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585400 tn?1218348322

What helps your syringomyelia pain?

I was diagnosed with Syringomyelia a few months ago. I have been to 4 different doctors and all of them has given me different advice. None of the advice has left me feeling any better. I dont think the doctors here, know much about Syringomyelia.  I am no better off today then i was before i was diagnosed. I am currently seeing a pain doctor who has prescribed Dilaudid and MSContin. I dont feel much relief from the pain meds, but i may feel much worse without them.  Does anyone here have Syringomyelia? If so what pain meds work for you and do you have any advice for someone who feels very confused with this disease? At the present time, i try to LIVE WITH the fears and the pain i have, and i am not sure what to do next?
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Avatar universal
I  was diagnosed with syrinx at c6  a year ago the pain is unbearable and 2 doctors said it doesn't cause any pain...I have weakness on my left arm and muscle spasm mainly leftside,,,is this curable? I don't trust my doctors. They are not helping at all.im terribly worried
Helpful - 0
Avatar universal
I´ve had severe syringomyelia pain for 30 years, the last 10 being the worst painwise. The only things that help me is Instanyl nasal spray and Oxynorm mixture, (oksykodonhydroklorid). The spray only for the most severe attacks. I have some 5-6 attacks per day, 2-3 of them very tough ones where I use both medicines. For the rest of the attacks I use only mixture. For the daily cronic pain I use Fentanyl plaster, Lyrica and Cymbalta tablets.
Helpful - 0
Avatar universal
I too have Syringomyelia and you are right...all the I hadve seen give different advice.  Personally my pain is very similar to diabetic nerve pain and I use Gabapentin and for the muscle spasms I use Tizanidine.  
There are just not enough experts out there.  I have seen 3 Neurologist and 2 Neurosurgeons and not one of them said thee same thing with one exception, the last set of Doctors said, you will be in pain and that is what needs managing.  MSCotin and Dilaudid is NOT good.  You should be on medications that target your pain symptoms not just a strong in general Pain Medications.  Good Luck
Helpful - 0
Avatar universal
hi Mark
I am 53.ive had headaches since i was about 19.and over the years had numbness and loss of feeling and sensation of hot and cold.when i was about 29 the hospital gave me an MRI scan.they said that a magnum decompression operation could help.it didnt change anything.a while later i saw the consultant,who said there was nothing more at the present time that could be done for me.but that medical science was getting better each year,so maybe hope in the future.i got a letter from the consultant saying that i had signs of possible syringomyelia blah blah blah.over ththe past few years i have been getting more symptoms.I recently have had another MRI because i cant lift my arm up.i decided to look up on syringomyelia.I knew then that i had the desease for sure.and all differant things such as pins and needles and numbness in my feet.blurry vision,terrible lack of concentration,forgetting things and more.the neuroligist said my arm problemb is prob linked to syringomyelia.As you say.it says in forums that people with syringomyelia should have regular monitoring and MRI's.i havent had anything in over 20 years.and prob would never hav if i hadnt looked it up myself.It also says you should refrain from straining activity.I am a Plasterer (this is proberbly the worst job i could be doing).I think its disgusting the way they have neglected me.Scott
Helpful - 0
Avatar universal
I've had CM for 26 yrs after a cycling accident in 1986. I have servere pain &
the two things that helps me is Oxynorm (liquid oksykodonhydroklorid) & Instanyl (a fentanyl nasal spray). Both very expensive, but covered under the
National Health Care System here in Norway. I've tried a lot during these 27 yrs but most things have little or none effect, like acupuncture, tense etc.
I use 300 mg lyrica x 2 plus fentanyl pain plaster 175 microg/hour for the cronic "all the day long" pain and then Oxynorm and Instanyl for pain attacs,
4-5 per day.  I continued my work as a manager in a large international company after the accident in '86 until 2006 when I had to quit after a mistake at the hospital during a surgery for another disease.
Helpful - 0
Avatar universal
I read your posting and I'm new at this forum. I was crushed by a 2000 pound tree branch that landed on my back in 1986, the following year I started showing dysfunctions both arms. a Neurologyst doctor diagnosed me Syringomyielia Chiari 1 type deformation. I have lived with this crazyness for over 26 years. I have taken ALL medications and nothing has helped,some I have taken for years in the hopes to relieve the discomforts and the pain.
I have been seen by an army of doctors and some, never heard of this thing.
I have been able to give a name to the effects of this condition, that are familiar to people who dont know how this thing feels beside the pain.."an eternal HANGOVER STATE.." or an "ETERNAL FLU CONDITION.."
Helpful - 0
Avatar universal
My husband has SM. He had a shunt placed 2 yrs ago. Has anyone else had this surgery? Right after the surgery u couldn't even see the syrinx hardly at all and now u can see it. The dr says that doesn't mean it's failing and he will have another MRI to make sure soon. I am so scared because I can't imagine him having to have that surgery again. He takes Lyrica and pain meds but tries to cut back and makes himself worse by doing so. The Meds r so expensive and all pharmacies look at u like u r a junkie when filling pain meds now. It's horrible. Does anyone have any advice on any meds or anything that might give him some relief at all?? Anything at all??? Thank u fO
Helpful - 0
Avatar universal
i have this problem do to trama [surgery to my neck] mine is inoperateable. but the pain at times i can't move it hurts so bad . mine will not get better only worse  i take a lot of pain meds some times no releaf what helpd the most is gabupantan . please reply
Helpful - 0
Avatar universal
I was diagnosed with Syringomyelia at age 3, I’m 23 now. I’ve been to Boston Children’s Hospital, Mott’s, Mayo Clinic, Cleveland Clinic, and medical institutions all over, and pretty much ever doctor said the same thing. It’s a rare disease, and  the treatment depends on the patient and the symptoms. If you get headaches with your SM, Topamax works for me to help that pain. However, I've literally tried EVERY drug and other treatment they have, with no relief for my other pain (Leg and hand numbness and pain). At Boston, they gave me a "Tens Unit", sending electrical impulses through my back throughout the day, and that's the only thing that's help even a little... It might work for you!

Cleveland Clinic also told me about a laser surgery (sometimes not covered by insurance) that can help with any nerve damage from the syrinx (if that's part of your pain)...Do to other issues, I couldn't go that rout.

Good Luck!
Helpful - 0
Avatar universal
I use medical cannabis for sm as well. It has greatly lowered the amount of meds i have needed to control my symptoms. It really has helped pain and makes me more functional. I have been on lyrica, cymbalta, and every opiate in the book, and also tried a tens unit. Nothing has helped as much as cannabis, its my preferred way to kill pain because i hate pills. I would rec cannabis bho wax or oil high in cbn and cbd and vaporized, also edibles work well.
Helpful - 0
1 Comments
Have you tried Fentanyl nasal spray?
620923 tn?1452915648

  Hi...do u also have chiari malformation along with ur syrinx?

I was wondering if u have another related issue going on, that could be causing ur inability to walk?

Once u have a syrinx that is compressing a nerve that bad they do surgery, either a decompression or they use a shunt or a stint...did u have either done?

  BTW- we do have a forum for those with chiari and syringomyelia..

http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc
Helpful - 0
Avatar universal
i was born with syringomyelia and i have sufered my whole life i have two children and a husband i am as happy as i can be i am glad i am not the only one going thrue this the pain is so bad sometimes i can't walk but i have a family to take care of i am look for a good med to take the pain away
Helpful - 0
620923 tn?1452915648
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

We do have a forum here with other members with syringomyelia...u may want to stop by.

"selma"
Helpful - 0
Avatar universal
just be thankful you are not in the veterans healthcare system, I was told I had sm six years ago and needed imediate surgery, since then,I have had four doctors not one of them had ever heard  of sm. I even had one tell me I knew way more than he did about sm, and that was after being under his care for six months. when you tell VA doctors about the symtoms they look at you like you have two heads, and when I tell them of the constant chronic pain they think i'm lying just to get drugs. somtimes my pain is so bad (rainy days are the worst) if I didn't need my arms I have them cut off. people with sm should have mri's with contrast at least once a year. I am 49 and with the lousy care I have I am no longer able to work. don't let the sm get as bad as mine, insist that you have periodic mri's to keep an eye on it before it's too late, you may think it will get better, but it will only get worse. i'm not trying to scare you ,but my message to anyone with sm is don't do what I did. mark. milo me.
Helpful - 0
Avatar universal
Hi
I was diagnosed with Syringomyelia last year by a Neurologist after about 2 months of weird symptoms. My dr thought it might be a viral infection after my brain scan came back clear.  After an MRI of my back they diagnosed a syrinx from C3 to T8.  I was told by the neurologist that it was not big enough to risk surgery.  I was prescribed Lyrica but currently do not take it.  I have symptoms every day.  I find staying busy keeps my mind off it.  I avoid any type of lifting and was told that in particular lifting something whereby you hold your breath is the worst. Any type pf straining also to be avoided.  I am returning for my 12 month mri scan in April to see if it has got bigger.  I was told my best case is to hope it doesn't get any bigger and deal with the symptoms. I find when I go to rest my body or lie down I feel the symptoms more.  I do not know the cause of mine.  My advice is to see a neurologist who has experience with Syringomyelia, join a specific Syringomyelia help group and see someone who can either counsel you on having an illness or relax you.  I freaked out at first and it made it a lot worse.  I hope you find help or comfort soon.  This is unfortunately an illness that is difficult because the symptoms are so different and without the cause found difficult to treat.
Helpful - 0
Avatar universal
Hi i am 22 yrs old and was diagnosed with SM due to chiari about 1 year ago. after a failed decompression surgery my only option would be to take out a piece of the cerebellum. I consume alot of marijuana everyday, and know of its effects on the brain and so on, so i made some research and saw that in lab tests on animals mariuana slowed down the flow of CSF into the spine, wich would mean ? slow down the effects of the syringomyelia now we are talking serious slow down, about 3 times. Also smoking takes away every single symptom that i have : stomach ache, cephalea in my temples, tingling sensations in my hands and feet and so on , i recommend people with SM that are MJ friendly to try out and give me feedback and if any doctor reads this could i get a prescription anywhere ?
Helpful - 0
Avatar universal
fentanyl patches or suckers can help too. i have taken pretty much everything under the sun for pain and it gets so bad for me that nothing really works
Helpful - 0
Avatar universal
Hi, drugs like gabapentine, amitryptline, pregabalin (lyrica) are good for neuropathic pain and works well if given along with medicines like MScontin. Consult your doctor before taking these medicines.
Helpful - 0
Avatar universal
Hi, drugs like gabapentine, amityptline, pregabalin (lyrica) are good for neuropathic pain and works good if given along with medicines like MScontin. Consult your doctor before taking these medicines.
Helpful - 0
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