It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Brain & Nervous System Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-30-2008, 01:44 AM   #1
Newbie
(female)
 
Join Date: Sep 2006
Location: Canada
Posts: 8
sedative ocean HB User
Lightbulb Ehlers-Danlos Syndrome and Arnold Chairi Malformation

Hi there.
I have been diagnoised with Ehler-danlos Syndrome Hypermobility several years ago.
I also have Fibromyalgia, Degenerative Disc Disease, Spinal Stenosis, Constant nausua, Headaches that incapaticiate me for days. I have been loseing fine touch, tingleing up and down my arms right to the fingers. I have become very unsturdy on my feet and am now needing a cane. If I tilt my head back it feels as though it is going to explode. I am losing weight at an alarming rate I am 6' tall and 106 lbs. I can't keep foods down. My blood pressure bottoms out drastically when I stand up. I also have speckles in my vision.
I was watching one of those Medical Mysteries shows and the young woman was living in my body, or so it sure felt like watching her. About 20 minutes into the show the Dr.s had diagnoised her with EDS also. Mom had taken her to over 70 Doctors. She had a slight buldge at the base of her brain on a MRI. She then went to the Chairi foundation. They found the only relief that worked on her headache was streching her neck in some over the door pully weight thing. That is also the only way my headaches went away, when my hubby streches my neck.
I am wondering if anyone else has found this to be happening with themselves?
I spoke to my G.P. and he gave me this big B.S. story about horses and zebras. Now for your knowledge I am his only E.D.S. patient, and his speciality is Diabetes. Knowlwdgable Doctors are pretty scarce around here, methinks.
I just wanted to ask the very knowledgable people that are here on these boards if any one esla has ever dealt with this.

( removed )

peace
Donna

Last edited by moderator2; 09-30-2008 at 05:59 AM. Reason: please do not post to the moderators, as per the posting policy

 
Sponsors Lightbulb
   
Old 09-30-2008, 05:25 AM   #2
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: brockton, ma, usa
Posts: 640
cindys601 HB User
Re: Ehlers-Danlos Syndrome and Arnold Chairi Malformation

Hi Donna~

I am a chiari patient but very fortunate for me, I was not diagnosed with EDS. They did say I have some hypermobility in my arms that they could see but not enough for a diagnosis. EDS is a very complex thing and my sympathies are with you in dealing with that with a Dr who is not very knowledgable.

You didn't say you had a chiari diagnosis. Many people with Chiari also have EDS and other related disorders. EDS can cause problems with connective tissue as you probobly already know. And very commonly can cause cranio instability in your neck.

What you are describing with the pully is something I am familiar with. I went to The Chiari Institute(TCI) in New York, and one of the test they do is pull up your head and see if your symptoms are relieved. Then they push down on your head to see if the symptoms worsen. If the suspect instability, they then do a cervical traction procedure which I had done.

They put bolts into each side of your head (of course your not awake while they do that).Then they hook up a pulley to the bolts and add weights. At some point, all of a sudden, the pain was gone for me. Of course when they dropped these weights, my pain came crashing back on me. It fealt like they dropped a huge boulder on my head

This is the determination if you have the instability, which I do. I was told I would need the fusion surgery to help correct this. So when your husband lifts your head, the nerves that are constantly being compressed from your skull resting on them, are freed and you feel relief. But you really need to be carefull. You could do damage to yourself.

They do have over the door pulley systems that you can purchase on line. I paid $20 including shipping for mine. Theres a large water bag that you fill and this does the same thing. You might want to ask your Dr about that.

As far as the other symptoms you are experiencing, these most definately are chiari symptoms. I get all of them and more. The only one I dont have is the weight loss. Although my appetite is decreased and I only eat one meal a day, I've gained weight.

In Canada I know that good care for Chiari and its related disorders is not available. Many from Canada have gone through the insurance to be able to come here in the US for care. If this is causing extreme heart rate issues, you really should seek out someone who can better evaluate your condition.

Here is one specialist on my list in Canada. He is no longer performing surgery but is seeing people for consultations.

If I can help in any way, I'm here for you

Take care

Cindy


Dr. Tator

Toronto Western Hospital

( removed )

Toronto, Ontario

M5T 2S8

( removed )

Last edited by moderator2; 09-30-2008 at 05:56 AM. Reason: disallowed information - please read and follow the posting rules: "How to share information"

 
Old 09-30-2008, 09:31 AM   #3
Newbie
(female)
 
Join Date: Sep 2006
Location: Canada
Posts: 8
sedative ocean HB User
Re: Ehlers-Danlos Syndrome and Arnold Chairi Malformation

Thank you Cindy for your prompt reply.
My Phyiotherapist who has his PHD taught my husband to do the head streching. He has been a god send. Thank you for providing name of a Doctor for me to track down.
I have not been tested for Chairi yet but am finally seeing a Rhumatologist (sp) today who has lots of knowledge about EDS.
I am hoping that some answers can come out of this.

peace
donna

 
Old 09-30-2008, 10:52 AM   #4
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: brockton, ma, usa
Posts: 640
cindys601 HB User
Re: Ehlers-Danlos Syndrome and Arnold Chairi Malformation

Hi Donna~

I feel better that your husband was taught the correct way to lift your head for relief. I'm glad it helps you feel better to.

Let us know how you make out at your appoinment. Hopefully you'll gain some knowledge today

Take care

Cindy

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Effect Blood pressure and spinal cord? katey c Spinal Cord Disorders 9 10-22-2008 09:43 PM
Dislocating joints and arms that get tired easily Aquaticgirl General Health 4 08-07-2007 05:59 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ativan
Dilantin
Lexapro Neurontin
Paxil
  Topamax
Tylenol
Valium
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



cin66 (14), Kasey443 (8), Hamilton92 (4), feelbad (3), NerveEnding (3), scout316 (3), TopGeek (2), kelsifyer (2), ladybud (2), cindys601 (2)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (851), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 01:27 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!