ACM/Arachnoiditis/Trigeminal Neuralgia/Stenosis

[Mark]

Hello,  Thank you for allowing me to post on your forum.  I really think that what you do for others is phenominal.  Thank you for being there for us!

I am 42 years old with Arnold Chiari Malformation, Arachnoiditis of the brain, Trigeminal Neuralgia and Stenosis from an original neck fracture C-5/6.

I have undergone fusion C5-6 and 6/7.  I have also had gamma knife surgery for the TN.  I have had decompression surgery/C-1 laminectomy and duraplasty for the chiari.  Each time I do better for 3-6 months and then fall back to the extreme muscle spacticity, total fatigue, imbalance, vertigo, visual blurring, arm,hand,leg and feet stiffness and extreme pain.  I have POTS and the breathing problems that go with that.  By far the worst symptom is the pain that has regenerated with the TN and the constant excrutiating head pain from the Arachnoiditis and Chiari.  I have undergone multiple spinal taps also to determine if shunting would help.  The levels were 25, 20, and 23. My nsg states that he is finding that some chiarians after decompression seem to compensate to this level of pressure and accomodate it to be high pressure to them, but upon shunting, their brains seem to re-accomodate again and need to be 'dialed down' lower and lower upon finally ventricle collapse, so he is not advocating shunting anymore. I have blocked cerebral flow due to the scarring.  I am losing more and more mobility due to the conditions also.  

There seems to be nowhere to go from here.  Do you know of any other alternative miracles available to me at this point?  I am being advised to start taking methadone daily for the pain, as that is the only thing that even touches it.  I am aware of the almost certainty of addiction, but feel that to have any quality of life left, I must try it.  My blood pressure is also elevated due to the pain level.  Usually 180/110 during the peaks.  I am taking Calan, but will probably change to blood pressure meds soon.  Is there any idea of how long you live with all of this?  I have never asked my nsgs that question, but lately it seems important.  Do you know if a hyperbaric chamber might be of use with the increased pressure on my brain?

Thank you for reading this and I appreciate any ideas that you may have for me.  I have traveled far and wide to see the best of the best and would love to hear of anything, no matter where it is.  Your forum is the best!  Thank you again!

Mark

[Mark...I too have ACM..Decompression Fai]

Hi Mark,  I read your problems and I know how you must feel...there are several patients with this condition even after decompression are have return of symptoms.  Mine started back after 6 mos...looking at possible Syringomyelia as the culprit of symptoms.  I too have low b/p, swallowing, breathing difficulties, balance, vertigo, visions problems.   Have you looked into the support group ...WACMA...world of Arnold Chiari Malformation Association for help?  Here is their url link...
http://www.egroups.com/chiari   Plus, another site...http://www.4asap.org   ...syringomyelia/arnoldchiari malformation.

Hope this information finds you and is helpful.

Sincerely, Anneliese Reitz

[CCF Neuro[P] MD, RPS]

Dear Mark:

I am sorry that your symptoms and problems are so many.  I am not sure I understand the problem with either a third ventriculostomy or shunt workup to see if either might be feasable.  Yes, after the brain has been constantly under high pressure there is a certain "stiffness" that occurs and the brain becomes less pliable.  However, with the newer pressure valves, shunts are better able to respond to tight pressure settings.  There are many inherent problems with shunts such as malfunction and infection and these need to be considered.  I would see what another neurosurgeon might have to say.  

Sincerely,

CCF Neuro MD