I was diagnosed about a year ago, just days before moving from Portland, OR to Seattle. I got my surgery in Seattle and at my last post-op appointment the doctor basically said, "Call us if you get headaches again! Bye!" At the time I was still on pain pills and muscle relaxers and it didn't occur to me to ask more questions. I kind of had the idea that I was cured. I also have sleep apnea, RA, and diabetes. A couple months ago I started truggling with joint pain, fatigue, and loss of appetite. My rheumatologist said it was an RA flare and gave me a course of prednisone. I felt great on the prednisone, then I got off of it and after a couple weeks I had the same problem again. I've gone through two or three cycles of prednisone now and the symptoms still come back after. Now my old headaches (the ones that led to my Chiari diagnosis) are coming back. My rheumatologist still thinks my problems are RA, but he also knows nothing about Chiari.
I could go back to the neurosurgeon, but I feel like he didn't prepare me very well for post-op life and I have lost some confidence in him. So I started trying to do my own research, and as everyone here probably knows, there's not much to be found. I keep reading surgery is the only treatment, but then I hear others talking about taking medications.
So I found this forum, and the two things I really want to know about are:
1) How do you go about finding a good neurologist/neurosurgeon? I've seen the thread about doctor recommendations, and that's great, but I want tips on the search itself. Where do you go for doctor reviews? What kind of questions do you ask? What are the red flags? Everyone seems to agree that not all doctors are knowledgeable and that good research on a doctor is necessary, but what kind of research?
2) What sorts of symtoms can occur after decompression? All the official literature seems to imply that symptoms are gone after decompression, but reading on this forum that doesn't seem to be the case. But since I have more than one condition it's hard to suss out which symptom can be attributed to which condition.
My neurosurgeon was Dr. Taylor at UNMH in New Mexico. He was fantastic. I found him by going through my regular channels from pcp to back specialists to the (douchbaggery) of the neurologists. They suggested Taylor as he was the ER trauma surgeon. For him, the decompression surgeries were a walk in the park. (That scar is an almost invisible line!)
As far as red flags go, I found most neuros to be extremely arrogant and usually ignorant of Chiari malformation. This is why a trauma surgeon was awesome. They’re often dealing with skull/brain/spine injuries that are from horrible accidents. In our case, the surgery is a controlled break under the best circumstances and eyes. A trauma surgeon who specializes in neurological issues is the way to go in my opinion.
I found all of my symptoms came back after decompression, so you might find yourself feeling everything all over again. It was only after a 2nd surgery to relieve 1 of 3 syrinxes (syrinxi? What’s the plural here? And yes, it was a shunt) that I found some relief. Really, it was the PT afterwards that helped. Healthy eating and a whole lot of walks, then light weights did wonders for me.
For the record, 3mm herniation, one syrinx in the cervical, then thoracic, then lumbar spine. One surgery for decompression, then another for a cervical shunt. Went from walking to limping to the cane, wheel chair, cane again, and now nothing. Still can’t run or REALLY boogie, but I got it back. It is possible. You can do it. Well, that and a “I’m getting a whole new set of spoons” attitude helps.
I’m in Texas and my neurosurgeon was great but the decompression itself … The recovery is ROUGH! It helped many of my symptoms for a few years like I did regain some strength, vision, hearing, walking stability, ect. Does not stop neck pain or headaches. But after a few years I’m back with symptoms if not worse except now they say I have artifacts and the mrs can’t give clear pics. I’ve had steroids injections and had to be put to sleep for, I take various mess for headaches, I have dizzy spells, and both hands go numb now with tinkling in my face,I feel like I’m back at square one. I don’t mean to be negative. I just want people to realize you may get some temp releaf, but I’ve come to the conclusion this is a lifetime fight! I had too much pressure on the brain and the brain and had to have surgery at that point. But again many of my symptoms have returned 4 years down the road :(. Good luck and hang in there. I would put off surgery as long as I could deal with the symptoms, there is not guarantee surgery will fix them.
Hi Dylan, can you remember the first name of the Dr. Taylor that you used at UNMH? I'm thinking about having my decompression surgery done there, and I'd like to talk to him. Thanks :)
Dylan said:
1. My neurosurgeon was Dr. Taylor at UNMH in New Mexico. He was fantastic. I found him by going through my regular channels from pcp to back specialists to the (douchbaggery) of the neurologists. They suggested Taylor as he was the ER trauma surgeon. For him, the decompression surgeries were a walk in the park. (That scar is an almost invisible line!) As far as red flags go, I found most neuros to be extremely arrogant and usually ignorant of Chiari malformation. This is why a trauma surgeon was awesome. They're often dealing with skull/brain/spine injuries that are from horrible accidents. In our case, the surgery is a controlled break under the best circumstances and eyes. A trauma surgeon who specializes in neurological issues is the way to go in my opinion.
2. I found all of my symptoms came back after decompression, so you might find yourself feeling everything all over again. It was only after a 2nd surgery to relieve 1 of 3 syrinxes (syrinxi? What's the plural here? And yes, it was a shunt) that I found some relief. Really, it was the PT afterwards that helped. Healthy eating and a whole lot of walks, then light weights did wonders for me.
For the record, 3mm herniation, one syrinx in the cervical, then thoracic, then lumbar spine. One surgery for decompression, then another for a cervical shunt. Went from walking to limping to the cane, wheel chair, cane again, and now nothing. Still can't run or REALLY boogie, but I got it back. It is possible. You can do it. Well, that and a "I'm getting a whole new set of spoons" attitude helps.