I may not have this posted in the right spot but I am looking for anyone who has had a spinal cord stimulator implanted. I would like to hear from anyone good or bad results. I am supposed to be getting one soon and I want feedback on them. I have Rheumatoid Arthritis and have been told that I have bone on bone from about level L 3 on down to S1 levels. I was told that I need spinal fusion but that it would not work due to my RA. I am a diabetic also.(under great control by the way) I have severe pain in my right lowback/hip area with radiating pain going down the leg and pins and needeles in my foot (the foot feels like it is asleep after I stand on it for less than 5 mins.) I am on BIIG meds for the pain and I hate to take pills. I was told that I can expect about a 50% decrease in my pain which would be lovely! Anyone wh has a SCS please tell me how it has been for you in the pain management area. Thank you so much!
Hi first off I am sorry to hear that you are having that much pain and disconfort. I have an SCS unit and yes for me in the begining it was at about 60-80% pain reduction which made me feel like a new man. I have done something else to my back so my SCS unit is not helping as much. Now please dont let this be a make you feel that the SCS unit wont work for you. When you have the trial unit done that will be the real way to see if it will work. When I had the trial I was mad when they said it was only for a week. So yes I think that it can help you, but you and your Dr will need to look and see if it will give you the pain reduction to make it worth putting in. Another member here just had the trial and I am sure that he will post here letting you know how it worked for him.
Best of luck in finding something that will help you.
Hi MeMaw, as Hawk said I recently had the trial and the relief for me was amazing. I plan to have the surgery for the unit to be permanently implanted some time in February. While I was doing the trial I had at least 80% pain relief. They do the trial to see if it works for you, but then they have to take it out and let you heal from the trial before they do the permanent implant. So, last Thursday I had it removed and now I am waiting - in pain - until I cna have the suregery. I am looking so forward to it and having that relief again. Going back to my world of pain has been a struggle even though I know things will get better. I definately think it is worth looking into and doing the SCS trial to see if it will help you. I hope you get relief. Good luck.
Thanks guys! I will take the computer test on Tuesday to make sure I qualify for it. Not sure if everyone goes through this testing or not,but at Triangle Orthopedics Assoc. Pain Management they have you take a test on the computer that is a type of psycological prfiling test.(from what I gather anyway) The Pain doctor and the psycologist there both have agreed that I am a prime canaate for a SCS because the TENS unit works so good for me. ,I do not know what I would do without my TENS unit!! I went to town to get some of my groceries with my mother last Friday and the cords kept coming out of the plug in for some reason and I was in REAL pain .I get B~~~chy when I am in pain how about you guys? Thankfully my mom understnds and just looks at me like I wish I could make the pain go away for my baby.(remember I am 44!!!!) (always will be mommas baby though!) My husband has seen me have to go through so much pain in the past that was fixable that he says I do not blame you. if it will help you do it. So then I end up having to make the decision by myself which is not something I am used to have to do. All other surgeries were a you have to do this type oof thing. I am scared . I mean it is wires lying next to the spinal cord.!!! I have decided though that I have to do the trial. I need to do this for me. nobody else. If I mess up then I mess up. I have no quality of life right now. Right now if I go to get groceries I have to use the mart cart and I get these looks like they are thinking"look at her,she is just fat and lazy" I actually have had a old man say something to that order to me and when I told my husband about it that night he was livid!! I was glad my husband was not with me when he said that to me!! Might have been a fight in Wal~Mart!LOL
Thank you both again for sharing with me. And Please write back with any thing that coe to you mind about the SCS. OK?? Thank you sooooo much!!
I took my wife to the Cleveland clinic to see a neurosurgeon because she had 2 failed SCS trials. The kind done percutaneously. The Cleveland doc wanted to do another trial but with a paddle connected to the spine via a mini laminectomy but the psycologist said she was not a good candidate because of the results of her mmpa exam. Minnesota M-- Personality Assessment (I think) She is really frustrated because she has so many side effects from her medicine. In fact she was just admitted to the hospital today for severe constipation. I hope you do well on the test. I don't think it is suppose to be the only determining factor but the doctor that referred my wife to Cleveland would not plead her case. I hope I don't make you nervous. I'm sure you'll do fine. Weezie63
Hi there Weezie 63,Thank you for your cander and honesty about your wifes situation. I go this comeing Tuesday for my "test" on the computer. I think I have a good outlook on life in general so I should do fine. I really need to get the SCS done though..... I went shopping with my dearest friend Carol yesterday in Raleigh NC and we would go into a store and I would basically walk for less than five minutes and get to the point of gritting my teeth due to pain. I would sit down and she would go walk and look and then come back to get me.(Now I know how you men feel when we women leave you sitting at the mall while we do our shopping!) I was ,iserable! I honestly had to take a flexerill after the first store then after the third store I had to take a mepergan fortis (Mind you I had already taken my morphine before ever starting the day) I HATE PILLS!! I have never had and constapation problems but can tell things are not like they used to be in that department either. Yuck!
Anyway I had a rough day but was so out of it when I got home that I basically just died last night!! I slept better than usual but I was very stiff and sore this morning.,
I hope your wife can get some releif while she is in the hospital from her bowel problems and maybe even from her back issues . Keep me updated on her progress and I will keep her in my prayers! Because let's face it PRAYER is about all we have left! Take care and thanks again! MeMaw2005
Hi I'm a pain doc, and I'll tell you stims are better for leg pain as opposed to back pain. But that's changing nowadays with newer paddle leads that neurosurgeons put in, as well as percutaneous tripole leads that pain management puts in without needing to make a laminotomy. Both are able to penetrate deeper into the spinal cord than older leads, and therefore can interact with the nerves more responsible for back pain. Leg pain has always responded pretty well to stims. I've had patients that have had 80% reduction in their leg pain. Back pain, above the iliac crest seems to average about 50% reduction in pain. Anyways, the trial is pretty low risk, about the same risk as getting a labor epidural placed, so it's worth it to give it a shot to see if you get good results, assuming you've met all the criteria for trialing one in the first place.
I cannot comment on the SCS but I can comment on your shopping trip by saying...I know EXACTLY what you are talking about. It happens to me every time I get up the courage to go shopping again. I can make it about 5-10 minutes in a store that has a cart I can push, maybe 15. After that it is walk, rest, walk, rest, and rest some more. I use to love to go to unique stores, often to just look. Those looking days are long over and now 99% of the time I go out of necessity only.
However last week I went to one of those love to look unique shops with my college granddaughter. I pushed myself and ate every pain med I safely could and still did much like you. I hear you and am sorry it happens to you also.
Blessings to you, Tuck,
I have heard good and bad from different people on the SCS. I had one installed in 2000 between 2000-2001 I had 5-7 surgeries. At first the surgeon nicked the leads my a staple...then by trial and error we kept trying to get the SCS to help with the pain. The curvature of my spine is so bad the surgeons could not get the leads placed where I could get the correct amount of relief so we said enough was enough. If it works and takes away half of your pain I would do it GOD knows I tried. The nerve pain gets to you after awhile ...I know how you feel if there is some hope we will try to get the help we can. Newer technology is available now I wish you all the luck in the world.
Blessings to you,
Hi there I have one for my foot. I have tumors on the nerve of my foot I had the trial done and unfortunately, right after the surgery I pulled the darn thing out (I put my hands over my head to get dressed in the post op room I didn't wear a button down shirt and didn't know I should have and pulled it out.)I did have relief before going home. I had a final one put in July 3rd last year I fell a week later and yanked it out. I had the final one done again and man oh man I will tell you it is the best thing that I had done. the recovery isn't that bad, but time consuming. I was hoping for at least 15% of my pain to be taken away. I have tried everything else (MORPHINE< DARVON LYRICA and METHADONE all at once and it didn't touch the pain.) The only thing that helped was hot water soaking. the doctor said that is something to the effect the way the stimulator works. I had it done, what could I loose. I feel I have about 30-40% pain free. I will take that.
The TENS unit didn't work for me and I am glad it does for you. If you do go ahead with this, If you have any questions you can ask I am sure others won't mind I will try to help oyu answer them.
By the way I am waiting to hear back from my doctor as to see if they can put a lead tomy t-4/t-5 on my spine, they think I have a tumor there as well, but since I have the stimulator I can't have a mri
Gosh what luck did you have!! Sounds like my kind of luck.!! I went today and took the psycologiaccl test they give and I will know on Thursday or Friday of this week for sure what is gonna happen,but my Psycologist said today that he is just sure I am a perfect canidate to get it done! I told him I would be sooo happy to just get 40-50% relief! I misss going out with my friends and actually looking at stuffand be thinking where is a seat?? Ohh there is a table maybe if I lean on that I can ease my pain oh now there is a seat!!!! Yes let me just make it there!
I want to be able to ENJOY my company and be cheerful like I have been in the past! I am a cheerfuul Joking type of person! I love to cut up! I hate being the sourpus that is no fun to be around!
Thank you for sharing with me about all the stuff you went through.
Take care and I will let ya know what I find out.
It actually makes me feel better to know that there is someone out there who actually understands and can relate to what I am going through!! Like I told Michelle on here I am a very cheerful person and I hate to be such a crabby person. I love to cut up and joke and I love to carry on with my friends I am a bigtime joker!! But lately I am all about the pain..I look for the next chair or bench or anything that I can take the pressure off my back with. I have been known to even fold my body forward on a cart to take the pressure off my back and leg/hip Thank you for you reply and I will let you all know what I find out this Thursday or Friday about the approval of the SCS placement
Thanks for that Info. My pain does go down my legg and is very bad in the HIP area. The Psycologist doctor said today that he thinks I am a prime candatefor the SCS.
Guess what? He just called and Informed me that I am a canidate for the SCS and that they will be calling me with the appt. soon to have it done.
Thank you for you reply it is always good to get a professional view on things of this matter. I hope you understand that my pain is not limited to my back only. It goe to my hip area and down the leg to the foot. The foot goes to pins and needles and then the leg feels heavy and yet it hurts. It is complecated.I realize this, but I am so glad to just have a light ant the end of my tunnel.
I think I may have sent your email to Tuckermore I am not sure. But any way I just got the news that I will be getting a call to set up the procedure. Maybe soon I will have some relief of my pain. If I do , One of the first things I want to do is go to a store and actually look around! !!!! Thank you for youe reply to this and I hope you have a good day/night.
Hi guys! Yes I have been told about the not lifting the arms and no bending and even the no shower!! Which for me is absolutely horrible! I am a clean body finatic(sp?) I as you can see am a large woman and I have this fear of the "fat person smell"! I am one of the ones who takes two showers in the winter and three in the summer! I just do not want any bad odor! I can not help this part of my being. But in this case I will have to make the exception to the shower. I can just see it now I will be taking a bird bath several times a day!! Oh well at least I am a clean person! LOL
I got the call to set up my doctor visit with the actual doctor who will insert the SCS trail then the actual SCS Too and it is set up for March 3...however the lady said that when I see my Pain management PA on this coming Monday that she may be able to get me in quicker than what the appt lady can. So I guess I will see on Monday when it will all come to pass. In the meantime I will try to think up things to make life easier for that week. If you have any suggestions I welcome them with open arms! I am even wondering if I should go to town and do other stuff like going to Church on Sunday and Wed night or whetehr I should basically stay home for that week. I am sure the doctor will tell me the answer to those questions. I am making a list of what to ask the doctor. I like to make a list so my mind does not FREEZE up and then I forget what I needed to know!
Thank you for your kind thoughts and well wishes. I am so hoping this will give me a little bit of my life back ya know? Take care and I look forward to hearing from each of you!
Hi, MeeMaw2005. I don't mean to be negative about SCS, but there are a couple of things you should be aware of. First, it's a fussy piece of equipment. My Medtronics unit (since removed) had to be re-charged every week or two, something you don't have to deal with during the test runs. The re-charging process is time consuming and inefficient--so be prepared for that. Second, (and this is what happened to me) the wires can move after the device is implanted. If that happens, it may, at best, function in a manner other than what was intended, or at worst (my case) hit a nerve and made the pain worse rather than better. Again, I want to emphasize, it is unlikely that either of these two problems will be evident in the testing phase.
I sincerely hope that the SCS works for you--heaven knows, we can all use some relief from pain. An I totally identify with being tired of the pills and their side effects. Good luck, and be prepared...fpainestam
The shower is only until you get the temp one removed. see if you can make a hair appt. to wash your hair like I did. when and if you get hte permanet one put in you will be able to take a shower after the bandages come off but can't wash your ahir hands over head. the movement is why you have to be so very very careful it is so touchy this device, however it is worth it for me
I'm a little late on this but my mom has one and it has done wonders for her. She has the pain down the leg and hip just like you. She is now scaling waayy down on her morphine which is so awesome and is allowing her to get her glow back. I'm very happy for you that you are getting it and I really hope it helps.
I Charge my device every week for three hours a week I do it 3 times a week one hour at a time. I use to use the belt, but I like the sticky pads better it seems to hold it in place better, do some of you agree? It also depends on how much you use the device. I do a lot of driving an dI was told you can't use it while driving. also they can address the pulsing the way it feels going onto your body. mine at first was a beating beat beat (like water from a shower) now it is constant.
good luck and I hope it gives you some relief
I will be praying for you. This procedure does work for a lot of people you will know if it's not doing ok. If I was you I would start researching on the internet right away that way you will know exactly what you should or should not do and it shows the procedure. I'm not sure if you are like me or not when I was told I had cancer again I started doing research right away.. I hope you can find some useful information on the web and alwo with medhelp.
Good Luck and God Bless,
Thank you Dee52. I must be alot like you because as soon as they even began to talk about doing this I went online and I did the ask.com thing and found a link to watch a video of the trial and then the implant itself. I then took that information with me to my next dr. appt and discussed the options, the pros and the cons of having the procedure done. I am a person who likes to be in control of my body. So I like knowing exactly what they are going to have to do to me . I too had a cancer scare last January. I had a cantelope sized mass on my one and only ovary (had had the other one removed with my hysterectomy back ten yrs earlier.) and I had sveral (five I think it was) doctors tell me they just knew I had ovarian cancer. I was scared but I went online and educated myself and then I did a whole lot of praying! Thank God it was benign!! So I do believe in Miracles! Thank you for your prayers...I know they work I am living proof of that! Take care and I promise to update you as to when they do my trial etc. Take care and I will pray that your cancer will get better too.
I know your reply was to Dee but I just wanted to say that I am gald you did not have cancer and that I too know prayers do certainly work! I have had the blessing of some Miracles in my life too and its so nice to hear of others who have also:)
I wish you all the best!
My replies or comments in general are always meant to anyone who wishes to take the time to read them. I would shout it from the roof top if I could I know what I know when it comes to God's love.
Now as far as this \scs thing goes I am still searching for answers!
I hope that everybody who has helped me by saying a kind word or just giving their experience whether good or bad knows how much I appreciate the comments. I am not looking for just the good things I needed to hear the negative things so fpainestam I thank you also for your comments . I NEED to know the bad as well as the good. This is a major thing for me. I like knowing all the aspects of it. THANK YOU EVERYBODY!!!
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