I have recently been diagnosed with Chiari. Obviously, I have had it my entire life (I am almost 65). I have had ringing in my ears for so long, I thought it was normal. I have had very bad neck aches since the late eighties, but have never seen a doctor for it. Things have gotten a lot worse lately. Severe pain and weakness in my right arm, difficulty dressing, dizziness, vision issues, etc. Is it common for Chiari symptoms to accelerate like this?
Thanks for the reply. I was concerned that my symptoms may be more age related and something that I really should just learn to live with.
You triggered my memory. I have been diagnosed with cubital tunnel syndrome in both arms (with that nerve conduction testing that you mentioned). I was told that there was very little nerve conduction at all in both arms and they required surgery to correct the problem (which I have had done on both arms). The odd thing about it, was that I was not aware that I was having any problems at the time. They were running the test because of other issues I was having. I wonder now if it was related to Chiari and not really cubital tunnel.
I see the NS next week. I have no idea what to expect from him. Thanks for giving me some insight into what you experienced. It may be very help for my discussion with the doctor.
I am seeing a doctor in Fredericksburg (where I live). His name is Poffenbarger. I really don't know anything about him. I saw him once in the hospital. He did order a CINE MRI. I will get the results next week when I see him. I am thinking about sending my studies to Cleveland or one of the other Chiari clinics. I think I will see what he has to say.
You were right about the conduction test. They do make you twitch.
I just want to comment that I was VERY glad to have the nerve conduction test. For me, it was critical to me decision to have decompression surgery. Additionally, it was unpleasant, not truly painful, and the two men (a tech and very experienced MD) who conducted the test were extremely helpful, calming and professional. They even (get this) explained things carefully and thoroughly as they did the tests!
I had/have about 7mm descended tonsils, and a syrinx so skinny and short that they thought both the syrinx and the chiari might call for wait and see. Well, the Chiari deteriorated rapidly over a period of about three to six months, but it was the syrinx and the nerve conduction test which clinched things for me.
The MD conducting the nerve conduction test on me explained that the signals in the nerves deteriorate over time. The signals he saw showed a few things. First, the normal signals in my own body (right side) are very, very good and zippy. This means that my signals could deteriorate for a long time before I noticed a single thing. The nerves on the left side were problematic. They showed a level of difference which indicated the syrinx had been causing nerve damage for AT LEAST FIVE YEARS! He thought it more likely, though, that the syrinx had been damaging my nerves for over a decade.
I could already see minor wasting of the muscles in my left hand, and had been getting increasing tingling.
I could have lived with the level of symptoms I had in my arms and legs for a long, long time, especially since the MRIs couldn't say whether or not there was actual a causal link between my Chiari, syrinx and symptoms.
The nerve conduction test proved beyond a medical doubt that the syrinx was causing problems, and had been causing them for years and years.
I got surgery last July, and am very pleased I did so. Not only did the surgery take the pressure off that syrinx, but it also addressed the rapid decline of my Chiari symptoms. In the month prior to surgery, my lightheadedness was so bad that I often kept myself out of the car, fearing I would cause an accident. Since surgery, the only time I have experienced Chiari dizziness was after about ten minutes of wearing a tight swim cap over the soft spot on the back of my head, something which directly mimicked the pressure which my skull and dura used to create before surgery.
So, bottom line for me and my own case. I am VERY grateful for the nerve conduction test. It helped me make a very good decision for myself and my health.
There is another doctor in Fredericksburg, his office is in the same hall and right around the corner from Dr. Poffenbarger. His name is Dr. Berlad, he did my decompression and a few others that I know, he is great ! If you decide that you want a second opinion or are not comfortable with Dr. P, try him. They did the conduction test on me, one side was fine the other nothing moved. After that, they did an MRI and found my chiari. Again, if you want to talk, drop me an email or go to my page and leave a message, a lot of times it just helps to talk to someone that has been there. A doctor can tell you what he sees and what he thinks but he can't tell you what you might be feeling or if what you are feeling is normal. If you need anything I am here.
Cami said:
I am seeing a doctor in Fredericksburg (where I live). His name is Poffenbarger. I really don't know anything about him. I saw him once in the hospital. He did order a CINE MRI. I will get the results next week when I see him. I am thinking about sending my studies to Cleveland or one of the other Chiari clinics. I think I will see what he has to say.
You were right about the conduction test. They do make you twitch.