spasms.

[rybread]

why are they so bad one day, that if i move my chair, they pull me over the side, and the next day they are gone? it seems to be gttin worse. i take baclofen, sometimes double dosage, but it doesnt seem to matter!

[SCI-Nurse]

rybread - I don't have an answer to the variability of your patterns of spasticity but wonder if you are on a good stretching and range of motion program. For some of my patients with strong spasticity, a good session of stretching seemed to help decrease the intensity of the spasms. Generally, if you can do these at least twice a day, you may find some relief.

Have you been checked over thoroughly to know that you do not have any underlying problems such as kidney stones or gallstones? I mention these two conditions as it is not uncommon to see them in persons with SCI and the pain that they create is episodic...i.e. it comes and goes without prediction. The presence of spasms, if they are more intense or frequent than usual can be a signal that there is/are problem(s) somewhere in your system. CRF

[rybread]

i'm only 13mo post. does coming out of spinal shock make them worse? i stretch every mornintg. skin, bowel and bladder are ok. no blood anyware. i'm scared of them now. cant do anything w/out getting bad spasms. really need help. they are running my life

[Ulsio]

I find my spasms get wicked nasty when I get gas. http://sci.rutgers.edu/forum/images/smilies/eek.gif
They can also wind up pretty good when I try to bend over to empty my legbag if it is a wee bit full.
Barry

Fish#3 - Hey, look. Howard's being eaten

[SCI-Nurse]

Increased tone and spasms, esp. if they occur suddenly, can often be a "warning" sign that something is wrong. Like AD, the problem is that this is a non-specific symptom. It tells you to start looking for possible causes, but not what might be specifically wrong. Sudden increases in spasticity can be caused by problems such as UTI, impaction or constipation, a pressure ulcer, a gall bladder attack, incorrect positioning, fractures, and even stress and fatigue.

Rybread, have you tried any other medications for your spasticity? Baclofen should be taken on a regular basis, not as needed. You must keep up a blood level for it to be effective. There are several good medications and working with a SCI physician who is knowledgable about spasticity management should be able in most cases to get the spasticity into a managable range. If you have unexplained sudden increases you should also see your physician for a complete check up. Keep in mind that standing and sleeping on your stomach are also two important ways that you can decrease your spasticity, and daily ROM exercises are also critical.

Probably the most common "last resort" measure for spasticity management is an intrathecal pump, which usually uses baclofen, but can be used for other medications as well. Anyone with intractable spasticity without any discoverable cause should consider this option. (KLD)

[rybread]

i just started on zantaflex, but it only works for a couple of hours. it also makes me sleepy. horrible side effect when i work at6 home. i'm tryn to0 set u8p chec out. maybe full body mri. had gall bladder test 10 mo ago for nausia. checked out ok. i am active in manual chair. always doing stuff. adema in legs much bettr since i tgot chair. i will let you know test results. these need to get better. quad rugby season coming upn and i cant play with spasms like this.

[rybread]

doc says it might be galstones. goin in for5 ultrasound on ngall bladder. does that sound right?

[jjs]

My husband had severe spasms that continually got worse as the length of his injury time passed. We tried everything the doctors told us to. As far a I understand, the spasms can get worse as time goes on. That is what was happening with my husband. He was on three different meds and was on the highest dose of all of them. It started to seem like the meds weren't even working anymore. The spasms were running both of our lives because we were afraid to go certain places and do certain things because we knew that they would start throwing him around. The spasms severely limited his independance because they would throw him about when he tried to do things. After a year and a half of trying the stretching for two hours or more a day, the meds and side effects to the meds, and the constant fighting with the spasms, we finally decided we had to have the baclofen pump inserted. Of coarse, before we did, we made sure he had tests to rule out any other possible reasons for the spasms. The pump was inserted in October of 2000. After months of playing with the med levels, we are finally at a level where the spasms are manageable. He still has them, but they aren't as severe as before. Let me tell you, we are so accustomed to how they are now, that when he gets a UTI and the spasms start kicking up again, we aren't sure how we managed for 1 1/2 years like that. Anyway, I hope I have given you some things to think about.

[SCI-Nurse]

The more active you are can make a difference. Exercise and activity will help to reduce spasticity, for example, a day of bedrest would be worse than getting up in the chair. Often times exercise, in the form of stretching, before getting out of bed in the morning can help reduce the spasticity..................SAH

[katia]

Hi, i have spasms as well and under no drugs at all.Till now excercicing seems to decrease them and i was reading about stretching!
Can Anybody tell me how to do it?

[SCI-Nurse]

Stretching isn't anydifferent with SCI as it was able bodied you simply do it in bed or in the chair. Some SCI individuals need help from another. Straighten legs and manually point your toes to your nose; bend forward and try to touch nose to knees (carefully, no bouncing) I have seen folks use a trapeze over their bed to maneuver in bed............SAH

[rybread]

well, it is almost official that I have gall stones. How can that happen to me at 24. I've only been hurt for thirteen months and I am the only person I have heard of to get gall stones at such a young age . My appetite has decreased severely and for the first time today, I actually threw up for the first time in a year. All I did was eat some grapes. I have heard that gall stones are very painful. How, I am not dysreflexic at all. I do seem to have another bladder infection also. The only thing that seems to help for spasms right now is percocet. The side effects of the drug are too hard for me to take every day. I really hope that removing my gall stones will help with my spasms. I will keep you posted.

[Scorpion]

rybread, gallstones can be genetic, I believe, more common with women if I'm not mistaken. Anyway, my Mom had gallstones around your age but her sister didn't get them till she was about 62. I don't know that the causes are fully understood.

~Rus

[SCI-Nurse]

Although it it not possible to say with certainty who will get gall stones, the generally accepted risk factors are heridety, being female,being overweight (eating excessive calories), or experiencing a rapid weight loss. Even though it is commonly stated, no association has been demonstrated through studies that shows that types of food (e.g. fatty foods) cause a higher incidence of gallstones. Moderate amounts (i.e. 1 oz of alcohol/day) can actually help prevent the formation of gallstones (unless for other medical reasons alcohol should not be taken).

Treatment options include doing nothing, surgery (commonly done via laparoscopy), and dissolving them (via chemicals or lithotripsy). Many factors need to be considered when selecting which treatment option is best. Age, other medical problems, and your willingness to live with occasional attacks all need to be considered, and can best be done by discussing options with your clinician. (jah)

[Quadman Jr]

rybread

Sounds like you may be sitting on your balls.

I use to suffer simular symptoms. Having my caregiver clear them after getting into my chair solved the problem. Your problem could be something this simple.

[rybread]

I had my gallbladder removed last Monday and I am still having severe spasms. I understand that their is some post surgical pain, but would that hurt as bad as the gallbladder being bad? My spasms have gone down a little bit but not as much as I have expected. Does it take time for my spinal cord to calm down after being agitated for so long? I do also has a small sore on the bottom of my foot caused by my spasms rubbing my feet inside my shoes, but it is not very severe. The only thing that gets rid of my spasms still is percocet which leads me to believe that pain is causing my spasms still. I really need to get rid of the spasms. Please let me know what you think.

[SCI-Nurse]

Rybread, you could still being having the effects of your surgery. Did you have a traditionally gallbladder removal or laprascopic technique? The latter causes more prolonged pain post-op. The ulcer on your foot can be adding to this problem as well. Be sure you do not have a fever, and that there is no inflammation around the incision...if there is either, call your surgeon right away. Otherwise, do let him/her know that you are still having this much pain and see if they want to change your pain management at all.

(KLD)

[rybread]

I had my surgery laproscopically and I was expecting may be a month of soreness in that region. It's now been six weeks and my spasms are still pretty severe. But now to top that off , when my legs are laying to the left and my body is flat, I get severe burning pains below my left knee to the point where I am biting my knuckles from the pain. That started around three weeks ago and Saturday night, the right side of my head gets really hot and starts to sweat. I think it may be the whole right side of my body, but I have no way to prove it. The sores on my feet are gone, but of course I had to get an ingrown toenail but that's pretty much under control. My spasms are still very severe in bed but once I get in my chair, I get about a four-hour break before they become bad again and get worst through the night. I just had an MRI done on my lower spinal cord and my cervical spinal cord and I go in tomorrow to find out the results. I'm really at a loss. There's not a book I can read where I can find anything on the kind of symptoms of having. Other than being able to feel the muscles and my trunk flex when I get spasms, I can't feel anything below right above my nipples. I do use a manual wheelchair because I am more comfortable in it, and every time I seemed like I'm getting strong enough to do stuff, something happens and it weakens me up to the point of weakness around two months before something happens. Everyone can tell how frustrated I am and I think I kind of take it out on some people which I don't wanna do. I plan on taking 4 AP soon and hope that it will help with my spasms and maybe gave me the feeling I need to find out what's wrong with my body. SOMEBODY PLEASE HELP ME! I'm going crazy and taking everyone with me.

[tikit2ride]

I am 26 months post,C7 and suffer from some of the things you have mentioned. I don't sleep well cause if I lie on my back my legs jump up after a while and like you say I sweat down the left of my face (start of AD). When I'm in my chair I spasm over the back and side (not fallen out - YET!). If I sit for a long period of time when I move ALL of my body spasms. I'm not confident pushing, transfering even sitting. I'm on Bacolfen but I think I've become immune to it. I'm going to have a Baclofen Pump as I can't goon like this.
Sorry not to offer any other suggestions but at least you know you're not the only one!

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

[SCI-Nurse]

tikit2ride: Thanks for sharing with us. Have you and your doctor ruled out all irritating sources that could be causing your increase in spasms? When someone has been on a certain dose for a long time with fairly good relief this needs to be looked at closely first. If there are no irritating sources to trigger your spasms then you should discuss with your md about drug tolerance. You might want to consider an increase in dosage, spread it out every 6 hours, or add another antispasmodic if you can tolerate it without side effects. Of course your first line of action should be stretching ROM exercises. Then after all of the above move on to considering the baclofen pump. The nice thing about the pump procedure is that you will have a test dose injection first to see what spasm relief you get. Of course, the ultimate decision for your spasticity control lies with you and your doctor. Good luck and thanks for sharing. PLG

[Free]

This probably only applies if you have a neurogenic bladder. About 4-5 mths. ago I (T11 incomplete) posted to Splinter on Spinewire about severe spasticity that was interfering with my ADL's and sleep. This had become increasingly worse over a period of 3-4 years. The doc determined it was due to excessive bladder pressure; something like 4X what it should be. When no medications helped significantly, I requested pressure mapping for seating and positioning to see if I could reduce the pressure from outside. I got a new w/c with an adustable back to improve my posture and a Deep Contour Jay cushion. The improvement was obvious from day one (two mths. ago). Without exageration, severe, uncomfortable, embarrassing spasticity has been reduced by 99%. It's worth a try.

[rybread]

actually, I use a folie at night so I'm pretty sure that my bladder pressure isn't the problem. As far as tests go for looking for an irritant, I checked my skin thoroughly everyday, I've had a recent MRI of my lumbar and cervical area, I had x-rays of my kidneys and bladder for stones, I've had blood work done multiple times, I wear nothing constricting, I do complete range of motion exercises everyday, I do weight shifts constantly through the day, and I pay very close attention to my bowel and bladder programs. I'm trying really hard to be able to wean off my drugs so I'm not really willing to add to it. And the way that my spasms came in suddenly still leads me to believe that there is something causing pain where I can't feel it. I guess it's possible I could still have some post surgical pains from getting my gallbladder taken out, but that seems like it was so long ago or maybe I'm just hypersensitive from it being store for so long. I am going to try 4 AP so maybe that will give me some relief from my spasms and possibly the ability to feel what's causing them.my doctors are still pretty stumped also, so we will see what happens

[rybread]

OK, here's the latest. My spasms are still pretty bad even though I had my gallbladder removed. For the past month and a half, I've been crapping my pants almost every day. when my left leg it stretched out, the right side of my face starts to sweat. 4AP help of my spasms some but the side effects may be too harsh for me. could my bowel incontinence be a sign of what's causing my spasms? A baclofen pump is the last resort. I'm starting to get into quad rugby and most of them don't take anything for their spasms and have told me to get rid of all my medications . I really confused because Percocets is still the only thing that helps. Why would stretching my left leg cause the right side of my face to sweat? I really need help and my doctors are kinda stumped to. The spasms are ruining my daily activities and my ongoing therapy. PLEASE HELP!!! http://sci.rutgers.edu/forum/images/smilies/mad.gif

[SCI-Nurse]

rybread: Are you being followed by a rehabilitation specialist in spasticity control? I would recommend against weaning off your antispasmodic drugs without discussing it with your physician first. Not all SCI persons have to deal with spasticity so severe that it interferes with their daily activities. No two SCI persons are alike and you need to exercise caution in taking advice from others with the same level of injury. Some indeed are able to get off their medications safely without causing undue risk or complications. Please talk with your md about what to do next. Seeing a specialist who works with spasticity may be the first step. There is something that is irritating you below the level of your injury that is triggering an increase. It shows itself by stimualting the extensor muscles in your one leg involuntarily. All sources of irritant must be ruled out first before you start weaning off your antispasmodics. Many folks have had great success with the baclofen pump and have gone on to participate in many activities including sports and recreation. In fact, it allowed them to do those things once again. Please follow up with your physician as soon as possible about what you are experiencing. You may also want to check with Medtronic Inc at (800) 328-0810 about further questions you might have about the baclofen pump therapy program or the name of a physician who specializes in this in your area. PLG

[marmalady]

rybread,

I agree with SCI-Nurse that you consider the Baclofen pump; my son has had one since July and I can't sing its praises enough! There are other threads on different forums about the pump - do a search for lots of info. If you do consider one, please, please be sure of the neurosurgeon who will do it, and that you have excellent followup care with a home health nursing service who has 24 hour call. There are problems that can arise, and you need to have the assurance that adequate backup will be there for you if you need it.

If you have any questions about it, please feel free to email or post. Good luck.

[SCI-Nurse]

Marmalady -- I couldn't agree with you more. That is why having excellent follow-up with a specialist in spasticity treatment is so important. Being able to triage a problem call with a patient over the phone helps if you understand what spasticity is and how the baclofen pump works. I have found this over and over in my practice. PLG

[Sue Pendleton]

Ry...two things about that incontinence stuff. First, 4-AP normally makes bowel programs easier. You may be taking way too much for you. I'd slowly back off a few milligrams a day and see if that helps. The other is, have you been on antibiotics since your surgery? Do you run a low grade fever? I'd also get a basic blood count test done. Some people can get the royal, well, sh*ts, from taking antibiotics and that can last a long time afterwards. The other thing that can cause major bowel problems is a blockage way up high in your intestines. That can also cause major spasms as everything has to bypass that area and it puts pressure on your inner organs. A simple KUB xray can tell if you have one of those. If so the remedy should be fairly easy.

[rybread]

Sue, I don't have any fevers, as a matter of fact my body temperature is rather low. I just recently started on 4 AP and I've had the incontinence problem for over a month now but it was still a few weeks after my surgery for my gallbladder and I don't take any antibiotics. I have Mayo health insurance and they have a specialist in just about everything and I'm lucky enough to always see that same person. My rehab doctor is very good and we have checked my blood several times I can't find anything wrong with it. He has been one of the ones to go along with me tapering off my drugs. He has gone along with everything that I've asked. I have tapered down on my four AP just because of the other side effects. But like I said I just started that stuff. We have looked through my whole entire body and can't find anything. I'm surprised I don't glow and the dark after all the x-rays, MRIs, and cat scans that I've had. For the past three days my spasms have doubled an intensity and I consider myself lucky to have stayed my chair all-day and haven't been knocked out by my spasms. This morning actually felt like I had a headache from disreflexia. I've been there before so I know what it is and how it feels. It's pretty ridiculous when I can't even move around my room without having several spasms. I am strongly considering getting the pump, but I just don't know. It might cover up the spasms being caused by pain but what's causing the pain. GCould the fact that my spasms are hitting so hard be hurting me and making them worse on their own? I just don't know and frankly, I'M GETTING TIRED OF IT!!! http://sci.rutgers.edu/forum/images/smilies/mad.gif

[rybread]

last week I called my doctor and told him that I was completely tired of my spasms and that I wanted to get a Baclofen pump. He agreed and said that I have one more test to do. He scheduled a bone scan right away so I got it inside a week. A hotspot ended up showing up in my right heel so right after the bone scan we took x-rays of my right foot. In the middle of my heel bone from a side view, there was a very low density spot in. Right away I was scheduled for an MRI of my right foot with contrast. The MRI showed a discrepancy all away around that discrepancy in my x-ray. The doctor said that it might be osteomyelitis. Monday I have a surgery scheduled to do a biopsy on my heel bone. From what I hear, osteomyelitis is very painful and could be a cause of my spasms. I won't get their culture results from the biopsy until at least Wednesday. If a test out to be nothing, I will be getting the Baclofen pump right away. It's kind of nice to be on the Mayo health plan and live so close to the Mayo Clinic, but if a doctor sees something wrong, he's get your coming back to the clinical all week. At least I don't have to wait for this kind of stuff. I just wish I could put in the Baclofen pump until we cure exactly what is hurting me. My spasms are still getting worse to the point where my legs are straightening and my feet are coming out of the footrests. Can someone please explain the difference to me of flexor and extension spasms. I'm really confused and very desperate to get rid of these spasms and at this point, I don't really care what I have to do to get rid of them. I'm at a breaking point where if I don't get rid of the spasms real soon, I'M GOING TO ROLL MY CHAIR INTO TRAFFIC!. http://sci.rutgers.edu/forum/images/smilies/mad.gif http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/mad.gif

[SCI-Nurse]

I'm sorry you're having such a rough go of it. Your spasms sound painful and distressing. There's no big difference between flexor and extensor spasms--it just describes whether your spasms fold you up (flexor) or straighten you out (extensor). Extensor spasms are a little more dangerous in that they make it hard for you to stay in your chair. I've never encountered osteomyelitis alone causing spasms, but it's a problem that needs attention if its present. Have you had a pressure sore on your heel? Do you have any pressure sores anywhere? They can worsens spasticity. A bladder infection or being constipated can increase spasms as well. Abdominal illness (like gall stones) can cause spasms and since you've had surgery recently, it might be worth your doctor exploring if everything is OK in your belly. The fact that you don't have a temperature is a good sign though.

In terms of the baclofen pump, I have every hope that that will help you quite a lot. Additionally, you won't need to take as many medicines for your spasms and will able to feel more alert and awake as a result.

Please hang in there! You sound like you have access to good medical care and your docs should be able to get these spasms under control before much longer. Let the people who love you support you in the meantime.

Hope this helps.
(RAB)