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May 08, 2006

Episode # 4 "Breakthru" 2006 Season of

As The Tonsil Falls

Ok, well I just got back from another new neurologist. I have to say that my appointment with "HeadacheGuru" was by far the most productive doctor's appointment I have had since I was diagnosed with Chiari last August.

We have scheduled retests of my MRIs for Brain and C-Spine. We ran blood work today and are rescheduling my nerve conduction study.

He wants to start over. For once I hear someone say, ok, so you have had three neurosurgeons tell you that you are borderline. Lets see why they think you are borderline. Hmm, well you have all these other diagnoses that if are valid, and you have the Chiari Decompression surgery, will not be cured and then you will be pissed. Um, yeah! I would. The problem was that he didn't see any direct correlations to believe all the original diagnoses. He saw a lot of lose ends. Lose ends that if they could be tied to something else, could explain a lot about the Chiari and anything else that might be wrong with me.

The problems he saw were:

First of All: I'm only 31, I've never been exposed to heavy metals, don't have diabetes, don't have thyroid problems, there is absolutely no reason for me to have polyneuropathy. The polyneuropathy was diagnosed last October by "TheDrugDealer."

This was the biggest red flag for "HeadacheGuru." Numbness and tingling in the extremities are a symptom both of chiari and polyneuropathy... but they are two separate conditions. Polyneuropathy means nerve damage, Chiairi is because of high cerebralspinal fluid flow pressure and compression of the brain stem. If the numbness is indeed from the chiari, the polyneuropathy tests that he performs will come back negative. After looking at the numbers from my previous test, he didn't think it was a true positive and wants to do the test himself.

Secondly: Carpal Tunnel: probably a valid diagnosis considering my extensive computer use (and the extra use of my hands in college doing sign language), but... that doesn't explain the numbness in my legs and feet. Last Thursday night I had like a foot/toe cramp in my left foot, except that it didn't hurt. It was just like my smallest three toes were just paralyzed and frozen straight out and I couldn't move them.

Thirdly: My headaches. Diagnosed as migraines but from the headache journal that I had to fill out the past week, it seems like my headaches have a lot to do with pressure. Especially since I experienced relief from Biofreeze. And the location and that they move and all. After the other tests are completed we are finally going to do a cineMRI to test for pressure.

I am going back on Zonegran now that all of the other drugs are out of my system. I am also going to start another new drug, Namenda, (an Alzheimer's drug) as an off-label use for migraine prevention. He said that this new drug should not have many side effects, because afterall it was designed and formulated for 80yr old AD patients.

Another aspect of my migraines and pressure, is that yesterday, after working in my yard for a couple of hours, I had the first nose bleed I have had in probably 10 years.

The "HeadacheGuru" wants me to consider Botox injections which are now being widely used to help with Chronic Daily Headaches. The problem here is that it usually takes 6 - 8 weeks to get an answer from insurance companies on whether or not they will cover it, and 90% of the time they deny the claim. Botox treatment costs about $2,000 every 3 months.

And Lastly: He wants to see the new MRIs compared to the ones that I have been carrying around with me for the last 9 months. If the tonsil as fallen, exactly how it is hanging, and if I possibly could have developed a syrinx which would better explain the drastic worsening of the numbness and headaches.

Also, after reading about Chiari on the many websites and emails in the support group, it looks as though most people are given two measurements, since there are two tonsils that can herniate thru the foramen magnum. After the original MRI, I was only given one measurement of 8mm. We would like to know where the other one is: is it in its normal position? has it fallen and wasn't noticed? is it laying across the foramen magnum blocking fluid flow?

Then he said after we get the smoke cleared, the tests redone and a new starting ground that he would also be sending me back to "TaperGuy" for treatment with my Obstructive Sleep Apnea, as sleep disorders are his specialty.

There was a lot talked about in my appointment today and I wish I would have taken a tape recorder to remember it all.

Stay tuned for to next Monday, May 15th for the next episode: Episode #5 "New MRIs" of As The Tonsil Falls.

Posted by FutureFoodTVStar at May 8, 2006 11:40 AM

Comments

Posted by: Kami at May 8, 2006 04:06 PM

Posted by: Football Widow at May 8, 2006 04:52 PM

Posted by: Suzie at May 9, 2006 03:08 PM

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