sammyo1
05-21-2008, 10:27 PM
Hello everyone, Went to osteo appointment today. After going over how the treatments have been going & examining me pretty much another confirmation that I am know an official CP patient. The osteo handed me information on spinal cord stimulation for Chronic pain treatment. She ask that I go over it & get back with her if I am interested in investagating further. For those of you who have never heard of it, a device is surgically implanted for pain in the trunk of limbs. This sends low intensity electrical pulses to trigger nerve fibers selectivley along the spianl cord . This is believed to diminish or block the intensity of the pain. It can only be used to help with chronic pain as a disease , not a symptom (little confusing). THis is only considered when all other options are tried or exhauseted, such as therapy, surgery, other forms of cp treatment. The object is to reduce the pain to a manageable level to resume more of a normal lifestyle. The benefits are to:
Provide pain relief, in some cases 50% percent or more
Helps patients reduce the intake of pain meds
Helps patients return to some of the activites they enjoy
According to the doctor & the brochure it can be tested to see how it works before the system is permently implanted, & according to the osteo it can be removed if ever needed.
So has anyone heard of this, tried it or researched it?
I am not so sure it would be as helpful to me as to some others but the osteo said I can read over it & ask her any questions I may have, there will also be a open seminar on it in june for cp patients.
Once again after the treatment today & the examination I was told that pretty much I am a mess. My rib area has alot going on in there & the osteo said she is surprised I was even there today, & surprised I am functioning as well as I am, she said I was a real trooper & could tell just by attempting treatment today that I was willing to try what it took. I did not feel like a trooper, after handing me this stuff I felt like bursting into tears, because she was confirming the fact that she is not sure she can help me. What a mess. She did say I do need to think about PM, which is what I told her my next request will be to my surgeon. I am taking the least amount of pain meds to get by & to be honest I am sick of suffering & want some dang quality of life back. This osteo center comes highly recommneded & has a waiting list to get into, so I am really having to come to terms with this. I am running out of options & definantly realizing I better accept the way it is for now at least, or I am going to set myself up for disappointment. My surgeon had high hopes the osteo would help to. At least she was understanding & came right out & said she will attempt to help me abit more but has to honest & she has no intention on making me come if it causes me any more pain, no treatment that they normally use can be used on me, so cmp you are right, traditional treatments can not be used for myofascial pain.
I was hoping someone can either have some info on this SCS or perhaps it can be something that may help someone here. I am just learning about it but the osteo feels it is worth considering for CP treatment. I have yet to go over the entire booklet. So please share any knowledge you may have or if anyone has any questions about it I can see if I can find the answers in the booklet. The whole CP dx & PM is new to me so bear with me , I may be asking a million questions. Thanks guys, Sammy
Provide pain relief, in some cases 50% percent or more
Helps patients reduce the intake of pain meds
Helps patients return to some of the activites they enjoy
According to the doctor & the brochure it can be tested to see how it works before the system is permently implanted, & according to the osteo it can be removed if ever needed.
So has anyone heard of this, tried it or researched it?
I am not so sure it would be as helpful to me as to some others but the osteo said I can read over it & ask her any questions I may have, there will also be a open seminar on it in june for cp patients.
Once again after the treatment today & the examination I was told that pretty much I am a mess. My rib area has alot going on in there & the osteo said she is surprised I was even there today, & surprised I am functioning as well as I am, she said I was a real trooper & could tell just by attempting treatment today that I was willing to try what it took. I did not feel like a trooper, after handing me this stuff I felt like bursting into tears, because she was confirming the fact that she is not sure she can help me. What a mess. She did say I do need to think about PM, which is what I told her my next request will be to my surgeon. I am taking the least amount of pain meds to get by & to be honest I am sick of suffering & want some dang quality of life back. This osteo center comes highly recommneded & has a waiting list to get into, so I am really having to come to terms with this. I am running out of options & definantly realizing I better accept the way it is for now at least, or I am going to set myself up for disappointment. My surgeon had high hopes the osteo would help to. At least she was understanding & came right out & said she will attempt to help me abit more but has to honest & she has no intention on making me come if it causes me any more pain, no treatment that they normally use can be used on me, so cmp you are right, traditional treatments can not be used for myofascial pain.
I was hoping someone can either have some info on this SCS or perhaps it can be something that may help someone here. I am just learning about it but the osteo feels it is worth considering for CP treatment. I have yet to go over the entire booklet. So please share any knowledge you may have or if anyone has any questions about it I can see if I can find the answers in the booklet. The whole CP dx & PM is new to me so bear with me , I may be asking a million questions. Thanks guys, Sammy
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cmpgirl
05-22-2008, 02:36 AM
Sammy: I haven't tried it but my cousin loves his. I was under the impression that it was primarily for nerve pain. There have been a couple of threads, a while back about it, but I don't remember what they all said. I'm sure if you go to the top of the board and do a search, you'll find them.
Wish I could help more. Hugs, CMP/MM
Wish I could help more. Hugs, CMP/MM
PAULOGGER
05-22-2008, 05:47 AM
I was offered the same thing by my PM doc. He said it was at best 50% affective 50% of the time. I asked about the actual surgery and risk of bacteria in the open spine. He informed me of the need for a top notch surgeon that can get in and out extremely fast. He said it only takes one bacteria,1, to ruin your day, rather life.
My problem is a constant stinging, burning pain that doesn't keep me from moving around. It's just so intense that I pray for the lord to take me everytime a pray, and that's alot.
My old insurance adjustor(TX. workers comp) made my PM doc so mad they got into it and my insurance stopped paying him. I was on 4 80mg Oxycontin/day with great results. I always thought drugs like that would make a mummy out of you, but I didn't even notice a loss of reflex speed. I was perfectly lucid. Now aft 3 1/2 yrs of that, I'm now back to nothing but incredible pain. When I mention Oxycontin to a doc in AR I feel like the Hubble telescope turned on me with every other sattelite in heaven. I've had two surgeries. One cervacle and one lumbar. I've had back probs since 1985 and tried everything with no help until surgery. I accidently happened on a drug that will miraculasly stop my back pain now. Occasionally I wake up and can't even go to bathroom, 30mgs of methadone and 20mins later I can dance to the bathroom. Unbelirevable! It just does nothing for my neck and thats the real torture and the oxycontin works for that. I just can't find anyone in Arkansas that will prescribe it. Believe me I have a catalog of med files substantiating my need. HELP ME PLEASE! ? God bless you all.
My problem is a constant stinging, burning pain that doesn't keep me from moving around. It's just so intense that I pray for the lord to take me everytime a pray, and that's alot.
My old insurance adjustor(TX. workers comp) made my PM doc so mad they got into it and my insurance stopped paying him. I was on 4 80mg Oxycontin/day with great results. I always thought drugs like that would make a mummy out of you, but I didn't even notice a loss of reflex speed. I was perfectly lucid. Now aft 3 1/2 yrs of that, I'm now back to nothing but incredible pain. When I mention Oxycontin to a doc in AR I feel like the Hubble telescope turned on me with every other sattelite in heaven. I've had two surgeries. One cervacle and one lumbar. I've had back probs since 1985 and tried everything with no help until surgery. I accidently happened on a drug that will miraculasly stop my back pain now. Occasionally I wake up and can't even go to bathroom, 30mgs of methadone and 20mins later I can dance to the bathroom. Unbelirevable! It just does nothing for my neck and thats the real torture and the oxycontin works for that. I just can't find anyone in Arkansas that will prescribe it. Believe me I have a catalog of med files substantiating my need. HELP ME PLEASE! ? God bless you all.
sammyo1
05-22-2008, 08:58 AM
Paul I am so sorry, how sad. I know when going into any er or urgent care if you are on narcotics boy does it get a reaction. It really makes you feel pretty low & yes for me angry. The last time two times I was into urgent care they asked why I am not in pain management, well that is a good question & one they should be asking the doctors. I am hoping to get some feed back on the SCS. I truely wish you luck are you in PM? Hang in there & lets us know how you are doing. By looking at the booklet there are differnt brands (not sure if they work differnent) of SCS's with studies comparing them.
cmp, thus far I am not so sure this would work for someone with problems like we have. Looks like it is more for back related issues, but I can ask. Like I said it can done on a trial basis. I want into pm before I would even consider anything like that. I am sure I will be facing the injections & more diagnostic testing & so forth. Always feels like I am starting over again.
Sammy
cmp, thus far I am not so sure this would work for someone with problems like we have. Looks like it is more for back related issues, but I can ask. Like I said it can done on a trial basis. I want into pm before I would even consider anything like that. I am sure I will be facing the injections & more diagnostic testing & so forth. Always feels like I am starting over again.
Sammy
123dietdrpepper
05-22-2008, 08:13 PM
Okay from what I have reasearched the cadillac model is supposed to be Bionic (sp). There are two other models ANS and Medtronic.
You might also post on the RSD board. Several patients over there use them successfully. Someone on the backboard just had one implanted and is in heaven. I will go see if I can find the thread.
Be back.
You might also post on the RSD board. Several patients over there use them successfully. Someone on the backboard just had one implanted and is in heaven. I will go see if I can find the thread.
Be back.
123dietdrpepper
05-22-2008, 08:18 PM
I told you I would be right back - it was lfoster
http://www.healthboards.com/boards/showthread.php?t=598898&highlight=stim
She had great success with hers and she points out that to get both back and feet coverage the implant has to be inplanted in the thoracic region.
I know she has other threads too and they are under the back problem board but this should be enough to get you in the proper location.
http://www.healthboards.com/boards/showthread.php?t=598898&highlight=stim
She had great success with hers and she points out that to get both back and feet coverage the implant has to be inplanted in the thoracic region.
I know she has other threads too and they are under the back problem board but this should be enough to get you in the proper location.
sammyo1
05-23-2008, 01:15 PM
Pepper, you are a whiz! I will be looking at that, I just wonder about the effectiveness for myofascial problems in my location, but hey does not hurt to look at it. I have the models listed in the brochure so I will take a look. I have not even got into pm yet so I would want to ask a good pm about the scs also. They would be the ones I am assming to help make that kind of decision. I kind of know when the osteo gave me the info. she was sending me a message. Once again your the best. Thanks, Sammy
Aimeehurts
05-24-2008, 02:22 AM
I have a SCS and would not be without it. It is the best thing to happen to me since my injury. I had my intial "trial" on Nov 8th 2001 and my permanet one implanted Nov 15th 2001.
I had several surgies due to breaking or migrating leads and also battery dying.
April 11, 2002 was due to lead breaking. I had jolting sensation. It was weird/awful feeling so had to turn it off until surgery. (This was the worst of all my surgeries. and it did not feel "right" at all after surgery)
I quit working Nov '03 because my doctors thought it would be better since the leads were breaking/migrating so much.
January 17, 2004 was due to lead migrating and battery dying both. So they replaced entire thing.
August 3, 2006 was due to battery dying...so just replaced battery and did not mess with leads. I was under general anesthsia for this surgery only.
My last surgery was January 11th 2007. This one was done doing lamileads and I have medtronic restore rechargeable unit. I have to recharge my battery about once a month and it takes most of day wearing the belt to fully charge it.
I have not had any trouble with my SCS since the last surgery but I am not active either. I try to just live each day with as less pain as possible. It is very hard though.
If you have any questions...I will try to answer. I was also a RN before quitting work.
I had several surgies due to breaking or migrating leads and also battery dying.
April 11, 2002 was due to lead breaking. I had jolting sensation. It was weird/awful feeling so had to turn it off until surgery. (This was the worst of all my surgeries. and it did not feel "right" at all after surgery)
I quit working Nov '03 because my doctors thought it would be better since the leads were breaking/migrating so much.
January 17, 2004 was due to lead migrating and battery dying both. So they replaced entire thing.
August 3, 2006 was due to battery dying...so just replaced battery and did not mess with leads. I was under general anesthsia for this surgery only.
My last surgery was January 11th 2007. This one was done doing lamileads and I have medtronic restore rechargeable unit. I have to recharge my battery about once a month and it takes most of day wearing the belt to fully charge it.
I have not had any trouble with my SCS since the last surgery but I am not active either. I try to just live each day with as less pain as possible. It is very hard though.
If you have any questions...I will try to answer. I was also a RN before quitting work.
lfoster21
05-24-2008, 03:07 AM
Hi all, I am not usually on this board, but I am glad that I stopped by;). I did have the Advanced Bionic implanted on March 17th and am getting results from it. It still is not completely in tight with the scar tissue, yet, but it is definatlly getting some of the scar tissue around it. Once that is done, I can get more programs added to it.
I charge mine weekly, only because I only need to do in for an hr. or so. But, I could go for probably 2-3 weeks, if I wanted to. They said if I wait until it is about dead, it would take 4-5 hrs. of charging time. It is very easy to charge. I put a sticky backing on the charger and stick it on my skin, over the battery. I feel like bionic wonam with a remote control for my system. It's pretty amazing how it works.
As for myofacial syndrome, I too have that. I will warn you, if you have this or fybromyalgia, that the recovery time may be a bit longer than the norm. I am still taking muscle relaxers, to help with spasms around the incisions and to touch the areas on either side of the incisions, is very tender. It is hard to touch my back to the back of a chair or laying on my back. I am hoping that part does get better soon. The Dr. said that he thought it would, but then again, he originally did not think there would be addnl. pain because of it.
If you have any questions for me, let me know. If you don't see me here, I am on the back board.
Lorie:angel:
I charge mine weekly, only because I only need to do in for an hr. or so. But, I could go for probably 2-3 weeks, if I wanted to. They said if I wait until it is about dead, it would take 4-5 hrs. of charging time. It is very easy to charge. I put a sticky backing on the charger and stick it on my skin, over the battery. I feel like bionic wonam with a remote control for my system. It's pretty amazing how it works.
As for myofacial syndrome, I too have that. I will warn you, if you have this or fybromyalgia, that the recovery time may be a bit longer than the norm. I am still taking muscle relaxers, to help with spasms around the incisions and to touch the areas on either side of the incisions, is very tender. It is hard to touch my back to the back of a chair or laying on my back. I am hoping that part does get better soon. The Dr. said that he thought it would, but then again, he originally did not think there would be addnl. pain because of it.
If you have any questions for me, let me know. If you don't see me here, I am on the back board.
Lorie:angel:
sammyo1
05-24-2008, 10:01 AM
Thank you so much ladies, I was really hoping I would get some feed back.
This info. was just given to me by my osteo. & I have actually just been told a couple weeks ago my diagnosis so I am trying to get used to it all & feel abit overwhelmed. I am yet to even start PM & that will be my first step in hopes I can see what all my options are. At the same time I do like the fact there is something out there that can possably help & cut back on meds. Lets face it I will have to go through the long process of finding out what may work for me but at least in the mean time I can investigate this.
It looks like there is alot to learn. Of course I have questions & will in the future & really appreciate you kindness in offering your input.
Foster if I may ask what area do you suffer the myofascial pain?
Will it be ok with you both if I check in & see how its going?
I will be speaking with surgeon & aftering being handed this it is loud & clear that it is time for PM, I just hope he gets the message as clearly as I am. I am tired of waiting & am getting worse. I understand there are different types, such as conventional, rechargable, radiofrequency, & different makes, can you tell me what you both have? How long was it tested on you & so fourth.. Of course I would really need to know it would work on the myofascial issues. I would so appreciate your input. Thanks so much, can I assume your both on the back board, if not what board do you post on most of the time? Sammy
This info. was just given to me by my osteo. & I have actually just been told a couple weeks ago my diagnosis so I am trying to get used to it all & feel abit overwhelmed. I am yet to even start PM & that will be my first step in hopes I can see what all my options are. At the same time I do like the fact there is something out there that can possably help & cut back on meds. Lets face it I will have to go through the long process of finding out what may work for me but at least in the mean time I can investigate this.
It looks like there is alot to learn. Of course I have questions & will in the future & really appreciate you kindness in offering your input.
Foster if I may ask what area do you suffer the myofascial pain?
Will it be ok with you both if I check in & see how its going?
I will be speaking with surgeon & aftering being handed this it is loud & clear that it is time for PM, I just hope he gets the message as clearly as I am. I am tired of waiting & am getting worse. I understand there are different types, such as conventional, rechargable, radiofrequency, & different makes, can you tell me what you both have? How long was it tested on you & so fourth.. Of course I would really need to know it would work on the myofascial issues. I would so appreciate your input. Thanks so much, can I assume your both on the back board, if not what board do you post on most of the time? Sammy
lfoster21
05-24-2008, 01:14 PM
You are always welcome to ask question, so please don't hesitate;). I 1st wanted to tell you that when my surgeon 1st told me that he believed that I would be in this type of chronic pain, for the rest of my life, I was devistated. But when he told me that he was going refer me to a PM Dr., I was even more upset, becasue from everything that I had read and heard...this was the last place a Dr. would refer you to, when there was nothing else to help you. I felt like my surgeon had given up on me and I was kind of being "thrown away". I want to encourage you in saying that I have gotten more care, understanding, some relief of pain (and knowledge of how to live with some pain), from my PM. Its also comforting to know that the PM doctor will be there for you, for the rest of your life, if needed. You won't be given up on and told to go somewhere else. (Also, if your surgeon does not mention going to a PM dr, at your next visit, you can ask for a referal at any point. I am sure your Dr. would be happy to help you with that.)
When looking for a PM, do your homework and look at more than 1. You want to make sure the plce you go to, offers numerous treatments and you don't want a place that only gives meds. and sends you out the door. Nor do you want a place that don't believe in giving meds. for long amounts of times.
"Foster if I may ask what area do you suffer the myofascial pain? "
I have myofacial pain in my entire back, hips, legs, & shoulders.
"I understand there are different types, such as conventional, rechargable, radiofrequency, & different makes, can you tell me what you both have? "
If you are talking about the stimulator, there are 3 brands. Advance Bionics, MedTronics, and another one that is slipping my mind right now. I have the Advance Bionics brand. When you talk about conventional...that is the term that describes the various therapies, that are not surgical. These would be stuff like P/T, the injections and blocks, radio frequency, aquatic therapy, accupuncture, chiro. etc. Hopefully you fin a PM that does a lot fo these therapies, so they don't just send you on your way with meds.
"How long was it tested on you & so fourth"
Usually the trial are any where from 3 - 7 days, then they take it out (painless and quick.) and if it worked, then they will set up a surgery date and you'll have the implant done in the hospital.
I hope this helps a bit.
Lorie:angel:
When looking for a PM, do your homework and look at more than 1. You want to make sure the plce you go to, offers numerous treatments and you don't want a place that only gives meds. and sends you out the door. Nor do you want a place that don't believe in giving meds. for long amounts of times.
"Foster if I may ask what area do you suffer the myofascial pain? "
I have myofacial pain in my entire back, hips, legs, & shoulders.
"I understand there are different types, such as conventional, rechargable, radiofrequency, & different makes, can you tell me what you both have? "
If you are talking about the stimulator, there are 3 brands. Advance Bionics, MedTronics, and another one that is slipping my mind right now. I have the Advance Bionics brand. When you talk about conventional...that is the term that describes the various therapies, that are not surgical. These would be stuff like P/T, the injections and blocks, radio frequency, aquatic therapy, accupuncture, chiro. etc. Hopefully you fin a PM that does a lot fo these therapies, so they don't just send you on your way with meds.
"How long was it tested on you & so fourth"
Usually the trial are any where from 3 - 7 days, then they take it out (painless and quick.) and if it worked, then they will set up a surgery date and you'll have the implant done in the hospital.
I hope this helps a bit.
Lorie:angel: