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Waiting for CSS implant

Hi, I am a bit apprehensive about getting the scs permently implanted. I had the trial and it did help about 60% which was great. After the trial my Dr. Found a herniated disk at c4c5 and said to fix this First and see if this helped the pain and other issues I had. I had the operation and it did not help made my headaches so bad I spend most days in bed and the pain, tingling and numbness in my right arm, neck and shoulder are worse. I went 8 months going back and forth to the Dr. And pain clinic telling them how bad the pain was and finally put my foot down ( I was seeing my Dr.'s PA ) and demanded to see the Dr.himself as the PA was blowing me off as to how much pain I was in. So frustrating when they won't listen and think its all in your head. I finally saw my Dr. And he was appologetic (sp?) and said that he wonlld help in anyway he could. My headaches he said were not coming from the area that the scs would help and said we could do it two way either treat headaches first or the scs first, if he treats the headaches first they will come back worse as they will be cutting into the muscle at the back of my neck so I decided to treat my arm first and the headaches after. I am waiting for my surgery date as it has already been approved so I should be hearing from them soon. I'm apprehensive I think because I don't want to be in more pain thatn I am now. Sorry I know I'm rambling but I don't know what to expect. My husband and kids are worried that something will go wrong. My kids are all grown they are 23,21 and 19 all have been wonderful though all this and only want me to get better. I have a granddaughter 16 months old and want to be able to play and enjoy her. If any one has any words of wisdom lol please let me know. I have read some of the posts on here some good some bad and I guess I'm looking for people who know what I'm going through. Thanks looking forward to hearing from anyone. Oxoxo


  • Hi
    I am glad to hear that your test did well for you. Using the results from your test your surgeon will know where to place the permenate leads and with a good surgeon and placement the pain relief you get will get better and better with time as they scar in. Are they talking about a paddle or just leads? Paddles have a less of a chance of migration.
    I had the cervical scs test and was even approved for it but my surgeon said we have to wait until my next cervical surgery to do it because of all of my scar tissue. This Monday I am going to say its time and hope he agrees with me.
    I do have a lumbar scs that is two years old and it helps so much I could not go without it.

    Now for the surgery worries. I have had a majar laminectomy at C5 C6 and C7 months after a fusion of the same area from the front. If they do a laminectomy for your leads or paddle it will be just large enough to get them placed.
    This surgery isn't real bad but it is a surgery that will take some time to get over. Do you know where they plan to place your unit? You say the family has concerns about the surgery. Surgery is always a risk but they have so many
    safe guards today you have a higher risk riding in a car to the hospital. If your surgeon has a lot of experience in this I would have no worries about it. Sometimes people don't believe how much pain we are in and I bet if we could show them or trade places for one day they would jump at the chance for this.

    Like you I also had a run on some major headaches and even went to ER when they started because I had never had them. I was able to see my Pain management doctor quickly and the cause was placed at C2 and C3. We did some injections to test and it helped so he then did the RF to two nerves up there and no headaches for almost a year now.
    I know every one is differant and my problem may not be like yours but I include my experience to show there is hope out there when you get the right help. My pain management doctor is the 5th or 6th PM I went to before I
    Found one that understands what I needed and went the extra mile to take care of me. Its sad that so many doctors do not understand spine issues. You must always be your own advocate. I feel so lucky now that my PM will see me anytime I need it even if I don't have a appointment and many times he will call and talk with my surgeon while I am sitting there. My surgeon even did my lumbar implant on his administration day (university) so that I did not have to wait for a opening in his surgery calander. I finally got a set of doctors that do care. My GP is pretty good with me two but doesn't really participate in my spine issues but does keep up on the safety of my liver and kidneys from all my meds

    I feel if you feel good about the doctor and the hospital you should have no worries other then needing some help the first week at home afterwards. You may ask me anything you want here in the forum or in a PM.
    Just try to relax and think about how much more quality of life you this may give you.

    Good Luck
  • My Dr is wonderful he promised after the trial he would do anything to help relieve the pain. He wanted to do the fusion first ( which he did on 12-8-11) and then if that didn't relieve the,pain he would do the scs permanent implant, unfortunaly made both the pain and headaches worse. So we tried some other things and nothing seemed to work. TG I finally say him instead of his PA and he agreed with me that I had tied and been through enough to do the surgery. I'm not sure if we are doing paddles or leads, I heard paddles are better as they stay in place better. I don't know hoping someone could help me with this. My family is worried as I know all of our family's are, they just want me to be better and enjoy my life. I hope you get the answers you want on Monday. I will be crossing my fingures for you. Let's us know how it goes. It's encouraging to know that y ou have had success with the lumbar scs. Thanks for writing it makes my feel less nervous. It's nice to know that's their are people out there that can come on these forums and help one another. Best of luck on Monday. I will post when I get my surgery date. Esther
  • After asking several doctors and even my PM paddles are better but almost always have to be done in a OR by a spinal surgeon. There are some PM that will do the other leads like the ones you were tested with in there office or a small day surgery place. The problem with this is the leads can migrate way more then a paddle can so if it moves to far it won't be any good until they move them. So I would be asking about that. OK I just looked back up where your surgeon is doing this so, my guess is he will want a paddle my resurch was showing a PM would use leads so he could do the whole job where my PM did the test but turned the implant to my surgeon. I go to a university hospital and they almost always have a resident do a work up on me and then because of all my problems the doctor always sees me when the resident is done. Kind of fun sometimes to get a second opinion every office visit LOL and then to be able to hear what the Doc says to the resident which are already MDs but going through a spine surgery program.
    There is always the chance also that there might not be room for a paddle and then the other leads will be the only choice. My lumbar paddle has 16 electrodes on it they do come with smaller amounts but with 16 I was told they have over 44,000,0000 million combinations possible for adjustments later. Its crazy I am only using three electrode right now so I have all those combos for use later if things change
    Good luck and keep us updated so others can learn too
  • Thanks for the info I will definitly ask my Dr. For paddles. I was thinking they sounded better than the leads just by what I have read on the forum. There's a lot of info and researching in this decision for all who are considering having this done. I my self think it is worth the try. Hoping it will be done soon. I'm tired of not sleeping at night and being so exhausted I have no choice to sleep lol I'm looking toward the future and being able to play with my granddaughter. Thanks again
  • I feel your date will be posted soon. Good luck
  • Well called the Dr. Office to see what was going on and the scheduling nurse said they are waiting for an approval, I said I already have one she she insisted they don't have it. I now have to bring my copy down to them and show it to her, I would email it, but I'm brining it down so I can make sure they get it. So hopefully by next week I will know something. Fingers crossed.
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