Well it's been a few months now of being treated by the headache clinic. My doctor there believes my headaches aren't coming from migraines. My many other symptoms weren't relieved with the meds she tried either so she has sent me back to the NS. I go on Jan. 16th and I'm not so sure what she will have to say this time. My MRI showed little herniation but I have many symptoms as you all experience. She is very conservative and believes surgery is the last option. I don't really want to have the surgery when I have the good days. It's when the headaches hurt so bad and my whole body feels like it's been hit by a truck that's when I would beg for it. So wish me luck and I'll let you know what is next
Is ur NS a chiari specialist?.....maybe it's time to find a diff dr?.....
There is info showing it is not the size of herniation that the dr should be looking at.....it depends on if u have a CSF blockage .....if ur brain is overcrowded without a herniation it can cause a disturbance in the CSF flow and u would have symptoms!!
Please print this info and take along to ur next appoint.
I would also recommend a differant doctor. I'm guessing you've seen a neurologist rather than a neurosurgeon? I know that you would rather not have the surgery, few people actually want to have brain surgery :). But I'm a firm believer that it's the right move!
Not trying to scare you, but Chiari doesn't go away. Even surgery isn't a cure. But once you start having the symptoms, there is a progression that usually doesn't stop and eventually causes serious damage, including paralysis or even brain damage! Sometimes this happens slowly - taking years or even decades, and sometimes fast - where things culminate in a matter of weeks.
Conservative thinking can quickly let this get out of hand. I recommend (and this is only my opinion!) that you see another, more aggressive Doctor - a Neurosurgeon specializing in Chiari malformations.
Hi Shane, Selma!!!
My Dr. is a neurosurgeon and comes highly recomended by one of the top Chiari diagnosing neurosurgeons in this area. Unfortunately he isn't able to perform the surgeries anymore due to an illness. According to my Dr at the headache clinic Dr. Frim here in Chicago is also very conservative and she thought he would be a good second opinion. She said there were other "Chiari" specialists in the area but they believe that everybody requires surgery and they don't check to find out if their symptoms come from anything else first. I appreciate that.... I would rather find out I have migraines before I had decompression surgery instead of having surgery and then finding out it was migraines.I personally don't consider a neurosurgeon a chiari specialist based on the number of surgeries they do a year. I would consider one a specialist by their training and their knowledge of chiari and their ability to perform the surgery with a high success rate of eliminating the patients symptoms even if that was only a handful of surgeries a year. I hate the thought of surgery but I also know by reading the posts here how bad it can get and how quickly. I'm so glad I have you guys to look out for me and help me through this. I'm going to give this neurosurgeon another chance and then I'll go from there. I know something has to be done because it's getting worse I can feel the changes even on the medication. I will keep you all informed and thanks for the great advise!!
Hi...glad u r going to consider a second opinion...Dr Frim is a big name in chiari Drs.
Are u going to him?
As Shane has mentioned, this condition can progress slowly, or very rapidly and then cause some perm damage.
I agree a NS that is well schooled in chiari is important and I don't want a drive thru either, but I want someone with the skills developed by doing this on a regular basis too.
I have been back and forth with this.....I now have found some new info that may be part of my problems....I will be printing the info and taking to my appoint.
I guess because I have been going from dr to dr for yrs and ruling alot of things out already I am quicker to just go forward with the dx and want to get it fixed.
But as I said, I am still reading and asking questions.....but now it is a chiari dr.
I haven't heard from Steve0 since the last post. I'm sure he is doing OK or my sister would have let me know.
Rosebud3 is going through some major depression. She went to her NS who is a chiari dr and he asks more questions about me and what my doctor is going to do than tries to treat her. He wants to wait to see what my doctor does next and wants to see my mris and files etc b4 he will try to treat her. Chiari 0 isn't something that even the chiari specialists want to venture into because of the liability. I can understand that but we need help too... anyway she has bipolar and manic depression issues to begin with and this isn't helping that at all. She doesn't want to talk to anybody anymore she just wants to be left alone. I can't even get her to come back to the forum here which seemed to give her hope. Got any ideas I worry about her so much???
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