Hey guys. My name is Melissa and I'm 22. I was diagnosed with having a chiari malformation type one of 10mm in February of last year when I had a cyst decompression surgery related to an arachnoid cyst I have. My doctor told me that if I never had any symptoms, we wouldn't have to do anything with the chiari. Well, around January, I started getting more frequent headaches at the base of my skull. I didn't really think much about it. Since then however, they've only gotten worse. Now I'm in pain constantly, along with having hand tremors and dizzy spells. The pain gets so severe at times I can hardly stand it and have to rely on pain medicine to take the edge off(which I hate taking!). I saw my neurosurgeon a couple of weeks ago and he is not wanting to do the surgery if at all possible because when he went into the back of my head for the cyst decompression surgery, I ended up not being able to walk right and had to use a cane and go to physical therapy for 3 months before things were better and that surgery didn't go into my skull like the chiari surgery will.

I totally understand his reservations. He sent my to a neurologist who I saw today, who kept trying to tell me I'm having migraines (even though the chiari is visable on the mri and I've had migraines before and know what they feel like). He mentioned that the solution he liked the best was shooting pain blockers into my neck to deaden the pain. My issue with that is that its not going to take care of the dizzy spells, which worry me since I drive. I'm also worried cause I'm on a bit of a time table here. I'm a college student, so this needs to all be done(including the rehabilitation if its needed) by early August.

Has anyone done the pain blockers? I just really don't want to waste my time doing it if its not going to take care of everything. My neuro I think is trying to avoid surgery which I love him for, but I'm frustrated and worried that this might just be a waste of time if it doesn't deal with the dizzy spells.
My neuro also told me that its possible the surgery won't fix anything. Basically I need lots of input and help! Please!!!!

Hi, I'm a fellow Chiari patient mine is at 7mm, my daughter has chiari and she is also at 10 mm. My mother has Chiari but we don't have the report that says where hers is at as far as herniation. I feel that every Chiari patient is different and has different symptoms and pain levels so what one patient feels may not be the same as the next patient.

My mother and I have had the migraine headaches daily all my life through my teens when all the sudden they just stopped in 2007, I was also diagnosed later in 2007. The only thing I had changed was to quit caffeine and also stopped taking the Exedrine for those migraines, I was taking those daily too and I think I was getting rebound headaches from those too, at the time I found out I had Chiari, it seems that stopping that had stopped those headaches for me. My grandmother has had migraines in her teen, twenties and thirties years but now since her 40's 50's and now in her 90's she doesn't have any headaches, we don't know if she has Chiari but I wouldn't doubt it.

Somewhere it is written about Chiari can regress or go back up into the skull as we age and maybe that is what has happened to me? I have no way of knowing that since the first MRI was in 2007 and I'm now 38 years old. The followup MRI 8 months later showed it as the same.

I guess what I'm saying is that because of my case we are currently watching and waiting but I'm for the most part pain free, just have other strange symptoms like muscle twitching, joint pain etc. (but I also have autoimmune disease, which at first was diagnosed as fibromyalgia, go figure). I however have a cervical small syrinx, empty sella, and pseudotumor cerebri (in remission). My mother and daughter don't. Now my daughter who is at 10 mm and she is in her teens has no daily headaches, just occaisional ones on the top of her head, but she has other strange symptoms such as the postural hypotension symptoms, occaisional sparklies when standing up, but those come and go not there every day for her so we are watching and waiting on her too. However, myself, daughter, mother and grandmother all have "familial essential tremor" of the hands, I'm betting that is going to be found to be a Chiari thing too eventually someday. We all shake in the hands when they are held out or trying to do fine things like say cutting a cake.

I would be concerned about the shots depending on what they are, if they are cortisone, I believe those can actually do more harm to the muscle tissue over time than good, but I believe that is with several repeated shots. I know they told my father that when they wanted to give him shots for carpel tunnel. The first doc I saw wanted to give me the shots as he suspected my symptoms were related to the neck, he was in a way right as I also have degenerative discs in the cervical spine like my mom and grandmother do.

However, if you are in alot of pain then maybe surgery would be best for you. I would definitely keep in touch with the NL and NS and get second opinions if you need to, it took me three before getting a proper MRI and diagnosis. I've heard that it's true that sometimes surgery doesn't fix the problems/symptoms for Chiari patients, especially those that have other complicating comorbities like Pseudotumor Cerebri and autoimmune disease like myself. I was told that having surgery may not fix it, and possibly could also make things worse for me than I'm dealing with now, which is mild for me. I dearly love my NL and NS and trust them and that is where you have to be at to make those decisions about whether or not to have the surgery. My thoughts and prayers are with you and hope you can get relief from your pain, best wishes and good luck with college too, thats wonderful!

Hi Melissa! I have ACM of 8mm and had some cervical facet blocks of C1 and C2...they helped a lot but the dr did not pay attention and he hit my ACM and it knocked it down to 9 mm so now my neck pain is gone but my whole right side is numb and I cant walk a straight line..Just remind him even
before you get the local anth that you have it....

any kind of Injections are a big no no when dealing with Chiari .

I recently talked with my PM doc about having nerve blocks and he said that where they need to put them in right where I had my decompression surgery and that the amount he would need to put in would cause me to stop breathing. I would get a second opinion before getting any kind of shot.
I know that everyone is different with their symptoms, but I would not change the fact that I had the decompression. It has improved my quality of life tremendously. There is quite a bit of recovery time involved, so you would need to be prepared for that.
I have chronic pain as a "loving reminder" that I had some problems before the surgery, but in 2 weeks I am getting a neurostimulator to help with that.
Good Luck with whatever you decide.

I would definatly get a second opinion if I were you. First of all, usually anyone with Chiari is told to stay away from injections unless its a last resort. I have ACM with an 11mm herniation and I am currently in the "what are we going to do about this phase". My primary care manager referred me to a pain management clinic to get injections in my neck/upper back to combat the constant pain but when I mentioned it to my neurologist, he said NO WAY! He said if someone IS going to do it, it NEEDS to be an expert or they can cause some SERIOUS problems.

Also, I think you are dead on with being worried that they are only treating one of your symptoms. More often than not, when they only address one symptom they are just trying to give you an answer (whether it's actually whats going on or not.) This might just be me because I have military health care where they try to get you in and out without really caring all that much but I would raise that question if I were you. Especially since your other symptom effects your safety! Anyway, i hope that helps!

If it means anything, I had a nerve block last week and it didnt do anything. I have suffered from the same horrible pain everyday for two years. If youre wanting to more specifics, let me know. I'm not EXACTLY sure which sensory nerve they tried to hit(7?) but I have a bit of knowledge about all of this csm schtuff.