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Posted By : AnnaB114 - 3/8/2017 12:03 PM
Good Morning all,
I am writing in because I can't really seem to get anyone to respond to me on any other forums I've tried so far. I'll give a brief history and then my current situation.
I started having back pain at 18 pretty severely. Found our I had 5 bulging disks and DDD. At 24 I found out I had Fibromyalgia and advanced early osteo arthritis.
It's progressively gotten worse over the last 6-7 years especially.
So I asked my PM dr to do an MRI of all 3 sections because I started having numbness in my arms and legs and pain going down my right leg. He called me a week later saying they found some unusual results. The radiologist was in shock and had never even seen or heard of anyone having this. They found that my spinal cord starts a clockwise rotation at the beginning of the Thoracic spine and by mid thoracic its 90 degrees or completely sideways and then it starts to rotate counter clockwise until the end of thoracic where it goes back to near normal.
They since decided that there is no surgical option to fix it and there is nothing tethering my cord this way.
Now I at least have an answer as to why my back has hurt so bad for so long. They want to do a SCS with Paddle leads and surgery is scheduled for March 27th. I still work fulltime but am not able to do even half of what I could last year. I used to be able to lift a 150 pound disabled lady , dead weight all by myself every day for 4 years while I took care of her. Now I'm so frustrated and almost disgusted with myself because I cant lift 75 pounds without there being really sharp pain that wont just go away. Lately I've not even been able to make it through the night without waking half a dozen times, even with sleep rx because I am hurting so bad it wakes me.
I'm trying to be hopeful about the SCS and that it will help me to not feel as much of the pain. I had the trial early last month and I did notice some improvement early on but the lead moved and was pressing on a nerve root causing even more pain in a new area. So I had them pull it out a day early but it was in long enough and I was able to distinguish the difference between pre trial pain and the relief I got from the trial in those same areas.
I'm really hoping to minimize my stay at home both because the business I help manage goes to *&(* without me here and because I love my job and the people I work with are very much like family.
So all of this is to ask what your experience with the paddle lead implants are and how long before you were able to return to work or if retired/disabled, how long before you were comfortable enough to start returning to normal activities?
I would really appreciate any insight that yall might have. My wife and I have no kids so that's good at least. I have talked with several friends who are willing to come stay with us for a few hours as needed during recovery. She isn't able to do much for helping me because she has a grade 3 spondelosthesis...I think I spelled that wrong but she cant even stand for 5 minutes right now. She'll be having surgery this summer once college classes let out so she can recover before returning to school to get her degree. Its a mess. Not to mention that we are going on our honeymoon Saturday!!! So pumped but sadly not sure how much I'll be able to do because of pain. Anyway, all help and info positive or negative will be appreciated.

Posted By : straydog - 3/8/2017 12:29 PM
Hello & welcome to the forum. We have had numerous people come through the forum that has SCS units implanted. Some with leads & a few with paddles. Unfortunately since this is a chronic pain forum we saw more failures than successful implants. This is not to say yours will not be a success.

From what has been posted here by different people the surgery was pretty rough. The drs tended to down play the surgery to a lot of them. Since you are having paddles put in it may take you a little longer to recover. I am strictly guessing but maybe at least a good 8 weeks or so, everyone heals differently. What did the dr tell you on the recovery?

Have you spoken with your dr at length about the type of work you do? You indicate you do a lot of lifting so you need to talk to him about this, this may be something you cannot do right away.

I am sorry I cannot give much info however, you can use the search feature at the top & type in SCS units & read old threads about them. We do ask that you not post on those old threads as most likely the member is no longer active here at Healing Well.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 3/8/2017 2:11 PM
I've been reading a lot of them and did hear some of the horror stories. I just refuse to lose hope. I'm too young. Even through a severely abusive childhood I never lost hope. I still believe that there is good and that good things can and do happen. There are people who have amazing outcomes but there are those who have very bad outcomes as well.
Right now I manage an office and we do custom builds on golf carts and I do the office work and walk the lot with customers doing sales mostly these days. I used to be able to move everything that these guys are able to do without a second thought but in the past year have lost the ability to do that. I've noticed some weakness in my legs recently too. I assume its progression but I refuse to get down and pity myself. I'm not of the mind that everything will be perfect because I know firsthand that things rarely go perfectly. (Had 4 surgeries on my right knee and am waiting to have a TKR now too)
The guys here are very good to me. The wont let me move heavy stuff and try to help as much as they can. I am stubbornly independent and don't like asking for help but in preparation for the surgery I do have a few people willing to come over to help.
The NS said he gives restrictions for 2 weeks after the surgery and then after that I can do anything I feel up to doing. I hope that everything works out well. I'll keep my fingers crossed. If anyone else wants to chime in, I would welcome any other comments.
Thank you Susie for taking the time to respond. I appreciate it very much!

Posted By : straydog - 3/8/2017 2:15 PM
Do you know what unit the dr will be using? I have seen more success stories here with the Boston Scientist units than any of the others.

I wish you the very best & hope this will be successful for you. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 3/8/2017 2:36 PM
I am getting the Boston Scientific unit. The rep I worked with during the trial was really great. He is an absolute sweetheart! Because of the rarity of my particular situation and the fact that no one I've asked has ever heard of it, there were 3 reps from BS the day I got the trial implant. They couldn't acquire stimulation on the left side of my upper back because of the rotation of my spinal cord. No matter what they tried it just doubled the right sided stimulation. So that's another part of why they are going with the paddle. They are going a little higher to reach the upper left back but still have to deal with lower back and pain radiating into my hips and legs as well. So it might be interesting but they all sound pretty confident that it can be done. He said that if this didn't work then several fusions would be the last option but he didn't want to start that because the damage is pretty extensive and he "wouldn't know where to stop" So I know this is the least invasive option for me right now because meds, PT, injections etc. are not working anymore. Thanks so much for your encouragement and positive thoughts. It helps reinforce my own.

Posted By : straydog - 3/11/2017 12:04 PM
AnnaB, something I want to mention to you about these units. In the event you have a glitch or something with your unit & you will, that just comes with the package. Your PM dr will be of no help at all, the drs knows nothing about how to maintain these units. If you call them you will be told to contact your rep.

Another thing so many encounter with the units, is after a while goes by & you get to the point of needing it tweaked, make sure your insurance will pay for this. It costs several thousand dollars to tweak them & the rep will not doing anything unless its authorized by your insurance. This has happened with so many the insurance not wanting to pay for this expense & dragging their feet. The first year is usually not a problem but beyond that there can be problems.

Let us know when you get your implant done. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 3/11/2017 12:21 PM
Thank you so very much for that Susie. I really appreciate any and all of the info I can get.

Posted By : Mrs Muggles - 3/19/2017 5:51 PM
Hi Annb114,

I have a Boston Scientific Scs which has been implanted since 2006. I had mine put in for chronic sciatic nerve pain from scar tissue which formed around the sciatic nerve. I have suffered from chronic back and leg pain for over 25 years due to a botched epidural whilst in labour. I have found the scs a godsend for the nerve pain but I am really sorry to say that it did nothing for my back pain. They even reprogrammed it several times to try and get more coverage with the leads but it didn't make any difference. My pain specialist told me that most of the patients who do well with the scs are nerve pain sufferers as it is so hard to get a good result for back pain. He has been so supportive trying to find solutions for me. I also had several boston reps when I had my implant. They are very nice to work with. My scs is rechargeable and the battery inside should last about 25 years if I am lucky and I am a very heavy user.
I have recently, after reaching the end of the road with my agonising, constant back pain as I have tried everything from fusion to drugs to scs, rf ablation and finally I have had an amazing result - from a Medtronics s2 interthecal targeted drug delivery pump, a morphine pump. Please read my new post ' new pump, new lifeline' for more information about this device. But basically, the medications is directed directly to the area of pain in the back. Because it is going to this specific area there are several major advantages.. 1st because it is going there directly you only need about 1 hundredth of the dose you take orally. 2nd you don't have the opioids having to be broken down by the liver so you not only don't risk continuing to damage your liver, it doesn't affect digestion, the brain etc, so no more constipation issues and mental fogginess problems.
The pump is not without any negatives but for me as I haven't been able to sit down and stand for longer than I can remember, it has given me a chance of getting on with my life again and I am only 49 so hopefully I have a fair few decades to live a much better quality of life.
Please feel free to message me if you would like to know any other information about the scs or anything else. I am more than happy to help you if I can.
I am in the UK but I'mpretty sure procedures are similar.
I wish you all the best

Posted By : AnnaB114 - 4/21/2017 8:02 AM
So I had the implant done on March 27th. They implanted it at T-5 and because of the twist in my spinal cord it was even more complicated and invasive. It took a long time to get the pain under control while in recovery at the hospital. I think comparatively I am doing fairly well. I was able to shower 3 days later and went to the store and walked around a little while at 5 days. It kinda went downhill from there. I had severe muscle spasms that were almost constant. So he upped my muscle relaxers and that helped some. At 3 weeks I came back to work. The first day I was super sore but made it through. Each day since that time, its gone further downhill though. I'm maxing my meds which are the same I had pre surgery and its not touching the pain. I know I'm still getting excellent stimulation from Shoulders down to my feet on both sides so it doesn't appear to have moved.
It was muscle cramps and spasms and muscle soreness before I came back to work. Now I have a really sharp pain right along my spine that just hits me out of nowhere and I nearly scream and have a sharp pain all the way under my shoulder blade. I don't know if this is normal or not. I talked with my BS guy and he said to call the dr if it doesn't go away. Its been 4 days and it just keeps getting worse. Is that long enough?

Posted By : straydog - 4/21/2017 11:38 AM
Annie call your dr ASAP. I am not a dr so I cannot give any advice nor would it be allowed here, get in to the see the dr.. This appears to be different from your post op pain & it should be checked.

Let us know what you find out. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 4/21/2017 2:51 PM
I tried calling them but the earliest anyone at his office can see me is May 1st. One of the Drs calle din a Lidocaine patch. I guess since the stimulator is working they aren't worried about it. I'll give this a try and just call them back if it doesn't help... I might go to the hospital this weekend if it doesnt work though.... I HATE going to the hospital. I always feel like they judge so bad.

Posted By : straydog - 4/21/2017 4:23 PM
Annie, that is ridiculous setting you that far out. I hasn't been that long since your implant. If the Lidocaine doesn't help you may have to go to ER.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 4/22/2017 7:45 AM
So I used the patch last night and it helped some with the pain closer to the surface but not where it originates, spine. I can't miss anymore work without possibly losing my job. I am the sole provider for my family so that isn't an option. I'm going to try to make it through 1 when we close and then if its as bad as it was when I woke up, I'm just going to have to have my wife bring me to the ER.

Posted By : AnnaB114 - 4/28/2017 12:34 PM
Its been several days and 2 trips to the ER because I just couldn't take the pain anymore. I finally get to see my pm today! The first ER visit the dr was wonderful! The 2nd one however treated me like trash. He refused to listen to me about anything and when he lifted my shirt to examine the incision he lifted my bra strap and popped it right on the incision. I had a lidocaine patch on at the time but didn't realize it. He was such a jerk. He said since this is the first time I've seen you here, I have to treat your pain. I have only visited the ER anywhere 2 times in the past 5 years! and it was over the weekend because I couldn't get in to see my Dr until today. I was in tears he made me feel so ashamed and worthless.
I am still in extreme pain and have just today started having some pain radiate to my shoulder but the top or it and down the inside of my upper arm to my elbow. Probably not related to the surgery but it sucks nonetheless.
I just need some relief. I can not not work. I'm the sole earner. I do ice and heat and try the meds I have but its just not working. I'm hoping and praying he will change something. I feel like I let everyone down because I was doing so well in week 3 and now am in so much pain that it even hurts to breath. Wake up at a 7/10 and by 10AM its easily a 9 and spikes to 10.
Was I just expecting too much of myself? The surgeon said I had to be out of work 2 weeks then I could come back. I even waited an extra day. But week 4 kicked my butt so bad that now in week 5 I'm still paying for it.

Posted By : straydog - 4/28/2017 2:02 PM
Anna, I hope your appt goes well with your PM dr.. Yes, going to ER & being in pain usually yields the attitude you got from the nasty dr.

Please know you have let no one down. I was very surprised that you returned to work as quick as you did. Unfortunately, surgeons are not very good at telling patients after surgery when they can return to work. They all go by what they read in school & never once take into consideration that each patient heals differently, let alone how the post op period is for each patient. You are a prime example of what I am talking about. Yes, I do think your expectations of yourself was high.

I understand with you being the sole provider you have to work, no getting around that. At the same time you have to allow yourself to heal. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : AnnaB114 - 4/29/2017 10:08 AM
Good Morning all,
So PM appointment went well. He determined that there is just a large amount of inflammation from both the dissection of the muscles at my spine and where they looped the lines on each side in the muscles. So he changed one muscle relaxer, gave me a steroid pack and increased dose and frequency of my pain med. He gave me a hug afterward too. I really feel so lucky to have him.
Since my appointment I've had a couple changes that are somewhat concerning.... The stimulator will all of a sudden go FULL BLAST in my legs and feet. So much so that it makes it nearly impossible to walk. It almost causes my legs to lock up or give out. Weird. It usually does something similar when I've done too much, which makes some sense because it means I've caused extra swelling which causes more pressure on the unit and everything else internally. So I'm learning to gauge my activity by that. When it gets really strong I just have to stop. Kinda helpful since I've not been the best about listening to my body when I start hurting worse. I've always pushed through until I was finished with the task at hand... Probably explains a lot.
Anyway, I really appreciate all of your encouragement, guidance and support Susie. You are much easier to discuss things with than my wife. She get angry because I'm so stubborn about things. That's what has carried me through up to this point. If I stopped doing stuff when I was hurting, I would have been on disability the moment I turned 18. I can't live with myself like that right now. I need to work while I can, even if it hurts. Obviously I have to modify and reduce my load right now but still. I just have to keep going because if I stop, I might not be able to start again. Thank you!!!!

Posted By : straydog - 4/29/2017 3:34 PM
AnnaB, so glad the appt went well with your dr. Having a good dr goes a very long way. I would keep an eye out on the SCS Unit. If it continues to go full blast, get a hold of your rep so it can be checked.

I do hope for your own good that you will remember your own words about modifying things & listening to your body. Remember, you are in this for the long haul so taking care of you is very important to make the long haul.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

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