MS was officially ruled OUT today :-)

[dkdean]

Back to "just" Chiari.  I do not meet the criteria for MS.  So, now officially a surgical candidate for decompresion (again)...just am not sure I am ready for another brain surgery (1st was in December on the temporal lobe to a remove a mass that found incidentally when taking another look at the cerebellar tonsils).

What else should I ask be done in terms of testing to be sure I should go through with the decompression?  These symptoms are really progressing and I know something needs to be done.  

Also, what meds are people taking to help with:
**Visual disturbances (halos, floaters, goggle vision, cannot drive at night, shadows)
**Dizziness
**Numbness
**Coldness in hands
**Buzzing in various parts

Taking kids to bed...BBL :)

[*Stormy*]

Well I guess that it is good to have MS ruled out...but unfortunately you have the Chiari battle ahead of you.

This may not be what you want to hear but I have all of those things you described above (post op) and I haven't really find a med yet that has helped with any of them. I do take Lyrica and Amitriptyline but I wouldn't say that I have had great success with either... I am on the look out for something that works myself. Some sound advice I was given was to try to get into a pain management Dr b/c they will take a good look at the "big picture" and they are experts in medications which a lot of other Drs that prescribe these things really AREN'T!! So I am thinking of taking up that advice.

As for the surgery...I honestly didn't have a heck of a lot of testing. I have very noticeable outward signs that things were going wrong (my gait) and I had progressed very quickly. I had an ENP and EMG but I didn't find them to be very helpful in my diagnosis as the NL still couldn't figure out what was wrong. So I just had a basic MRI and it was the NS who pointed out the extreme crowding in my brain I could see with my own eyes that there was little to no flow compared to the other side. So at that point, I just felt that I couldn't wait any longer and it was worth the risk for me vs progressing to needing a wheelchair or something. So..that would be my recommendation, find a NS that you are comfortable with and seems knowledgeable and then you have to weigh the risk of surgery against the effect of the symptoms of your life. Oh, and this NS should be someone who you can ask any question to both before AND after surgery!!

Take care
Carolyn

[selmaS]

  Hi...I would say Pam has the tests listed u should check into...I would also say  look into Ehlers-Danlos as well.

And I would also add, testing for the auto immune thyroid condition Hashimoto's......u need to test TSH, free T3, free T4, and TPO antibodies.It can cause some of the same issues u mentioned and  many chiarians do deal with autoimmune and connective tissue issues.

  "selma"

[pamk5]

I think that is good news no MS!  Well the test that I have had are:

tilt table
echocardiogram
holter monitor
urodynamics are ordered but I havent done yet
Mri of brain and entire spine
Cine MRI
Numerous blood tests.  I am not sure what all I have been tested for.
CT angiogram.

Surgery will be soon.  

Meds I am taking:
Lorazepam to slow down my heart rate, help with POTS symptoms, anxiety
Robaxin for muscle spasms, neck and back pain
Hydrocodone for pain
Meclizine for dizziness
Atenolol for POTS and seems to lessen the headaches.
Tigan for nausea and vomiting
I have a frennell prism (sp?)) on my glasses that seems to stop some of the double vision and glare from lights.

I probably need to be on neurontin or something like that for nerve pain and burning but I dont want to take anymore drugs with surgery so close.  

I hope this helps.  Keep us posted.

Pam