Boston Scientific Spinal Cord Stimulator Paddle Post Op

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

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

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

Hi Junebug it looks like its been a long time since anyone got on here. I just had a the simulator placed in my T8 zone ... Today marks the second week and one day since my surgery and both times that i have tried to turn my stimulator on it rails up the nerve pain in my lower extremeties even though when its on appears to help. I also have horrible burning and razor sharp pain at the bra strap area and the battery implant is driving me nuts to say the least... After I turn the stim off I get a sore top of my head I also had this in the trial...

I need this surgery to turn work I lost my job.. And. Have been at home for the past year almost trying to figure out what to do to have purpose in this world. How long after your surgery were you able to use the device?

Did you have the same success in trial as you do now?

When could you go back to work after the surgery?

I got laid off let me rephrase aftee 5 years of dealing a mess.

Good morning all,

I haven't posted on this thread in a while. So I had the surgery to place the implant in March of last year. I had severe increased pain that honestly never went away. I ended up having to take more meds after the implant than I had prior to surgery. I tried and believed and hoped for the best until Dec. I could not take it anymore. If I turned the unit on, within about 20 mins of turning it off I had what felt like a cattle prod being stuck into my back between my shoulder blade and spine. It ws either that or what felt like a jellyfish stinging across my shoulder blades or even a combination of the 2 at the same time. 

I had it removed in Jan and have just found out that the stimulator caused nerve damage that I hope will improve soon. They did their best at finding the "right" placement but because of the twist in my cord they couldn't tell where the normal anatomical rear part of my cord was. It was quite obviously not where the paddle was placed. I am still in a lot of pain and waiting to see what the neuro and pain drs think would be help. I have heard that it can take a while to get the relief. It may be something that would get better with a reprogramming for you. I had about a dozen of them during that time and it never got better. I know several people whose quality of life are vastly improved but it was not my experience. 

I hope you start feeling better very soon. Take care. 

Hi Anna, I’m new on this forum but wanted to say hello and tell you I too am having some trouble/pain from the placement of the paddles as well as the generator.  I had my surgery on Dec. 11, 2018 and STILL have a large scabbed area on the generator site that has not healed.  I feel like it was placed way too high, waist level and definitely interferes with my pants!  The upper scar has healed nicely but my bra irritates that area enough that I cannot wear it for more than an hour or so!  I’m hoping this is temporary?!  The unit does seem to be helping me with pain but I NEVER shut it off?  I’m very curious why you would shut your off?  Have you been instructed to do so or is it bothering you in some way?  Please stay in touch with me.  I don’t know many people who’ve had this done and it helps to share experiences and ideas!  Thanks Anna and I look forward to your response.  ~Tamara

I had to stimulator put in November and it worked great but the area where the battery is never would completely close. Four weeks ago they determined I had MRSA in the battery and decided to take out everything. While in surgery they couldn't take out paddle because of scar tissue. The paddle tested for MRSA too. Was sent home with I. V. Now I have extreme agonizing pain on the middle of my back that feels like something stabbing and twisting. I don't know what is going to happen I'm just disappointed and pained

I hope they figure something out. That’s horrible. I’m sorry your going through this. I had mine placed 3/19

Maybe you are right.  LOL

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!

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 “scar into place” 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 don’t 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!

Hi brianstamara, I am getting the Nevro hf10 with paddle lead on Wednesday, February 14. What was your surgical pain like?  That is my biggest concern right now, second to the fact that I had one percutaneous lead for trial (they couldn’t put in two) and 2) will the paddle be as good?   My trial was amazing.  When did “life” return to normal after surgery?  I appreciate any input.

Hi Kathleen,

Congratulations for making this decision and being pro-active about your pain/life.  I am still healing, it’s been eight weeks now, with the top incision healed nicely and the bottom one still scabbed.  But I believe this is due to a botched job with the staples on the bottom near the unit.  I have had great relief and am no longer needing my Dilaudid XR.  The surgical pain was uncomfortable but bearable.  It was the adjustment to sitting with the two wounds that was the biggest challenge.  I found that a combination of laying on my sides and sitting only for short durations in a very supportive chair was the best combo for me.  They say 6-8 weeks recovery time and I would highly recommend giving yourself at least that long to make sure you heal well.  I did not vary from the instructions much, particularly with regard to housework, as it is super important not to undo any healing you have accomplished.  I could feel the deep, dull ache if I tried to do something that was just too much for the time.  Listen to your body and rest a lot!  Time for some good books and laying very low.  If you can do this I think you will be amazed at the relief you get.  The surgical pain is tolerable with moderate pain meds for the first couple of weeks.  Good luck to you and let me hear how you are doing please?

~ Tamara

Thanks for your prompt response.  Sounds like you are doing pretty well at 8 weeks.  That’s very encouraging!  I will post again after surgery to let you know how it goes.  

Kathy

Good luck Kathleen and I’ll be looking forward to hearing how you are doing!  Sending positive healing thoughts!

I'm replying to this because I see that you are a retired pain management Dr. I had a Bioelectron (now Boston Scientific) stimulator placed 10 years ago and never had a problem. Last year my pain management Dr. suggested that I get the new and improved unit and have a new 16 point contact lead placed. So of course I said sure that would be great, WHAT A MISTAKE!!!! I have had nothing but but problems which started in the OR. They attempted to place the 16 point lead, all of a sudden I had such severe pain in my foot and toes, it felt like someone was ripping my toes and foot off with a vice, of course I started screaming, nobody knew what to do. Never turned the unit on, took out the lead, pain worse, took 3 people to get me in my car. When I went for post OP appt, my dr said he knew I was in trouble when he saw me in recovery room praying and sobbing uncontrollably, because the pain meds ordered did nothing at all. Very disappointed that he left the hospital before I did, especially when I found out he knew I was in trouble, he's been my dr for 14 years and I knew him professionally for years before that, I was a medical asst for a spinal surgeon for 12 years and we referred patients there. Anyway, I would up with full blown CRPS from the surgery. Because my insurance (Workers Comp) wouldn't approve epidurals or sympathetic nerve block I went like this for six weeks with the CRPS spreading to my other foot. Finally, he did the blocks without approval, taking four injections to finally get some relief. A few weeks after that I wound up in a coma with liver functions and ammonia level higher than any of my drs had ever seen. Neither my primary dr or pain mgmt dr thought I was going to make it. Was discharged six days later, home 5 days back to hospital coma again. This time liver functions normal, ammonia a little high at 52, but not bad. Nobody still knows why this happened, diagnosed with hepatic encephalopathy, although no history of cirrhosis (I don't drink at all), no hepatitis, had tests for all. Now the stimulator, I tried to use it again and I used old charger. The charger worked for about 2 weeks, then malfunctioned, they said use new charger, did that, worked one time, then malfunctioned the same way the first one did. But in turning it on, it caused so much pain in my back behind my liver, it took my breath away, so had reprogrammed today and they are sending me new charger tomorrow. If it malfunctions a third battery, I'm having it taken out. I honestly believe that I have a bad unit implanted. I would love your opinion if you think health problems could be due to a bad implant. My dr wants me to go to neurosurgeon to have paddle leads placed, but I'm scared to death that the same thing might happen, or worse! I know this is lengthy, but again I would love your opinion. Thank you.