Post Surgery Symptoms

[rosedawn]

Hi all. I am almost 3 years post decompression surgery on a 30 mm herniation Chiari. In general, I did not recover well. I got chemical meningitis and a massive stapf infection that required a second surgery to "clean out" from my head. I spent almost 10 months in bed, barely able to move around. I got better slowly and had spent the most part of a year doing pretty good. Went back to  homeschooling our 7 kids, doing yoga etc. Now, I am back to terrible vertigo, nausea, pain (that never really did leave) fatigue, dizziness, numbness in arms etc I also have syringomyelia. My doctor in Seattle was going to do the laminectomy and fuse my top 2 vertibre but I started having seizures during surgery and he stopped. I do not understand how that left undone might affect me now and the doctors stare blankly at me when I ask.
We moved from Seattle to Georgia after my surgery and the doctors here know almost nothing about Chiari. They have tried 7 different drugs on me for pain. I could tolerate none of them. The last was Lyrica and it made me totally depressed. I have not taken anything except tramadol for 2 months.
When I see my Dr in October, he will want to do more pills. What can I do? I had an MRI last January which showed my herniation at 8 mm. I  have had spinal taps to rule out infection (also in Jan.)
My question to you...is anyone else having this kind of trouble? I know that I had a severe Chiari. Is this just to be my life now? Thanks.

[Elisaandbucky]

Answers to questions asked by Selma just above seem to be pretty important (patch, dura opened). October must seem like a long way off. Does your doctor's office have a list you can join, to be seen sooner, if there are cancellations? That did work for me a few times.

Homeschooling has always been a dream of mine. My son is not very responsive, so we sent him to a public school. So far, so good. But teaching is what I've always done, so it is hard to resist continuing lessons when his bus comes home. You are amazing with 7 students! I am a English professor and it seems pretty consistent each semester, that all my best students were homeschooled. Your children are in a good place and blessed to have your commitment. I do hope you can get some answers when you do get to see the doctor.

[selmaS]

  So you did not get a dura patch, did they open the dura?

Or did they do a less invasive procedure? It is possible to need a revision of the surgery with the less invasive procedure  as the benefits do not last long....

Look at our Drs list and you may want to try NIH as they do clinical trials there....take a look and see if you qualify...

[rosedawn]

Thanks for replying. I have not been able to locate a specialist anywhere near me. My current doctor I  have actually only seen once and he did not seem to helpful. I get the old stink eye for being on Medicare. My last dr actually told he that he would not see me anymore because of medicare. So, I am not sure about the syrinx etc. I do not have a patch. The second surgery was to look for a leak after 8 visits to the ER, instead they found the staph infection. I will keep looking into things. Thanks.

[selmaS]

  Hi so sorry you are having issues....not everyone reacts to surgery as you have, but we have had a few member with issues like this.....

What you will want to do is research Chiari specialists in your area....you said you have/had a syrinx, did it shrink at all...or is it growing?

A syrinx could be the issue at this point....or a related condition that may not have been found b4 your initial surgery.

Did they place a dura patch?.....if so what type?

What was done .....was the fusion attempt a 2nd surgery?