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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

Hi Missy,
I am new here, but can perhaps help you a tad bit.
Our 13yrold daughter has a syrinx (due to Chiari) that goes from c2 all the way to the very bottom of spinal canal. Hers is an hour glass shaped , some areas are wider, some are narrow.
The syrinx puts pressure on the nerves which can cause numbness, tingling.
Unfortunately from what we understand so far these symptoms could be permanent .
Our daughter has right hand/arm/shoulder/face numbness/tingles. She is scheduled for Chiari decompression next week , the goal is to fix the chiari in hopes that it will make the syrinx dissolve , if not then she will have to go back in and have the shunt placed in spine to drain the syrinx.
I would definately recommend getting this fixed , as we have learned that the syrinx can eventually cause paralysis and lose of bowel / bladder control

Hi out there! I'm new to this site and I have just been reading all of your experiences with A.C.M and Syrinx, I also have been suffering with very clear symptoms for at least ten years but was only diagnosed in june 2004 with both of these conditions.
I envy your experience of treatment, I live in Edinburgh Scotland, and have been waiting nine months for an appointment with a neuro. I am now showing symptoms of Fibro, and have the added complication of having an allergy to any drugs containing codine,I have tried Tramadol which made me throw up, trying to survive on paracetamol and anti inflamatory drugs at present. As you will all appreciate I'm pretty much at the end of my tether. Any advice would be great.
I was just diagnosed with syrinx inside my spinal cord, all I know at this time that mine is about 2.5 cm and is located around lumbar 1 .
Actually I am not sure if I had any symptoms before because my hands get numb but the way I am sleeping I curled my hands myself in my wrists.
I had hysterectomy in February and all of the symptoms of syrinx has started right after my hysterectomy.
One day I had experienced terrible pain in my hips going down to my ankles.
And pain in my shoulder blades.
My doctor gave me trodol ( sp ? ) shot and my lower pain is gone but my upper is still there.
I have really bad pains between my shoulder blades or inside my ribcage on the left side.
I am going to see orthopedic surgeon in 2 days but from what I have researched on my own I will probably have to have surgery to avoid more damage.
I am not that bad right now, my right shoulder blade is little bit numb and it itches a lot (i am not sure this is related or could be some allergy to lortab)
I would like to hear from someone who is gone thru the surgery and how you feel.
I understand the damage area will not improve.
troka, have you had your upper spine checked for possible problems with an MRI?or even the possibility of having another syrinx up there as well?it would be very safe to assume that the upper body symptoms that you are having would be no way related to a syrinx anywhere in the lumbar is just not possible given how the nerves all run in your spinal cord.Just wondering,as this really needs to be looked into and as a seperate issue from your lower body syrinx.hope it is nothing major,it sounds like you already have more than enough to deal with right now.I DO know THAT feeling well,lol.marcia
Hey we all all in this crap together you know?most people who have never delt with all of this overwhelming crap just do not understand just what it is actually like being us.I would not just suggest to your ortho that you get an MRI done on your C spine, at this point, i would demand one.the symptoms you are having really do indicate a possible problem in that area..You really need to find out just what may or may not be up cannot treat what you don't know is there.good luck and keep me posted,marcia
Hello, Unlike the other posters, my son's syrinx was not a secondary condition of chiari. His just happened. Possibly a malformation (slight one) during embyronic formation.
He had burning and tingling in his hands and legs were weak. one dragged like an ogre. He lost his ability to write and had migraine headaches. 5 Mri's shows that he had a blockage from T7-T10 and was about 3. cm wide. it caused a 40 degree scoliosis in about a year and a half time which is very progressive. His symptoms only got worse as they always will. We were fortunate that we did the surgery in a quick enough time that all his nuerological symptoms were restored. The scoliosis even relaxed fortunately.
He had the surgery last year around this time. He was in TX children's for 4 days. He was in a lot of pain. He is autistic and very rarily shows emotions of pain. He did not spare those feelings this time. However, he was walking 2 days later and we were released 2 days after that. If asked today, he says he would do the whole thing again. his headaches and all the tingling and pins and needles disappeared so quickly. He is very thankful for his doctors at TCH. He has been cleared to resume all activity and is doing very well. The shunt was about 3 inches long and has worked wonderfully.
I hope this helps. I know it is frieghtening, but I think you will be amazed at how much better this will make you. As long as you are free of Chiari, the incidents of this returning is low. My doctor has been doing this surgery for about 20 years now and states that he has never had to repeat this on the same patient a second time. His name is Dauser, he is in Houston. He may be able to refer you to someone in your area.
I wish you hte best and keep us informed.
You need to see another doctor. Burning in the rib cage and shoulders is a PRIME symptom in Syringomyelia and it can CAUSE you to eventually become paralyzed. Some people have syrinxes and it never bothers them....but you are having symptoms that should not be avoided. Paralysis is not generally reversable and there have been stories of people waking up partially or completely paralyzed due to syrinxes.
The burning in the ribcage is possibly the spinal fluids attempting to stabilize throughout the cord. At this point, it can flood those cysts and cause a scoliatic curve that may not be reversable. (AS in my son's case). In short...please see another doctor! When there are neurological symptoms, they will only worsen and will never get better on their own. I promise you this!
Actually shunts can be the only viable option for some people....I have alos heard of people getting them and their symptoms are finally eleviated....its really up to you and your surgeon to decide and should never be entered into light heartedly. Anyone with a syrinx should have an upper C spine or brain scan to remove the thought of chiari being the problem. Surgery tends to be the only viable option for symptomatic syringomyelia so the statement its for paralyezed people is very actually stop people from getting permemnant spinal damage. The chiari Institute , though dealing with chiaris mainly, often deals with syringomyelia when it is secondary so it might have some ideas...its in NY if I am not mistaken.....just search engine ' The chiari Institue.' There is no way to 'remove' the syrinx by the way being remove it it needs to be collapsed and drained...this can be through a shunt or removing what ever is causing the blockage (chiari, tumour, etc etc). A good place for info is to search engine ' The american syringomyelia association' or ASAP I don't think I need to explain the reason to look there :)

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