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Chiari Malformation


CDJ
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Thank you to all that posted the times and topics for the "Mystery Diagnosis" T V show on Discovery Health channel. I am in the process of pursing this issue. if any of you can share your expiriences with the pursuit ,I would appreciate it. I scheduled an MRI Of the neck (C-Spine) and will see a specialist in Chicago soon.The show relly got me excited that maybe I could find a solution!!!How crazy is that......... : hoping that I need brain surgery!!!

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I just watched a lecture from the Chiari Institute on the coincidence of Chiari and EDS yesterday. If you're interested, you can find it here to see it, just click on the EDNF box toward the bottom. It's pretty interesting. (Found the link through this homepage.)

Good luck!!!

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I just watched a lecture from the Chiari Institute on the coincidence of Chiari and EDS yesterday. If you're interested, you can find it here to see it, just click on the EDNF box toward the bottom. It's pretty interesting. (Found the link through this homepage.)

Good luck!!!

Megan,

WoW! Thank You ! this is extremely helpful.

Cindy

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Hi Cindy,

I don't think it's crazy you are hoping for brain surgery. I would love to be "better" anyway they can make me. I understand why you would feel this way.

Good luck and wishing you the best with your findings :blink:

Amber

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Guest Julia59

Just a few words of caution............ :)

I am diagnosed with chiari-0---aka/hypoplastic posterior fossa, cranial/cervical instability, congenital cervical spine stenosis, retroflex odontoid and EDS. Of course I also have the diagnosis of POTS. My point is that some who have been diagnosed with chiari---and POTS/dysautonomia do not get a resolution of their ANS symptoms, or only a partial resolution after having surgery. Some have been fortunate to lead almost normal lives after surgery-----but i'm assuming that this is for those who have not gone years with ANS dysfunction.

If one has already gone years with ANS dyfunction and some CNS problems, it is likely that some permanant damage is done, and they may not be happy with the results post surgery. From the many different people (both chiari patients without ANS symptoms/or with ANS symptoms) I have talked with over the last three years or so, it seems as if the folks who did not notice any significant ANS symptoms (but had CNS symptoms/severe headaches,high CSF pressure ect.) before they had surgery were the ones that seem to have the best results from their surgery-----long term.

Some dysautonomia people with probable chiari don't have a choice, as progression of CNS symptoms will continue unless they have surgery. Unfortunately, they may be stuck with some of the same ANS symptoms they had before the surgery---or maybe all of them---even some of the CNS symptoms, it depends on how much permanant damage is done. Some people have actually gotten worse, especially if they went to an inexperienced chiari surgeon.

I still want answers----solid answers, and I can't find a good neurologist locally to watch for neurological signs (CNS-not the ANS symptoms) that I am getting worse. The last actual neurological exam I had was by a NSG in Milwaukee July of 2005, and he told me I was developing myelopathy due to the long term compression of my cervical spinal cord. He suggested a full cervical laminectomy, but the problem is that I have cervical/cranial instability above the levels he wants to do the laminectomy on--(C-3 to C-7)---and that area would also be fused. This would work the areas above it C-2 and C-1 more, and it's already unstable. The NSG in NY said I need a cranial/cervical fusion---so as you can see, I definately do need continuous neurological evaluations, but no one in Toledo, Ohio takes any of this seriously----despite my obvious signs of myelopathy.

This is something that needs a great deal of research---and more then one NSG opinion before considering such a major surgery. This is a very painful surgery, that has a long and difficult recovery. My neck surgery I had for the two herniated disks in 2002 is a walk in the park compared to chiari surgery, or laminectomy surgery. During my neck surgery to replace the herniated disks, I also had a fusion on those levels c-5, 6, and 7, along with a titanium plate. It was thought that I wouldn't need surgery for several years for the other problems, but both the NSG and I found out different. The fusion helped keep the area stable, but the areas below it and above it became more unstable---and quickly due to the EDS.

I had just tried to get in touch with Dr. McDonnell who is doing the EDS study with NIH to see where i'm at on the waiting list, as this will probably be the deciding factor on if I have any more surgery. However, I may not have a choice-----surgery may be the only option due to the myelopathy. I don't want to be paralyzed.

You just want to make sure your ANS symptoms are related to the chiari-----it's really complicated, because it's difficult to find ANS specialists, let alone a chiari specialist. I have also talked with some people who had improvements in ANS symtoms after they had surgery---so it is definately not out of the question that this can happen. It's just something that needs a great deal of thought. ;)

Julie :0)

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I, too, have had surgery--with one of the chiari specialists. My surgery was for c5-6 fusion; i'd had a ruptured disc from a car accident, and the bones had healed together in a bad position and needed to be chiseled appart, then set in correct position, along with a bone graft.

NO surgery is without RISK. My first surgery was a failure (we didn't know I had EDS then, which predisposed me to healing problems), and I needed emergency surgery to repair it...

and I went into it without any expectation that it would do ANYTHING for my autonomic problems. Chiari surgery has a very high rate of complications, particularly folks needing multiple repair procedures, and problems with spinal fluid pressures that can require a permanent shunt to be implanted.

Nina

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I didn't mean to make it sound as if it would be a cure.

I'm sorry anyone has to have these medical problems...but I know how some of us may have had wishfull thinking so we can get better treatment. Does that make sense?

Thanks for the words of caution, I wish we all had a cure to be whole....or at least close. ;)

Amber

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Guest Julia59

Amby, your fine----I know that you do not think this is a cure for POTS-------- :)

I belong to a chiari website discussion forum, and I have read about the repeated surgeries. It seems that about 75% of the folks who have had chiari surgeries had to have it revised, or needed further surgeries for cervical/cranial fusion, shunts ect. So basically Nina is right on cue---many complications can happen.

If you do end up needing surgery to stop progression of serious symptoms---i.e.--->heart arrhythmias, starting to become paralyzed, myelopathy, very severe OI-passing out with seizures, disabling headaches at the base of the skull radiating to the front of the head behind the eyes, severe cognitive dysfunction-----------see the top NSGs in the world who try to get the surgery right the first time--the experts who are familiar with chiari, EDS---and dysautonomia---------- ;)

I'm doing a lot of research before I go under the knife. Unfortunately, I may have to travel out of state again to see a neurologist to evaluate me. I just wish this would go away. When you know in your gut that your getting worse and no one locally takes this seriously---it's really a drag. Dr. Grubb beleives it, but he's not a neurologist---and I don't expect him to try to be one for me.

My main objective is to avoid surgery, and I hope and pray this can be done. For all I know something else neurological could be going on that is causing the myelopathy---or all these muscle twitches---and other CNS symptoms. I'm on the fence on weather the ANS symptoms are related to my spine/chiari junk or not. Most chiari patients have some form of dysautonomia or another.

Julie :0)

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