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Back from SCS trial

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Comments

  • You'll never see a scene in one of those videos with a person sitting on the pot, explaining how their SCS has given their life back, but the effort involved in certain potty activities causes a stimulation spike if you don't turn the SCS off first. =))
  • I don't know what you call young or old, but I am 42 and a single mom to two boys ages 16, and 10. When I went in to have my trial removed I had a list of questions for the doctor. I know he thought I was out of my mind. I asked about being in an accident and not being able to talk to the doctors...would they know how to turn it off, how to care for me. In this area doctors are required to go through a seminar about SCS so they are all well aware of how to treat a patient with one. Now...they don't understand all that goes on and how it works...but they can treat a patient who has one. In an accident they do X-rays and would see the unit and know what it is, thus them sticking me in a MRI wouldn't happen. I further asked about if I every had to have surgery what was the chance they would cut the lead. Please remember I have two under the skin just above the pelvic bone. My doctor told me that if they tried they could cut the lead. He placed them where they would never cut me. Finally I asked about MRI's in general. My doctor told me that the CT was a better diagnostic tool but insurance wouldn't pay because MRI's were cheaper. So basically now my insurance has no reason to deny a CT. Much better diagnostic tool. I too talked to my primary doctor because she would be the one prescribing my pain meds. She was all for it. She said at my age taking so much pain medication would harm my kidneys and liver.

    As for extra care. At night I sit down and evaluate my day. I basically do a daily assessment to remind myself of where I was and how I feel and what I would like to have changed next time I see the rep. I also have a calendar and I mark when I charge so I know how many days before I have to charge again. I do carry my programmer around with me...but I carry a purse so that isn't that big of a deal. I am careful not to bump my implant and protect it but that has become second nature...not something I actually think about. I know I am not that far out...and shouldn't be doing this but I have bent over and picked things up off my living room floor. You do bend different and some of you might be able to tell me if that returns to normal the further out you get.

    I guess basically I have had such a good response that it is just second nature and doesn't interrupt my daily routine at all. I have a portable charger so I just belt it on and go.

    I will say that one thing is I don't like to mess with the programmer in front of people. Family is different...but out in public I go into the bathroom...because I don't want to answer everyone's questions. They have no clue what a TENS unit is and to explain a spinal stimulator would require more time than I want to invest...basically none of their business if you know what I mean. I have had some people look at me strangly when I have the charger belted on...but I look at them and tell them it is a medical device I have to wear sometimes and I don't explain further and they get the hint. So I guess I am saying if you are sensitive to how people look at you...SCS in public is a little unnerving. I on the other hand will tell people, "If I tell you, you will not understand...so just trust me it is a medical device prescribed to me by my doctor." Usually that shuts them up. I did train a couple of people at my work on how to shut the system off with the Mag. just in case of emergency. They were really receptive and asked questions...and I explained the best I could to someone who knows nothing about chronic pain. Since mine involves the pelvic area...it is a little embarrassing...they what to know what cased the pain in the first place...well if I knew that I wouldn't be where I am now...RIGHT?

    For me having those questions answered by my doctor about accidents and future surgeries calmed my nerves. Then I was able to relax and go with my gut on this would reduce my pain meds and buy me time before I had to have surgery or go on much stronger medication. I don't have the inflamation issue so there isn't any extra medication.

    Praise report...I was taking 12 pain pills in a 24 hour period...now I am only taking 6 in the same time period...and I am only 4 weeks post op. If I hadn't done the permanent SCS there were going to change me to a much stronger pain med and the way I was going...by the time I was 45 there wouldn't be anything out there strong enough. Every year for the past 4 years they have uped my meds or changed the type and uped them 6 months later. I don't think my body would of taken much more. In the past 2 years I have lost 50 pound and I didn't have it to loose. Pain meds kept me from eating, at this point I only weight 101 pounds and I am 5'8" tall' Very much underweight. I know this isn't for everyone...so please don't allow what I have said to over ride your gut feeling. I am now a part of my kids lives where before I was there in bed. Now I do things with them and they say I am so much happier. You have to make the decision on what you feel is right for your situation. Don't let anyone here, Reps, or your doctor talk you into something you don't feel is right.

    Sorry this was so long. I hope it helps someone. I knew this was the right thing for me and my boys...and my quality of life...but not right for those that are doing fine on their current treatment.
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  • I have decided to go ahead and get the permanent implant. If I can get the help for my daughter lined up I will be getting it put in on October 29. I know that some of you think that I am too young, but I am not living the quality of life that I want. Now that the SCS is gone my pain is definately back as well as the medication brain fog. I understand that there are tradeoffs, and both options (meds vs SCS) have big side effects or issues that have to be dealt with.

    I have talked it over with my doctors and my family and this is the best option for me. Am I scared about the surgery and the potential issues that I may face-- absolutely. But first the first time in a long time I have hope for a better life.

    Thanks again to everyone who took the time to post with information and support. I really appreciate it.

    Julie
  • I don't think your to young, you just need to be aware of and learn to live with it. Once it is in and it is healed for most people it gets to be pretty routine.

    When it was hot this summer I went for days not even turning mine on. Just knowing it is there when I need it is enough.

    Now that it is getting cold the pain is worse, always has been worse in the cold. I overdid some things this last weekend and reminded myself of just how screwed/up bad, etc, my shoulder is. Having the SCS has let me just rest and use it on higher strengths than "normal" days. Without the SCS I would have been at either my PCPs or an ER yesterday.
    With the SCS I can thump the pain into submission, using a rotating pattern of programs and strengths till it is numb, or at least tolerable!
  • No one is ever too young to get adequate pain relief if needed. I suffered through pain since 1974. Finally a couple years ago i had all i could take and went to my doctor. I realized i had been doing more damage than good to my body. I also took alot of different pain meds. They seemed to help for a month or two. Then it was time to up the dose or change meds totally. In June my PM said enough is enough and recommended SCS. I was implanted on 8 July 2009. Yes, it is a little unnerving not knowing exactly what is going to happen during the trial or surgery. But in my opinion, in the end it was not all that bad. You have the tendancy to stoop or bend down alittle differently afterwards because your mind knows whats there. Believe it or not, the worst part of my surgery was the removal of the staples. I anticipated how it was going to feel and actually almost fainted during it. This may not sound funny to people but, I am 53 years old and a retired Army Special Forces soldier. I have been through things alot more severe than staple removal. In the end I am very thankful i had my SCS implant. My pain was almost non existant for the first 2.5 months. Since it has started coming back some, not bad but some. Tomorrow i'm off to my PM again for a reprogramming and talk about maybe using some breakthough meds at night for relief. I was proud that i was med free since the week of surgery. I only took two of my oxcy's after surgery for the first two days. But, I have realized that i need to admit that i may need some meds to make this totally work. 8 weeks of taking it easy is worth getting some or most of your life back. Guess what im trying to say is, Do not be afraid of the unknown. It all seems to work itself out in the end.
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  • All in all the permanent was less painful than the trial. No tape to deal with. If staple removal is something that un-nerves you...I can attest that they can use dissolvable stitches. That is how they did mine. I think the worst pain was the day of surgery after that it was just needing help to do things I shouldn't do. I think for two days I needed help in and out of bed because I was afraid of twisting and causing problems...once I got rid of the fear...everything was fine. More mentally getting yourself ready. Like I said I am 42 and if some think that is too young...they should walk a day in my life without SCS and they would make the same decision I did. I think I aged with all the pain and was acting like a little old woman afraid to do this and that...with SCS I have regained my youth and I am very much a part of my kids lives. Whoever did the reseach for this device on chronic pain....I for one thank you.
  • So glad you had a good trial and are moving forward. I've been out of town and missed this post, or I would have posted sooner.

    I LOVE to tell people about my SCS and have no qualms programming it in front of others. The total transformation of the "pain Cheri" to the "SCS Cheri" has been dramatic and everyone is curious what is responsible!! People are fascinated and so encouraging. I'm not embarrassed or shy in the least, in general, and feel like a spokesperson almost. lol I could definitely do a commercial if there ever was one.

    As for how it changes your life - for me, it's been minimal. I already wasn't bending, lifting or twisting, and was already very careful. I carry my remote in my purse every place I go, as it is my best friend. lol

    And as for stimulation in the groin area, I have that when I want to increase certain settings, but I use it during intimacy for quite a little party, if I may say so!!! A total bonus, indeed.

    I have some bowel numbness and my bladder is entirely flaccid (not dead, but not working) and no one knows if it is my SCS or the nerve damage that led to the SCS. There is no way I am going to turn off the SCS to determine this. Least of my problems! That is how much the SCS has changed my life!

    I am also a young 42 and was aging 5 years a minute with my 24 hour nerve pain. This has been a God send in my life. Entirely.

    I hope you find the relief I have and go on to have a fabulous life. There's only up from here!!

    Take care,

    Cheri
  • Yep, that's the sensation!!
  • I will admit I found out about the bonus groin stimulation in a very strange way. I am a single mother and haven't thought about intimacy due to pain. I was being programmed a couple of weeks back when the rep asked, "where do you feel that now". Well I didn't feel anything so she kept turning it up. Finally I started breathing heavy and she asked again where do you feel that. I couldn't answer...and she knew exactly what was going on. She said she would save that for me for when I find Mr. Right. After that I saw a video where they are using SCS for women with dysfunction in that area. Think they called it their special button. LOL
  • No one has suggested that the hardware may contribute to my pain. At about 6 months out my neurosurgeon sent me to my PM Dr. for the SCS. My neurosurgeon had done x-rays, MRI, and an EMG and he said that everything looked at it was supposed to look prior to making the referral. Even with the referral for the SCS my PM Dr. did a couple of injections, nerve block, and radiofrequency ablation prior to recommending the SCS.

    While it is always a possibility, I really don't think the hardware is the issue because the pain in my legs hasn't changed, except for more pain on top of my right thigh. The pain in my back has actually lessened slightly since the fusion because prior to the fusion the back pain was equal on both sides and after the fusion there are times where my left side isn't as bad as it used to be but the right side is the same. Also, I have more pain on the right side which really puzzled my neurosurgeon because he did the fusion work on my left side which also led him to believe that anything related to the fusion wasn't the cause of the pain.

    I do appreciate to you asking about it. How are things progressing with you?

    My surgery is set for October 29. I don't know about you, but since the trial was taken out my pain level has been high and my pain meds aren't helping very well. I am definately ready to get the permanent implant.
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