Chiari Malformation Community
chiari center long island
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chiari center long island

hi all, i am considering going to the chiari center in long island, i am so tired of the doctors here not knowing much about chiari and related conditions.  they do not even realize all the symptoms that come with chiari.  i have had a decompression that took away symptoms for a few months but now they are all back and have more symptoms i am dealing with also.  everytime i see another doctor they put me on another med for pain, headaches, nerve pain etc.  sometimes they do not even realize that what they prescribled me could cause very bad reactions because of the meds i am already taking or could cause drugs to interfere with one another.

my main question is that when you go to the chiari center do they address all symptoms and do tests to see if they are caused from Chiari or another underlying problem?  do they go over all the meds you are taking and help you to determine what meds you really should be on?  do they look at the BIG PICTURE?  
my CSF flow is also being disturbed again and have crowding again so want another opinion on whether another surgery would help or not. i also have a lot of cervical disc problems and want to find out if some of my symptoms could be coming from that.

thanks for taking the time to respond to my questions and for sharing your experiences.
Cathy - cfinniss
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620923_tn?1405964489

  Hi Cathy,

  I went to TCI, but as a first time patient...so I do not know how they will handle u and meds u r already on for a previous surgery...I did have a roommate that was there for a re-do that another NS had done.,

That said, I did have to give a list of all meds...dosage, how long I was on it etc....so I am sure they will look at ur meds.

How long since ur surgery?...could ur CSF issue be from scar tissue?

I am sure TCI will look at the big picture as they have their own orthopedists and  NL working from the same offices....

Good luck and do keep us posted : )

  "selma"
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798548_tn?1237507253
thank you once again Selma for all your help and taking the time to answer my questions.
i had my first decomprission in Jan. 09 and almost all my symptoms went away until about 3-4 mos. after surgery when they started returning.  an MRI showed CSF was being obstructed but not totally and crowding again at the foreman magnum.  most likely scar tissue.  NS did not open the dura and sew in a patch just removed skull bone and back boney structure of the C1.  Doctors are trying to decide if second surgery would help my symptoms or not...
i have read about Dr. Di who used to be at Cleveland Clinic and he does endoscopic chiari surgeries and was thinking of seeing him to see if he could go in and explore the area endoscopically and if scar tissue is causing the problem see if he can take care of it endoscopically.  

the doctors here just keep adding drugs to take for symptoms...i have had symptoms since before surgery and drugs and now they are saying maybe drugs are causing rebound pain but the only new pain i am having that i did not have before surgery is nerve pain and pulsatile tinnitus and waking with wicked throbbing headaches that go away once i am up walking around for a bit, about 20 minutes then they go away...
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620923_tn?1405964489

  Hi Cathy...I have heard that the procedure u had is less invasive, but many times needs a redo as it does not help...and these issues reappear.

It could be scar tissue or what ever was there to begin with.....they used to do mos t of the bony decompressions on children to avoid opening the dura...only to have to redo them...

This could just explain y u r having the issues u r.....I understand now.,

  I pray we all hear from Dr Di soon...there r sooooooo many of u waiting on him.

"selma"
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