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I am so scared right now.....I really need some help!!

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2

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  • I was dignoised with having a syrinx about 3 months ago after a MRI...It is 9mm in size. I am having symtoms but the nurosurgeon I saw just said he wants another mri done in 1 year. I feel like it has grown as i have new symtoms. I would like to have a second opinion. Does anyone know if the do surgery on a syringomyelia when the size is 9mm long? In alot of pain from this. I have it in my neck,it is at the c2-3 disk space.I need more information on what happens when it is 9mm in size.
  • I to have been dignoised with having syringomyelia that is 9mm in length in c2-3 cervical...I have alot of pain.. Cause a headache everyday. I feel like mine has grwon also, but saw a neurosurgeon that said have another MRI in 1 year. I am going to see my family physician tomorrow to see if he won't send me to another Neurosurgeon for a 2nd opinion. I am scared to death of this thing. I may be over reacting but I have read some terrible information about this condition and want to get mine taken care of as soon as possible.
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  • Hi. I'm 21 and I have a syrinc in my spine from t4 to t6. None of my doctors want to help me. I'm in chronic pain. Any advice. I live in pa. I'm just looking for answer.
  • Wow I know it's been years since this post but I had to express my sincere hope that you are recovering well and also offer my empathy for your plight. I came across this Forum when I was Googling syringomyelia and Johns Hopkins. I too have a case of syringomyelia that I've lived with for nearly 5 years. I like to keep up to date on research just to keep myself informed. I'm not sure if this has been resolved for you or not. I know what it's like to have your feelings ignored or minimized. And I know the sadness that comes with bad news, the anxiety of the unexpected future and the difficulty in accepting limits on quality of life. In my case, the syrinx was SIZEABLE. And when I say sizeable, I mean when a neurologist sspecializing in syrinxes saw my MRI films he said "Jesus Christ that's huge!" Mine is in my thoracic spine area, pretty much through the length of my shoulder blades like C3-C7/8. So, docs of course WANTED to do something about mine ASAP. The difference was however, that the cause of mine was known. I had acquired a Chiari Malformation due to a malfunctioning shunt. Literally, the tonsils of my brain were pulled down to my spine, creating a block that then forced CSF fluid into my spinal cord. And voila, we have a syrinx! My neuro did a Chiari decompression surgery to stop the syrinx from continuing to grow. What I had wanted to tell you was that syrinxes can go undetected and asymptomatic for years or even never cause problems. Mine had been unknown for at least 5 years with no symptoms. The only reason it was discovered at all was because symptoms arose. The extent of scar tissue on my brain was what led the neuro to determine mine had been around dormant for so long. But I felt no pain and lived a completely normal life before then. Once the symptoms started however, they progressed very quickly. Within 3 months, I had catapulted from no issues to permanent nerve damage through my left side-weakness, numbness and burning stabbing pins and needles type pain in my skin up my face down my neck and into my arm to the p alm of my hand. I had balance and coordination issues when my left leg wouldn't cooperate. I began to have difficulty with my bowel and urine habits and some intense headaches and very stiff neck and back pain. My doctors acted and stopped it's growth but felt it was too risky to operate to drain the syrinx. It is. They have to open the spinal cord. And shunt out the fluid with a tube. And the cavity can refill again. Even in my active, more severe case, I've never had the syrinx removed. You will find this with many doctors- the risks of the surgery often outweigh the benefit. My nerves were already damaged and could have been made worse by operating directly. Eliminaing the cause was enough of an operation to stop it from getting worse. The syrinx did it's damage though. My body naturally drained some on its own. But most of it was too late. My bowels came back to normal and I gained strength back in my leg with physical therapy. My facial nerves and the nerves of my left arm are permanently damaged. The skin burns and tingles every day. I take Neurontin to calm down the nerves to a tolerable level. I'm sensitive to cold and heat. I don't expect these things to get better. My syrinx still shows up on MRIs and the docs still don't want to touch it. What good would it do now anyway? But, if I were to go back and do it all over, I would make the same choice again not to operate on the syrinx itself. I've learned when dealing with nerves, you never know how, when or if they will heal. My,current pain is actually the result of healing, because those damaged nerves when from being numb to restored feeling, but damaged so not the correct feeling. What I've found is that in syringomyelia, time is of the essence once symptoms occur. The best advice I could give to anyone in your shoes is to choose a doc who knows his stuff and communicate well. Tell them everything you are feeling and exactly how it changes. It is very possible, and fortunate, that you may never show symptoms. If you do, make it known. And keep checking on it. It doesn't have to destroy your life. Please don't take my story as a cause for fear. I could have been paralyzed by this but I wasn't because I talked to my docs and we worked together. The monster can be contained. And my life is still happy, even with limits. You have no need to worry yourself, but take one day at a time. I thank God for all the good days ask Him for strength on the bad ones.
    Ally J
  • allyoop30aallyoop30 Posts: 3
    edited 05/13/2014 - 7:05 AM
    @aweiant I'm sorry to hear of your plight. I have syringomyelia too and I lived in PA before I got married and moved. I'm not sure if you are in east PA or if you've found a doc yet but if you haven't, I would highly recommend my neurosurgeon. He's a,doc who will talk to you, listen and spend time with you. He cares and is very knowledgeable. His name is Dr xxxxx, PA. I've sent others to him and he's treated them well as patients too.

    Post edited by Liz. Forum rules prohibit the naming of specific doctors.

    5.10 You agree not to post specific physician names or health care facilities names on Spine-Health.com.
    Ally J
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  • To anybody suffering from Syringomyelia, I hate to say it, but the biggest problem is the lack of knowledge in the medical community!!! When I was 13, I had a benign tumor removed from my back. Fifteen years later, I began having a burning sensation in the exact same place on my back. It was very painful and scary! I went from doctor to doctor having them all say there was nothing wrong. I literally felt crazy!! After all doctors I'd seen appeared to give up on me, I was sent to a pain management doctor. One look at my MRI, and he found the that I had a syrinx. I can't say I was relieved, but at I wasn't crazy! (At least not about that:))

    The statistics say that approximately 1 in 18,00 people suffer from Syringomyelia. It is listed as a "rare disease" among the medical profession. I mean, as lay people, we look up to doctors as always having the answers. What I've learn is that they DON'T!! I had one wonderfully honest doctor look at me and say, "I've heard of the disease but to be honest I'll need to do some research to learn more!" I had another say, "I treated tons of people with Syringomyelia and they don't have as much pain as you do." I figured he must be the one doctor in the world who treats us all;) Give me a break!!! I admired the doctor who was honest; I can't stand the ones who all pretend to be experts!!! It's a tough disease to cope with! I don't care what any doctors say because I know my body and I know it DOES effect me! There aren't a ton of support groups and although doctors all wish to be omnipotent, they certainly are not!!! The research I've read ranges from the worst: becoming paralyzed at some point in life, to the best case scenario: nothing would come of it. I personally find it hard to believe that if there is a whole (pocket) on the spinal chord that it wouldn't cause some sort of problem, seeing as our spinal chord controls all of our body and brain.

    The last point I'd like to make is that, given two people with a syrinx of similar size and in the same approximate place, the symptoms can vary widely even between those two people. I believe that doctors are amazing people with tremendous amount of ability and intelligence. I respect them immensely!! However, I believe we need to be cautious and not allow doctors who think they know everything there is about Syringomyelia, tell us that we should or shouldn't feel a certain way!! The truth is, there is so much research being done and so many questions left unanswered. Doctors can't read our minds or feel the way our body feels!!! It makes me extremely angry that a doctor can't be honest as the one I previously mentioned! Why can't they tell us, "The disease is quite rare! There is still a great deal of research being conducted on this disease. Since everybody is different, I'll help you to the best of my ability to deal with what you're feeling and learn as much as I can so I can get you through the stages of Syringomyelia!"

    I am NOT a doctor or expert of any kind!! But I do have a syrinx and IT DOES cause pain! It IS SCARY to read all of the information on the internet and sometimes even scarier to hear that most doctors believe they are experts on the subject!! If any doctors do read this, P L E A S E remember that unless you've had this disease, you are only hypothesizing and theorizing about the way the disease effects the people with it! If you listen and show empathy, maybe you"ll learn a little more about it and be able to help others!!
  • Just ran across this browsing for information on syringomyelia. I completely understand how you feel. I have one in my neck area that is 8mm wide, and smaller ones all down my back. The first and only neurosurgeon I have seen so far said that there was nothing he could do, and I should enjoy my life. I'm taking morphine sulfate for the pain, along with Gabapentin, Celebrex, Baclofen, etc... What kind of life is that? I broke my back 2 years ago this month, and that's when they found them. My neurologist is pushing for surgery, but I guess I have to find the right surgeon. Good luck with your syrisyringomyelia.
    Joe
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