Topic: Husband needs brain surgery for Chiari..and has neuro lyme!
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I know I have read on here about some people with Lyme also have chiari I malformation.
I understand that Lyme doesn't CAUSE this malformation...but surely it has some sort of effect on it, doesn't it?
My husband had a brain MRI 2 years ago and nothing at all was mentioned about Chiari. Now he has bad symptoms (dizziness, weakness, blind spots in vision and his head hurts any time he coughs or moves certain ways)
MRI came back with Chiari AND with "ischemic changes". Our primary doc did not know what the latter phrase meant. We were told to seek a neuro surgeon and that he may need more than one surgery???
Does anyone here have any info? He is scared to death.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I had the brain surgery for Chiari last year - while still in treatment for neuro-lyme. I also needed a C-1 laminectomy and a duraplasty. Is no easy surgery.....
Many times Radiologists will miss (or rather not make the diagnosis) the diagnosis if the herniation is less then 5mm...
Be very careful of what sort of material is used for the duraplasty - best to use your own material. I developed aseptic meningitis secondary to the bovine patch and needed 4 months of steriods.
Is he being treated by a Chiari specialist? . Sounds like there could be blood flow changes in his brain? Did he have a CINE Flow to check for CSF blockage? Do you know his degree of herniation?
IME/O Lyme does make Chiari symptoms worse due to the inflammation Lyme causes - things are already too compressed back there and when you add in neuro- lyme things get more symptomatic.
I have a ton of info. that I would be happy to share with you regarding chiari and the surgery. Feel free to PM me.
Posts: 151 | From North East | Registered: May 2011
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posted
I am so surprised to see this. I have had so much trouble with neck pain, burning sensations, tingling, debilitating fatigue etc and have been treating lyme and friends for over 3 yrs and just getting worse. I just found out last week I had Chiari Malformation 1 with 6-7mm herniation. I'm still in shock. I had an MRI of my brain 5 yrs ago and this wasn't reported. Can I have some of your info too?
Posts: 383 | From Ar | Registered: May 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Thank you Triathlongal. I'll send you a PM shortly.
We don't know yet how many mm it is..over 5 we know. We were too much in shock to ask and the info was given over the phone.
We haven't found a surgeon yet..how do you go about finding one that you KNOW is a good one?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Chiari can cause POTS or postural orthostatic tachycardia syndrome. My youngest with POTS had the MRI but not chiari.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Someone here went through this surgery last year and is doing well now, I think. If you want more info, you can pm me.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I did lots of research on this back in 2003 when I had all the dizziness etc. I did have surgery at C5/C6 that did not help much. After some lyme treatment I did better but not cured.
It's my understanding that a brain infection will cause inflammation which could push down the cerebellum/ brain stem toward the spine restricting fluid flow. I did follow some people that had surgery some actually got worse and some got better. I wouldn't know what to say to someone considering the surgery , only to be careful and get a few opinions I got six and decided not to have Chiari surgery.
Cervical stenosis can also cause this according to Dr Heffez ., (Chicago) You can google him if you want.
Posts: 789 | From CT, | Registered: Jun 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Woah, this is serious! I've sometimes wondered if I have it. But no one has said that I do from 2 MRI"s, although I didn't know to ask then. I do have serious stenosis though that caused severe symptoms for a very long time. The neuro surgeon didn't recommend surgery at that point, however.
It sounds like LD CAN cause this, although maybe that's not always the case.
Posts: 3771 | From around | Registered: Mar 2008
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posted
zil; I will PM you the same info. I send to IckyTicky.
Very important is whether or not the degree of herniation is actually causing an obstruction in flow. Some people with bigger skulls can have a 5 mm herniation with no flow problems but the same herniation on a different anantomy will yield difference results.
The only way to know for sure if CSF flow is obstructed is a CINE Flow. Most if not all C.M. specialists use that as one of the criteria for surgery. So in that sense it is not so much the degree of herniation but rather how much the herniation is obstructing flow - which correlates to compression of brain stem.
Anyway..I will PM you guys with more specifics in a bit.
Posts: 151 | From North East | Registered: May 2011
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