I am now 3 1/2 weeks post op from having the Boston Scientific SCS implanted at T5. Due to several different spinal conditions from narrowing disc space to bulges to arthritis to fractures and a twisted spinal cord that no one has ever heard of. I was doing well and am a Severely stubborn person. I sat like a good girl a lot the first 2 weeks. I started getting stir crazy and we went out to the store and walked and I did ok. Worst part at the time was muscle spasms that just held on and wouldn't let go. So at the end of week 3 I went back to work. I am an office manager and am up and down, reaching and bending all day every day. I did well but really sore on Monday. Things were not as good on Tuesday. I started having a really sharp pain in the center of my back that feels like its the spine but I'm not a dr. I know it does not feel like muscle spasms. This pain is getitng progressively worse and I called my rep who told me if its bad see my dr or if really bad go to the ER. I HATE ERs so only if I have exhausted everything under the sun will I go there. I cant get in to see the drs in his office until May 1st. One dr called in a Lidocaine patch for me today but is this something I need to go to the ER for? It stops me dead in my tracks and my pain meds I had before surgery are not touching it. Muscle relaxers do nothing either. I've been putting Ice and heat alternately and that helps a little but its still excruciating. I don't want to be a baby which is why I waited 4 days to even say anything but I can't take this pain for another 2 weeks.... Suggestions? ER or what?
You seem to have exhausted all you can on your own. Going to the ER, is a faster way to be seen and maybe by the surgeon who did the implant.
You said you have the paddle. What did they use during your trial, if you went through. Reason I ask. I am 6 wks. Post Op. with the BURST St. Jude Paddle. I am getting no relief at all. Will be seeing my pain mgmt Dr. And the rep on Tues. During my trial, we used it single leads that went up the epidural sack. It took 6 days with a few re programming but then success.
So so you go from a 2 lead trial to a paddle, which is significantly different in looks and programming. You cannot take the parameter from the trial and adapt it to the paddle. Hence in my case, no relief. I too get spasms down right leg. Now my left foot today went absolutely numb. No feeling when walking. My pain is constant and definitely has put a crimp in my style. I was walking 2 miles a day prior to this. Now I can't go food shopping for more than 1/2 hr. Pain sets in and can't walk.
I hope you get relief. I was surprised by your rep kind of washing his hands so early. They say it can take upwards of 6mos with reprogramming and tweaking the battery.
Don't give up. I refuse to. I am talking to Surgeon as well as rep to find a solution. I wish I knew before the final implant, that what was used in the trial could have been done permanently.
There is a light in the tunnel we are in. Hang in there and get medical attention. Good luck and keep me posted as to how you are doing. I started a discussion called BURST Implant surgery. There are others who have then paddle also.
Dee
I believe uve done to much to soon rest up
Maybe you are right. LOL
Good Morning,
Thanks for the reply. The paddle was how I had to go because of the twist in my spinal cord I got no stimulation on the upper left side of my back where I needed it. So they had to do the paddle. I am getting relief of the nerve pain already. I had it throughout my back upper and lower and radiating down my right leg to my foot and it was starting to go down the left. SO that part of it is working rght and I am thankful. This pain I have now is not neuro and doesn't feel muscular. I had a lot of muscle cramps the first 3 weeks adn muscle relaxers helped a lot but this is a sharp pain that feels like a burning hot knife is cutting into my spine. It's so extreme.
My rep called another dr in my clinic and tried to get me seen but they just dont have any appointments. I could see hte neuro possibly but he can not give any meds. Which would leave me feeling the same pain.
I got the lidocaine patches they called out last night and it took off the top part of the pain but it seriously goes all the way down to my spine and I don't think this patch can help that. Also I can only use it for 12 hours and the rest of the day I'm back in this position.....
I woke up hurting bad again and on my way to work broke out in tears again. I hate the ER and I hate feeling like they are judging me. However I don't feel I have much choice. I'll try to make it through 1 at work and then have my wife bring me. This sux!
You are mess. You are much worse than me. I guess I should be quiet as when I get on see how other people have. I say I am lucky? But we all think our pain is the worst. I feel for you. I hope you get some help soon.
Where do you live if you don't mind me askin. I live in New York, USA in case you are not from this side of the pond. I threw my back brace on today while I did some laundry. Grandkids came over and vacuumed my stairs. So totally grateful. Then we played cards. Fun time.
Take care of yourself. Will be looking for updates. Enjoy the rest of the day.
Dee
Well, I am sorry I haven't been around, I am a retired pain management doc so I can try to help here. I do believe that even with the leads we aren't allowed back to work at 3 weeks ( and I say we because I have an SCS put in Feb 13 with leads), especially not a job with all sorts of bending. The reason for this is it takes a good 6-7 weeks for the leads or the paddle to scar into place in the epidural space. You didn't give your body enough time for that paddle to scar down in place where they put it. I am guessing that the dang thing moved and that's why you are having such dire pain. The lidocaine patches really only penetrate down into the skin and muscle layers so all they are doing is helping with the probable muscle spasms you are having in response to the pain from the paddle poking whatever it's poking. You need to see the surgeon who put it in, I know he can't write pain meds, but that is the least of your concerns, if the problem is that the paddle isn't in the right place, then it needs to be put back in place. One thing you might try is turning it off and see if the bad pain goes away. The stimulation might be irritating a nerve as it it exiting the spinal cord. You might have to just keep it shut off and go without the stimulator until you straighten out the problem. Oh, if you don't know how to turn it off, you put that magnet they should have given you over top of the generator and that turns it off. If you are unsure, call your rep and ask him or her to help you turn it off. Tell them you are trying to see if turning it off will stop the horrible pain. Going to the ER will just get you a shot of some pain med, they won't have a clue how to help you with an SCS problem. I hope that helps.
Thank you so much for the reply and info. I did end up going to the ER because I couldn't take the pain any longer. The took an xray and it does appear to be where it belongs. What blew my mind is when I first saw him before surgery he said that because I only had limited paid time off that he only requires 2 weeks with extreme restrictions. After that I could return to work and go back to doing things as I felt up to it. So I was doing like I was first told. After surgery he told me that I needed to give it more time and let it scar in more because of how difficult it was to place. I waited 3 weeks and was trying to be easy on myself but obviously I was not successful. The ER dr called my surgeon and they both agree I just p*ssed it off really bad. Are they just going to make me suffer until it does get better?
It really is unbearable at times. I am the sole source of income for my family right now as my wife is a fulltime student. So I don't have the option of staying home. I talked with my boss and am going to do half days so that I at least have some income but I'm still hurting so bad.
I understand how my SCS works and how to turn it off. During the trial the leads moved and I remember that pain vividly. Its not the same kind I have now. Initially it was muscle spasms from shoulders down to about bra line. The muscle relaxers were helping that and I was managing ok. Now this pain is directly over, Under really, the incision and feels like it is at the bone. Its extremely sharp and feels like a burning knife going into my spine. When it stikes, it doesn't just go away, it keeps burning for a while. There's a nearly constant burning sensation in there. I don't have to be moving at all for it to start either. Laying still in bed last night it was doing it.
I still have full stimulation in all areas from my head down to the bottom of my feet.
I'm waiting to hear back from PM and trying to reach out to Neuro like ER dr told me to. This just royally sucks!
Good Morning Dee,
I live in Austin, Tx. I hate complaining but you guys/gals don't judge and have an understanding of pain that most people don't.
I was looking at my MRI reports last night and there are a few terms written on it that I didn't understand....
C2-C6 I have mild facet Hypertrophy
C3-C5 Mild Osteophytic Ridging and unconvertable spurring
T12-L1 Moderate Disc desiccation with loss of volume
L1-L2 - L4-L5 Mild to Moderate Facet Arthroplasty
L5-S1 Mild disc desiccation and mild - moderate facet arthroplasty
Thoracis spinal cord has a counterclockwise rotation beginning at the cervicothoracic junction to 90 degrees and essencially completely sideways at the level of T5-T9 and gently rotates back to a nearly normal position at the tip of the conus...
I just had a Spinal cord stimulator implanted because the Neuro surgeon didn't want to do fusions.
I've also had 4 surgeries on my right knee and will have to have a knee replacement because the surgeon who did my 3rd surgery botched the job and there is a deformity in the bone too.
I don't want my life to revolve around how much pain I am in. This is supposed to be the good years and I feel like an old woman because I'm in constant pain. Now worse than ever because of pushing myself too hard too soon after surgery.....
I don't usually think about it and manage to have a good attitude and indominable spirit. However, it is becoming a bit more difficult to do these days.
I'm so glad that you had a good visit with the grandkids! That's awesome!
Pain is pain and I don't think anyone can say that their pain is worse. We all feel it differently and I am sorry that your having to deal with it too. I hope that you have a good week.
Anna
Well, have you tried turning it off during the pain? The trial is done with leads in, not a paddle, so when leads get displaced it may be a very different feeling than when a paddle gets displaced. Also, taking an xray is just a very gross way of telling where something is and is really only one dimension or two if they took front and side pictures. It's not a 3-D image of where that paddle is in relation to your nerves, so your paddle still could not be in the right place where your surgeon placed it, but still be in the general region. It could be twisted just a tiny bit and the ER doc isn't going to be able to tell that from those two dimensions. An off kilter paddle isn't going to feel the same at all as your off kilter leads did. Talk to Dee on here, her trial with the leads went great, but her experience with the paddles so far has been far from rosy. I still think you should try turning the thing off when you get the pain and see if the pain goes away.
I tried that last week for one of the nights. I left it off all night and still had the same burning slicing pain when I woke up. I do understand what your saying though.
I just got off the phone with the surgeons nurse and she said they can try calling in a steriod pack but thats all she thinks they can do. Still no word back from the other dr either. It's not like I don't have a good reason to be in pain and it's not like I've been gobbling up all kinds of meds either. Ive only been taking what I had been before surgery. They allowed 2 more pills a day for 5 days right after surgery but I didn't ask for any more. I was managing fine with the muscle relaxers until last week.
I did reply to Dee. She seems like a sweet lady and I am so appreciative for you as well.
Hi. Seems like we sort of have the same issue. Like you that leg pain still exists if stim is on or off.
The strange thing is that that during the trial with the 2 leads, I got measured relief after 6 days. So I know in my heart and brain that the stim can eliminate, to a degree the leg pain. The problem is you cannot take a success from the 2 leads and program it into the paddle. I firmly believe the problem is the paddle. I might ask the mother ifball questions, "What are my chances in a) either finding a solution with the paddle or 2) getting paddle out and inserting leads in permanently???" I suspect their answer might be, "Not a snowballs chance in hell!!!!" LMAO. So back to drawing board we go.
I hope you find an and. soon. Lynn being a retired doc in this field is my go to person on here. So,pick her brains. She has plenty and won't miss the few we use. LOL. Good luck and keep me posted.
Dee
Yeah, they gave me a steroid dose pack when my generator slipped into the wrong spot and was on top of my sciatic nerve. My doc didn't want to move it and was trying to buy time for it to build up scar tissue around it so it wasn't pressing on the nerve. It helped for about a week. So, the pack might do you some temporary good too, I think that's a great idea for now until you can get in for an appointment.
Hi. You have had so much done that your pain is twofold. Surgical and stimulator. When you have double pain, it all seems to run together after awhile you don't know what hurts more. It seems to all melt together.
I too have some of your issues. These certainly don't help that's for sure. You like some of us who just had their surgery, are all having various degrees of pain.
I found that this site offers so much information from different countries with different health care systems. Some seem better than others.
You are right, there is no judgement on here. We can't judge anyone as we all have different pain levels. So feel free to ask anyone anything. Pretty sure someone will have the answer. I sure have asked many people for answers.
The only advice I would give you....pace yourself. When you feel pain stop. I have had to learn to,take my own advice. It is not easy.
Good luck, feel better soon and rest up.
Dee
Hi Anna!
if you don't mind me asking what neurosurgeon did you implantation? Did they not explain the leads can be placed permanently? I had my lower thoracolumbar SCS implanted in May 2017 and have had excellent results just as I did in my trial.
Last week we attempted a cervicothoracic SCS trial that was aborted because the leads would feed through my stenosis so I've been referred to a neurosurgeon for a possible laminectomy in order to place paddle (or hopefully the leads once the bone is gone) to covet from my bra strap up. I was curious as to the difference between the leads I already have and work fantastic versus the paddle we may have to use for my upper thoracic and cervical area.
I too have hypertrophy as well as anteriolethesis and multiple other issues. My cousin uses a fantastic neurosurgeon in Austin who's done great work for her.
Hi Dee, my name is Joy and I'm new to the forum. Needed someone to talk t to see if I can get some understanding, I have a scam now for14 months first 7 months OH!!! what a relief it was to be out of pain 100% them for some unknown reason my and malfunction, it stop stimulating the areas of pain and I say at 1000 mph went straight to my knees in which it pushed my patella ut of the groove of the knees so lucky me more pain more Drs. and back on meds. Dr, NP and rep says scam couldn't have done this, sorry I'm not a Dr but I am me, why no stimulation to areas of pain but just around the knees. Wanting to know if you or someone you have talked to ever heard of this. My rep told me not to bother the Dr's they just put them in and take them out. Did get reprogram with the burst but it did go back to the areas of pain but it is on low volume can tell It's working because knees are hurting after turning it back on looking for help plz and do hope this find you doing well now,thx, Joy
I have Had mine in Since june 21st 2017 an i will never suggest this to anyone. I have never Had a
Fusion or discectomy. Like i should have gotten. Done. Taken. Care. Of. Before this but no good old doctor s insist that because of my age wait but we will do this that has done nothing. For my pain or my spina bifida occulta or my 6 herniated. Discs. Or my si fractures an so forth. An trying to tell your rep. Is like talking to a brick. Wall. All they want is $$ an trying to find a spine doctor. To touch ur back afterwards. To help you 99.9% wont. Even look at u. Because of the risk. I had to get an attorney. So I can get my scs taken out! An i cant wait on Jan.31st 2018 @7:45am i will finally have this electricuting. Painfull implant out of my back!
I Would suggest for everyone That has Had issues. Get it out. Trust me. Its more dangerous then good an safe. Ive been electricuted internally. It doesnt help my pain in increases. It.š
Well I fought hard to make it work but after 9 months being in more pain than I started out in, I gave up. I had it removed on Jan 3 and Iām so thankful I did. I knew the moment I woke up that it was better. I no longer feel like my muscles are about to rip.
I will have some nerve issues that might take some time to resolve but itās finally better.... weāll upper back anyway.
My mid and low back are really bad though. The drs wouldnāt do anything with the low back until my upper back was better. So now that Iāve finally gotten improvement in upper, Iām hopeful that something will be able to help my lower back.
Thanks to all of you who wrote encouraging messages and support. You gave me hope, courage and made me feel like Iām not alone. I appreciate it.
Got stem cell injection in my right knee on Jan 11 and hoping it will regenerate my cartilage and hold off a total knee replacement and surgery #5 on it. Iāll let yāall know how it goes and if they provide relief.
Does a person want the leads and paddles to "scar" in and then if they decide to take it out there are problems because leads are scar encased? I am new to this. I have had spinal surgery, 6 tmj surgeries including jaw joint replacements and many other things. Thinking about boston scientific but have not talked with neurosurgeon just pain doc. Thanks, blessings, Tim
Hi Tim,
I just got my SCS in Dec. 2017 and opted for the paddles and am still healing. The paddles were suggested by both my pain management doctor and my Neurosurgeon because they āscar into placeā for a younger person and are more effective as they hold the leads directly over the nerves. During surgery for the paddle implant they conduct Neuromodulatuon tests to make certain that the target areas are being serviced. This is a HUGE benefit over just getting the leads as it provides stability for the leads so they donāt move around in your body, especially if you are younger and active. I am still in the process of healing, allowing the leads to scar into place, but was told the paddles will not have to ever be removed, just the unit will be switched out when the battery dies. I was also looking at Boston Scientific but my pain management doctor (who is phenomenal) has had better luck with the St. Jude model covering lower back issues, so I went with that and have had great relief! I hope at least some of this information was helpful and would be glad to answer any other questions you may have. Overall, I think this may be a life changing device for me. Good luck!