oh my gosh. you all sound like my brother. i am a new person to this site. he's been through so much. leg pain, back problems,neck problems, no control. our father had so many of the same symptoms. he was always in pain and had the same kind of symptoms. so do i but know one listens. your right. they say it's all in your head. please send any kind of advise. thank you.

my brother has been diagonsed with this disease and is having a horrible time. no insurance and can not get any help. no where to go. and his family doctor says he needs surgery. and nero doc. but of course he can not afford any of it. christopher reeves foundation did respond but no where to go. signed up for disability but was refused. anyone with help or guideness please help me help him. he's having horrible headaches, tired,pain,weakness etc...........anyone who can help sure will be appreciated. for all of you with this disease. GOD BLESS

I suffered debiltating headaches, as well as some other less prominent symptoms for years. At times, i waas truly scared by what may be wrong with me. The doctors I saw, as well as the first nuerosurgeon I saw, did nothing but perscribe migrain med afte migraine med, even though the symptoms did not suggest migraines at all. Only recently was I finally belssed by being referred to a new neurosurgeon, Dr. Petra Klinge with the Neurosurgery Foundation in Providence, RI. It took her almost no time to figure out what she was looking for and with in days she was showing me MRI pictures and explaining exactly what my problem was. To make avery long story short, my problem was originally caused by a pseudofusion of the C1 and C2 which was crushing my spinal cord and caused a large syrinx. Dr. Klinge performed surgery 2 days ago to repair the the pseudofusion. She also need to remove numerous adhesions that a formed and what she described to me as a sort of a tethering which had fromed and was also making the syrinx worse. Overall, it was a whole lot of damage that would probably have never gotten as bad as it did if someone had diagnosed it years ago. The surgery probably happened just in a knick of time and I don't feel like I'm exagerating at all to say this Doctor has truly changed my life, if not saved it in general. She has definately saved my career and ensured that I will not lose the ability to do the simple, important things in life like pick up my children or take a painless walk. I'm still in the sore recovery stage, but I will be sure to update later after I've healed and share how things change for me. In the meantime, I really just wanted to wish you all the best luck with your issues and I hope that you all find your Dr. Klinge. If you are anywhwere near the Providence area, I can not recommend enough that you try to see this surgeon.

I was recently "correctly diagnosed" with SM and a herniated disc at t8 and a syrinx there that runs 33 mm in length, and another syrinx at c5 to the c7 area which causes me severe pain in my left shoulder and arm. The 2 syrinx are possibly connected which would basically run almost the entire length of my back. I was told by many that this was all in my head, even doctors. Possible that my syrinxes were started or happened 49 years ago. I can now feel it getting worse almost on a daily basis and am being treated with daily pain control. Wish I had less, but there is more and I am barely in control of my mind at this point. Glad that Jesus is my Savior..gives my spirit the peace it needs right now. Surgeries are upcoming and I've already had 4. Trying to be a blessing to others weighs heavily on me now. God bless, Joe

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