Chiari Complications

[Resa181]

I was diagnosed with Chiari I and was decompressed in 2005 by my neurosurgeon, Dr. Stephen Kiefer, Lexington, KY.  Dr. K did a wonderful job taking care of me and my symptoms were relieved for a couple of years.  Now they are slowly creeping back to where the headache is again my constand companion, my blood pressure is no longer under controll and I am taking 2 different types of medications, I can no longer sleep at night, the nausea is back all the time and I again losing weight and the numbness and tingling in my hands and feet is becomming very bothersome.  I had to quit working, but luckily I was able to retire.  But I am not going to be able to seek any kind of part time work to supplement my retirement to help with medical bills and I am having problems even doing my house work..  I have had 2 spinal taps since April to reduce the CSF pressure in hopes that would ease some of my pain/ headache/ tingling but it has not.  I go to the Dr. tomorrow and we are going to have a long talk.  Any Suggestions Anyone?  I did not want to have to file for Social Security Disability yet because I am only 58 years old.  I retired at the advise of my Family Doctor and my Neurologist and thought that a less stressful work environment would help - I had worked for the Federal Government for 30 years and I was hoping that I could obtain a part time job, but my health right now with these headaches are not going to allow me to even do that.  I were to the grocery store yesterday and was so sick when I came home that I had to go to bed - my head felt like somebody was hitting me in the back of my head with a ballbat and both of my hands were numb and tingling and I was so sick at my stomach!!!  I just dont understand. I would welcome feedback from your readers.

[Resa181]

Sorry it has taken me so long to post again.  I had surgery again in 8/2012.  My neurosurgeon found excessive amounts of scar tissue and what he called brain sag or "ptosis".  He decompressed me again and placed a titanium sling in the brain area and there is some improvement slowly, especially in the numbness in my hands and feet, but the headaches are still a problem requiring pain management.  But the Dr. said it could be a year before I noticed any full improvement from the surgery and it would not be a cure all.  At this point, I will take any improvement I can get.

[selmaS]

  Hi...it is possible for u to have a CSF obstruction following a PFD due to scar tissue, not sure when  or if u had a recent MRI....

Another issue could be that u have cerviocranial instability , making u feel like a bobble head, and it can cause many of the same symptoms.

Last, some chiarians develop ICP post op....increased intercranial hypertension. which would explain the LP's they did...no one seems to know why some develop this and not all of us.

May I ask were u dx'd with EDS b4 or after ur surgery? If so, did u have a dura plasty, and again is so what type?

I hope u join us for support in the Chiari forum here on MedHelp-
http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

[S. Kaul, MD]

Hi there!

Well, it would be difficult to comment on the situation without a detaild clinical evaluation. The symptoms could result from increased CSF pressure or due to other reasons such as peripheral neuropathy, increased blood pressure, medication side effect etc. It would be best to have this evaluated by your treating neurologist for an accurate diagnosis and appropriate management. If increased CSF pressure is found as a likely cause it would need to be medically managed for sometime till we can do a review decompression. I would suggest discussing the situation and the suggested management plan in detail with your treating doctor.
Hope this helps.

Take care!