Chiari Malformation Community
Breakthrough!! Surgery questions...
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Breakthrough!! Surgery questions...

I was gone for awhile b/c I became so fed up  with docs not thinking Chiari was causing my symptoms (they said Pseudotumor Cerebri) that I couldn't even discuss Chiari anymore.  After another spinal tap revealed that a year of hefty doses of the meds for my high pressure didn't seem to change it any they agreed I needed to see a neurosurgeon for a shunt. I saw him yesterday and to my surprise he addressed my Chiari right away.  He showed me my films from the MRI and immediately said my problem was Chiari and not what the other docs were saying. He is a GOD SEND!!! He was so kind and understanding!  I am getting my decompression surgery on June 23rd!  He said a shunt (especially an LP shunt) could make my Chiari worse and the probability of infection and having additional surgeries on the shunt was almost 100% especially for someone of a younger age (I'm 29).  BUT now that I feel validated --- any advice for someone getting the surgery? What should I expect?  Tips on recovery?  I'm going to research it but getting firsthand knowledge is always beneficial.  Thanks so much in advance for any advice given!
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620923_tn?1416285879

Hi Meggy welcome back and congratulations on finding a dr that is listening to u!!

  We do have a Health page on tips for the hospital....and post op exercise......but how u respond will be diff then the rest of us....

  It is not uncommon for those with chiari to have PTC along with it or develop it post op.....so do be advised.....

Post op...rest...no lifting, bending...just rest and do the neck exercises the dr gives u so it heals correctly.....outside that u have to see how u feel to know how long ur recovery will take.

  Were u checked for Ehlers -danlos? this is one condition I feel should be looked for b4 surgery as it can impact the overall surgery and recovery.

U will want  to know exactly what type of decompression ur Dr will be doing...not all do a dura plasty and lamanectomy....u want to know what type of patch will be used.....

what post op visits this dr will do with u.....6 week, 6 month and 1 yr?

DO u have a good NL to work with as well post op?...it is good to have one that understands chiari or an open minded PCP that is willing to learn as much as possible.

Here is the Health page links , link..http://www.medhelp.org/posts/Chiari-Malformation/HEALTH-PAGE-LINKS-/show/1146333
and a link to the Health pages in general-http://www.medhelp.org/health_pages/list?cid=186
and ?'s for the NS-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

  "selma"
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1635408_tn?1305730350
Thanks so much!!! Those links will be so helpful.  I really appreciate it. :)
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992677_tn?1337358095
Selma covered the bases.

The only thing that I would add is - do whatever it takes to stay calm. Calmness now and going into the hospital for surgery will aid in your recovery. It's not just a mental thing either the body tends to heal faster when we can keep the stress levels down.
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1689427_tn?1308135598
I'm so glad u got what so much are still waiting for!!! I'll be praying for you In the Weeks to Come!!!
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