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Old 09-30-2011, 06:36 AM   #1
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Red face Chiari the cause all along?

Forgive this long post. Yesterday I had my physical during which I discussed some symptoms that have been around for years. I have headaches, left sided facial pain, ear fullness, tinnitus, episodes of dizziness/vertigo, constant sore throat, diffuculty swallowing fluids, bad balance, etc.

For years I have been told most of the problems are due to allergies/sinuses. About four years ago I started having severe hand tingling and feet burning, shortness of breath, confusion and difficulty with word recall and so on. At that time I was evaluated for MS and had an MRI of my brain. The only finding in the report was "mild arnold chiari malformation type1". The neurologist did not think it was significant and eventually I was diagnosed with a b12 deficiency. I take 1000mg sublingual b12 daily and some of the symptoms have been greatly reduced, specifically the hand tingling.

However, the headaches and facial pain, etc., continue almost daily. I take excedrin migraine which helps bring it under control so that I can function. So because I continue to complain about these symproms, the doctor has ordered another MRI of my brain. She didn't even know what chiari is when she looked at the report but she did note it on the prescription so they will be looking for it.

My biggest question is, am I likely to be a surgical candidate? If so, is it worth it? I have been driving myself to disctraction since yesterday trying to find out all I can about this. Some people say they are fully recovered but many don't. This is a big deal surgery and I am both excited abut the possibility and scared about it as well. I also wonder why this finding was not investigated further four years ago. Will the MRI be the same or is it possible that the chiari has progressed?

THANK YOU to anyone who takes a minute to reply!!!!!

 
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Old 09-30-2011, 09:02 AM   #2
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Re: Chiari the cause all along?

I just happened to notice your post, and I wanted to ask if you've ever had a MRI of your cervical spine? Sometimes a Chiari formation can form at the top of the spine. If you haven't done so, you might want to have a consultation with a neurosurgeon who specializes in neck and back issues and does "spine" surgeries.

I see your are in upstate NY. Are you familiar with the Chiari Institute located in Great Neck, NY? If not, check out their website. It is one of the leading Chiari treatment centers in the world.

It is not all that surprising that your doctor was not familiar with Chiari malformation. There is no standardized diagnosis and treatment standards for Chiari, and MANY doctors have never heard of it. The average time to diagnosis for most Chiari patients is 8 to 10 years!! They are often tested for MS, among other things...just as you have.

I think you might want to travel to one of these top Chiari clinics for an accurate diagnosis -- either to rule it in or find out you do not have it. I doubt your local medical team will be able to diagnose you properly.

Please let us know how you are doing!!

 
Old 09-30-2011, 09:13 AM   #3
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Re: Chiari the cause all along?

Thanks so much for the reply and PM. I am trying to findout all I can so I will look at those websites. Right now I am thinking that the best thing is to wait and see what the MRI shows next week. If it is consistent with the one I had before I am going to contact a doctor in my area who has done the surgery, he's on a list I found of doctors who treat it. Most likely I will also contact the Chiari center in Great Neck.

As far as the surgery goes, I would so welcome relief from the pain I have been experiencing for so long. I kind got to the point where I just accepted that having a headache every day is normal. Maybe not though?

 
Old 09-30-2011, 11:22 AM   #4
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Re: Chiari the cause all along?

If it becomes necessary to have surgery and you have a Chiari malformation, please be extremely careful in who you select to do the surgery. This is very complex surgery and you want someone who is very experienced. But you can cross that bridge if and when it becomes necessary!

 
Old 09-30-2011, 06:22 PM   #5
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Re: Chiari the cause all along?

Another symptom I have that's harder to describe is the feeling I get sometimes that my head is not being held up by anything. It's almost like I can't feel my neck even though I know it's there. Very hard to explain...but can anyone relate?

 
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