Can Lyme Induce Tonsillar Ectopia

[loschung]

(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.

[wonko]

We used to have a poster here, "patsy10," who wrote about her experience with Lyme and Chiari.  I found one of the old posts, the link is below.  You may be able to contact patsy10 with a PM through MedHelp.

http://www.medhelp.org/posts/Lyme-Disease/Low-Lying-Cerebellar-Tonsils/show/951544

[loschung]

In my case I think I may have gotten hit twice. I do actually have Lyme Disease- I've tested equivocal positive twice, enough for any LLMD to diagnose me.

So regardless of whether it's congenital or acquired, I either have had Lyme so long that brain swelling has caused some form of damage or I simply was born with Chiari Malformation 1 and happened to get Lyme Disease as well.

Life is evil like that, but I just keep rolling with the punches. LOL!

So I do know that I have Lyme, I just don't know if I was born with the brain stem issue or acquired it somehow, seeing as a Chiari Malformation 1 cannot cause your tests to come back positive for Lyme.

Thanks for commenting.

:)

[selmaS]

HI...if u suspect chiari malformation or Tonsillar Ectopia which I feel r the same....one may be considered congenital the other acquired, but the same symptoms and issues result.

With chiari ur skull tends to be too small to contain the cerebellum....however, the TE as it can be acquired it could be from things like a LP that was drawn too fast.

many with chiari r tested for lymes, lupus, MS as many of the symptoms do overlapp, and many times we get mis dx as many drs do not feel chiari is  or can cause the issues we suffer with.

I pray u find a true chiari specialist and find out if u do indeed have this condition.

Please join the chiari forum here on MedHelp for more info and support.
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc&personal_page_id=862904

"selma"

[JackieCalifornia]

If you google 'tonsillar ectopia lyme', you will see your post on mdjunction at the top (it's good you are diligent!) and then some links that might be helpful.  

Have you spoken with your LLMD?  S/he may have be able to refer you to a neurologist who is more tuned in to Lyme.

That would be my second stop, after checking ILADS [dot] org to see if they have any information on the topic.

Let us know what you find out -- and best wishes to you.