Hi all,
new here to neurotalk. Im looking for some help from people who know what's going on hopefully better than me.
so, ten years ago when I was 14 I had a chiari decompression complete with c1 and c2 being removed. After surgery it took 2 months for the symptoms to come back. At the time, the research I found was simply an answer of "too bad soo sad" nothing left to do. So after getting about the same response from my neuro, that at the time there was no alternatives except wasting away on painkiller, I decided id just live with it.
living with it is hard but I think we all know we are capable of getting past the joys of discomfort from chiari when there is no other choice. Comes with being a pre zipperhead or a zipperhead.

Here's where things are changing, where I can't seem to ignore it. Over the last two years, a few things have started happening.
1.) My insomnia is going nutts. Even when my headaches are so bad im puking and curled in a ball, I just can't sleep.
2.) My swallowing issue has shifted... oddly. It almost feels like a bone is out of place in the front of my throat preventing me from swallowing. Weird I know. I can even pop it in and out of place. Research says there is a bone there, the hyroid bone, over the thyroid, but it shouldn't ever "pop"
3) **** post chiari people, id love your input here. If I lay or move my head/neck/shoulders wrong, I can literally feel my presure in my head rise. So badly I have passed out! Anyone else?
4.) General clumsiness/perception being screwy, extreme debilitating headaches/neck aches, you name it chiari is back and badder than ever.
HELP!!!!!

Wow
that really sucks
I guess mine is very mild when compared to yours. I'm concerned about the long term effects of surgery, but I'm also concerned about symptoms progressing. I guess we are all stuck with bad options either way.
Sorry to not provide any guidance as I'm all new to this ordeal; perhaps you can find a NS that can help you - everybody sings the praises of dr rosner in NC for instance, as he's very dedicated to quality of life.

I understand and have had similar problems. Maybe this will help. I started with the diagnosis of pseudotumor cerebri(I make too much cerebral spinal fluid so the intracranial pressure is increased. I was losing my eyesight so a lumbar peritoneal shunt was placed. 2 months later I started with a severe headache at the base of my skull. My neurosurgeon said that it was nothing. The pain got worse, I couldn't sleep. I went from neurologist to neurologist for help. The only help they offered was narcotics and anti nausea meds. That was not a solution for me. (I can't take narcotics) I wanted an answer. Finally an MRI was done with views that showed I had an arnold chiarii malformation. (I had had so many MRI's at this point. Why was one not done to look for ACM when I complained of pain at the base of the skull after lumbar shunt plcmnt)

I talked to the neurosurgeon and he said that until things got worse we did not need to do anything. By the time that I had major swallowing problems, could not grip with my left hand. Was very dizzy. Had walking problems he finally decided that we should do surgery. He did surgery but did not put a metal plate in to hold things in place.

After the surgery, the grip in my left hand returned and I was able to walk better. The swallowing got better but it has never returned to normal. I still had problems with being dizzy and the headaches did not improve. We found a blood pressure medication that helped with the headache at the base of the head. It did not go away but was better. We also had to swith my shunt to a VP shunt in the brain. (LP shunts are contraindicated with ACM and may have caused or at least exacerbated my ACM)

I was so miserable that I switched neurosurgeons and got an opinion as to what was going on with my head. He did a special form of an MRI that shows the flow of CSF. We discovered that my CSF was getting trapped in the skull and could barely even get any past to feed the spine. Another surgery was done but this time it took 2 surgeries and a total of 15 hours to fix the problem from my last surgery. There was so much scar tissue and because there was no plate in place the scar tissue blocked the opening (foramen magnum). The surgery took so long to dig all of the nerves and scar tissue out. A plate was implanted to hold things in place.

It has been 3 years. I have done so much better since this last surgery but there was a lot of nerve damage from this surgery so now I have burning nerve pain across the left side of my scalp. I cannot tolerate the medications used for the nerve pain. Ice and compression are my only solution.

I would check to see if they have done a CSF flow MRI on you. The second surgery was definitly worth it even though I ended up with the nerve pain.

Hi Muddogjones

I wanted to reach out to you with a small glimmer of hope. I have heard of what is called "failed decompressions" over and over in my research to understand my own disorder (idiopathic syringomyelia). There is reference to the symptoms returning almost immediately or not leaving the sufferer at all. There is a specialty center I myself am trying to raise funds to find a causative agent for my syringomyelia at, called The Chiari Institute in Great Neck New York. They are a center devoted to just us. They claim a large number of their decompressions are re-decompressions after failed surgeries elsewhere. They have a great website if you Google the center.
Your pain sounds severe to put it mildly, I have a pain management specialist to help keep my pain as tolerable as possible. Even though our pain sounds like it comes from different origins, I would highly recommend one if you are able to do so. I have gone through the series of pain meds but unfortunately my liver will not tolerate most of them anymore so I am now on Lyrica for the neuropathic pain and the myofascial pain syndrome symptoms and it keeps me able to at-least get out of bed and most days get my physical therapy done. Quality of life is so important.
As for your clumsiness, I can relate quite a bit. I have vast proprioception damage after my syrinx became active and more-so after the syringo-subarachnoid shunt insertion. I have developed progressive acquired pes cavus (my ankles are turning out from the nerve damage being uneven in my legs) and have taken one nasty fall so far resulting in multiple breaks in my left sinus and upper jaw. The nerve damage in many people affects the proprioceptive nerves which are in charge of knowing say...where a limb is without looking at it. This can make normal gate and navigation a formidable task in the afflicted.
I hope some of this information might help, and please know you have others that understand to lean on.

Meggie