posted
(Tonsillar Ectopia is a fancy term for slippage of the Brain Stem into the Spinal Column.)
I just got back from the Neurologist for the follow-up to my MRI.
He is a good doctor, but I don't bother mentioning Lyme (Chronic or otherwise) to him because he is from the CDC side of the debate and panics at it's mere mention.
He said my brain looked relatively healthy- except for one thing- he tentatively diagnosed me with Tonsillar Ectopia or a possible Chiari I Malformation (I'm thinking he's leaning towards the first.).
I figured my MRI might show up clean (as a SPECT Scan would have been better), but was surprised by this find- to say the least.
Is there any connection between Tonsillar Ectopia and Lyme Disease? I have had Lyme Disease for around 16 years, so the bugs have had plenty of time to spread around.
I've been told that since my brain stem has begun to slide down into my spinal column, if I would like to permanently deal with the issue or at least for a good deal of time- I need brain surgery.
This has me dangled above a double-edged sword. Whether or not the Tonsillar Ectopia was triggered by brain swelling from Lyme or not, I now have two health problems to deal with.
It truly shows the damage this disease can cause.
Both have very serious treatments to contend with and make it very hard to plan for a stable future.
Thank god that I am on SSDI- it's a godsend that I won't have to be worrying about that portion of my life as much. I also have a relatively good insurance, so that is something to smile about as well.
Any knowledge on this subject and a possible connection between Tonsillar Ectopia and if it can be induced by Lyme Disease is welcome.
Posts: 10 | From Western Massachusetts | Registered: Mar 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not just brain swelling, but lyme can burrow through bone, weakening it. Vascular damage also comes from lyme.
Chiari is not uncommon for lyme patients but there can be many causes of Chiari.
I would venture to same the same about Tonsillar Ectopia. Maybe but not necessarily.
If you have a good LLMD now, be sure to ask. Your LLMD should be made aware of this, for sure. If you are considering brain surgery, while that could be helpful, your LLMD should be involved in treatment prior to, during and afterward. Often steroids are used and that can make lyme blossom. But, there are safe ways to do that - your LLMD would know best, or refer you to a LL brain specialist.
I'd also want to get a second brain scan with different parameters, making sure it would be the best possible imaging test available. Then, another specialist's opinion.
See if there is a web or local support group for Tonsillar Ectopia so you can draw on experiences of other patients.
Have you had a blood test for genetic celiac? Celiac also causes bone loss. You can see some abstracts about that at PubMed.
I'm not sure if this article address cranial bones, etc. but it is very thorough and certainly address the effect of lyme on CRANIAL NERVES: -----------
When to Suspect Lyme - by John D. Bleiweiss, M.D. -
[ 05-10-2010, 11:00 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- veourtzigx9,
I see that on 04 April, 2010 you posted in "Seeking a Doctor" forum. Hope that goes well.
from another post of yours in another thread, you talked about ears. I also feel air coming through my ears when I breathe. you are not alone in that at all.
I do have some bone loss in my ear canals (and need surgery but am in no way healthy enough for that at this time). If you have a repeat brain scan, they should also check the ear canals but that takes very special settings on a CT. It might be good to rule that out.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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