Tachycardia & Chest Pain & Burning in Spine - Is this common in Chiari?

[WellLovedMom]

Hi all!
I'm visiting from the RSD board, and have been ill since 10/15/03. At this point I am now mostly bedridden, and have gone through the diagnosis of MS, Meniere’s and Chronic Fatigue (which I understand usually gets better with rest, not worse, and doesn't last - nor progress over 3 1/2 years).

I have a whole host of Chiari symptoms (Extreme migraines, pain in back of head, neck, shoulders, burning down spine after sitting upright 2-6 hours, vertigo, double vision, loss of balance, chronic nausea, extreme exhaustion, pain, tremor in left arm, burning in both arms, brain fog, chest pain, + more, but you get the idea - oh yeah, my husband has commented often that one pupil is larger than the other). I am on Social Security Disability, so at least that is something. My concern is that my Primary care doctor simply gave up and tossed his last, final "label" of Chronic Fatigue on me - all while I'm getting worse. MUCH worse. At least with "Chronic Fatigue" at each visit he simply tells me "sorry, but you have to accept that you are not like the other moms, and that there is nothing we can do to help you.":mad:

I realize that no one here can magically diagnose anyone else, (don't we all wish someone could, along with a CURE!!!:D ), but I wanted to know if anyone diagnosed with Chiari has this PAINFUL racing heart??? I've had all of the heart tests (EKG, Treadmill stress test, halter, and ultrasound) and have been told that my heart looks just fine - but it is uncomfortable, tiring, and IT HURTS!!! I've had this for 3 1/2 years (resting rate 110-120, walking around the house 130-140). I guess these aren't extremely high rates, but they are exhausting and worsening. I have been getting stabbing chest pains over the last month several times a day, lasting from around 15 minutes to several hours. Oh yeah! My blood pressure is a bit all over the place. It ranges from 167/89 to 98/60. The BP isn't even tied to my heart rate. They both just kind of do their own thing.

I receive Botox injections in my upper neck, back of my head, and shoulders for my "migraines" which has lessened the pain, but a new feeling of FIRE burning down through my spine and up into my neck/back of head/across shoulders over the past month is now also very concerning. I HAVE to lay down and rest my body for several hours when this hits (not sleep, just rest) or I quickly get worse, and will be down for days. This DOES NOT fit Chronic Fatigue. I also have pain and burning down my arms, have lost strength in my left arm (used to be stronger hand than right, now is weaker), and over the past week my palms have started prickling/burning/loosing sensation. (I realize that sounds dumb, how can they hurt AND be loosing sensation???:confused: ).

I live in California, in the SF Bay area, and have Kaiser HMO medical insurance, and am REALLY concerned that no one in the health group will have ever heard of Chiari, let alone know how to recognize or treat it. (Most docs I've seen only have a text book overview understanding of my RSD- Reflex Sympathetic Dystrophy Syndrom, so I am VERY skeptical.) I realize that I need to get a new set of MRIs (I have my set from 3 ½ years ago, but since then I have gotten MUCH worse, so an updated set would make sense for diagnosing.) I want to get help and find out what is ACTUALLY wrong, but I'm afraid that I may be able to get the films, no one will actually know how to read the images correctly, or know what to look for with Chiari.

I've done some research, and found on the www.wacma.com site, they have a list of doctors who have some experience with Chiari. The California Kaiser doctor listed is:

Dr Daniel Won, Neurosurgeon, Kaiser Permanente, 411 N. Lakeview Ave, Anaheim Calif 92807.

Has anyone here seen this doctor, and if so, any feedback? Also, does anyone have any feedback on the Tachycardia and burning in my spine?

Of course, now that I have taken your time I’m sure I’ll find out that it’s nothing (or at least not Chiari), but I AM really concerned, especially as my symptoms are progressing, and I’m terrified of dropping dead from a heart attack :eek: (I’m only 39 and have an 8 year old son and a 10 year old daughter, so I want to be here for them!!!)

Thanks for anyone who has stuck it out through my L O N G post, and I really look forward to any feedback!:rolleyes:
Maria

[Rozia]

This is the Chiari expert in California . Alot of people go to him.
Ulrich Batzdorf, MD.

http://neurosurgery.ucla.edu/Faculty/Batzdorf/Faculty_Batzdorf.html
Professor of Neurosurgery and Director of Spine Surgery
http://neurosurgery.ucla.edu/Programs/
David Geffen School of Medicine at UCLA
Los Angeles, California

also others :
West Coast Neurosurgeons Experienced With Chiari Malformation
After reading voluminous web sites about CM/SM and seeing repeated mention of the names Dr. Milhorat and Dr. Bolgnese in New York, we started wondering if New York had a lock on Chiari surgery expertise. That’s simply not the case. I am sure that Drs. M & B are great at what they do, but so are many other neurosurgeons across the country.

Here is some general info on West Coast doctors that deal with Chiari Malformation / Syringomyelia (CM/SM) on a regular basis. I’ll add more information as time allows and as I get new information.

Dr. Leslie D. Cahan
Kaiser Permanente, Los Angeles (Sunset)
Dr. Cahan does all of Kaiser’s pediatric Chiari Malformation surgeries. We have met him personally and we are currently scheduled with him for Jaden’s surgery in mid April, but we are hoping to move that appointment up. Obviously, we feel very confident in Dr. Cahan’s expertise in decompression surgeries. His skill as a surgeon was verified by a non-Kaiser doctor we consulted for a second opinion (Dr. McComb, below).

(Update: We used Dr. Cahan for Jaden’s surgery and he did an AWESOME job, by the grace of God!)

Dr. Soohoo Choi
Kaiser Permanente, Anaheim (Lakeview)
We were referred to Dr. Choi by Dr. Cahan to get an intra-Kaiser second opinion. We met him, and although we would probably feel comfortable with him doing the surgery, he said that the Sunset facility (where Dr. Cahan practices) has a pediatric ICU, while the Lakeview facility does not. He also told us that he does more adults, while Dr. Cahan generally handles pediatric patients. For these reasons, we have scheduled the surgery with Dr. Cahan. We later found out that Dr. McComb (below) trained Dr. Choi and has a lot of confidence in his abilities.

Dr. J. Gordon McComb
Hollywood Presbyterian Medical Center, Los Angeles
Children’s Hospital, Los Angeles
We saw Dr. McComb to get a second opinion outside of the Kaiser system. He was extremely thorough in explaining things us and was very knowledgeable about Chiari Malformation and its unique symptoms. For non-Kaiser patients, I would highly recommend a consultation with him.

Dr. Ulrich Batzdorf
UCLA Neurosurgery
This recommendation came through a CM/SM patient who called me with a good report on Dr. Batzdorf. She also recommended Dr. Lazareff for pedes patients.

Dr. Jorge A. Lazareff
UCLA Neurosuergy
I received positive feedback on Dr. Lazareff for his treatment of pedes Chiari cases.

Dr. Richard Ellenbogen
University of Washington Spine Center
I recieved positive feedback on Dr. Ellenbogen for those nearest to the Seattle area.

[WellLovedMom]

Rozia,
THANK YOU!!! I too kept reading about all of the experts on the east coast, and was really starting to worry that I may not find someone here on the west coast who really knows their stuff. I appreciate your help!!!
Maria