Has anyone out there developed the Chiari 1 Malformation with their disease? This is something new on the last of my 3 MRI's since December 2010.
Posted by Lymetoo (Member # 743) on :
We have had a FEW here with Chiari and Lyme. You can do a search here. Click on the little word "search" in the upper right portion of this page.
Indicate "medical questions" as your forum in the search.
---I'll move this to Medical for you where you may get more repsonses.
Posted by stillwater (Member # 30312) on :
No, to the best of my knowledge Lyme can not cause a Chiari. Most Chiaris are found by accident during a routine MRI. Some radiologists don't even note them if they aren't big. That may be why your other reports didn't note it.
I've had plenty of Brain MRI's during my life, and the last one described a 7mm Chiari Malformation I. In fact once I read that report I was convinced that's what I had.
Except for one thing... I don't get the Chiari headache which is the number one symptom.
From what I've read, Chiari's are much more prevelant than once thought because so many more people have access to MRI's.
The vast majority of Chiari's are asymptomatic.
Don't go down the road of worry I went down 2 years ago. I'm sure it's an incidental finding. How large is it?
Posted by LSG Scott (Member # 21624) on :
stillwater is right but it can get bigger with lyme and then smaller with treatment
god bless
Posted by desertwind (Member # 25256) on :
I have Chiari 1 Malformation AND Neuro. Lyme.
In my experience chiari malformation does not get bigger with lyme and smaller with treatment. If that were the case I would never have needed brain surgery since I have been treating lyme off and on for 7 years.
As with any disease lyme can make symptoms worse as it causes inflammation in the body - but lyme in and of itself will not cause the degree of herniation to increase - that is based on my experience only and from speaking to numerous Chiari experts AND LLMD's.
I have seen 4 of the nations top Chiari Neurosurgeons as well as some of top LLMD's and have a wonderful team that works well together in my treatment.
CM1 is a structuaral issue that cannot be caused by lyme - this is according to my LLMD and NS. Even if there is alot of brain swelling from lyme it will not cause your celebellar tonsils to herniate through your foramen magnum.
While an MRI will show a CM1 malformation a CINE Flow study is what is needed to check to see if the CSF flow is obstructed by the cerebellar tonsils. There is also the concern with pressure on the brainstem.
I was a candidate for surgery as my herniation was large enought to obstruct CSF flow and there was pressure on my brainstem. I had symptoms consistant with CM but also overlapping symptoms of lyme.
Last summer I had a Occipital Craniectomy, Posterior Fossa Decompression w/ duraplasty (from a bovine pericardium) and C-1 laminectomy to correct the structural defect and free the flow of CSF.
Fast forward 8 months. I had am still in lyme treatment and can now tell what was coming from the CM1 Malformation and what is lyme.
There is another member here with CM that also had surgery but I have not seen that person on the boards lately. Maybe he/she will chime in.
Posted by triathlongal (Member # 31684) on :
I have not been on these boards for a long time. Former screen name was Trigal. Lost my password, changed computers, blah, blah, blah....Now back as Triathlongal.
This post caught my eye because I am another lyme sufferer who also has chiari 1 malformation.
Became symptomatic with CM1 about a year after being treated for late stage/neuro. lyme.
I agree with everything that desertwind wrote and really do not have much to add. When you have a condition such as this is, like lyme, it becomes your job to become a lay-person expert in it.
I do want to add that most Radiologists will not diagnose CM1 unless your herniation is 5mm or more (sound familiar?). Problem with that is if you have a small anatomy a herniation as small as 3mm can cause an obstruction in CSF flow - hence as desertwind wrote - the need for a CINE Flow to determine if one is a surgical candidate.
I too had the decompression surgery which helped reducemy my CM1 symptoms by about 75% but still tx'ing off and on for lyme.
Posted by ktkdommer (Member # 29020) on :
Son with Chiari just had flow study today. Meet with neurosurgeon on Thursday. Seems like a long wait.
Posted by Lymetoo (Member # 743) on :
Sorry to hear! Make sure he gets checked for EDS also. It is often related to Chiari.
Posted by Robin123 (Member # 9197) on :
Yes, I know someone with Lyme who had the chiari presentation.