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

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:32 AM in Neck Pain: Cervical
I am a 34 yo father of the world's most wonderful and amazing 2 1/2 you little girl. I had a MRI done on 5/6/09 due to arm pain from what was later identified as herniated disc at the C5-6. On my MRI impression my Radiologist noted that there is a syrinx at my C6 and it is 5mm long and 2.6 mm in diameter and that he feels it is "clinically insignificant."

My wife and I had an appt with a local neurosurgeon on 5/24/09 to discuss treatment options for my herniated disc. He reviewed the MRI with us and showed us the herniated disc and casually mentioned the syrinx. He said "this is not a problem now, but could be in the future." My wife and I exchanged quizzical glances at one another and asked him about it, but he just continued to move on to treatment options re: my disc. Which consequently is going to require surgery. I had a 2nd opinion by another neurosurgeon in another part of our state (Maryland) and he to was not all that concerned with the syrinx. Consequently, he is recommending surgery for the disc herniation as well.

For the past month and a 1/2 I have been dwelling on the dicectomy that I am going to have and have been ignoring the syrinx thinking it is not a big deal. However, something the 2nd neurosurgeon said really got me wondering and doing some research. I asked him if he could just remove the syrinx when he did the discectomy since he was already going to be inside my neck. He stated that the syrinx is inside my spine and in order to do that he would have to cut my spinal cord open. Now logically ANYTHING inside your spine that is not supposed to be there is a bad thing. So I started doing some research online and what I have discovered has absolutely scared me to death!!!! It appears that since I have this syrinx, I now have Syringomyelia. It is asymptomatic right now, but it appears inevitable that it will grow, elongate and cause me horrible debilitating problems in the future. The Radiologist was passe' when he spoke about it during my MRI results session with him on 5/6/09. He casually said that it is most likely something I was born with and was an abnormality. No real concern in his voice.

Am I over reacting to this syrinx or am I dead on in my fears and concerns for my future. I am sitting at work right now shaking so bad because I am upset that I can barely type!! I am grieving for my future and the life I wanted with my daughter and the planned additional children my wife were going to have. I don't know if it is fair to have additional children if the burden of caring for them could possibly fall solely on my wife. I am upset over the fact that treatment for this disorder appears very sucky at best with not a lot of hope for a normal quality of life. This is NOT how I envisioned my life being and how I would spend my future in pain and with back surgery after back surgery. I dont want to stop working!! I don't want to have to limit my activities! I want to coach my daughter in sports, I want to ride bikes with her and teach her to ride a horse and throw a baseball and shoot a basketball. I don't want to be a burden to my wife! I want to live to see my grandchildren and enjoy them!!! I am so upset right now I could just cry, in fact I am tearing up as I try and type.

I was dreading this discectomy surgery so much and fretting over the dangers of it, but it seems like a "walk in the park" compared to what I am potentially facing right now!!!

Today I have re-scheduled an appt for 1pm to speak with my Radiologist about the MRI and the syrinx finding additionally I have contacted Johns Hopkins for a consult. Initially, I was going to go there for a 3rd treatment opinion on my herniated disc, but now it appears it will be to manage a possible Syringomyelia disorder.

You know I refuse to let this alter my life, I am a fighter and a survivor!!! But I am so crestfallen over the possibilities that face me, right now I do not know how much ego strength I have to face this battle. I am scared to death and beyond upset!! ANY thoughts, advice or experience anyone could add to this would be of comfort and beneficial.

Thank everyone in advance for their time,
Gracie's Dad


  • Welcome to the forum. I have had 2 surgeries ACDF with fusion for herniated disks. I am having a 3rd one done on July 23rd (the 1st fusion didnt heal). Its not really that bad. Take a bottle of chloraseptic for the sore throat and remember that it should make the arm pain and some of the other symptoms you have go away. I am also an "internet junkie". I research everything I can find. Listen to your doctors. If this syrinx was a major issue, I'm sure the doctors would discuss the options with you. I know its hard but try to take life one day at a time, and deal with the surgery at hand. You need to heal from that. Its great that you got a second opionion, but if the doctors think it may have been there your whole life, maybe it isnt something to worry about just now. Good luck to you with your surgery. I hope everything works out. Also remember that your family is there for you for better or worse, and Im sure they will help you through anything that comes up. Take Care,
  • Wow! What a dilemma. I would be worried myself. But, you stated 3 professionals that have discussed it with you do not seem to be overly worried about it. And you said yourself that is is asymptomatic at this time.... While it is understandable to be worried about anything in your body that is not supposed to be there, one of my favoritest supervisors told me once "The things you worry about most in life, never happen". So, I worry about everything, that way, nothing happens!

    It's akin to finding out late in life you have slight scoliosis in your spine. OW! Now all of a sudden it hurts. Of course, a syrinx has the potential of causing difficulties on down the line more than the scoliosis I guess...

    According to the Merck Manual, 18th Edition:

    "Surgical decompression of the foramen magnum and upper cervical cord is the only useful treatment, but surgery usually cannot reverse severe neurologic deterioration." If you are interested in reading more, here is the link:


    So, I would think that if you do become symptomatic in the future, you could have them address it at that time? You are fortunate in that you know what to be on the look out for, and therefore, can address it quickly.

    I wish you lots of luck with everything. Let us know how the consults turn out, ok?

    Take care!


  • I totally understand your feelings about all of it. I am 29 and have lived a very active life. I've always done things for myself instead of asking for help. I have 5 kids (2 step). This past spring I was diagnosed with 3 syrinx's. I have 12 buldging dics, DDD, deg. arthritis, Moderate scoliosis, one herniated disc. I haven't been able to find a neurologist that will accept my insurance. I consider that pitiful since I'm an RN. Should I even worry about it anyway? The doctor's I work with tell me that there is nothing that the neurologist can do for me. I was even told my one of my co-worker doctors, "I think people being in pain isn't nessarly a bad thing. It let's you know that you're alive." I am also heart-broken over not being able to throw a baseball to my 11yr old. And take my kids to six flags. Am I suppose to be a grandma at 29?
  • I totally understand your feelings, but as others have said, you may need to just focus on the present and take it one day at a time. I agree that often the things we worry about either don't happen or don't happen to the degree that we fear.

    That said, I think it's good that you are getting a third opinion on this. I think you should persist until you get the answers you are seeking regarding this. I don't know if you have any kind of personal faith, but for whatever it's worth to you, I am praying for you this morning and hope that you as well, will be able to place the "burden" of this in God's hands.
  • there is a treatment called the proton beam which shrinks growths but doesnt affect surrounding tissue. i know this because they used it to shrink a growth in the middle of my head. there arent a lot of sites in the country that have this proton beam but it might be worth knowing if it might help in the future.
    best of luck
  • I feel your fear and pain ! Go with it for a small while...then make sure you keep telling yourself that there's plenty of time between "now" and "then". Be happy now...and sad later.

    Easy for me to say, huh?

  • I don't know how I missed this thread, but if you are still around I can offer some encouragement. I too have a syrinx in my cord, and have gone through the ACDF. I have done a lot of research on syringomyelia. One interesting fact is that MANY people have these syrinx's from birth, they are asymptomatic, and would never even be diagnosed if it weren't for the marvelous technology we have now. I have known about my syrinx for about 3 years, and at first the doctor scared me to death over it. Once I got in to see a specialist who knew what he was talking about, I found out it isn't really as big of a deal as it sounds, as long as it is asymptomatic. Your syrinx is very small. Let me try to explain what I have learned.

    For a syrinx to be a problem, it has to be large enough to interrupt the signal that goes through your spinal cord itself. Seeing a big white spot inside your cord is never good, but as long as it isn't growing, it is nothing to worry about. The standard treatment is to monitor it with repeat MRIs annually. No change, nothing needs to be done.

    I recently went through a complete decompression from front and back to allow more room in my cord. for now, that is all that needs to be done. the reason I had that surgery done wasn't because of the syrinx, but it does benefit the syrinx. In the event it grows to the point something further needs to be done, they would insert a shunt to drain the fluid out of it. As you mentioned earlier, that means opening up your cord, which is not something any surgeon will take lightly. They would never do it for a 5mm syrinx, in my opinion. PLEASE try to relax about this. Is it something to watch? Absolutely. But go on, live your life, and raise Gracie. It is quite possible the syrinx will never be an issue for you.

    Please feel free to ask me any questions. Of course I'm not a doctor, just a fellow spiney who is living with a syrinx. by the way, I have 5 kids, and am looking forward to years with many grandchildren.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I apologize for not being around, I just needed to get off the internet for awhile and heal my mind and soul from all the horrible information I found on Syringomyelia.

    Since I last posted I have seen the Radiologist 2 more times and the 2 neurosurgeons I was considering for my foraminatomy/discectomy as well. As well as one of the most respected family Drs in this end of Maryland. The radiologist told me that what is showing up on the MRI is what is left of my central spinal canal. Now this should have collapsed and grown over throughout the course of my 34 years, but on some people it nevers does and this is completely normal. It is now just a regular part of my body. He does not feel it is a traditional syrinx, however that is what he put on the MRI to identify this mess.

    The two neurosurgeons told me not to worry about the syrinx as it is very small and will most likely not cause me trouble. One of them even stated that these things are not nearly as rare as what the research likes to indicate and that he sees at least one of these a week in his practice. This guy works in my community and we are a small rural county in Maryland of about 75K. He forecasted that IF it does give me trouble it is 20-30 years down the line. Both seemed fairly knowledgeable about syrinxes, but ALL literature says you need a specialist to manage your care because these things are so unpredictable in growth rates and what not. So at this time my wife and I have scheduled an appt with a Dr. ABC at Johns Hopkins on 7/21. This Dr is supposedly one of the best in the world on Syringomyelia.....we shall see.

    My wife is putting complete trust in the Radiologist whom her family has known for years professionally. My mother-in-law is a nurse and she has dealt with this man for a long time and knows him to be very thorough and very wise and very up-to-date on medical information. I also took the liberty of emailing one of the leading Syringomyelia experts in the country, a fellow named Dr. XYZ. He actually has written several research pieces about syrinxes turning out to be remmnants of the spinal canal and he responded back that it is quite common this mistake is made. So I am hoping beyond hope that the Radiologist is right and that the Dr at Hopkins confirms this on 7/21. I will then put this behind me and focus on my discectomy and get on with life!!

    Thank you again for all the caring and well wishes, I will need this again if the syrinx does turn out to actually be a syrinx.

    Post edited to remove specific doctor names. Naming doctors in your posts is not permitted at Spine-Health

    Ron DiLauro, Spine-Health Administrator 06/29/09
  • I am finding peace, but I do not think I am 100% out of the woods yet. All the information I have researched still has me scared that my Radiologist and everyone else non-syringomyelia specialist is wrong. IF Hopkins gives me the same information as the Radiologist.......THEN I will be at complete peace and able to rest easy.

    Yes I am going to have the disc surgery, I am waiting until after 7/21. Right now I am doing traction and some laser, facet and massage work with my chiropractor and staying functional. It helps when your chiropractor is one of your bestfriends and can fit you in when you need it.
  • AnonymousUserAAnonymousUser Posts: 49,671
    edited 05/13/2014 - 8:09 AM
    I was diagnosed with syringomyelia 5 months after I was married. My only symptoms were spacticity in my leg especially in response to very hot or very cold touches, and bladder problems. Since my insurance coverage at the time was very good I gave my OK to an MRI. I was shocked, terrified, etc. when I was told/shown that I had a "tumor" in my spinal cord (later clarified as syringomyelia) and that even without the necessary surgery I would probably never walk again. That was 23 years and 3 syringotomies ago. I get around my house OK since I know that if I fall I can either crawl to something and get up on my own or someone will be there to pick me up (my husband and I just celebrated our 23rd anniversary; my daughter - born after my 1st surgery - is entering her 2nd year at a prestigious university) and use a cane for very short distances, but must use a wheelchair for distances of any length. Nevertheless, we have vacationed all over the world and I have gone hot air ballooning, dogsledding on a glacier, exploring cliff dwellings in New Mexico, indoor skydiving, etc. Determination is key. My neurosurgeon - who was 2nd to God to me - retired years ago, and I have not been able to find even a neurologist who will do more than throw up his/her hands at my condition, but I finally have found a wonderful pain management doctor at xxxx NJ. Good Luck to you Gracie's Dad: soak up the love around you and USE it!!

    Post edited. 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.
  • 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.
  • 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 - 8:05 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
  • 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.
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