Growth Hormone - and other hormonal links to chiari

[Guest guest]

Hello everyone,

It's been a long time since I posted. I have a history of CMI, OTCS and PTC.

My son (almost 7 now) is diagnosed with OTCS.

It's been a long road. I've had 3 surgeries. Of course, I still have my

crosses to bear. But I'm managing. I wanted to share with you my personal

experiences regarding HGH. I have to say, we've come a long way learning about

it - and opening our minds. I couldn't believe how many hits I got when I

searched " Growth Hormone " in our messages. So I see that people are talking

about it!

I had already been through my surgeries and had my first child. I was still

having problems with things typically associated with Hypothyroidism (fatigue,

memory problems, weak nails, acne, constipation, feeling cold, insomnia...the

list goes on). I was convinced I had a thyroid problem. But when my docs

tested me, everything was normal. So I did the same thing I did when I was

investigating chiari - I joined a yahoo group. It was there that I learned that

you DON'T have to be overweight to have a thyroid problem. And I also learned

there are other blood tests doctors should run to check for it:

reverse T3

TpoAb

TgAb

The latter two are thyroid antibody tests. If you have high antibodies, it's

hard proof that you have an autoimmune problem with your thyroid (regardless of

whether your hormone levels are " normal " ). When I was tested, mine were very

high. Then I started reading about thyroid hormone and how it affects growth -

BONE growth. Then I heard about that study Duke is doing and also read about

how HGH affects bone growth. I asked my doctor to test my HGH levels. They

tested my IGF-1 levels and they were normal. But I kept thinking, " Duke

wouldn't be spending tons of money to study this if there wasn't something to

it " . So I pressed and my doc did a 24 hour urine test that is considered more

accurate than the blood test for IGF-1 (had to be sent to a special lab in CA).

Sure enough - I was deficient. I appear perfectly healthy - but I am deficient

in two very important hormones. No wonder I feel like hell.

So I became convinced that there is a strong possibility that hormonal

deficiencies play a role in chiari. I'm not convinced that I did NOT have a

hormone deficiency as a child. I've probably had it all along...so here I am

looking at my son and wondering....

So I began injecting HGH and noticed a tremedous difference in my neck pain

(should have mentioned, I have had horrible neck pain since my decompression).

My doc said to me that the neck pain would only be a problem in patients with

EDS. Well...I'm not diagnosed with EDS - yet. So back to the HGH. I started

taking it and it helped a lot. Then, after a year, my husband and I were ready

to have a second child. So now I was faced with the decision, " Do I keep

injecting this while I'm pregnant? " . I thought long and hard about it. In the

end, I think I was more afraid NOT to do it than I was TO do it. So I chose to

keep taking it. I had some hope that maybe it would prevent my second child

from being born with OTCS or chiari.

My pregnancy was a little controversial - to say the least. My OBGYN was

blatantly rude - near the point of anger - when I told her my decision. She

demanded the name of my doctor. It was getting ugly. She had absolutely no

respect for MY decision as a mother, and my right to do what I felt best for my

child. And she also had no idea of the burden that chiari can bring. My goal

was to save my second child this burden if I could.

Well, I'm happy to report my second son was born perfectly healthy. Actually,

he was described as " vigorous " when he came 4 weeks premature. But, I am afraid

I have prevented NOTHING. When he was just over a year old, he started

complaining of tailbone pain ( " butt hurt " ). And during a haircut gone wrong, I

was able to see a large strawberry birthmark on the back of his head (fyi, Dr. B

at TCI told me that they uncover birthmarks on the scalps of about 25% of

patients they see). So my second boy is not diagnosed yet. But I suspect he

will be later. He's now just over 2 years old.

So right about this time, my 6 year old started having problems. He was

twisting his head a lot as if his neck hurt. ANd he was sucking in deep breaths

very, very often (like twice per minute). It was like he needed to yawn and

couldn't. It got so bad that I started to think about putting him on HGH. I

talked to two doctors I respect and both of them said (off the record) " do it " .

But I was so afraid of causing harm. Let me tell you, this is not an easy

dilemma!

There is more I'd like to share about HGH and the effects it has had for my

family - which have all been positive. But I prefer not to share too much here.

All I can say is, it's a shame that mainstream medicine fears it so much. And

it's a shame that it's SO grossly over-priced. Of course, this is all personal

bias.

I am happy to report my 6 yr old son's symptoms have resolved (for now). This

really is a hard condition to live with. I am keeping my fingers crossed that

Duke comes out with SOMETHING to help us. It would be nice if we all could have

HGH paid for by insurance. But I don't see that happening in my lifetime.