[timandee]

Hi everyone, I'm new to this site and having been reading your post. It's so amazing how my life has revolved. Since the 1980's I had been diagnosed with Fibromyalgia or Chronic Fatigue syndrome or various pain syndromes. In 1992 I was diagnosed with bilateral Thoracic outlet syndrome. I had a first rib removed on the worst side with was the left. I didn't have an extra rib. Anyway, the removal of the rib helped some on the blood flow but I continued to get worse on the muscle spasms and the high variaty of symptoms many of you post here. The only way I could slow the progression of the problem was to stop working. As years have gone by I have pushed to find out what was really causing my problems. As I know, many doctors use Fibromyalgia as a waste basket term when they really don't know what's wrong with you. Finally my symptoms progressed to the point of having really bad balance problems and falling, along with drop falls and many other often brain related symptoms. My headaches I dicovered was originating from the back of my head as well. In august of this year I had an MRI of my brain and cervical spine. Finally the answer came. I have a Chiari 1 Malformation. This is where a portion of you brain drops down in your spinal canal. The radiologist missed it in 2005 on other MRI's and this is VERY common to happen. Even the best Dr's, Radiologist, neurologist, neurosurgeons, etc. know nothing or very little on this condition. To make a long explaination short. It can cause so many symptoms a doctor will think you are crazy. The more I have researched this problem, it has come to me that since Chiari makes neck muscle and shoulder muscles spasm due to nerve pressure in the brain, the chiari condition was very likely the cause of my TOS. Some of you may already know that many people with fibromyalgia are often diagnosed with TOS. The real clincher here is in recent years many people with fibromyalgia/chronic fatigue, etc, are being diagnosed with Chiari 1 malformations. Now, the Erlos Danlos comes into play for possibly those of you that have hypermobility. Erlos Danlos can cause Chiari 1 Malformations and I am reading that it also can be a cause for TOS. A tethered spinal cord which is found at the bottom of the spine can also cause Chiari 1 Malformations. (This also sometimes being a cause for spinal deformaties and/or increased lower body problems). Chiari can also be caused by literally having too small of a skull for your brain. There are many reasens this condition can happen. If any of this sounds interesting to you and you would like to follow it up more, do searches on the internet for Chiari 1 Malformation. The symptoms are never all the same in every person. Thus making it harder for Dr's to diagnose. Even if it's seen on an MRI, radiologist or Dr's often dismiss it as an incidental finding. In recent years Chiari specialist have discovered much more about this condition. They and many others are trying to educate others in the medical profession, but it will take time. If you find through more research you symptoms are very simular to Chiari and you have had an MRI of your cervical spine and/or head, you may consider having it looked at by a neuroradiologist that is educated on Chiari. Be aware that many doctors will even dismiss Chiari as a problem. This is because they are from the old school and not up to date on it. I hope this post might help many of you that suffer. There are surgeries that can help this problem and sometimes make all the symptoms go away. If I had known in 1992 that I had Chiari, I would have never had my left first rib removed. There are support groups on the internet for this condition as well and many people there that can be of help with those of you with questions. I am having a decompression brain surgery done soon by a Pediactric Neurosurgeon that is not with one of the specialty clinics but is with a University hospital. He is well educated on this condition. For those of you that's heard "It's all in your head" It may very well be. Dee

[tshadow]

Thank you for sharing this information.

And I agree with you that just because we've had MRIs, CTs, etc., that not all (even Chiari 1 Malformation) is caught by the radiologist. I encourage (and need to do this myself) people to get the actual images to their neurologist or TOS surgeon and have them do a double-check, or as you said, get an expert in the certain field...Chiari 1.

Thanks again.

[Bi-Coastal]

WOW Dee!!!,

This is THE prime example of blaming EVERYTHING on TOS and not looking further with various symptoms.

I will print your post and show it to my specialists whom I happen to be seeing Weds. & Thurs. this week.

Syncronicity??...Maybe!

Thanks SO much,
Anne

[Bi-Coastal]

Oh, P.S,

You are probably aware, but be certain to insist that you are not used as a training subject in surgery. University hospitals are Notorious for this...that is what they do.

By the way, could you post the University in question? Is is Stanford by chance?

Anne

[timandee]

Anne and anyone else interested, Feel free to copy the post and share it. Sorry about the misspells. I used to spell very well. But, it's another symptom of Chiari. Symtomatic Chiari does usually get worse with age. I am now 44. Another note on the above; I have a herniation of the brain, which is called cerebral tonsils of 5mm on one side and 9mm on the other side. I have been found that my brain is too big for my head. Some under educated Dr's will say that this and sometimes more, is not enough to cause problems. If that is said, you can figure they don't know enough about Chiari, so you will probably need to find a Doctor that is more specialized or more knowledgable. Even a 0 herniation of these tonsils can cause problems if the brain is too big for the head and doesn't allow Cerebral Spinal fluid to flow properly. You may have to have a MRI with CSF flow study to confirm or disprove that you have it. By the way, I was also diagnosed with RSD in 2 different locations in 1992. I have also found several connections with the diagnosis of RSD with people now diagnosed with Chiari. RSD has been connected to Fibromyalgia and TOS, etc. too. If you can take the time to research this condition well and when you see your doctor, go loaded with information, that will help you. There are even pictures on the Internet of MRI's that show these Chiari 1 Malformations. If you can get CD'S or your MRI's of your head and/or your cervical spine, your might be able to tell yourself if you have this brain herniation. I believe sometimes it can show up on CT's as well. Hope this helps, Dee

[timandee]

Anne, I researched this Doctor very well and even talked with other Chiarians that he did surgery on. That's the benefit to internet support groups. Also since I had educated myself on the condition with 100's of hours of research, I knew when I met with him that he knew what he was talking about. This is a doctor in VA.
Dee

[timandee]

My last reply isn't showing up and I'm not sure why. But I am new here and I might be doing something wrong. So here goes again. Anne and anyone else interested, Feel free to copy the post and share it. Sorry about the misspells. I used to spell very well. But, it's another symptom of Chiari. Symtomatic Chiari does usually get worse with age. I am now 44. Another note on the above; I have a herniation of the brain, which is called cerebral tonsils of 5mm on one side and 9mm on the other side. I have been found that my brain is too big for my head. Some under educated Dr's will say that this and sometimes more, is not enough to cause problems. If that is said, you can figure they don't know enough about Chiari, so you will probably need to find a Doctor that is more specialized or more knowledgable. Even a 0 herniation of these tonsils can cause problems if the brain is too big for the head and doesn't allow Cerebral Spinal fluid to flow properly. You may have to have a MRI with CSF flow study to confirm or disprove that you have it. By the way, I was also diagnosed with RSD in 2 different locations in 1992. I have also found several connections with the diagnosis of RSD with people now diagnosed with Chiari. RSD has been connected to Fibromyalgia and TOS, etc. too. If you can take the time to research this condition well and when you see your doctor, go loaded with information, that will help you. There are even pictures on the Internet of MRI's that show these Chiari 1 Malformations. If you can get CD'S or your MRI's of your head and/or your cervical spine, your might be able to tell yourself if you have this brain herniation. I believe sometimes it can show up on CT's as well. Hope this helps, Dee
PS, I researched this Dr very well and even talked to some other Chiarians he did surgery on. That's the great thing about support groups and the internet.

[timandee]

Anne, I just read one of you post about your accident, An accident like this can cause a not so symptomatic person with Chiari into full blown Chiari Symptoms. Instability of the neck can cause the Chiari to happen in people with Ehlers Danlos. The Chiari Institute in NY has a lot of information on this. I think you will find there is help for this instability and the problems you have. Please let me know how you visits go this week. You'll be in my prayers, Dee

[tshadow]

I am confused by your term, even 0 herniation of tonsils can contribute. Contribute to what? What herniation? Are you talking about tonsilitis and swelling and infection? I ask because I had chronic and incredibly abnormal severe problems with tonsils until I was about 27 when I had them removed. So please clarify if you can what you mean about the tonsils...it just caught my eye...

Thanks so much for this, I'm going to make sure to get my films from the ERs this summer and get them to the right docs for viewing. Plus, I should've done that just to have the right TOS docs look at them for the "regular" reasons!

thanks.

[fern]

timandee,
Thank You for sharing all this info with us. I know first hand what it feels like to have a leak of CSF (due to myleogram) and have my brain/head hurting for months from this condition. Terrible. So I sympathize and empathize with you.

As long as you have done so much research yourself, could you briefly recommend a few sites where we could read up on this condition. And if there is a site that compares or lists complications with multiple diax such as chairi, TOS, fibro, hypermolitiy, etc. And if there is one that lists good doctors to have it checked out, that would be helpful too.