a somewhat being tightened around the teeth roots.
5) So I visited the otorhinolaryngologist again and asked whether it
really no need to care and he replied 'Don't worry no problem'
without any additional medical inspection, even I asked the
necessities.
6) Late Aug., last month, my lymph nodes at submental and subaural
swelling sometimes, not so enlarged but felt by self palpation, no
antibiotics worked so just took rest, and the deep ache above was
still on-going at cheek bones.
7) Recent days, during last 2 weeks, I got a pain at deep inside my
ears and my shoulders, left collarbone 1st and move to the joint
then right part. It always gets hard at night or when I felt fatigue.
In addition the bone mass on upper jaw now expands/starts to grow at
lower left jaw also.
8) Thus I wonder so much whether this really is simple HME or
something else. According to some web sites, bony surface
proliferations found in another site are considered to be trauma-
induced inflammatory periosteal reactions or true neoplasms from
somewhere in another part of body.
I think I may need to get more medical inspection, doctors around me
are possibly not so knowledgeable to make certain diagnosis so I
myself have to make sure requests to check the distinction if it
really is no malignant.
If any there has already experienced similar symptoms, or known it
well to make it sure, please give me a suggestion what I should get
the next, or let me know where I can get certain info. about this
problem. Any suggestion greatly appreciated.
thanks.

Good luck, Tessa. You're in our prayers!!
Melanie-Louisiana

Hi everyone;
I've been busy the last couple of days preparing for my
ankle surgery. I am headed off in just a couple of hours
and I am thirsty! Can't wait to get my IV put in, lol. It
is an outpatient surgery and I should be home tonight. It
is a two hour drive to the hospital and we will likely hit
rush hour traffic on the way home, so it may take longer
getting home. Yuk! Hopefully this will be my last surgery
for the year!
---Tessa
Olympia, WA

I also had horrible pain during my pregnancy in my pelvis and lower
back. We decided to have a c-section a few weeks early and now my
daughter suffers from an imaturity in her stomach (protein
intollerance) which makes eating a challenge. The pain was bad, and
the tumors definitey grew, but I wish I would have braved through the
last few weeks. In the third trimester the specialists said vicodin
is safe, but I chose to deliver rather than medicate.
My daughter is six months now and the pain is getting better. I will
probably need two surgeries once I can find the time.
Darlene

Family,
I have to try and find out about Chat, Carla, Bill's Niece set it up for us
when we started it.
It may take me a few days to track down Carla, so when Bill and I find out
anything we will let you know. If we can't go back to where we were, we will

Hi Family,
Just caught up with Carla,
Carla just moved and has to get her computer up and running and it may take a
few days before she can solve our Chat problem, she will check and find out
what she can concerning the Chat we had, other than that if we have to change
to a new server and addy we will and she will get back to me with all the
details and we will let you all know.
Take care all,
Chele