So I am still fairly new to all of this only being diagnosed last August. When I was diagnosed my symptoms were pretty severe. Really bad headaches, neck pain, back pain, numbness, tingling, muscle weakness... I can go on. Once I went to the neurosurgeon, one who is listed on many chiari sites, I was put on a medication regimen to keep my symptoms under control to avoid surgery. He was on the fence with surgery for me. It may or may not do me good so he felt we should try to control things with meds before we resort to surgery. Things improved greatly. I was to the point that I felt normal and only had headaches once or twice a week. Over Christmas break I started to get more headaches and throughout January they continued to increase. By mid January they were daily and by the end of January the pain was increasing with them. I went to my neurosurgeon on February 3rd and he doubled my topomax that I take daily. I was taking 75mg topomax and fioricet as needed which ended up being 2 to 4 tabs a day. So he doubled the topomax to 150mg in hopes that I wouldn't need the fioricet as much. Well it's been almost 2 weeks. There is only a very slight decrease in the amount of headaches. I have had maybe 3 or 4 days that I haven't had to take fioricet. The new symptom is now the return of the neck pain, head pain and tingling on top of the headaches. This worries me.
So my question to those of you that have been in this for a while now is do symptoms come and go like this in waves year to year, months to months? I know this could also be a sign of things getting worse, right? Am I crazy to think that maybe I should get a new MRI to see where things are at? Am I being too paranoid? My last MRI was in October - no syrinx, no tethered cord, minimal CSF blockage, not sure but I think about 12-15mm herniation. Never got exact measurement.
Thanks for the support and for letting me get out my crazy thoughts and feelings.
I talked to the doctor and now he is sending me for testing with a neurosurgeon to rule out any other causes for the headaches even though he is certain it’s the chiari. He doesn’t want to leave any stone left unturned. He is also sending me a script for a narcotic for the pain. He said is we get no results with either of these avenues, we are looking at surgery. This was not what I wanted to hear. I posted a blog about my feelings regarding this on here. Today I continue to have constant pressure in the back of my head and pain in my neck although not severe, it’s bothersome. Evenings are the worse as I get dizzy and nauseous for the pressure in my head. I’m starting to tak e on the mind set of will power to not let it control me. MInd over matter. I hope I win.
Jenny......I just joined this website this week and was reading your post. I had my surgery in July last year after being misdiagnosed all my life. I went through periods during that time where I did have the headaches. I hadn't really had them though for about 20 years when I had my surgery. I was diagnosed in Dec 07 and didn't have the surgery until 2010 partly because I was just SCARED to do it. The decision to have the surgery was a difficult one especially since I had been told by a previous doctor that my case was too risky to do. However, a really bad car wreck changed my situation and I had to have it done. Mine was done by Dr. Fraser Henderson from Bethesda MD in the Washington DC area. He has a high success rate with his patients; my scar is almost completely gone, he's very kind to your hair, and he is very caring. When he said a prayer for me before the surgery, it gave me a lot of confidence that I had the right person to do it.. The decision is such a personal one for each of us; I was having a lot of trouble swallowing and breathing but it was still difficult for me. I found that my recovery wasn't so bad. I stayed off the computer totally for about three or four months because it strains the neck. I did a lot of resting and sleeping. I found that water therapy helped me tremendously in building my strength and around three months I started going to the boardwalk and walking about a mile on those days when I don't do water therapy. There are benches every few feet and I can rest when I need to As I continue to do it though, I don't have to rest as much.I'm still recovering and, if I use the computer for too long a time, I will have a stiff neck and maybe some pain. So, I just don't do it much at a time. My expectation when I went into the surgery was not necessarily to be l00 percent restored but to hopefully halt the progress of the compression. At the very least I was looking for peace of mind. I think a realistic expectation of the surgery and keeping a very postive attitude goes a long way. And....I find that nothing is ever as bad as I can imagine it to be!!! My prayers are with you as you go through this difficult time. Hugs Shirley C
Jenny, I found that resolve and a positive attitude go a long way....I find that there is a big mind-body connection. Don't give up. As far as I know we only get one life. Since I, of course, didn't know if I was a good as I was going to get, I didn't want to wait for the better and miss my life. Did that make sense LOL? Keep living your life to the extent you can..and believe that you will be better...it's a good thing!!!!. Hugs. Shirley
You need to contact the Chiari Instute. The have traine and worked with you Dr. and took me off topamak and put me on Diamox which was much better, with way less brain fog. They also put me on Mobic for pain which in a non-narcotic. Dr. Schalabba is a very conservative Dr., but a good one too. I am thankful that he did feel comfortable enough with MY case and recommended me see Dr. Kula. My herniation is not as big as yours, but my CSF is almost totally blocked. I also do not have a syrinx or thethered cord either and they say chances are that if you don't have one by noe you shouldn't develope on in the future. I do have EDS which makes my symptoms hard to determine if they are Chiari or EDS related. In the begining my symptoms started in sevier waves that were thought to be strokes or TIA's, but no clots showed on the MRI, MRA or CAT Scans. Dr's were baffeled. My Albany Med Dr. Marawar said I had "Atypical Migrains" and I was on topamax, I believe I was up to 200mg per day. He also put me on Zoloft and had my Primary Dr. perscribe Xanax. He knew about my Chiari for a good 6 months and NEVER told me and I only discovered it by requesting a copy of my chart and saw it for myself. I was beside myself to say the least. At this point my symptoms had escalated to perminant numbness, vision, hearing, gait and many more issues. That is when I wrote to the Chiari Instute and was waiting for a response of acceptance. In the mean time I was going crazy and found Dr. Schalabba in GF and went to him. I told him my story and her did MRI's of the full brain and spine. He told me then that my best bet would be to see the Dr.'s at the Chiari Instute. So I did and here I am now on my way to what I hope will be a positive change for me in life. I am scared to death, but at least I can say I tried. Good Luck.
