Instability, shunts, chronic meningitis. Surgery questions

[Krystinamarie]

So a quick background: I had decompression surgery for Chiari type 1, May of 2014 and my symptoms (migraines/headaches, nausea, general pain, vision problems, pressure throughout head when standing/sitting etc) have not improved.

I have met with Dr. Bolognese from the Chiari Institute and he has ordered a spinal tap and and upright MRI. He told us that he feels it is now an issue of instability. He described it as me being a bobble head. He also said there could possibly be a problem with CSF and pressure and said that I have chronic meningitis.

From what I understand when the upright MRI confirms the instability my options are to continue with physical therapy or have surgery to make adjustments to support my neck/head. And if the spinal tap comes back showing problems, I would be looking at getting a shunt. I'm not sure what I'm supposed to do about the chronic meningitis though?

I guess my questions are:
Has anyone who has had decompression surgery for Chiari 1 had to go in for a second surgery to address instability? I have had no luck finding anything online.

Has anyone had to go in for a second surgery to have a shunt put in? I'm curious what to expect. I understand everyone's experiences are different, but recovery times/hospital stays/ did you get relief or experience complications?

Is there a fix for the chronic meningitis? Or will it just go away on its own?


Thank you in advance!

[selmaS]

Surgery for instability is generally a fusion....they fuse vertebra to help stabilize the cervical area of the spine.... which is made more unstable by the space made during decompression surgery...as they chip away part of C1 and C2 vertebra. With the fusion you can loose some ROM.

No Dura...could be part of the issue that you have excess fluid building up.....I hope they try to correct that and check you for EDS (which I am sure Dr B has done already) and go from there.....

[Elisaandbucky]

Hi again,

I thought my care in the hospital after my surgery was amazing. I especially appreciated that the anesthesiologist came to check on me after I got to my room. The nurses were very caring, as well as the physical therapist, who came to help me walk each day.

[Krystinamarie]

It sounds like we are on very similar paths! I hope your recovery is coming along well. Dr. Bolognese ordered the upright MRI because he wanted to compare it to a few other MRIs that I've had done over the last 9 months. Were you pleased with how your surgery went and the care you received afterwards?

[Krystinamarie]

My surgery was done by Dr. Belverud in California, both doctors have worked together so my case was transferred to Dr. Bolognese when I moved to New York. No patch was used during my surgery. My body did reject the sutures that were used when closing me up and my scar continuously bursts open due to a pocket of fluid left over from surgery.

He didn't specify what type of meningitis all he said was chronic. I'm assuming they will be testing for it when I have the spinal tap next week?

Are you aware of how intense for lack of a better word the surgery is to address the instability? I understand everyone handles surgery and recovery differently but just having some sort of idea as to what I should expect would be comforting.

[Elisaandbucky]

Good morning, just last Friday, 2/6, I went to see Dr.B for my 6-month post-op visit. I had the decompression in July. You are 3 months ahead of me with recovery. Like you, I continue to have symptoms. In speaking with the doctor, he told me the very same thing about instability being a problem. In the hospital, right after the surgery, he told my husband about it being a concern, but that we could wait for a while. Dr. B showed me an image in his office that had measurements. There is an acceptable number and mine progressed from just a little into the point that suggests surgery to a measurement much more than he expected to see in my 6 months. I am not really having a lot of success with the researching either. I find information but it is way too technical for me to be able to use to share with my family. I emailed Phil, the PA in the office whom I saw, to ask for the doctor's notes. That's what I am waiting for now.

[selmaS]

  Hi...yes, several have gone back for surgery due to CCI or instability....this can occur if you have Ehlers-Danlos.....

I was told I may require the fusion for CCI or instability as well....but have held off since I am not having the issues  you are...I was so determined to not need it I stll after 5.5 yrs from surgery still do the neck exercises I was told to do post op....I feel that has helped me considerably.

  AS for the meningitis....is it chemical or bacterial?

May I ask who did your original surgery? Did they give you a dura patch and if so, what type? From the many that develop issues like this post op, I am finding they find out with these issues they have EDS and did not know prior to surgery....and the patch can play a role in many of it as it can cause infections....due to the body rejecting the patch....which could be a source of 2 things, infection and excess CSF building up...

Dr Menzese described it as a bobble head...he said imagine a pumpkin on a pointed stick....it will wobble around until the point pushes thru and the head sinks down. This will cause compression of the spinal cord and brain stem...so, a fusion is needed when it is this bad.....this along with your meningitis explain your symptoms.

BTW- Dr B is no longer at TCI, he is now with the Chiari Neurosurgical Center...I am sure you were aware of that but for anyone else reading this, that may not.....he left TCI as of Sept, 2014.