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Anyone had SCS in both cervical and lumbar? spinal cord stimulator
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imachildagain posted:
Have lumbar which has been a miracle for me, but they're playing around for years with my neck, 21 all together, and the pain is getting unbearable and headaches made twice as bad after this last cervical C3-C7 nerve cutting (my 6th). After 17 days I think it's improving slightly, but still having to take loads of pain meds to keep it under control. Medtronics tells me they do have them for cervical, but I hadn't talked to any one who had it done. Wondered whether they are as successful as the lumbar versions.
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bj1208 responded:
Hi imachildagain - i think i've already told you about my experience with the trial version on my lower back -

just wanted to bump your post to the top to see if anyone has had it in both lower back and in neck -

let us know what happens - take care - Joy~~
 
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imachildagain replied to bj1208's response:
Thanks Joy, yes I remember your name, and wasn't it yours that actually made it worse??

When I spoke to a Medtronics rep, he talked about the ones in your neck working for arm nerve pain. I have mainly moderate nerve pain and ache in my left arm, but seems it would be coming from the top nerves. If it can control the arms, seems possible it could control the other cervical pain, hopefully down as far as the waist.

Maybe it's just wishful thinking, but I feel so desperate to not live my life on heavy drugs that are doing a real number on my stomach which is threatening to me as I've had the gastric bypass 7 years ago and can't afford to hurt my pouch (new stomach).

Sure hope someone has had the cervical implant that can shed some light on this.
 
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bj1208 replied to imachildagain's response:
hi - yes it was me that when I had the trail implant leads that it made the pains in my legs go away but made the pains in my lower back hurt worse - trifold - i was at home curled up in a fetal position crying for 4 hours - the sales rep called to see how I was doing - he had me do all sorts of adjustments - and every time I turned it off my back pains went back down to their normal state but the pains in my legs came back - so he had me leave it off and said to come in in the morning to have it removed as he said I was ATYPICAL (he he didn't know what that meant - means what works for others does not work for me - so far has held true)

since I've done all the treatments and so far more surgery is out of the question (gonna see if I can get new MRI and go for another opinion) but my pain doc keeps asking me what I think about the pain pump - at first I was all for it - but then hubby and I watched a video on it and he freaked saying it was too barbaric - and now i'm having 2nd thoughts -

just heard that 2 women around where I live just had the pain pumps installed - one came home sat in chair and asked for glass of water and killed over - the other one passed away in her sleep the 3rd night she was home -

seems that when you have this done - it's a trial for 7 days then you stay in hospital for a week or so while they get the permanent one installed and adjust medicine levels -

well in both instances of these women the leads had come out around the first day in the hospital (2 different hospitals - and different docs - different sales reps on products) so they were getting toxic levels of pain meds in their bodies -

that scares me so much and i really have hard time saying yes to this - and if i'm ATYPICAL then i'm really scared this won't work -

anyway it's a big choice so hope you can get the relief you r looking for - take care - Joy~~
 
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imachildagain replied to bj1208's response:
Wow Joy, in here was the first I'm heard about the pain pump, and after what you've related, I doubt I'd consider that. Oral medications from others tell me work, but I mentally couldn't handle the strong stuff and took myself off (that is anything stronger than the Norco and I still hate taking it). But I log every med when I take it, the amount of Tylenol I'm getting to save my liver and take with some kind of food to preserve my stomach.

I hate the trial you had, to be optimistic and then have that happen is such a slap in the face. I've been referring to these spinal cuttings as a 6 month band aid, but last one didn't work and this one has 3x the normal pain for 17 days and now I'm back to normal pain, and after 3 weeks, still no relief.

I have to research more, others have been telling me massage, acupuncture, etc., but I've got a lot of research to do. Obviously I'm beginning to see a trend, it seems to be different for everyone. I've maxed out my meds 3 days in a row and headaches are worse, I'm so tense I can't relax, and work just to try to pull myself out of the pain....works for a bit, then I crash.

Answers, I just don't know anymore.
 
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bj1208 replied to imachildagain's response:
are u taking a muscle relaxer with the pain meds??? i can't remember all that we spoke about (darn pain meds! LOL makes ya forget things)

One thing - pain meds - sometimes they will make u have headaches - one of the side effects - i have cluster migraines and when I have an attack the pain meds i take do nothing - usually have to just let it run it's course -

the narco's are good for pain but when I was on them I was taking 120 tabs every 2 weeks - that was the 10/325 and did that up til my surgery - about 5 months then after surgery my pain meds have increased to what i'm taking now - think i already told ya - 60mg morphine sulfate 4X daily; 15mg oxycodone every 4 hours not to go over 6 tabs daily; gabapentin (generic for Neurontin) 3600mg daily for nerve damage in legs -

this is a good combo for me - i've tried methadone for about 6 days - made me itch so bad and even taking benadryl i still itched real bad - so then they put me on Opana - which I told them it was expensive but the PM gal said OH NO, THIS IS CHEAPER - 7 day supply was $170 - I brought in receipt to show them - and they put me back on what i'm taking - been on this does for a year and it's not working as well so think they will have to up the morphine and oxycodone -

take care let us know what happens - Joy~~
 
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imachildagain replied to bj1208's response:
I take Norco 10/325, Vicodin ES 7.5/750, Tramadol 50, Tylenol (always count all amounts to make sure I don't overdo it), lots of coffee for headaches, Valium, Ativan, Neurontin. I think that's it. The Valium is to relax but I only take at bedtime as it puts me to sleep during the day as does the Neurontin and Ativan. I've been the route for 9 months with pain specialist and they had me on 7 meds including Oxycodone and monthly Cortisone, and every visit (no exaggerating at all) was 4 hour waits. I finally called the shots and went to the Neurosurgeon to find out bone spurs, 2 missing discs cervical and lumbar. I have a lot more research to do and a lot more thinking, but have 2 weeks until I see the doc and will be prepared. I only take 600 mg Neurontin, so may see if I can get into the Neurosurgeon and see about it. As he isn't going to do any surgery though, I'm not sure he can advise me much, but is still prescribing meds for the last year.

Thanks for all the input, the quantities and what other people do help me to research what to do. What I was reading yesterday is a problem I have since I've had the gastric bypass and absorption of these narcotics people have 50% or less absorption rate, so now I'm wondering. I always wondered why they said Norco for 4-6 hours and 2 of them lasts me 1 1/2 hours to 2 hours max, then I have to take Tramadol to tide me through. Also research chewing the Norco and with my lack of stomach acid after the bypass, it takes nearly 45 minutes for Norco to work, chewing it I'm getting relief in 10, and most people have said it's okay. They referred to something on Mayo Clinic re: this, but I couldn't find it. If I chew to a powder (could crush but they are really tough) and put under my tongue sublingually, it absorbs really fast.
 
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bj1208 replied to imachildagain's response:
hey there! LOL seems we are speaking a lot to each other - but that's what the support group is all about!!

when u see the surgeon u may want to discuss your future as it relates to pain meds - I know surgeons will usually prescribe it once you have surgery and up until they release you (as in they have done all they can) - then they tell you to seek other options - either primary care doc to prescribe meds (which they normally will not prescribe heavy narcotics) or refer you to a pain clinic -

you may want to ask if it would be best for you to see a pain clinic where they have PHYSIATRISTS in their name - these types of pain clinics go deeper into treating chronic pains than regular pain clinics.

you have a lot of breakthru pains (same as I do) and the narco would only last me about the same for 1 1/2 hours - but this was all before my surgery - ugh now it's worse and i'm on heavier narcotics -

when taking oral pain meds by the time the absorption has taken place only a small percentage of pain meds actually reaches the target - so that's why it's not lasting as long - and since u've had the gastric by-pass surgery i can see where u have problems there -

oh I forgot I also take .25mg xanyx - but my mom is living with us (she is 75) and has dementia - and it's hard for me to not get agitated so I do take these - I cut then in 1/2 cause i'm not used to them (been taking them for 4 months now) and they really affect me - so I usually take them when I am home -

i would ask the surgeon about the future of your pain meds and who should do those - but see if there is a PHYSIATRIST PAIN MANAGEMENT CLINIC in your area - I truly have full faith in what they do -

take care - Joy~~
 
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imachildagain replied to bj1208's response:
Thanks Joy, left quickly for 8 days to CA as my Mom wasn't going to make it. Somehow she has so far and has had major surgeries, still d-fib, bp problems up/down, and much else. But I finally had to come home. My body couldn't take any more. I left so quickly I left my charger for the Medtronics implant and freaked, but a wonderful rep loaned me one and created some new settings. I'll see her in about 3 weeks and if this spinal cord doc is not going to listen to me, because this C3-C7 nerve cutting did not work and headaches and neck/back pain are still what I would say are moderate/severe. So after all these years and procedures, I want to try the cervical spinal cord stim test. The C3-C7 block worked perfectly, but the radiofrequency nothing. If he won't, I'm switching insurance to this state, and Medtronics will work with me to get a specialist. If that doesn't work then I feel like the only answer is pain management. I'm already working closely with a Psychatrist for the past 15 years and he's an expert with my stress factors, and some chemical imbalances. He pays attention to every med prescribed to me and makes sure I can handle it. We'll see what this sanctimonious doc has to say next. My answer may be bye-bye.
 
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bj1208 replied to imachildagain's response:
hi imachildagain - sorry to hear about your mom - hope and pray she will get better. I know what it's like having a parent that is ill - we have a large house - kinda 3 stories - 5 bedrooms and 3 bathrooms - my hubby and I, my youngest daughter (20), my hubby's father, and my mom all live here!!

my mom (70) has dementia and a bad back - she can't drive so I take her to all her appointments. My father-n-law (79) just recently decided to stop driving except to grocery store and now I am driving him to his appointments.

So I became the family chauffeur - my hubby is the only one employed, I get disability and both parents get their social security plus their retirement savings - so what a wacky family!!! LOL

I do hope that you can get the answers you are looking for - and that your mom gets well - take care - Joy~~
 
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imachildagain replied to bj1208's response:
Thanks Joy, my answers hopefully will come in several weeks, or not. Depends on if the doc has an open mind.

We went through 11 years with my father-in-law, then 3 years with mom-in-law (last 6 months in our house through hospice), a lot with my 97 year old and 102 year old grandmothers, now Mom. But they're releasing her to a rehab. The problem is most of the time she gives up and that stops progress. Doubt she'll be able to walk again, but this is her M.O., and nothing we can do. We can motivate her for a day, but then it goes downhill.
 
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bj1208 replied to imachildagain's response:
I understand about the motivation - it's hard to try to get someone motivated.

I've had a lot of friends and webmd members ask how I do what I do - how I get out of bed etc.

Mine is my wonderful hubby, and the rest of our household (even as nutty as we are! LOL) and most important are our grandchildren - my hubby has 3 with one on the way and I have 2 - my oldest daughter (23) has 2 boys (ages 4 1/2 and 3) and both are AUTISTIC - and the boys are my life - they live an hour north of us and so I don't make the trip that much and they don't understand why grandma can't pick them up - but they are still the light of my eyes.

So this is my motivation to get out of bed every day -

I'm sure you have gone thru just about everything in the book for your mom and I do hope and pray that she will see the light to keep fighting.

take care - Joy~~
 
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imachildagain replied to bj1208's response:
Thanks Joy, hearing others take me out of this place and give me more resolve. It's 8 hours one way to get to where my Mom and kids and grandkids and with a super snowstorm hitting this weekend will make trips longer. My docs are all still in CA until I get insurance changed, but it's so much cheaper there right now. But if I get flack from this spine doc, I may switch. On a fixed income makes it very hard.
 
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gabbybb responded:
Hi,

I had the trial in Sept this year for my cervical stim.The trial was a nightmare.

The trial was painful, but the acual implant was much easier. I haven't been able to do much since I broke my neck a few years ago, so I am really looking forward to some relief, and maybe even lowering my meds, as they make me extremely sick to my stomach. My fracture was at: C-1,C-2, plus a bunch of ruptured discs and the like.


Good Luck!
Gabby
 
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imachildagain replied to gabbybb's response:
Wow gabbybb, you have a nightmare of an injury. I wish the best for you. When was the implant. Wondered how it was helping. I'm hoping to get a cervical one in addition to the lumber implant I have that is highly successful.


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