Chiari diagnoses, but Nuero says not causing symptoms??

[HeatherLynn2013]

Started out with joint pain in feet and hands in June 2013. Progressed to entire body, along with fatigue,body stiffness then the head and trunk tremors and headaches started. At first the pc doctor checked for lupus, lymes, r.a., and Parvo b19 virus (along with many other tests). Only Parvo b19 showed positive for a past viral infection. Dr. Said it should run its course. Well I ended up visiting a neurologist because I got to a point that appear to have either MS or Parkinsons. That's how bad I am. MRI shows I have chiari (5 mm), the MRI csf flow study shows normal flow. Neurologist doesn't think Chiari is the cause of my symptoms. He ruled out MS and did the electricuting test on my legs...ouch! Needless to say that test was normal too. I'm so frustrated with no diagnosis. Does anyone have these symptoms? Please post!  Thanks!!

[selmaS]

  If it is not nerve damage, talk to your Dr as it may be something else going on....EDS can cause all sorts of issues as well  as a few other related conditions....

I am sending prayers it is just the nerves as they are healing and will at some point feel better....

Everyone is different I have heard of others with limited mobility but it was a leg issue and not an arm issue...but as I said we are all different...they are better now too...so something to stay positive about <3

[HeatherLynn2013]

Thanks Selma. It's been 3 1/2 weeks now and I still can't use my arms and they hurt so much. It was happening before surgery and isn't any better. It's gonna take time. And hopefully no permanent damage to the nerves. I'm taking it & resting a lot. Have you heard of pain and limited mobility issues with Chiari and what kind of treatments that can be done for this?

[selmaS]

  Many of us do see immediate improvements and some of that is the meds and drugs used for surgery...I am not trying to bring u down, but prepare u for when symptoms start to return...they will as u heal and then subside again.....and  keep in mind just bcuz u r feeling better now do NOT over do it, rest, rest and rest some more...

So happy to get such a posiitve update from you and I look forward to many more <3

[HeatherLynn2013]

I'm 2 weeks post-op. So far so good with recovery. I had a craniectomy, laminectomy, duraplasty and cerebral tonsilectomy. After all the NS who told me that it's not CM causing my symptoms, I can tell you that they were WRONG!  I've already noticed immediate improvements. Not all my symptoms went away but enough to know that CM was causing my symptoms.  I still have a long way to go, but I'm so happy to have found some relief finally!!  I know the surgery is not a cure, but it will hopefully stop progression of the problems I have caused by CM.  Good luck to all my fellow Chiarians.  <3

[HeatherLynn2013]

It was good to see this, thanks a million for posting it!

I will definitely keep you posted.  

[selmaS]

  What I wanted u to see is why they feel some surgeries fail, and what else could be going on...and how Chiari does not have to be the direct reason for the symptoms....just more info to share and consider.

Do keep us posted what u find out.

[HeatherLynn2013]

That was very interesting indeed.  I do not think my symptoms are related to the symptoms in this video, but it is absolutely amazing the knowledge these Doctors have about these issues.  Thanks for sharing.  

[selmaS]

  Got it....thanks for clarifying that for me....I did post a link to some other possible issues for another member who  is stumped, it should be just below this one...but I will repost the link here as well.

This is well worth a listen to for u and ur Drs as it may hold a key to what is going on.

http://vimeo.com/35765958

[HeatherLynn2013]

...cont.  Just want to clear up that the Neurosurgeon actually put the disc on the computer and literally showed us exactly what she was talking about.

Hope this cleared it up.  :)

[HeatherLynn2013]

It's a bit confusing because my prior Neurologist told me my MRI & CSF Flow Study came back normal.  The CM Neurosurgeon Specialist I saw most recently, told me the written reports of the 2 tests were not correct.  She pointed it out to me and my family while at my appointment, the 18mm herniation and the Syrinx as well that were both "overlooked" by whomever made the report.  She said this happens frequently.  But said the other Dr. should have known there was a problem with the condition I am in.  She could not believe it!  
They do not think it's EDS, but are considering Parkinson's Disease.  But I have mostly an Essential Tremor as well as a resting tremor, which I think is confusing them all.  I can't imagine trying to heal from brain and neck surgery with a head tremor.  Would be painful!  That is one reason why I am continuing to see doctors, until I find out what I am dealing with.  Then I will decide on what treatment I think is best, taking into consideration all the information I gather.
Another day in the life of trying to figure out a solution!  I'm gonna keep on keepin' on.  Thanks Selma, you've been a great help!!

[selmaS]

  I am a bit confused, u said the flow study did not show a syrinx, but they showed u a syrinx on the flow study disk?

  Sorry I am not following.....

I have tremors, but attribute them to my EDS.....as I felt that was the cause,....and  from what I recall was possible with EDS.

Have they ruled EDS out for u yet?

[HeatherLynn2013]

Update:  I think you may have seen my post on another board here, but just in case.  My CM herniation is 9mm, not the 5mm the first Neurologist told me I had.  Not only that, but the new Neurosurgeon I saw said that the MRI doesn't measure the proper way and it is actually an 18mm herniation and that it IS causing a syrinx.  The CSF flow study report itself showed no syrinx.  The doctor showed me the syrinx using the CSF Flow Study disc while I was at the appointment.  I had to be wheeled into the office in a wheel chair because I couldn't walk that far.  Going to the kitchen is one thing but anything much longer than that is next to impossible.  Having said that, she could not believe that my prior neurologist said that the CM was not causing me problems.  She did say however that she doesn't think the tremors are caused by it.  What is your opinion, have you heard of head and body tremors with Chiari patients?  Thanks for your help. I do appreciate it greatly!!  :)

[selmaS]

  I am not sure how movement disorder Drs work, parameter wise and if they are well informed on Chiari...if not, then it may not be as helpful as u would want.....

But I am curious as to what they will try and how it works...so do keep us posted....I do not recall neone going to a clinic like this..so far on this forum.

There is always new things to learn so I am open to hear how this works,

[HeatherLynn2013]

Thanks Selma!  
Next step is going to University of Michigan movement disorders clinic. I'm hoping they are more knowledgeable about what is wrong with me and how to treat me.

[selmaS]

  Hi and welcome to the Chiari forum,.

Yes, many with Chiari share those symptoms along with u.....I know it is frustrating but all the testing u have had so far is also similar to what many if us have gone thru too...and there is more testing .

Ur Dr has ruled out non related conditions with similar symptoms now u have to rule out related conditions with similar symptoms.

And u will want to educate urself on what testing u need and y and then research Drs to find the right Dr for u. Having the right Dr is key.