8 replies to this topic

[Julian]

My girlfriend suffers with really bad spasms. It is making life really uncomfortable for us both and we have been exploring ways to treat/ manage this condition.

My problem is I really don't like the idea of the baclofen pump system as a long term solution. I feel that it is invasive, and potentially dangerous. From what I have read I have seen both the good and the bad sides and quite frankly feel that this type of solution is fraught with danger and massive risk to her long term health.

As she is not likely to regain any kind of function in her lifetime, I feel that spinal transection surgery would be the best and least risky of the surgeries on offer. Interested to hear any comments.

[wiggy]

I too suffer from very acute spacticity and spasms. to the point where if we are driving over manhole covers that my back tries to bend itself where I had the fusion surgery, and can go into a full body spasm just sitting at my desk working. we are looking at the pump as a way to take care of this problem. i also feel a little weird being the "bionic man", but I just read an article about a kid getting the first truly robotic heart. Personally I think technology has come a long way in regards to having "robotics" in the body. It has been a long road for my wife to hoe trying to get me to accept the idea of the pump, because I had also heard horror stories about it. but, it seems the best way to take care of my problems and still have the opportunity for my body to heal.

I would never, ever chose to actually sever my spinal column. IMHO that is way more invasive then having a pump in my body. However, I still have nerves that are firing off at random and am starting to feel more and more through my bum and between my legs.

One last thing: You said she is your girlfriend. I would say to be very careful in helping her make this decision. If your relationship does not work out full time, she may regret having her spine severed because of someone else. Give her all the information you can, but be weary of having too strong of an opinion on this for her.

again, just stating my opinion.

Edited by wiggy, 05 October 2010 - 08:58 PM.

[The Black Sheep]

Has she tried Baclofen as an oral medication, and has it had any effect? I was on Baclofen for about 3 years after my injury and disappointed with it's "results". Other people swear it's their only relief. This was 9 years ago for me and I stopped taking it for about 5 years after that. About 3 years ago a neuro surgeon told me to try it again. I was up to 120 mg a day and went through some whicked mood swings and depression, along with the ever-lasting tired-ness. I couldn't sleep it off. My legs began to lose muscle tone and I gained weight. After about a year of this, I again went off of it. There are a lot of side effects that some people experience while on the drug, and I would definitely try the oral medication first, if it's an option. If she tolerates it well, maybe a pump would help.

I also agree with Wiggy on this, too. Medical technology has come a long way, and although a pump is invasive, there are millions living with some sort of medicine pump. I have a couple friends with diabetic pumps who function well with something similar.

Severing the spinal cord is a very, very tough and long-term decision. I'm an incomplete, so I can't judge someone else's choice, but even if there's that 1% possibility to ever recover, even if it's only 1%... I would hold onto it. Once the cord is severed, there's a much lesser chance of that, and you can't go back. Just my opinion, but that's with my own body.

[Snakeye]

Go for the pump..Actually, if I had a choice between having my cord medically severed and spending my days standing buck naked in Times Square wearing a war bonnett made of pink flamingo feathers I'd choose the feather therepy any day...

Edited by Snakeye, 09 October 2010 - 01:56 AM.

[mellowgator]

i am also a c 6 incomplete injury. i also have spasms and i would never sever my spinal cord. i have feeling everywhere and am even able to experience orgasim. after being injured for 7 years i had to go off my valium and found that i could move my toes. there are many ways to control spasms besides baclofen. i found baclofen put me out like a light and i wasn't able to funcion on it so i use valium and pot. there is also botox and standing in a frame as well as rom.

howd do you know she won't regain function? as an incomplete injury i have abilities more like a para than a quad. my hands are almost normal and i have tricepts and bicepts and lots of other function below my injury level due to the fact that my cord is intact.

i think severing the cord is barbaric and she could lose a lot of function below her injury level. are you willing to take the risk that her hands would become total quad hands and that she may have to resort to being in a power chair just to rid her of spasms. this is crazy. i strongly urge you to look at other means to control her spasms. once her cord is cut there is a 0 chance she will ever walk again and she will lose her ability to feel. this is something i wouldn't consider in a million years. having my cord in tact is a blessing since i have so much more function than if i were a complete injury which is what you are considering.

i can't believe a dr would actually do this. what a horrible idea. one thing that people don't realize is that muscle relaxers actually can mask movement. are you willing to take the chance that she has return that will never be realized if her cord is severed.

this is the nuts. i hope she doesn't listen to your helpful suggestion because it's irreversable and medicine isn't. what are you thinking? also complete injuries who already have a severed cord often have spasms as well.

mellwogator

Edited by mellowgator, 09 October 2010 - 04:33 AM.

[Julian]

 mellowgator, on 09 October 2010 - 03:37 AM, said:

i am also a c 6 incomplete injury. i also have spasms and i would never sever my spinal cord. i have feeling everywhere and am even able to experience orgasim. after being injured for 7 years i had to go off my valium and found that i could move my toes. there are many ways to control spasms besides baclofen. i found baclofen put me out like a light and i wasn't able to funcion on it so i use valium and pot. there is also botox and standing in a frame as well as rom.

howd do you know she won't regain function? as an incomplete injury i have abilities more like a para than a quad. my hands are almost normal and i have tricepts and bicepts and lots of other function below my injury level due to the fact that my cord is intact.

i think severing the cord is barbaric and she could lose a lot of function below her injury level. are you willing to take the risk that her hands would become total quad hands and that she may have to resort to being in a power chair just to rid her of spasms. this is crazy. i strongly urge you to look at other means to control her spasms. once her cord is cut there is a 0 chance she will ever walk again and she will lose her ability to feel. this is something i wouldn't consider in a million years. having my cord in tact is a blessing since i have so much more function than if i were a complete injury which is what you are considering.

i can't believe a dr would actually do this. what a horrible idea. one thing that people don't realize is that muscle relaxers actually can mask movement. are you willing to take the chance that she has return that will never be realized if her cord is severed.

this is the nuts. i hope she doesn't listen to your helpful suggestion because it's irreversable and medicine isn't. what are you thinking? also complete injuries who already have a severed cord often have spasms as well.

mellwogator

Thank you for your opinion on this difficult subject. However, I feel that I should clarify some of the key facts before continuing; 1) My girlfriend's injury is complete. She has no sensation or motor below her injury and her hands are also as you referred to "quad" hands. 2) she has tried oral baclofen with no effect (apart from losing what little function she had and ending up drooling on herself which was not pleasant); 3)The reality of the matter is that she is not going to regain the function and the spasms are ruining our lives; 4) she has also tried every single other drug to try to control the spasms, each for a long period of time and have completely run out of options.

Oh, and one other thing, I am not in any way making this decision for her, she is quite capable of weighing up the facts and making up her own mind.
We are quite happy with the knowledge that she will have zero chance of walking again. We have moved on from this idea a long time ago and are looking to make life easier without the spasms, which are affecting all parts of our life together.

[mellowgator]

dear julian,

i tried to find out info on spinal transection surgery by googling it. i wasn't successful so i just listened to the other posters who said it was severing her spinal cord. how can this procedure help her if her cord in already severed?

how long has she been injured? like i said after 7 years i could move my toes after going off valium. has your gf tried the pump? i did read that when patients get used to the baclofen that morphine worked.t

i suppose i would of been able to give you a better answer if i had know that your girlfriend was already complete injury.

sorry about my lack of knowledge. i was just giving you my thoughts as an imcomplete injuy.

i think the botox is a good thing to try. if you have already tried botox and the pump. i still would like to know about this procedure.

thanks,

mellowgator

[dm999]

I am a complete c5/6. In my early years had a lot of spasm and was on 70mg baclofin orally (no pumps back then). That dose seemed to keep them at a manageable level without wiping me out. Twenty years later started to question how much I needed it. Started reducing and the drop to 50mg did increase spasms a bit, but now am off it altogether with manageable spasm. The severity of spasm can be different for everybody, but the root cause is irritation below the level of injury. Usually Bladder, Bowel or Butt! Boclofin pump, especially for incomplete should be a last resort! There is a lot of money in it for the drug company and they are influencing your medical professionals. – Valium is cheap and for short term problems often effective.

[BS59]

MY CORD IS COMPLETLY SEVERED AND MY SPASMS ARE STILL TERRIBLE.