I am a 48 year old woman who has just sat here for 15 minutes crying my eyes out reading these unbelievable and sooooo understanding stories from all of you that have suffered as I have for over 15 years.
I once again have started feeling as if I am crazy, and this has helped me so.
My problems started in 1986 as tingling in my left thigh and then sharp burning pains. I went to doctor after doctor as the left side of my body continued to deteriorate, doctors continued to tell me it was just stress. Until the pain was so severe, which was in May 94, I went to see my most recent doctor, I broke down sobbing and literally begged him to help me.
I told him it was not stress and I was not crazy! There was something terribly wrong with me. He sent me for a Catscan and the day after he called me at work and told me there was a mass on my neck and wanted me to go see a neurosurgeon.
I went to him and he did the MRI thing, etc. He didnt know what it was, but said I needed surgery. My surgery was Aug. 16, and I was in the hospital for a week. He said he thought I had a tumor and he was going to have to sew me up and wait for the paralysis and then death, but a brain surgeon came in and said I had a brain cyst and brain tissue in my spine.
They videotaped it and everything, he said it was rare but he was so glad he could remove it. They thought it was from birth or I was a twin. He did a cervical laminectomy, C3-7, biopsy of ectopic cerebellum and drainage of ventral cyst. They also found at the time that my spine is fused abnormally at C3,4, and 5 , making this even more rare.
I was lucky, and did not have paralysis, but have been in constant pain ever since. I complained to doctors for years and was put on prozac, cyclobenzaprine and hydrocodone.
I also experience spells 3-4 times a year that were incapacitating causing electrical currents up and down my scar that would occur at just the wrong move.
The pain got worse and worse so in 2000 I finally scheduled to see my neurosurgeon. He said there was nothing else he could do. I told him I had worked in the newspaper advertising area for 18 years and felt I would die if i continued working. He took me off work for 3 months for PT. It helped somewhat temporarily.
I went back to work and within a few days I was in extreme pain. He sent me for nerve testings, other neurosurgeons, rehabilitative doctors, etc. Now, I was also on Mobic, Nuerontin, along with the other medications. I went back to him and he said maybe my neck had just given out, I had pushed and pushed myself and it was done.
Other doctors said they did not think I could work anymore. After evaluations and more test doctors agreed I should file for disability. The folks at my job agreed and I went on long term disability with my company.
I have spent 2 years fighting for social security. I have been to pain doctors, more PT, more doctors. I have had hand surgery as my right side got worse, tremors in a couple of fingers, trembling in my shoulders, numbness in hands and arms.
The surgery seemed to help at first but all the symptoms have come back. That doctor suggested Yoga which I am beginning and to read the "Gift of Pain" otherewise known as the Gift Nobody Wants, amen.
He thinks alot of the pain I can control and should be able to work. The problem is I can not sustain. My pain increases as the day goes on. Anything I do for a small amount of time just makes it worse.
Do you know of anyone else that has had similar experiences?
I am not making these symptoms up. It is very real. I even took myself off all my medications for a month-did'nt work. I know I need to lose weight, which I have accumulated since my surgery. That is what I am currently working on.
I have been denied Social security twice and have a lawyer working on my case. I go before a judge that will make a decision on my case soon. If I don't get it I will have to sue the state!!
This has gone on for so long and has financially been a burden for my family. If I do not get it I will try once again to work but I know I will not last. I only pray it won't kill me in the process. I came to the internet hoping to find some information on my condition as I said I have once again started thinking maybe I am crazy. I know this is real!
If this is so uncommon how can these professionals know what I am going through? All of you have had similar pain. I am lucky that I am not worse. But when I left work I was on constant pain medication and thought the steady progression of pain and the reaction my body was having to it was going to kill me.
I know this is lengthy but your stories have touched and embraced me. Knowing other people know what I am going through makes me know this is not in my imagination. If you have any advice or contacts with more information I would be glad to donate to help others. Thanks for Listening.
Thank you so much for taking the time to write your experience. When I started this site I thought I was nuts! I never in my wildest dreams imagined so many people would be allowed to suffer the same way.
I am not a doctor but where you have your cyst is one of the worst places imaginable. I would guess with your cyst being located on your spine that you also have a condition known as Syringomyelia, however you must see a doctor who knows what they are doing in order to be properly diagnosed.
I don't expect you to donate money because of your situation. Maybe once you get all this worked out with SSI if I have helped then I would accept a small donation.
Other than that I tragically don't have many answers for you. We are working on a protocol so that people won't be misguided and told that these things do not cause problems to our systems especially when I personally have the equalivent of Hiroshima going off in my spine.
Please get checked for Multiple Sclerosis as I am afraid for those of us that have had over 15 years experience with this ailment that this is yet another condition we suffer from as I, myself, was also recently diagnosed with this disease as well.
Please keep your chin up even though you are always lying down. You have a new family to your own now and I would welcome you to keep a journal on arachnoidcyst.net so we have more ammo to take to "them" when this all comes down.