I have an 8mm herniation, but the doctors say that there is "some" visible CSF space. I asked what "some" means and how much space is enough. I couldn't get a straight answer. I also asked what happens when I am at an upright position. Does the malformation move down enough to block the space, or does it move at all? Again, I didn't get a straight answer.
I have the following symptoms that have become worse over the past ten years. They have been rapidly increasing in intensity for the past six months.
Left arm tremor
Dull ache in left arm, hand and leg
Tingling in left arm, hand and leg
Numbness in left arm, hand and leg
Neck pain
Floaters in my vision
Sensitivity to light
Extreme ringing in left ear that never goes away. ( I can hear it above the noise of a chainsaw or Harley)
Pressure behind left ear
My left vocal cord is nearly paralyzed
Unsteady gait with left leg
Occasional tachycardia
So, I have been diagnosed with Chiari1 8mm but the doctors will not do anything because they say that there is "some" CSF space and that the arm tremor is not a Chiari symptom. I have Kaiser and don't think their specialists are very knowledgable about Chiari.
Does anybody else have arm tremors that are caused by CM? I'm frustrated because I have 12 symptoms but because one of them is not typical (in the doctors opinion) they pretty much have abandoned me to deal with this on my own.
Also, I don't get the typical chiari headache but all the symptoms I listed are with me 24/7. Once a new symptom pops up, it never goes away. It only gets worse.
I have had and still have many of your same symptoms. Is it possible for you to get a second opinion? You should be getting straight answers from your Dr. I would also read about Postural Orthostatic Tachycardia POTS). I was just diagnosed in December and Many Chiarians also has POTS. Kaiser has some good NS's. Send me a message and tell me what city and state you are in and I will send you a list of Chiari experienced NS that participate with Kaiser. Plus let me know what kind of policy you have HMO, PPO, EPO. We have the most complete list of symptoms I have found anywhere. I will look for it and link it to this post. Found It !!!
I have tremors in my right hand. My Doctor told me it wasn’t related to Chiari. I had surgery 11 days ago and still have the tremors so maybe he is right.
So sorry to hear about your problems. Mine started as a brain cyst - a large cyst called a Posterior Fossa Arachnoid Cyst. I too dealt with doctors who didn't want to listen to me or believe me....all through my cyst situation. Due to doctors not listening, I then developed more problems and now have an acquired Chiari and brain sagging.
S Mozer, that is SO frustrating!!! I too had the same question: our MRIs are done lying down, how do we know the CSF isn't different when we stand up, don't things shift a bit? My NS said I had "some hinderance to my CSF flow and would benefit from decompression." I think since I had the tussive headaches (sneezing, coughing, straining, bending over, etc) he thought I'd benefit from surgery.
I wish you the best! Please get help from other sources. Do NOT try to deal with this on your own; there are medical professionals out there who can help. I hope TracyZ is able to help you find a compassionate, skilled, knowledgable NS who will listen to you!
I too had all of those symptoms before my neurosurgery. The tremors have mostly gone away, although I still have a twitchy pinky on my right hand. And just a word of warning: if you do decide to get the decompression surgery, it definitely is NOT a cure-all; I am now 5 months post-op, and still feel really bad. I haven’t yet reached the point where I feel that it was “worth it”. The recovery process is long and gruelling.
I have same arm ptoblems weakness, numbness, tingling started in my hip also now mine is all right sided, my chiari is a 10mm heriation. Lets know how u get on Xx al
I have tremors in both arms, but they started a few years after my surgery. I hope you find answers soon, and remember, a second opinion is always an option.
I hve all of the above symptoms with a 14mm destintion, tremors are true & real. I wish you all the best! The doctors today have very little knowledge of Chiari. If only they could walk in our shoes for 1 day, maybe then, they would understand. It is so sad, the pain we all go thru!
Like most of us I have the same symptoms. Some of us are affected on right side and some are left side, personally I feel it all on the right side - including arm tremors. I feel them more when I exert myself, like at physio - I dont know if yours get worse with activity? Thats just what I found. As for the docs writing you off - write them off! There are chiari specialists and that’s who you need on your case. I know, easier said than done, but not impossible and definitely necessary. I wish you the very best.
yes i do have arm tremors…no pain in my arm though. But I do have pain in my neck and also get baad headaches. I have had 2 decompression surgeries and 7 shunt replacements…
I would highly suggest that you find a new Nuerosurgeon. Even if you have to travel. systems will continue to get worse in most cases if you don’t have decompression surgery. Take care, Erin
That is rediculous… I agree “write them off!” I had arm tremors before my surgery 4 weeks ago. Please search for a new NS. Hope you get the help you need and please don’t be discouraged by Dr’s who don’t know how to listen.Good luck
Been thinking how i can best describe my symptoms in arm to non chiarians…
If you put an elastic/rubber band on your finger too tight, the feeling you get after a few mins of almost deadness… Well the elastic band is tight around my shoulder.
I luckily have a wonderful Neurosurgeon who is very experienced with Chiari. I too have had tremors in my right arm/hand. According to him, they are Chiari related in a way. All of our symptoms stem from the Chiari whether directly or indirectly. All I know is that I am currently experiencing a bucket load of symptoms similar to yours and more. I have my CINE MRI on Thursday to see if my CSF flow is blocked any more than it was. It was only minimal blockage in 2010. Hasn't been checked since then. I too wonder how our position affects the herniation and flow. I definitely have preference to certain positions right now. I can tell where the pressure is in my head and how it changes with my head position. This would lead me to believe that to a certain point, the flow would be affected by the position we rest our heads. I certainly plan on talking about this and some other things with my doctor at my next appointment.
i have alot of those symptoms . I have tremors ever since i was in a auto accident two years ago. but i also get migraines alot along with alot of your symptoms.
