Aa
Syringomyelia
I am 47 and I live in Ottawa Canada. I have suffered back and neck pain since my late teens. Over the years the pain has increased. I have sought medical attention many many times but no one was ever able to tell me exactly what was wrong. In July 2006 after weeks straight of non stop pain in my lower back and right hip and extreme pain on my left side where my ribs are. I lost all feeling in my left leg and while on the way to the hospital the numbness crept up to my lips. An MRI was done and they found a syrinx from T4-T12. It has been well over a year and several MRI's later and I still have no real answers. The nuerosurgeon I am seeing told me last week after my last MRI that there has been no change since last year and that the pain that I am in is not asscociated to the syrinx. I don't pretend to know everything but what little I do know about this condition I have had to find out on my own. Basically there is not alot of information out there. I wanted to know from my surgeon if there is anyone out there that specializes in syringomyelia? He did not know of anyone and I think may have taken offense because I asked that. I have suffered for so long with no answers. I am taking heavy duty amounts of Morphine and I am still in pain. My shoulders started hurting a few months ago and if I lye on my back for more than five minutes my arms go numb. The worse pain is on my left side I have always called it my rib pain not really sure if that is where the pain is really coming from. The skin there feels raw and sore and tingley.
I would be willing to travel just about anywhere if only to get some answers on whether the pain I have is related. I need to know what I'm up against. Its hard to get better or try to get better if I don't know what I'm dealing with.
I pray that you will beable to enlighten me or suggest a Doctor whom may have more experience with this condition.
Thank you in advance
Jenny613
I would be willing to travel just about anywhere if only to get some answers on whether the pain I have is related. I need to know what I'm up against. Its hard to get better or try to get better if I don't know what I'm dealing with.
I pray that you will beable to enlighten me or suggest a Doctor whom may have more experience with this condition.
Thank you in advance
Jenny613
Hi,
I thought I would send you a quick message because your story sounds a lot like my own current medical struggles. I was diagnosed with syringomyelia in 2008 when a neurologist inadvertently found my syrinx while performing a MRI for a different reason. I was not having any symptoms at the time, so the neurologist sent me on my way and told me to closely watch my syrinx (MRI every two years) to see if there are any changes.
In 2012, I had an accident where I jarred my syrinx. The symptoms started to present themselves a couple months later (severe headaches and lower back pain). I had a shoulder surgery in the summer of 2013, and since I tried to come off of pain meds after the surgery, I could barely stand. Since last summer, I've undergone multiple steroid injections with no relief and seen a countless number of doctors. My pain has developed rapidly since last summer and now encompasses all parts of my body except my face. I also suffer from neuropathic pain, burning sensations throughout my body. I also experience tingling and numbness throughout my body and progressive weakness in both legs and both arms. The worse pain I have is still in the lumbar region of my back, but I also have severe pain in my SI joints and hips.
Recently, due to the onset of new neurological symptoms, I took it upon myself to contact my neurologist who had told me in 2013 that my syrinx had not changed. He immediately ordered more MRIs. On completion, I learned my syrinx had grown upwards into my cervical area (previously was only in my T-spine) and further down in my T-spine. There also is the presence of Chiari Malformation, but the doctors say its not "crowded." I was referred to a neurosurgeon who recommends NOT operating at this point. I'm in the process of receiving a second opinion from another neurosurgeon because I desperately want to try some type of surgery. I'm in my mid-thirties. I've lost my career as a teacher, all my money and am about to lose my health insurance. I'm desperate.
I am interested in finding out how your journey with syringomyelia has been for you since your last post. How is your pain? Have you resorted to having surgery? Please feel free to contact me at: ***@****
I thought I would send you a quick message because your story sounds a lot like my own current medical struggles. I was diagnosed with syringomyelia in 2008 when a neurologist inadvertently found my syrinx while performing a MRI for a different reason. I was not having any symptoms at the time, so the neurologist sent me on my way and told me to closely watch my syrinx (MRI every two years) to see if there are any changes.
In 2012, I had an accident where I jarred my syrinx. The symptoms started to present themselves a couple months later (severe headaches and lower back pain). I had a shoulder surgery in the summer of 2013, and since I tried to come off of pain meds after the surgery, I could barely stand. Since last summer, I've undergone multiple steroid injections with no relief and seen a countless number of doctors. My pain has developed rapidly since last summer and now encompasses all parts of my body except my face. I also suffer from neuropathic pain, burning sensations throughout my body. I also experience tingling and numbness throughout my body and progressive weakness in both legs and both arms. The worse pain I have is still in the lumbar region of my back, but I also have severe pain in my SI joints and hips.
Recently, due to the onset of new neurological symptoms, I took it upon myself to contact my neurologist who had told me in 2013 that my syrinx had not changed. He immediately ordered more MRIs. On completion, I learned my syrinx had grown upwards into my cervical area (previously was only in my T-spine) and further down in my T-spine. There also is the presence of Chiari Malformation, but the doctors say its not "crowded." I was referred to a neurosurgeon who recommends NOT operating at this point. I'm in the process of receiving a second opinion from another neurosurgeon because I desperately want to try some type of surgery. I'm in my mid-thirties. I've lost my career as a teacher, all my money and am about to lose my health insurance. I'm desperate.
I am interested in finding out how your journey with syringomyelia has been for you since your last post. How is your pain? Have you resorted to having surgery? Please feel free to contact me at: ***@****
Hello Amanda and everybody else who suffers from SM, as the previous doctor mentioned it in your post; take Gabapentyn, Amitrytiplin, Cymbalta, Marijuana, Morphine, Oxycodon, Tylenol, Doan's pills, acupuncture, yoga, calestenics, booze, Vodoo treatments, bungee jumping and as you say it...seems that nothing under the sun helps..I've tried it all for 26 years, and yes..!!! quality of life, if there is any left, is now gone..my loggin is (mogutty), read my previous postings and youll find out how we all are confronting a GHOST called Syringomyelia..!
Beware of the medicine community that will offer to fix this condition; it's just another insurance scam to leave you stranded living under a bridge, like It happened to me. My arms and legs get so ANXIOUS, because the numbness caused by SM, somethimes I wish I could cut them off .!
I been taking Oxycodon and Antivan to relieve the pain and anxiety, but I become a ZOMBIE..so again..that is no lifestyle for me...insofar as medication goes, that is the most has helped so far. And you have the right to be frustrated and angry like I'm, because off all the bad luck in the world. I ended up with the worst of all. I'm learning to draw and paint, in my feeling good hours, at least I know I'm doing something....Stay strong and keep inquiring about this dysfunction. take care.
Beware of the medicine community that will offer to fix this condition; it's just another insurance scam to leave you stranded living under a bridge, like It happened to me. My arms and legs get so ANXIOUS, because the numbness caused by SM, somethimes I wish I could cut them off .!
I been taking Oxycodon and Antivan to relieve the pain and anxiety, but I become a ZOMBIE..so again..that is no lifestyle for me...insofar as medication goes, that is the most has helped so far. And you have the right to be frustrated and angry like I'm, because off all the bad luck in the world. I ended up with the worst of all. I'm learning to draw and paint, in my feeling good hours, at least I know I'm doing something....Stay strong and keep inquiring about this dysfunction. take care.
Hi Amanda,
I have a 22 year old daughter that was just diagnosed last year, we think hers was caused from a very bad car accident she got into. Her name is also amanda. She is now experiencing numbness in her legs and hands. She is having ahard time doing any kind of excercise which has you laying on your back, she gets like a charlie horse in her legs but that will last a long time. I am going to try to get her into UCLA med center there is a Dr there that that is all he does ,very hard to get into but you might want to give it a try his name is U. Batzdorf. If anyone out there has gone to him I would love to hear what you think.
I have a 22 year old daughter that was just diagnosed last year, we think hers was caused from a very bad car accident she got into. Her name is also amanda. She is now experiencing numbness in her legs and hands. She is having ahard time doing any kind of excercise which has you laying on your back, she gets like a charlie horse in her legs but that will last a long time. I am going to try to get her into UCLA med center there is a Dr there that that is all he does ,very hard to get into but you might want to give it a try his name is U. Batzdorf. If anyone out there has gone to him I would love to hear what you think.
I too have syringomyelia and have had severe pain in my back and ribs for a while now. I am 26 years old and am now pregnant. The pain seems to have gotten much worse over the past few months and now I cannot even sleep because of how bad it has gotten. I have seen a few doctors in regards to this but none of them think that my pain is related to the syrinx. Ive also had too many tests to count but still no real answers. I would love to find a good doctor who can help me with this. It has really been ruining my quality of life.
to all who have posted! my name is amanda and i am 22 and have syringomyelia. i am in the same position as well with not finding many answers. I have three syrinxs and had my first two surgeries when i was 15. I had a tethered chord surgery and then i have a csf leak and had a shunt than ran up my spine and out into a bag that let the spinal fluid drain for aout 20 days and then they took it out. for years i have had pain and it would go in sperts as to the severness of it but these last two months of my life have truly been hell and i have no answers thus far. I lay in bed day after day because i hurt to bad to do anything else. i have had to drop out of college so many semesters and this will be another one. I had to quit my job too because i could not bare to be there in the amount of pain i live in. I stay so drugged up on pain meds i dont want to do anything. I understand how you feel completely and the last thing i want to be doing when i am 22 is dealing with this so if anyone knows of any good doctors let me know!
Hey there. . . .... do you still want to talk to someone else who has Syringomyelia? I noticed that this was all posted awhile ago so I'm not sure if you still check this site anymore. . .but if you do and you wanna talk then comment me back and we'll talk. I can relate to A LOT of things you've written about and experiences you've had. Let me know!
jkidd74
jkidd74
Hi Justin
Thanks for the reply. I will definitly check out the site. You said you have syringomyelia as well. Where is yours? And how long now have you known about it? What kind of symptoms do you have? Do you see a pain consultant? I have been seeing one for over a year. Sometimes my pain is manageble other times I wonder why I'm taking all the morphine as it doesn't help at all. I have had a few injections in my back but didn't get any relief. This Friday she plans on injecting me in the front near my ribs. My whole left side from my belly button wrapping around my ribs to my back is affected. My skin on my left side feels like it is burned and tinglely. I went to see another Nuero guy and we didn't hit it off well at all. He is telling me that none of my symptoms have anything to do with the syrinx and maybe he is right but after all the years of pain and problems with my back and neck when they found the syrinx I thought I had finally found out what has been the matter with me for years and that maybe now that I knew what I was dealing with I could work on finally getting better. Little did I know that what I had, there was not alot of info on. I think that is why maybe the surgeon was peeved with me when I asked him how many cases in his career had he seen. I think he thought that I wanted the surgury which I do not want ever. From the sounds of it the surgury is very dangerous and doesn't always give the releif it should. I asked him if he knew of anyone who specialized in this and his answer was no one does. Apparently there is not enough people with this condition to warrant anyone going into that field. Wow that sure made me feel good. So needless to say I'm on my own again and just want to get better. I think I finally realized after my last appt with Surgeon that i have to find help on my own.
So again I thankyou for your reply and I will check out the link. And any info you have will be greatly appreciated. As you are the only other person that i have had contact with that has Syringomyelia. Thanks Justin
Thanks for the reply. I will definitly check out the site. You said you have syringomyelia as well. Where is yours? And how long now have you known about it? What kind of symptoms do you have? Do you see a pain consultant? I have been seeing one for over a year. Sometimes my pain is manageble other times I wonder why I'm taking all the morphine as it doesn't help at all. I have had a few injections in my back but didn't get any relief. This Friday she plans on injecting me in the front near my ribs. My whole left side from my belly button wrapping around my ribs to my back is affected. My skin on my left side feels like it is burned and tinglely. I went to see another Nuero guy and we didn't hit it off well at all. He is telling me that none of my symptoms have anything to do with the syrinx and maybe he is right but after all the years of pain and problems with my back and neck when they found the syrinx I thought I had finally found out what has been the matter with me for years and that maybe now that I knew what I was dealing with I could work on finally getting better. Little did I know that what I had, there was not alot of info on. I think that is why maybe the surgeon was peeved with me when I asked him how many cases in his career had he seen. I think he thought that I wanted the surgury which I do not want ever. From the sounds of it the surgury is very dangerous and doesn't always give the releif it should. I asked him if he knew of anyone who specialized in this and his answer was no one does. Apparently there is not enough people with this condition to warrant anyone going into that field. Wow that sure made me feel good. So needless to say I'm on my own again and just want to get better. I think I finally realized after my last appt with Surgeon that i have to find help on my own.
So again I thankyou for your reply and I will check out the link. And any info you have will be greatly appreciated. As you are the only other person that i have had contact with that has Syringomyelia. Thanks Justin
Forgot to put this in...the link to the UVa Medical Center Neurosurgery Dept. is http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty.cfm
Dear jenny613,
There are specialist out there that do specialize in Syringomyelia. If you go to www.asap.org there are dr's there that specialize in the condition. I do have syringomyelia my self and see a very well established neurosurgeon here at the University of Virginia Medical Center. Dr. Mark E. Shaffrey has some experiance in this field and he is my neurosurgeon or there is Dr. Edward H. Oldfield who is another neurosurgeon here at the UVa Medical Center who does specializes in Syringomyelia. I would def. look into getting a person who does specializes in this condition. It cert. helps.
There are specialist out there that do specialize in Syringomyelia. If you go to www.asap.org there are dr's there that specialize in the condition. I do have syringomyelia my self and see a very well established neurosurgeon here at the University of Virginia Medical Center. Dr. Mark E. Shaffrey has some experiance in this field and he is my neurosurgeon or there is Dr. Edward H. Oldfield who is another neurosurgeon here at the UVa Medical Center who does specializes in Syringomyelia. I would def. look into getting a person who does specializes in this condition. It cert. helps.
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