I was dx with Chiari 1 malformation a month after I hit my head on a steel bar at work. My headaches have mainly stayed on the side I hit. Same with facial and extremeties numbness and weakness. Is it normal for the symptoms to affect one side more than the other?
there really isn't anything "normal" about chiari symptoms! lol! while we all share many of the same symptoms, there are also just as many differences! my guess would be that this suggests that your herniation is greater on one side than the other. mine was much larger on the right than the left and i had more problems with that side of my body. brain compression and csf blockage are what are causing your symptoms. has anyone ever told you that one side is herniated more than the other? if you haven't been to see a cm specialist yet, now is the time! the longer you wait, the more likely you are to have permanent nerve damage! good luck!
I've seen 1 NS, not for sure if he was a cm specialist, I got his name from a chiarian co-worker that had the surgery with good results. He only spent about 5 minutes with me and stated that from what he saw on the MRI that my symptoms were from the concussion not the Chiari. Now my NL is referring me to another NS, as he feels the opposite since it's been almost a year since I hit my head.
welcome to the wonderful world of chiari! lol! you will get the run around more than once during your journey for knowledge relief, unfortunately. very few get a good dr the first few times looking! the ns you saw was not a great one from the sounds of it. where do you live? there may be members here near you that could suggest another dr that they have had a good experience with. or...there is also a link on the forum where you can see the names and locations of drs our members here have used and liked. hope this helps!
Hello and welcome! I am afraid I have to agree with Elizabeth on whats "normal" you never know with this illness. I also have worse symptoms on the left than the right. Numbness and tingling, etc. Most of us have some history of head trauma that has caused us to become symptomatic. So you are not alone in any of it
When I finally got to a true CM specialist my visit was 3 hours. The most thorough neurologic exam ever done. I went thru 3 NS's and 2 NL's so trust me the sooner you find a CM doc the sooner you will be on the road to hopefully feeling better and having your symptoms validated. I wish I had just started there would have saved alot of stress and frustration.
sorry, but if that guy was a specialist, he needs to be removed from his current profession! save yourself an even bigger headache and don't waste anymore time or money on the drs that "have done a few" decompression surgeries! find a specialist, but please.....do your research!!!! ask, ask, ask, and then ask some more about any dr you choose! you get one shot (if you choose surgery) to have a first operation. if the results are poor due to the surgeons inexperience, you will have a lot more problems trying to correct what the first one did.
Like you I have also had the run around with 2 NL and 2 NS and then was fortunate enough to find Dr. Barth Green in Miami and he is wonderful! I traveled from the Clearwater area and he is worth the trip! Please message me if you want more info. I will be going back to Miami in February for my next visit and possibly surgery.
I'm on my 2nd NL both were through workman's comp since I had hit my head at work back in February. It was after 2 "normal" CTs and a month of throbbing headaches and dizziness that I requested to change from the 1st NL. On my 3rd trip to the ER we requested an MRI and only found out the results after being released and called to come back in. My current NL has been treating me for post concussive syndrome and occipital neuralgia, but in September he told me if my symptoms didn't start improving he would be referring me to an NS. That was when I tried finding one on my own, that didn't go so well.
So what should I ask to make sure I am seeing a true Chiari Specialist?
If they want to know the size of ur herniation...they r not a true chiari specialist.....
U can attempt to call around to NS's in ur area, but u may not find the type of dr u r looking for and it may take a lot of time...it may be better to travel to one u know is a specialist.....granted, we do not have names for every city, but some lists have names of drs that r not chiari drs just to offer a full list.
We r asking that members add the name of their dr when they have been to them and liked them and happy with their results.....so that is y the list is small.
U may find someone we do not know about and then u can add them to our list.....
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