dilantin

[Fragile]

has anyone tried dilantin to control pain caused by a syrinx? Good, bad results?

Long story short, have been in terrible pain for the last three years (C5 incomplete, 13 years post). Had an MRI taken in 2005, the radiologist said my spinal cord looked normal. Told him that wasn't possible, please look again, same diagnosis, everything looked normal. Went to a neurologist w/ the 2005 MRI's last thursday, he immediately saw a 5 cm syrinx. He prescribed dilantin, I had already tried neurontin and lyrica w/ out any relief. He also ordered a new MRI. The radiologist who originally read the 2005 scans was fired shortly after my scans were taken.

[razzle51]

dilantin

I almost went on Dilantin but we went with Keppra which is working quite well for me . I have had to raise the dosage twice. I will go to the Dilantin if need be . Its a old med , been around for a while. Let me know how you do . Send me a PM . I have Syrinx T4-T10 Roz

Just go to edit option and enable to receive PMs

[rollin64]

does a syrinx make neuro pain increase? over the past yr. mine has gotten progressively worse. the last 3 months have been awful. right now my hands an feet feel like they're on fire. my hands feel like they're constantly wanting to draw up more.

i just increased to 600mg neurontin 3x daily.

[graybeard]

Have spasms increased? Loss of function seems to be one constant Ive heard for the syrinx's. Take care. John

[David Berg]

Yes, a syrinx can be a cause of neuropathic pain.

[mike bauer]

Scared of a Sryrinx

I am very concerned I have a Syrinx. I have always had this god awful pain... Neuro pain that is at the highest level as far as compared to most. However, I have lately noticed it has gotten even worse f that is possible. It also, seems to be numbing my hands a little and hurting at my spine area. his is new? What do I look for if I suspect a Sryinx? NO one seems to have a clear symptom check list? What happens if you do have one? Does it go away? Do you loose function, Does your pain level return to normal.... need all the answers if possible. Thanks,Guys. David?? How are you? David.. what do you think about a guy in my pain level going on something more potent that Morphine or OXY?? What else is there? Thanks, Mike

[David Berg]

I'm afraid I'm not the best one to answer medical questions, but I know sometimes an MRI is used to detect a syrinx and that some folks have had them treated with a shunt.

As for pain, what other meds are you already on? Narcotics are often not effective for neuropathic pain and you may have to try another approach.

[in8]

Im on dilantin, for seizures, and have never noticed it help with neuro pain.

[tcb6569]

I am very concerned I have a Syrinx. I have always had this god awful pain... Neuro pain that is at the highest level as far as compared to most. However, I have lately noticed it has gotten even worse f that is possible. It also, seems to be numbing my hands a little and hurting at my spine area. his is new? What do I look for if I suspect a Sryinx? NO one seems to have a clear symptom check list? What happens if you do have one? Does it go away? Do you loose function, Does your pain level return to normal.... need all the answers if possible. Thanks,Guys. David?? How are you? David.. what do you think about a guy in my pain level going on something more potent that Morphine or OXY?? What else is there? Thanks, Mike

I had surgery to remove rods, wires that were placed 21 yrs. ago. Also had to have a shunt placed to drain a syrinx that was about the size of a large cigar. Before the surgery I was living in pure hell. My injury level is t-5, t-6 and I was losing sensation, strength--my hands felt like they were asleep, swollen...I even started posturing. My back pain was horrible. I had gotten to the point that I couldn't sit up for over a couple of hours and then had to have help with all transfers. My back pain was so bad that I couldn't stand being in my own skin. Bowel programs became nightmares. During I was/still am sweating profusley, nauseated, rapid heart beat...


I kept telling my pain med Dr. that I was having horrible back pain and all he did was increase the meds. Which will NOT help. I actually had to go on the net to find my symptoms and ask my dr. for an MRI. The only way a syrinx can be detected. If you have hardware that can block the full view of the syrinx. Demand an MRI.

There's not a clear list to check off to tell if you have a syrinx. Like me the closest you can get is check your symptoms against those of a syrinx then talk to your dr. I you let it go it will get worse. I was going from being completely independent to completely dependent. The syrinx slowly takes away what you have and can go even higher. Upping pain meds won't help. Surgery is the only solution. Find the best neuro doc you can and go from there. And don't let them tell you that it's all in your head or that you just can't feel because you're paralyzed. (happened to me)

Make sure you have some one who will be there for you after the surgery that you can depend on. Totally. It's a rough surgery and recoup time is not fun. Actually it's frustrating and you can't tell what your body is going to do once the syrnix is draining. Be prepared and make sure that whomever is helping you understands that too.

Good luck. I hope and pray that you don't have a syrnix but if you do I hope that in the end you will be better than you are now.

tcb