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    Old 10-06-2006, 03:35 AM   #1
    Maggie Pie
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    control of debilitating muscle spasms

    I had a series of impacts to my body 17 years ago. I have never been free of pain and muscle spasms since that time. I have tried many things including chiropractic of various types, trigger point, stretching, message of various types, etc, however, recently nothing helps. I am exhausted and unable to live life because of pain and spasm. I would desparately like to know other options.

     
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    Old 10-06-2006, 04:16 AM   #2
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    Re: control of debilitating muscle spasms

    Have you ever actually had an MRI or any other types of testing to try and determine the cause of this?"something" is quite obviously triggering the spasm/pain cycle.any actual Dx of anything yet?marcia
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    Old 10-06-2006, 11:51 AM   #3
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    Re: control of debilitating muscle spasms

    A small dose of valium is exellent for muscle spasms the only problem is you probably will need to take it all the time.In cases like this though were your having a bad run then the valium (diazepam) might be the short term answer.Have you had it diagnosed????...Good luck....Dave

     
    Old 10-06-2006, 12:18 PM   #4
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    Re: control of debilitating muscle spasms

    Maggie-
    I know this is frustrating and exhausting for you and I am so sorry you have to deal with it. Have any of your doctors ever talked with you about Flexeril or Skelaxin?

    Flexeril isn't really such a good one to take during the daytime because if the drowsy side effects, but the Skelaxin is great because it doesn't make you drowsy or loopy. It's expensive if you don't have insurance though. My husband stopped taking the Flexeril and started the Skelaxin because he can take it during the day when his back is flaring up and can still function 100% normally.

    There are always other things like a TENS unit, alternating heat & ice and slow stretches to help ease the pain too. The TENS unit can be a useful little thing to have around because you can strap it to your pants waisteline or a belt and wear it when you go out of the house.

    Best of luck with this, and please talk with your doctor about it.

     
    Old 10-06-2006, 01:22 PM   #5
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    Re: control of debilitating muscle spasms

    Hi maggie, Patients with MS that aren't responsive to other therpaies use the pumps some of us have to deliever morphine to deliver Baclofen. I've read several times that you can't get enough Baclofen in your system orally to make a big difference on severe spascticty, but intrathecal delivery makes it about 100 times more potent. My wife has great succes from Botox in treating her neck pain which is part mechanical "disc and vertabrea" part muscular and the kicker is chiari malformation where the brain is pulled down into the base of the skull and spinal canal. Botox has been a wonder drug for her and she's reduced her pain med intake by 2/3 rds thanks to it.

    Trigger point injections and TP release, nerve blocks and basically trying anything and everything that was available allowed her to find what worked best for her. She still gets TP injections and ocipital blocks in between the botox but it can be managed. Just because one doc or 10 docs can't figure it out or don't offer botox or the needed nerve blocks, doesn't mean it can't be managed. There is a doc out there that has something to offer you haven't tried.
    Good luck Dave.

    Last edited by Shoreline; 10-06-2006 at 01:48 PM.

     
    Old 10-07-2006, 10:05 AM   #6
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    Re: control of debilitating muscle spasms

    Maggie,

    I have had debilating spasms for 2 years now.First you need to find the cause and treat it from there.Mine are caused by multiple sclerosis and the spasms have been treated effectivly by a combination of baclofen,zanaflex and quinine.Stretching lightly multiple times per day can be effective and eleviate some of the pain.

     
    Old 11-07-2006, 11:19 PM   #7
    Maggie Pie
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    Re: control of debilitating muscle spasms

    Dear Shoreline Dave: you responded to debilitating pain and muscle spasm. Please tell Maggie Pies all you can about botox Baclofen and other treatments to relief spasms relieve spasms to some extent, then I loose mm support for injured spine and have spinal pain, then spasms get worse and so it circles round and round. Can botox be placed in many areas from neck to lower back? What does the subsequent paralysis feel like. I surely would like to know more of your experiences with it. I really appreciated your response.
    Thanks. Maggie Pies


    Quote:
    Originally Posted by Shoreline
    Hi maggie, Patients with MS that aren't responsive to other therpaies use the pumps some of us have to deliever morphine to deliver Baclofen. I've read several times that you can't get enough Baclofen in your system orally to make a big difference on severe spascticty, but intrathecal delivery makes it about 100 times more potent. My wife has great succes from Botox in treating her neck pain which is part mechanical "disc and vertabrea" part muscular and the kicker is chiari malformation where the brain is pulled down into the base of the skull and spinal canal. Botox has been a wonder drug for her and she's reduced her pain med intake by 2/3 rds thanks to it.

    Trigger point injections and TP release, nerve blocks and basically trying anything and everything that was available allowed her to find what worked best for her. She still gets TP injections and ocipital blocks in between the botox but it can be managed. Just because one doc or 10 docs can't figure it out or don't offer botox or the needed nerve blocks, doesn't mean it can't be managed. There is a doc out there that has something to offer you haven't tried.
    Good luck Dave.

     
    Old 11-08-2006, 07:31 AM   #8
    feelbad
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    Re: control of debilitating muscle spasms

    Maggie,do you have an actual spinal CORD type injury?thats what i got from this last post,it can make a difference in the course of treatment and how successful it would be only becaue these 'could" be stemming from non stop motor signals that just never ever stop.this is what i have in my legs because of an SCI which causes my non stop motor nerve signals.just trying to clarify the actual nature of and extent of your injury here thats all.marcia
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-05-2006, 09:49 AM   #9
    Maggie Pie
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    Re: control of debilitating muscle spasms

    Dear Stanleyguy,

    I had one injection on one muscle in the back. If I were a cherry pie abd each cherry represented a spasm or group of spasms in upper back shoulders, neck and sub-occipital area of neck, I was injected in one "cherry" (muscle)on right side of upper back. It brought no relief, but left a little residual weakness in muscles that hold up head leading to new spasms infront of neck as they became more weight- bearing. Do you get weakness in non-injected muscles? How many injections do you get at one time. and how many 100 ml vials are used? Where are the injections placed to relieve the neck at the base of the skull, especially, as well as neck, shoulders and upper back. Are your injections done by a neurologist and does he actually enter into several hard spasms, or does he does he knock out a nerve? Could you give me an idea on how the process proceeds in your case with the botox? I really appreciate your input and will look forward to hearing more! Maggie Pie

    Last edited by Maggie Pie; 12-05-2006 at 09:53 AM.

     
    Old 12-05-2006, 11:32 PM   #10
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    Re: control of debilitating muscle spasms

    Have you tried, or considered trying, dantrolene sodium?

    It is the only muscle relaxant that works at the leval of the muscle, rather than on the CNS.

     
    Old 12-06-2006, 04:16 AM   #11
    ar58
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    Re: control of debilitating muscle spasms

    MaggiePie,

    You may like to try a couple of doses of Hypericum 30c and see if that helps. Hypericum 30c is a herbal homeopathic remedy for Spinal pains and spasms from injury to the nerves. It will be available at a local health food store.
    hope this helps

     
    Old 12-06-2006, 06:25 AM   #12
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    Re: control of debilitating muscle spasms

    Hey Magpie, Sorry it's taken so long to get back about the botox. The anesthesiologist at the PM clinic we both attend does the injections and so does one of the neurologists. They run a line across the top of her shoulders another line a little higher up and then right at the base of her skull, they also do the top of her forhead, not the frown lines and she has never had a problem with muscle weakness. Up untill the last round of injections which was about 20 points total, she has always had Type A botox. Due to recent policy changes likely because of poor reimbursement for the more exoensive version "A" bottox. Even though it has FDA aproval for cervicle dystonia and a few other aproved uses for pain, it's not aproved for low back or anywhere else other than head and neck pain. Other than a numb feeling from the local used, and the OC block done at the same time as Botox, she's has never had an unpleaseant experience with Botox. They continue to use TP injections in between the quaterly botox injections.

    I would think using botox properly is just like TP injections. Some docs have the touch and know exactly where to use it to achieve the greatest relief and other docs simply know needle placement. It really takes the doc having the touch to be effective with any type of injections. There is one doc at the clinic she flat out refuses to allow to do TP's or botox. He's a Physiatrist/neurologist. I don't think it's lack of education or lack of training, he simply doesn't have the touch for it.

    A single injection in one TP can't possibly provide enough relief or give the doc enough information to determine if you would benefit from further procedures.

    It does cause a numbing sensation for 4-8 weeks after but the shear number of injections causes some discomfort on day one and day 2. It has never effected her ability to hold her head up or had a negative impact on range of motion. Like anything, there isn't a one answer fits all, but there are plenty of procedures and interventional modalities that are worth more than one attempt by one doc. If the doc doesn't have the touch he could give you dozens of injections and not acomplish what someone that has the touch can acomplish on the first visit..

    Another aproved use is Hyper hydrosis and she's been very responsive to treatments to the side of her face where hyper hydrosis was caused by removing a saliva gland that had a small tumor, They had to clip the nerve so she has a small patch on her face that will spontaniously sweat for no reason and the botox has been exteremely efective at treating this problem. It's also used to treat people that have extremely sweaty hands but when you get into that type of use, most likely your going to have to pay for it your self. It was very confusing when they stopped ordering Botox A and they basically wanted to write a script for Myoblock and have her bring in the bottle of injectable meds. If it's not covered the myoblock alone can run from 450 -700 bucks per bottle. The way her insurancwe worked, the clinic placed the oreder for her through her medical side the same way they place an order for the meds to refill my pump.

    I'm sure you doc knows the needed diagnostic codes to cover it's use on your neck and shoulders but like any treatment, that's all it is. It's not a cure, it's just one more thing that helps.You may have a great compassionate doc, but I would never think there is a single doc that knows everything. He may be great at med managament, good at TP's and simply not have the experience with Botox that some other docs do. When she first started with botox, risk of loss of muscle control or ability to hold her head up was never even an issue or mentioned. The greater risk with botox is when they do the side of her face to treat the Hyper hydrosis. A misplaced shot or the drug infiltrating into areas they don't want can leave a patient loking like a stroke victim untill it wears off.

    Fortunately she has never had an adverse reaction from over a dozen procedures. She doesn't need to look at a calander to know when it's time to have it done again, which is a testimant to it's effectiveness. It's not that feeling returns, it's the spasm and spascticity that lets her know it's time for another round of injections.

    Most peoples' understanding of Botox is from the it's cosmetic use on tiny facial muscles, The muscles that support the head and neck are not tiny and would require huge amounts to do the type of harm someone mentioned regarding loss of ability to hold their head up.

    Another treatment option is Robaxin infusion. The do a serries of 3 infusions that take about an hour each time, over 3 weeks. Each dose is stronger than the previous and the idea is to break the cycle of spasm. This was helpful but she gave up on it once they started the botox combined with an OC block.

    For her, botox has been by far more efective than any med she's ever taken including valium. Valium is fine for short periods , but tolerance and impaired abilty to form new memories puts a cap on the amount of valium one can take and remain effective and functional over time.

    Good luck, Dave

    Last edited by Shoreline; 12-06-2006 at 06:34 AM.

     
    Old 12-08-2006, 11:48 PM   #13
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    Re: control of debilitating muscle spasms

    I agree that injecting one trigger point isn't a good measure of it's effectiveness.

    My 'cherries' are along the base of my skull where my head meets my neck, horizontally about 6 across, and then a couple more mid-neck, and a couple more in the middle of the back of my head, where the muscle attachment point is.

    When I had it done, there were about 12 points in all, and it went in just like trigger points. Unlike trigger points though, I definitely felt 'weird' for a bit longer afterwards. Usually with trigger points I can regain my composure in about 5 minutes and walk out the door. With the Botox it took me like 20-30, and I felt really strange for about 24 hours afterwards. Basically I went home and slept for a long time.

    Anyhoo, the Botox seemed to work well for 3-4 months. It basically just decreased the spasm, and the muscle's tendency to spasm. So normally activities that I would do that would have a 50/50 chance of sending my neck into massive spasm would then only have about a 10% chance of doing so, or basically not at all, since the Botox kept the muscle from working itself into the massive spasm.

    I knew when the time was up when one day 3-4 months later the muscles suddenly started to massively spasm again. I've only had it that once, as my insurance wouldn't pay for it, and I decided to go the medication route for the last 8 months or so, and got on methadone.

    But now for whatever reason the spasms have started getting mega-bad again. The pain is breaking through the methadone if you can believe that. I've got new insurance and a new doctor that does the Myobloc (Type B) so I'm going to try and work my around to getting the Myobloc perhaps and getting the insurance to pay for it. Not sure if I posted about this but one of the biggest expenses is not just the cost of the meds but the injection fee, typically 3-5 times that of a trigger point injection fee.

    Reason being is that the liability is much higher. With a trigger point the medicine dissapates quickly, so even if the doctor screws it up no big deal most likely. With the Botox, once the medicine's in there it's going to stay there for 3-4 months, and if it went in the wrong place and/or you got some crazy side effect, welcome to 3-4 months of living with that problem...

    But as far as having a 'bobble head' that is highly unlikely. There's too many muscles in the neck and they're so big that you'd have to do an insane amount of Botox 360 degrees around to get something like that. I had no problems whatsoever with holding my head up.

    Also I agree with what Shore said about it not being a cure. It's just another treatment. The Botox typically lasts twice as long as the average trigger point for me, so if I had the choice, I'd go Botox all the time if my insurance will cover it. There is some hope for a longer lasting cure, as muscles have 'muscle memory' and perhaps if you received Botox 3-4 times per year for 4 or 5 years, eventually the muscle might have forgotten how to spasm, but I don't think there's many people on earth that have had Botox IM injections for that long and in great enough numbers to form any medical opinion on that one.


    P.S. - One of the main annoyances of my condition is that the neck spasm causes pain to radiate over my head into my face, and around my eyes and between my eyes at the bridge of my nose. I ahve found that getting the cosmetic Botox injections in those locations (forehead and between eyes) reduces a lot of the pain and numbness and crap about 70%-80% and I can spring on the $400 a few times a year for this through a regular cosmetic surgeon. Too bad as I mentioned to get Botox injection IM it takes a different kind of doctor and costs a whole lot more.

    Last edited by stanleyguy; 12-08-2006 at 11:57 PM.

     
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