Re: bearhaven1 & Chiari

[Guest guest]

Re: bearhaven1 & Chiari

My daughter and I have EDS, my daughter has Chiari and I have TSC. We have

been seeing Dr. B (as everyone calls him) at The Chiari Institude in NY who has

been doing research with the NIH. Together they have found the gene responsible

for EDS/Chiari, however this paper is yet to be made public.

The way it was explained to me was that EDS is connected to Chiari. My

daughter had the posterior fossa decompression this past Jan and due to half of

vertebrae one being removed, we were told that she had a 75% chance of needing a

Cranial Cervical Fusion. This is due to the odontoid becoming even more

unstable with the loss of vertebrae one, resulting in the odontoid banging on

the brain stem. Her odontoid is bent back and is too short (due to EDS) which

causes bobble head. This sounds like your case.

To the best of my knowledge per Dr. B., the spinal cord is suppose to stop at

the L1 level and when it is longer it is because it is being pulled down (I

guess for several reasons), but the Dr. is telling me it is due to the EDS

causing the filum terminale to tighten and pull. Now, I do not really have ACM

but I do, because the pulling on the cord is also beginning to pull the tonsils

of the brain down. So in that sense I guess the detethering surgery would come

first (of course, it would depend on severity of each issue as well as

symptoms). However, I believe it would have no bearing on the bobble head or

brain stem damage because, that has nothing to do with the spine, only the EDS.

With all of your difficulties and the problems we are having with our daughter

healing from the PFD (due to the EDS), I personally would not recommend

having both surgeries at the same time. Please think about it. It would be

wonderful if you would call and request to speak to a nurse at The Chiari

Institude--.

Only my input, I hope it was helpful.

tetheredspinalcord wrote:

There are 25 messages in this issue.

Topics in this digest:

1. Re: pc muscle exercises

From: " charneloj "

2. Re: 4 bladder issues

From: " charneloj "

3. Re: another curious question...

From: conni60640@...

4. Re: Chiari-Kelli

From: " Brande "

5. Re: Chiari

From: " Brande "

6. Post surgery question

From: " pam3232785 "

7. Re: Diastematomyelia

From: " Brande "

8. Re: Post surgery question

From: conni60640@...

9. RE: Post surgery question

From: " Bill "

10. Re: TCS and physical therapy

From: " Brande "

11. Re: Paralyzed bladder? Ditropan

From: " Brande "

12. Re: Paralyzed bladder?

From: " Brande "

13. Re: another curious question...

From: " AB Bunton, Electrical & Electronic Engineering "

14. Re: Diastematomyelia

From: " AB Bunton, Electrical & Electronic Engineering "

15. Re: Diastematomyelia

From: " Brande "

16. Re: Diastematomyelia

From: conni60640@...

17. Re: another curious question...

From: Rick

18. Re: TCS and physical therapy

From: " Brande "

19. Re: TCS and physical therapy

From: " Diane Vaupel "

20. Re: another curious question...

From: " laurav1945 "

21. Re: Chiari

From: " bearhaven1 "

22. Re: Chiari

From: " A Gosp "

23. New to group!

From: tarheelx4@...

24. Re: Post surgery question

From: Rich@...

25. (unknown)

From: Valyra Bacigalupi

________________________________________________________________________

________________________________________________________________________

Message: 1

Date: Thu, 09 Mar 2006 08:50:00 -0000

From: " charneloj "

Subject: Re: pc muscle exercises

For people who have muscle control issues some docs are using muscle

stim devices to do the contracting for you. Muscles are always in

sets opposing each other. It may not be that your muscle cannot

release but that the opposing muscle has nerve damage or is difficult

for you to isolate. Doc are also using biofeedback for pts having a

hard time isolating the specific muscle groups. It might be something

worth looking into as most tsc pts have detrusor issues and do not

qualify for surgical intervention.

Charnel

> >

> > I believe she's saying that the purpose of cathing is to empty the

> bladder

> > so that there isn't enough urine in the bladder to go up into the

> kidneys.

> > Which could happen due to involuntary muscle spasms related to TCS.

> That

> > the muscle spasms are gonna happen whether you cath or not - it's

> just the

> > way we're wired (which is why stress incontinence occurs). Is that

> right?

> >

> >

> >

> > _____

> >

> > From: tetheredspinalcord

> > [mailto:tetheredspinalcord ] On Behalf Of rocco0425@

> > Sent: Sunday, March 05, 2006 6:28 PM

> > To: tetheredspinalcord

> > Subject: Reply to

> >

> >

> >

> > In a message dated 3/5/2006 7:48:50 PM Eastern Standard Time,

> > tetheredspinalcord writes:

> >

> > This is something I always thought too, but it's not the case. The

> nerves

> > to the muscle of the bladder cause it to spasm and then that can

> " squirt "

> > urine back up into the kidneys causing damage. That's why they

> want people

> > to

> > cath so often and so soon after discovering this.

> >

> >

> >

> > Hi , my name is Kelli and I'm a Mother of two boys, aren't they

> > wonderful....Anyway, I was curious about your post....so you're

> saying that

> > from

> > cathing, you can damage the kidneys? I'm just wondering since I

> cath and I

> > have

> > never been told that and wondering if I need to watch out for or

worry

> > about

> > it. Thanks, Kelli

> >

> >

> >