30 replies to this topic

[Smileyblue]

I have really bad spasms (spasticity), enough to constantly crack my back, knees, hips, and ankles, like someone would crack their knuckles.. I suddenly find myself envying those of us that are so "lucky" as to not have them added to their list of SCI side effects more than I ever did before.. I don't know what I did or ate or drank, but by some miracle they went away for a good half an hour!

In that half hour I had a glimpse of something I can only dream of! My pain subsided by about 80%, and my legs were about a tenth of their weight! I didn't have to fight my own body to move over onto the bed and turn over.. It was so easy to transfer I can't even explain it..

Sadly they're back as quickly as they disappeared.. I wish I knew what caused them to disappear, then maybe I could do it more often.. Anyway, just thought I'd share my glee, even though short-lived.. It's a moment I will savour for a very long time!

[orangepop]

Were you smoking MJ by chance? That'll make your spasms go away like magic.

[wiggy]

orangepop, on 08 October 2010 - 01:47 PM, said:

Were you smoking MJ by chance? That'll make your spasms go away like magic.

Agreed!!! many times over. I actually get a few hours relief from just a puff or two of shwag. Too bad I don't live in California...

[S&W Winger]

Smileyblue, on 07 October 2010 - 03:03 PM, said:

I have really bad spasms (spasticity), enough to constantly crack my back, knees, hips, and ankles, like someone would crack their knuckles.. I suddenly find myself envying those of us that are so "lucky" as to not have them added to their list of SCI side effects more than I ever did before.. I don't know what I did or ate or drank, but by some miracle they went away for a good half an hour!

In that half hour I had a glimpse of something I can only dream of! My pain subsided by about 80%, and my legs were about a tenth of their weight! I didn't have to fight my own body to move over onto the bed and turn over.. It was so easy to transfer I can't even explain it..

Sadly they're back as quickly as they disappeared.. I wish I knew what caused them to disappear, then maybe I could do it more often.. Anyway, just thought I'd share my glee, even though short-lived.. It's a moment I will savour for a very long time!

And then you woke up?

[Smileyblue]

Lol.. nope, no MJ.. And no snoozing either.. Just pure peace and bliss! Now if only I could figure out how to recreate it..

[Tetracyclone]

Smilyblue=

I had a comparable experience about a week ago. I was very tired and when I went to bed I felt that relaxed exhaustion I used to feel as an AB. No hypertonia, no spasms. It was so luxurious and surprising. The next morning i was back to "normal".

[S&W Winger]

Please find the magic elixir...I am laying here, my entire body is a stiff fat surfboard...the bladder spasms from my UTI cause the overall spasms, my feet are taking turns flipping up in the air, and my legs and lower body are fighting for the right to make the most inaudible spazzing sounds...I could sure use a break from this even for a half hour...or could someone please stop by with some of those leafy greens...

[vickiw91]

My husband has major spasms throughout his whole body. It makes his chest tighten so bad he cant breathe,I have to bag him just about everytime. He has tried every med except the pump and doesnt want that. He hasn't tried pot,only because he is still being hospitalized. Does this really work? I would like to give him some relief.

[spot]

I live in California, but I hate the stuff. Too bad.

If anyone finds something else that will make this problem go away, I would be most grateful. Spasticity is the worst part of SCI! It's raining here, so I am having extra trouble breathing, moving - you all know the routine. I hate this!

[vickiw91]

vickiw91, on 07 November 2010 - 04:59 PM, said:

My husband has major spasms throughout his whole body. It makes his chest tighten so bad he cant breathe,I have to bag him just about everytime. He has tried every med except the pump and doesnt want that. He hasn't tried pot,only because he is still being hospitalized. Does this really work? I would like to give him some relief.

My husband was perscribed marinol yesterday, after the first 2 doses his spasms were smaller and for the first 4 hrs were completly gone. I cant believe the difference. The doctor thought I was crazy, until he looked it up. What and amazing difference Thank God for THC.

[Smileyblue]

I'm too worried about being "spaced out" or "high" to try any of the THC products.. I need my wits about me, as I live alone (most of the time) and cant risk making fatal errors like leaving the stove on, or falling asleep with the house wide open..

The spasms are definitely the scurge of paralysis though.. Makes everything harder to do and makes everything take longer to do, not to mention the pain, discomfort, and additional risks..

I'm sure there has to be a solution for us out there somewhere.. ;-)

I'm too worried about being "spaced out" or "high" to try any of the THC products.. I need my wits about me, as I live alone (most of the time) and cant risk making fatal errors like leaving the stove on, or falling asleep with the house standing wide open..

The spasms are definitely the scurge of paralysis though.. Makes everything harder to do and makes everything take longer to do, not to mention the pain, discomfort, and additional risks..

I'm sure there has to be a solution for us out there somewhere.. ;-)

[isobar]

Smileyblue, on 10 November 2010 - 08:29 PM, said:

I'm too worried about being "spaced out" or "high" to try any of the THC products.. I need my wits about me, as I live alone (most of the time) and cant risk making fatal errors like leaving the stove on, or falling asleep with the house wide open..

The spasms are definitely the scurge of paralysis though.. Makes everything harder to do and makes everything take longer to do, not to mention the pain, discomfort, and additional risks..

I'm sure there has to be a solution for us out there somewhere.. ;-)

I'm too worried about being "spaced out" or "high" to try any of the THC products.. I need my wits about me, as I live alone (most of the time) and cant risk making fatal errors like leaving the stove on, or falling asleep with the house standing wide open..

The spasms are definitely the scurge of paralysis though.. Makes everything harder to do and makes everything take longer to do, not to mention the pain, discomfort, and additional risks..

I'm sure there has to be a solution for us out there somewhere.. ;-)

Hi,


Have you tried pain patches such as Salonpas....they can be applied to the skin an hour after showering and work well for me. Also a compression sleeve can be worn on your thigh if this is an area of pain. Try applying a ice pack when spasms first starts it kills the pain then follow with heat in possible. Herbal heat and Karma Sutra Healing Blends are topical rubs that help quell spasms. A massager with heat can reduce spasms and water intake improve circulation. Country Life makes a supplement with magnesium, potassium, calcium and phosphorous that help nervous system function. Just trying to be helpful please try some of these things if you haven't or didn't know about them..... none require you to be buzzed.

Edited by isobar, 11 November 2010 - 07:25 AM.

[JuanC]

vickiw91, on 07 November 2010 - 04:59 PM, said:

My husband has major spasms throughout his whole body. It makes his chest tighten so bad he cant breathe,I have to bag him just about everytime. He has tried every med except the pump and doesnt want that. He hasn't tried pot,only because he is still being hospitalized. Does this really work? I would like to give him some relief.

a lot of people swear by weed. only problem is it doesn't last forever, and it does have a few side effects lol.... let him try it... why not hey

[psquare]

I was just prescribed Tegretol, 600 mg a day, taken three times a day. I feel as high as a kite. Has anyone else been prescribed this drug and was it effective?

[Adil]

I have tried almost everything for spasms, including meds, surgeries, balcofen pump, electrical stim, alcohol and marijuana.

The relief from meds doesn’t last long. A few weeks and I have to increase the dose. Eventually the dosage is so high that the side effects from the meds are not acceptable, I’m a different (miserable) person, and the spasms return anyway. In face some meds that are prescribed to reduce spasms actually increase spasms. When I told this to the prescribing doctor, he replied "impossible". Then I showed him the list of side effects, one of which is widely known - at least in our community - to increase spasms. Then he changed his mind with a one-word response, "oh". When I get this type of response from a doctor, I have to wonder why they call it a medical practice rather than a medical experiment (OK that wasn't fair, but neither was the bill).

I got years of relief from a surgery called a DREZ (dorsal root entry zone) aka partial rhizotomy. But 10 years later the spasms came back. I must say that I was a different person in this 10 year period. I felt great and was in great shape. Dating was a breeze. Girls would approach me. I excelled in my job, traveled the world, made lots of money, was on top of the world, and all of it because of the way I felt and acted from being spasm-free.

But the spasms returned. I did not want to risk another spinal cord surgery so I went for the baclofen pump. This works well. But it works too well. It relaxes my brain and bladder and I need both to pay attention. I am now reconsidering removing the pump and going for another DREZ.

Alcohol is the most reliable solution for the short-term. Add some marijuana and I am completely spasm-free for the rest of the night. I am free to work the next morning without the lingering side effects from meds. But this is only a solution for nights. What about the days when I am working and need to pay attention?

In response to the poster's question, I too have found hours of relief based on what I ate, drank or did. It is commonly known that UTIs increase spasms. I also find that GI problems increase spasms. Other stimulants like caffeine and certain drugs also increase spasms. Whatever the reason, my nerves at T-8 are hyper-sensitive to what I eat and drink. The trick for me has been to reduce stress on my bladder and bowels. This is done by eating right, emptying often, and keeping weight down. If you are carrying a big belly full of food and fluids 24-7, or just ones that aren't friendly to your body, I bet you will be more prone to spasms. You can always empty your bladder completely, but not your bowels. To keep from overloading your bowels, you MUST keep your weight down. If your belly is larger than your chest, you have a problem. Try experimenting with foods. You may find that a specific food or drink is problematic for you. Milk was a problem for me. Hot showers, exercise, stretching, and rest will make me spasms free for the short term. If you have enough time, you can schedule your day to do all these throughout the day.

There are so many ways to manage the spasms. The trick is in finding the right ways for you for the short term and the long term.

Edited by Adil, 03 January 2011 - 07:33 AM.

[Smileyblue]

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

[Adil]

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

A DREZ procedure does cut the nerves. But it does not cut them completely so it spares some tone, which is a life saver. Spasms are the worst thing about a SCI. But if you get rid of all tone then you may have the second worse problem, which is skin break down. Just a word of caution. Good luck in whatever choice you make.

[roo]

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

[Adil]

roo, on 03 January 2011 - 10:24 AM, said:

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

Roo,

I remeber when my spasms would be the type where the legs stay in place and just kind of shake (or you could say they vibrate). Is that what you are talking about? That was actually kind of a pleasure because they kept good tone and didn't really interfere. But then the nature of my spasms changed. Now the legs would no longer stay in place. They would kick and the knee would strighten. This is why I had to have the DREZ. Now I too have a baclofen pump. The thought has crossed my mind that I could treat the spasms with alternate therapies while gradually reducing the baclofen dose to zero. I am glad to hear that it did work for you.

I wonder what else may do the trick other than thermal spa pools? I know that my spasms do respond to heat. It would be great to replace the kick spasm with the skake-in-place spasm and get off the baclofen pump (it makes me too sleepy and this side effect doesn't seem to get any better over time).

[Adil]

roo, on 03 January 2011 - 10:24 AM, said:

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

Roo,

I remeber when my spasms would be the type where the legs stay in place and just kind of shake (or you could say they vibrate). Is that what you are talking about? That was actually kind of a pleasure because they kept good tone and didn't really interfere. But then the nature of my spasms changed. Now the legs would no longer stay in place. They would kick and the knee would strighten. This is why I had to have the DREZ. Now I too have a baclofen pump. The thought has crossed my mind that I could treat the spasms with alternate therapies while gradually reducing the baclofen dose to zero. I am glad to hear that it did work for you.

I wonder what else may do the trick other than thermal spa pools? I know that my spasms do respond to heat. It would be great to replace the kick spasm with the skake-in-place spasm and get off the baclofen pump (it makes me too sleepy and this side effect doesn't seem to get any better over time).

[Adil]

roo, on 03 January 2011 - 10:24 AM, said:

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

Roo,

I remeber when my spasms would be the type where the legs stay in place and just kind of shake (or you could say they vibrate). Is that what you are talking about? That was actually kind of a pleasure because they kept good tone and didn't really interfere. But then the nature of my spasms changed. Now the legs would no longer stay in place. They would kick and the knee would strighten. This is why I had to have the DREZ. Now I too have a baclofen pump. The thought has crossed my mind that I could treat the spasms with alternate therapies while gradually reducing the baclofen dose to zero. I am glad to hear that it did work for you.

I wonder what else may do the trick other than thermal spa pools? I know that my spasms do respond to heat. It would be great to replace the kick spasm with the skake-in-place spasm and get off the baclofen pump (it makes me too sleepy and this side effect doesn't seem to get any better over time).

roo, on 03 January 2011 - 10:24 AM, said:

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

Roo,

I remeber when my spasms would be the type where the legs stay in place and just kind of shake (or you could say they vibrate). Is that what you are talking about? That was actually kind of a pleasure because they kept good tone and didn't really interfere. But then the nature of my spasms changed. Now the legs would no longer stay in place. They would kick and the knee would strighten. This is why I had to have the DREZ. Now I too have a baclofen pump. The thought has crossed my mind that I could treat the spasms with alternate therapies while gradually reducing the baclofen dose to zero. I am glad to hear that it did work for you.

I wonder what else may do the trick other than thermal spa pools?

[Adil]

roo, on 03 January 2011 - 10:24 AM, said:

Smileyblue, on 03 January 2011 - 08:15 AM, said:

Thank you for your responses..

My spasms have now become so bad that I cannot even manage to sit up, or turn in bed on my own anymore.. They are overwhelming! My poor old Mummy takes care of me and I can see how even she strains to get them to do anything..

I have decided I want them to cut the nerves causing the spasms.. Its not like I'm ever going to walk again, so to me its a choice of either being paralysed with spasms totally incapacitating me, or being paralysed without having to fight my own body to do even the slightest thing.. So I've made an appointment with my Neurosurgeon for Wednesday to discuss this with him, and hopefully the surgery can follow shortly after..

Once again, thanks to everyone for great replies and suggestions.. ;-)

hi smileyblue
,,do you have thermal spa pools in your area,, why i ask is that my spasms were that bad that in 1988 i had a balcofen pump fitted {at southport hospital uk),,then in year 2000 came across these thermal spa pools and noticed that i was a lot more relaxed in spasms every time i was using these pools,,so when my pump was ready AGAIN for filling up i asked the doctor to lower the dose as my spasms where getting less and less ,when i was on such a low dose i asked for it to be removed,,{the dotor did not want to to this but as it was now time to renew the pump and have a new 1 fitted ,they agreed to remove the old 1 and see how i go without 1 in ,,the docs where saying roo in 3wks you will be asking us to putt 1 back in ,,,10 yrs later still no baclofen pump ,and my spasms also are gone still get the odd shake in the legs but can live with that ,,so if you have these pools in your area PLEASE try before having your nerves cut ,,,you may benifet also wish you where closer to me so you could try these in my area ,,best of luck and hope you feel alot better soon ,,roo

Roo,

I remeber when my spasms would be the type where the legs stay in place and just kind of shake (or you could say they vibrate). Is that what you are talking about? That was actually kind of a pleasure because they kept good tone and didn't really interfere. But then the nature of my spasms changed. Now the legs would no longer stay in place. They would kick and the knee would straighten. This is why I had to have the DREZ. Now I too have a baclofen pump. The thought has crossed my mind that I could treat the spasms with alternate therapies while gradually reducing the baclofen dose to zero. I am glad to hear that it did work for you.

I guess the trick is to get the muscle tone low enough to enable the other therapies to work. I wonder what else may do the trick other than thermal spa pools?

[Smileyblue]

No spa's around here.. I actually find heat increases my spasms.. I guess living in the South African eastern coastal area is not the best for avoiding heat, but my Airconditioning works overtime, summer and winter.. ;-)

Prior to my decision to cut the nerves, I looked into getting a baclofen pump, but my medical aid only covers the surgery with a R5000 co-payment and do not cover the hardware at all, which is around R70000! More than a bit out of my price-range!

I have just gotten off the phone with my Neurosurgeon and he confirmed the surgery is set for the 25th.. Now I just keep my fingers crossed that I'm in the 70% that the procedure works for, and keep looking forward to calm, relaxed legs.. ;-) Seems like that's only a dream at this stage (I actually start tearing when I see the youtube videos of people transferring etc so easily with their "sleepy legs".. Where it takes them like 2-5 minutes to transfer, it takes me an exhausting fight with my own body and at least 30 minutes to three quarters of an hour to do a transfer!)
I actually had a fall yesterday whilst transferring to bed, but luckily nothing got broken or damaged, it just aggravated the spasms even more.. Thank my lucky stars my son is home on holiday and a quick call to him to come scrape me up from the floor was all it took to get in bed.. ;-) Another lucky day for me..

Anyway, I'm rambling again.. I'll be sure to keep you all updated on how the surgery goes and what happens thereafter.. ;-)

[barbara9999]

good luck really hope it works out. you are so brave.

[Smileyblue]

Thanks.. ;-) I still have my fingers crossed and my hopes high that this works out well for me.. I'm counting down the days till surgery to keep me sane (I am still sane I think?)

I don't know about bravery, just at my wits end! Lol.. ;-)

[jeanne]

i sustained my injury on 10/15/08 via "surgical error." can't discuss the details in a public forum while litigation is ongoing, but as a previously active person, now confined to bedrest these past five months (more on that in a minute) i am having a hard time adjusting to a body that does what IT wants, not what I want. i've gained weight (i'd guess nearly 75 - 80 lbs) from lack of exercise; my own body repulses me.

spasms are the bane of my existence. they actually make me suicidal and are now so bad that my tendons have contracted to the point of dislocating my hip (bedrest). the femur grinds on the pelvis and makes me nauseous. i have had quite a bit of nerve regeneration and have sensation all over my lower extremities (esp my toes.) every spasm is painful, not just uncomfortable. my injury is at c5/6 level although i have managed to keep the use of both arms, the nerves itch horribly in my forearms; i have scars from scratching while sleeping which i barely manage to get more than 2 or 3 hours at a time b/c of the spasms. people tell me i spaz while sleeping too but i think i'm just so worn out, i manage to sleep thru them.

GUYS: YOU CAN SKIP THE ITALICIZED BIT IF YOU WANT...
girlie talk now...i find i am more spastic when i menstruate to the point where i want a complete hysterectomy (i'm only 45 and this could go on for another 10 years!) but then i dread what early onset menopause will do with my spasms. can any other women relate/advise?...girlie talk over.

i also suffer hypoxic episodes - blacking out from spasms b/c i can't breathe - and wonder how many brain cells i kill each time on top of the 16 drugs i take daily (29 pills a day.)

so i have to have surgery to put the hip back in. my tendons will be cut, stretched and screwed onto my heel bones and my legs will be straight-casted with a bar between my ankles to put pressure on the hip to stay in place. but before that fun begins, i have to have a baclofen pump installed - a procedure i've been fighting against since the spasms started.

i know i need this although i am totally repulsed by the idea of an implant. i have read many negative things about the medtronic pump (overdoses, underdoses, infections at the implant site, catheters becoming disconnected at the implant site and/or the intrathecal site in the spinal area - does anyone have or know about the codman pump? http://www.codmanpumps.com/ i kinda like the way it looks - smooth, various sizes - and that it's not battery-powered (one less thing to go wrong) it runs on freon so could ultimately last for years as opposed to 5-6 with the medtronic so fewer needed changes. remember - i don't want thi thing at all so to have to go every few years is not my idea of fun.

can anyone tell me about "test dosing" and what THAT entails? what happens and why? don't they just stick the thing in you after slicing you open for 5 or 6 inches and then "practice" with your needed dosage? seems to me they "practice" PRIOR to the implant so i'm confused by all i'm reading and just have to stop.

i know this is a very lengthy post and i'm rambling but sure would appreciate advice:
1. to get or not
2. medtronic vs codman
3. recovery from surgery - how long? i have sensation so i hope they at least use "twilight" anesthesia. what about pain at the site? is the lump painful?
4. what does "practice dose" mean?
5. refills - do they numb the area? put you to sleep? it seems the codman refill process takes awhile and they have to drain the old baclofen first, then inject saline, then draw that out, then slowly inject the new dose. i am so grossed out by needles being injected into me (i pass out) - this is the worst part of this pump procedure for me

HELP!

[Edinburgh Colin]

God Jeannie I feel for you, what a shit hand you have been dealt, I truly hope we all can help you in any way we can. I also hope you manage to absolutely skin the bastards alive who did this to you.

[Adil]

Edinburgh Colin, on 09 January 2011 - 07:31 PM, said:

God Jeannie I feel for you, what a shit hand you have been dealt, I truly hope we all can help you in any way we can. I also hope you manage to absolutely skin the bastards alive who did this to you.

Edited by Adil, 12 January 2011 - 09:25 AM.

[Adil]

I have a baclofen pump. No problems with the pump. But the baclofen makes my sleepy. I am opting to have the pump removed. But each person's situation is different. If life is so miserable because of spasms, then being sleepy may be worth it. It definitely reduces spasms. But it also decreases tone. You want some tone otherwise it can effect your bladder/bowels and skin. The nice thing about the pump is that they can regulate your dose much better than with pills, so its more effective.

The test dose that they use to see how you respond to the medication is injected into the spinal cord with a spinal needle. If it works then you have the surgery, stay overnight, and they release you the next day. You can be back to your activities the next day. But you will be sleepy for a few days. The pump is refilled with another needle. There is a small indent in the middle of the pump. The doctor feels where that indent is and then he pokes a needle in through your skin and into the pump. They remove the old (stale) medication and then they inject new (fresh) medication. The entire procedure takes only a few minutes. I don't feel the needle and I never see it. They do not numb me. But if necessary for you, I am sure that they would.

[dougneidermeyer]

I have only experienced spasms twice in my six years of injury, both times after a period of extreme physical excretion. I don't know why I don't have spasms, but I thank God everyday after reading the experiences of my peers on this forum. I don't take Baclofen nor any other anti-spasm medicines. I am a T11/T12 incomplete. Is it something that I might be doing or my diet that is preventing this or is it simple a function of my injury type?

Thank you (and please, I did not mean to offend or taunt anyone with this posting...you all of my sincerest sympathy)