Spinal cord stimulator not working be careful don't rush into getting one
Posted , 5 users are following.
Hi Deb here. I see I'm just another person on this forum that has had another failed Spinal Cord Stimulator. I'm now sitting here writing this in pain as I've just had it removed on Tuesday. But I've have had so much trouble with it from the start of having the full implant. But I have to go back to the beginning I was diagnosed with an auto immune disease - Crohn's and Perianal disease back in 2001 then I had several surgeries from it eg: Fissures, fistulas, abscesses...etc. Then by early 2006 I had another relapse of my Crohn's disease and my bowel and anus was completely finished I had no alternative but to have a Proctocolectomy & End Ileostomy where they cut out the whole large bowel and anus out and gave me a permanent Ileostomy bag. A huge operation !!! When I first got Crohn's disease that's when my back pain first started I was in constant severe pain and I had several procedures done like facet joint injections, epidural steroid injections, discography...etc.. you name it... I tried it !!!. In the end I had to have back surgery there was nothing more that they would do for me. I had to have a double spinal fusion of L4/5 L5/S1 back in late 2006....the surgery failed of course. So I had to have 2 huge surgeries in the one year !!! My poor body felt like it had been through the wringer my stomach / abdomen felt like I had a zip on it from all the surgeries. He did try to cut alone the same surgical line from the last operation though. The doctors all said that the osteoarthritis was accelerated due to the Crohn's disease which was just another auto immune disease to add to my list. So because the back surgery failed my surgeon sent me to the Pain Management Unit as a chronic pain patient. They tried several things to help me over the years. I was put on a high dose of a fentanyl patch. But now I've developed pain in both knees I found out I have no cartilage left in the both of my knees I am walking bone on bone on both knees. I need a knee replacements done on both my knees but my surgeon won't do this new surgery on me until I'm at least 55 years old. So I have to wait a few more years until then. So now I limp when I walk due to my back and knee pain as my gait has changed which has now caused bursitis and arthritis in both hips and in my right shoulder. So I'm in constant pain that's why my Pain Management Doctor said I was a good candidate for this Spinal cord stimulator so I thought why not give it a go I have got nothing to lose. I went through the trial of the Spinal cord stimulator in June 2017 it was the answer to all my dreams !!! It helped with my back, hip, and even knee pain I was over the moon. So of course I wanted to go through to full implant which I had done in August 2017. But what a nightmare.!!! Ever since the rep from ...##.. switched it on I told them the leads weren't in the right place. I've had back pain constantly and especially in the hip / buttock area where the battery pack had been inserted. It has been heating up, red hot, with a red rash and the pain was unbelievable. I couldn't sit or lay on that side where the battery pack was. I told my rep she and the doctor kept telling me it just needs to be readjusted /reprogrammed ..."tweaked "we will get it right they said. I went back there 3 or 4 times for them to " reprogram " it but I kept telling them about the battery pack being the biggest problem. It was killing me I was in constant pain. There were times I wanted to pull it out of my body myself because it was lifting up too. The rep said-" Oh maybe you've lost weight " ??? I said no I haven't it was coming up to the surface of my skin pushing it's way out of my body. I took photos of my skin where the battery is it looks like a red, hot, rash of blisters over the battery pack to prove it. I just wish I could show you all on here. I had a new GP and I showed her the pics. She knows alot about Crohn's disease she said you probably should never have had this spinal cord stimulator done. It was like my body was rejected the battery pack pushing it up out of my skin you could actually feel the edges of it just under the surface of my skin. My GP agreed with me get it out ASAP.... finally I had a doctor who listened and agreed with me. My GP said tell them you want it out now. So I went back to the PM unit and told my pain doctor everything and he looked at the pics I took and he felt it and he finally agreed it had lifted up. But he still said let's give you an xray first to see if the leads had moved. He said there was a new lead that covered more areas I could get a new implant and have the whole thing re done again. OMG No way not again of being careful for months of not moving again. But it's not the leads that was the big problem it was THE BATTERY THAT WAS CAUSING THE BIGGEST PROBLEM !!! And by the way I was right the xray revealed the leads had moved he said but they were never in the right place from the beginning he must not have not put them in correctly from the beginning. It wasn't by my doing either I was so careful !!! I found this forum and started to read all about you guys a little bit too late you all have the same problems as me with the battery pack the red, hot battery pack heating up, the constant pain it was causing it was text book just like I was experiencing. But mine battery pack was lifting out of my skin. I told my pain doctor no more I need it out ASAP. So he finally agreed with me and I got it all out last Tuesday. I said what does this company put it down too .. a fail of the implant ??? But I got no answer from him. It cost a lot of money I felt so bad it didn't work for me. But my GP and I said I may as well strap a tens machine and put it on my back when I have pain as it worked on the outside of my skin on my back during the trial. But not when it was all implanted under my skin that's when all my trouble started. I said to my pain doctor I guess it's back to square one with me in regards to pain relief. I'm now in a lot of pain from the surgery but I'm sure that will feel better in a few days. Better this pain than having that battery under my skin any longer ...well if I would have left the battery pack any longer it it would have popped out of my skin by itself sooner or later as it was so close to the surface of my skin anyway. Lol. If I saw this forum before surgery and saw all the complaints I don't think I would have gone through with it all in the first place. Thanks for listening guys. Love Deb.
0 likes, 7 replies
KathleenColand debbie0000
Posted
So sorry you have so many problems and are in so much pain. It makes us realize how lucky we are. There is always someone worse. I am in tears thinking of you. I had triple fusion L3-S1 2 years ago, resulting with Si pain and hip bursitis etc. I considered a nerve stimulator but thought I may be better off without. I really didn’t want to add problems, but as you know we will try anything. Everyday, day after day in pain is herendous. No-one would blame you. You would always would have wondered what if it works. You never know. Heard of a few good results. When I had my surgery, the dura tore 2cm and I found out when they got me up day 1. Omg the pain was unreal. My family was so upset at the pain I was enduring. They drugged me and repaired it 10 days later . But as you know more surgery more scar tissue. So because of the tear in the dura, I am afraid to have anyone stick anything in there. I am presently doing stretching exercises with a yoga teacher who is a physical therapist 1 on 1. My hips are so tight, I got bursitis right hip and it is helping. Also she stretches all my internal hip and buttock ligaments inside, which is helping. We get so so tight and lose a lot of range of motion in the post op process . Regular pt doesn’t help and I know we have all done this. I’ve had numerous cortisone inj on the SI etc. hoping this helps. I’m sure this is not your solution but almost all fusions of the SI I read have come to this. Maybe someone will benefit from this. Deb hang in. Maybe someone has answers for you. Thankyou for sharing.
debbie0000 KathleenColand
Posted
So sorry to hear about your troubles too Kathleen. You've been through alot too. I found this forum after I had my full implant and was already in pain. I wish I'd seen this before I would never have gone through with it. I did ask alot of questions to their rep ( don't know if you can name the company who I had the Spinal cord stimulator with legally so I'm not naming and shaming but looks like everyone has had the same as me Lol ) but they always so no we don't or haven't had anyone with problems with it. Liar just say that to suck you in to getting it done. They still kept telling me the battery pack wasn't causing me any pain, redness, or heating up. No it can't be happening to their battery pack. There stimulator and leads was made by NASA it cost $45000 it is not doing what you are saying. I think I'm not imagining it's not all in my head lady !!! That's why I took the photos to prove it of my red blisters and when it heats up. My skin was red hot and had blisters you can see it in my photos I had proof of this. My Pain doctor was amazed when he saw the pics he said I believe you, I believe you. But still tried to talk me into doing it all over again with the companies newest leads that covers 13 or 16 more areas. But it was the battery pack that was causing me all the problems. They just don't get it or listen to the patient. I totally understand about your bursitis pain. I have it in my left and right hips but the left is really bad just won't go away. I've had a cortisone injection in it but they never work on me don't know why. I think it is more arthritis now than bursitis as they say bursitis goes away. I also have it really bad in my right shoulder at the moment. In the operating theater on Tuesday the anesthetists put the jelko on the inside of my right arm because he couldn't find a good vein to put the anesthetic in to put me to sleep. Then he wanted me to outstretched my arm high above my head on a side table of the operating bed. I was in horrific pain as I can't put my arm up because of the bursitis and I have a frozen shoulder and a spur in it too my GP said when she saw my xray. So the anaesthetist tried to make it comfortable for me but couldn't. I remember saying just put me to sleep... put me to sleep for the operation I couldn't stand the pain it was incredible. I remember whispering to him when this is all out I need to get my shoulder looked into. Because of this stupid spinal cord stimulator I haven't been able to have an MRI on it but now I can. My GP wants to send me to this Physio who is good and get him to look at it for me. I'm not having anymore steroid cortisone injections in it as it didn't work in my hips or my shoulder. My GP said she had " dry needling " done on her bursitis and it helped her. Have you heard of this or tried it before Kathleen ? I'm willing to try anything as I don't sleep at night because of pain somewhere in my body. I haven't slept through a whole night... a really good nights sleep in years. Thank you so much for answering my post on here I really appreciate your feedback and help Kathleen. Just to know others are there helps too. Good luck with your health issues too Kathleen. I'm glad your getting some relief from your physical therapist. Hope the physio helps me too. Sending love and healing, positive thoughts your way Kathleen. Love Debbie.
nancy43771 debbie0000
Posted
Sincerely so sorry for all your pain and suffering. Glad to hear that your GP was responsive and caring. I think that the doctors are in a difficult spot. Pressure is mounting to get their patients off the strong meds and here is a promising technology that is helping a lot of people. But they do seem to not be tuned into possible negative effects for those with complicating issues such as autoimmune issues. My pain management doctors have felt frustrated by my reluctance...why not just do the trial? When my reluctance is explained that it is the battery - a foreign object that I am concerned about - they just don't get it. I am very lucky that my pain is manageable with a very restrictive lifestyle which my husband and I have accepted. I am now managing via the old fashion methods of osteopathic manipulations, acupuncture, trigger point injections of lidocaine to breakup the tightening muscle pattern responses (cortisone makes all symptoms worse), facet ablations (which really helped with some pain issues), I did add in some new methods of PRP that cured my hip bursitis/tendinitis (just one guided injection did it - that was amazing) and stem cell injections into 5 lumbar discs (glad I did this but it was very expensive and unknown as to how much it helped). And I must add that I also added a psyc trauma specialist as I do not have the reserves to deal with negativeness at this point. Again, I am thankful that my pain levels are kept down by this proactive work. I do hope you do a lot better once you recover from the surgery pain. And impressed with your courageous efforts to have tried a technology that has helped a lot of people. God bless.
debbie0000 nancy43771
Posted
Wow Nancy you've been through alot too. I guess everyone has there different health problems and health issues. I think you're so right not to rush into it I personally wouldn't recommend it to anyone now. But it has helped some people but on this forum I'm seeing more and more people who have had bad reactions from it. If I'd seen this new GP earlier and spoken to her about my health issues and the spinal cord stimulator and battery pack I think she would have told me not to get it with all my health problems and I think I would have listened to her and maybe not had it done because of all my auto immune diseases she said she knew it was going to be a issue with me. But I did question the my Pain Doctor and the rep about me having Crohn's disease and the fact that my body rejected my own bowel will it reject the spinal cord stimulator and the battery pack. ??? My Pain Management doctor said oh you should be fine but told me to ask the rep about it. But of course she said no... no...no...it's won't be an issue with your Crohn's disease and sensitive skin if alot of old people with very sensitive skin can handle you can. It is worth alot of money $35,000 designed by NASA state of the art it has gone into so many people already and they are all fine. But somehow I knew in my gut that my body would reject the battery pack. In the past my body has reacted to a splinter badly any foreign object like you said I get infections. My skin is super sensitive doesn't like alot of surgical tapes and betadine things like that. So why would it not like this underneath my skin. I'm glad you had some relief with your bursitis what is PRP that helped you Nancy ? Maybe I could try it suggest it to my Pain doctor. My GP said I should try " dry needling "at a physio she recommended me not sure what it is but she said it helped her and she got rid of her bursitis in her shoulder after the first go. So now this surgery is all over I might go see this physio guy she recommended me and go have a try of this dry needling. Or what you had done. I'm very interested if you could let me know what PRP is Nancy ? So thank you for answering my post and suggesting this. I'm open and willing to try anything as I said to my Pain doctor when he came and saw me on Wednesday morning after surgery I said to him I guess I'm back to square one with my pain relief now that this Spinal cord stimulator is all out and didn't work for me. Thanks Nancy I'd really appreciate your help or advice. Sending all my best wishes to you Nancy and good luck in your pursuit to find pain relief for yourself too. Love Debbie
allaroundanne debbie0000
Posted
I guess it depends upon the severity of your autoimmune issues. I have Hashimoto's thyroiditis- an autoimmune response to my own thyroid so bad that I have to fully supplement all of my thyroid hormones. However, I have two SCS and have had no rejection issues from them at all. I do agree with you though that some thought should be put into that aspect of a person's health profile when they are deciding suitability for an SCS- does the patient have an autoimmune disorder, how bad is it, is it current, ongoing, under control, steroid dependent? All those questions should be answered and when you start getting too many yeses, then you ought to really re-consider.
Lynn
debbie0000 allaroundanne
Posted
Funny you say that about auto immune diseases Lynne because not only do I have the auto immune disease - Crohn's disease but I've had a double spinal fusion that didn't work too. The spinal fusion I did was an experimental trail they put a cage in my back and took a piece of my hip bone to put in the cage. It was suppose to grow in the cage and fuse my spine. I had regular MRIs and xrays to check the growth of my bone in the cage at the end of the trial. Guess what the bone did not close or fuse in the cage like all the other " healthy" patients. So that's when the back surgeon said I can't help you anymore it's not a surgical problem and said basically it hasn't closed the trial failed and so did the spinal fusion failed. So he said go see the pain management unit at the public hospital put your name on the waiting list....I waited 2 years to see a doctor there. And he wiped his hands of me !!! So my body basically rejected the cage too which the pain doctor knew I had a failed spinal fusion. The Crohn's disease brought on all this arthritis degenerative dise disease it accelerated it. I also have hypothydroidism too my thyroid gland stopped working completely and I was sooo tired couldn't put my head off the pillow and I gained alot of weight very quickly too. And is hard to get off....battling all the time with it. And now having this spinal cord stimulator another thing that my body has rejected the battery pack. And now that never worked. Maybe you are right they should ask prior to having the implant do you have any auto immune diseases?, how severe is it ?, has your body rejected things implanted in it in the past?. My body doesn't even like certain types of tapes and plasters and my pain management doctor knew all this prior to surgery. I did ask if any Crohn's patients have had a SCS but was not given an answer to it. When l had my SCS taken out I asked my pain management doctor what do you put this down to just a failed implant he didn't answer me on that one either.??? I asked what do I do with all the SCS's remote control and charger and all the equipment that goes with it...considering they kept telling me how expensive it all is that it cost $35 grand or something and was built by NASA. And I was told to insure it under our contents insurance because if I lost the remote control or the battery charger they cost $1500 each to replace. And was NOW told to throw it all away once it was all taken out of me.???? Or keep it as a momento ge said. ??? Weird. Interesting you have a thyroid problem too and you had no problems with your SCS. Obvious not the thyroid problem then that is refusing the SCS. My body was rejecting itself it actually rejected my own large bowel when I was first diagnosed with my Crohn's disease and I nearly lost my bowel back some 15 years ago now. I managed to hold onto my large bowel for another 5 years after being diagnosed with Crohns disease but I eventually had another Crohn's relapse and my large bowel and anus was what my colorectal surgeon called " so moth eaten " by the Crohn's disease that if I don't get it all out it would turn cancerous. After watching a good friend of mine just die at 35 years old with a cancerous football sized tumour in her bowel but when they went in it was too late. It went undiagnosed for way too long they could only take out half of it and then it was fast growing she passed away very quickly soon after that. So I told my colorectal surgeon -" just get it all out of me NOW " . So he did he took out my large bowel and anus and I now have an ileostomy bag. Like I said my body rejects everything too like tapes,plasters ...etc...and I'm allergic to some of the betadines they use on me prior to surgery. So I was very dubious about getting the SCS battery under my skin. But I was actually fine during the trial BUT only when the battery pack was on a belt around my waist and not inside of me under the fat layers on my hip. Never again that's for sure. Now I am left with a lump of scar tissue on my hip some 6 weeks later after getting it all taken out which still actually hurts. I have not been given a follow up appointment yet either I'm still waiting for one....???? Has my pain management doctor now washed his hands on me too put me in the too hard basket as well. Just like my back surgeon. They don't know how to help me I think ???. And my GP said just asked me last week how is your back now you've had it all taken out ??? I said about the pain in my hip but she said probably scar tissue it may go away but I still having the same back pain giving it a score of 8 / 9 out of 10 for my back pain nothing has changed !!! I am having the same pain that I had before, during and now after the SCS full implant because it didn't work at all. Only pain relief I've had was when I did the trial of the SCS with the battery on a belt around my waist unfortunately you can't live with that one all the time. I told her I might as well go back to using a tens machine on my back and use a belt on my waist so I can walk around with it. Same thing as the SCS less pain to do it than full implant. Anyway good luck with your own health issues and thanks for answering my comment Lynne. Cheers Debbie.😀
allaroundanne debbie0000
Posted
Well, your strong immune disorder is really tying your PM doctor's hands. You can't have much of the new technology like the SCS or the the intrathecal pain pump. Nor can you try the more pin point SCS called a DRG which focuses down to one region, like your right ankle and is really helpful with patients with RSD/CRPS in say a right foot. All of these things are implantable. So, the only things the PM doctor can do for you are the short term things like blocks, or longer term things like radio frequency ablation of nerves. I do think it was a mistake to go for the back surgeries so soon. Your body needed to heal from the Chrohns attack and the subsequent major surgery. Yes, you have inflammatory arthritis, but surgery isn't the way to handle that as your failed surgeries show. You needed to recover from you big surgery, then visit the PM doctor and get started with physical therapy and blocks. Right now I think you once again need to heal from your SCS fiasco, get back into the swing of thing with gentle pool physical therapy before you even attempt any land exercises. If your PM doc has the proper training you he should not be washing his hands of you, you are merely a challenge. LOL, we all need challenges in life or it gets boring is how I looked upon patients like you. I wouldn't do any blocks at this time, I would get a medications regimen going that gets you comfortable and as I said, get physical therapy, perhaps some myofascial release massage therapy, I have personally found acupuncture to help, and then re-visit with how you are doing in 3 months.
Lynn