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What Should I do? (eliminate all CAPS)

mayahelenmmayahelen Posts: 7
edited 03/10/2013 - 3:37 PM in Spinal Cord Stimulation
Hi, everyone! I was reading each of your posts, but I still don't know what to choose for my condition. I had a back surgery in 2007,and everything was just fine untill 2009 when I started to have shooting pain in my right leg. I had a tumor (good one) inside the spine, which the dr remove partially, that didn't grew again, but scar tissue formed... I've seen several neurosurgeons which have told me that another surgery is not an option, and they re-direct me to pain management. Didn't try anything yet, to solve my problem, beside pain pills (gabapentin and hydrocodone). I must say that each of the doctors saw me was impressed how perfect the surgery was performed, telling me that I am in a very good shape. Beside the fact that I do not walk very good because my right leg (this problem begun before the surgery; I feel it weak, even if the doctors told me is strong, I've partially lost my sensibility in the legs, I can't stand the AC because give me pain, I can't run), I can work, stand, sit, I do anything that a normal person (without pain) can do.
They reccomend the spinal cord stimulation, which I really do not want to have... The thing is that I didn't try anything else, and I would like to know if something else I can do, so this device would be my last option. I've beean also reading that this implant would not solve my problem 100%. Is that right?
Now, the dr gave me the Butrans patches (10 mg), which I didn't bought yet, because I read that are addictive. Are these patches worst that hydrocodone? Right now I'm taking 4 gabapentin (750mg each) and 5-6 hydrocodone (10-500 T) every day (sometimes just 1-2, depends of the day). I repeatly asked the doctors to give me other options, but they said is nothing else to do, and I would really want to know if some of you tried something else (even if didn't work for you) before you had the implant. I'm still hoping that I can solve this problem in a different way...
Thank you for taking your time to read my story, and please, please advice me with anything!
I'm sorry for my bad english (my last english lesson was in 1998 :) )


  • Is that tumor going to grow? Is it cancer? Do they have Pain Management Dr's near you? For a lot of us....we have tried EVERYTHING. The medication just doesnt work any more. The SCS is either our last or our first hope at a little bit of a normal life. When you get to this point withyour pain you will understand what Im saying. Have the trial procedure done. At least you will know if it helps you when the time comes.
  • mayahelenmmayahelen Posts: 7
    edited 02/09/2013 - 6:54 AM
    Thank you, Terri! No, it's not cancer... I was lucky, and the tumor it wasn't malign. After the surgery I was feeling so good for about 2 years, that I can't believe that is nothing I can do to solve the problem with the scar tissue (and not hiding it). I am 33 years old, I want to be healthy. My back pain started when I was 13 years old. I saw sooo many doctors, and nobody had the answers at that time. The surgery was performed when I was 27. Practicaly, I was sick all my life. I've been reading something about disolving the scar tissue with vit D and some other medicine. Told this to my pain dr, but he said he doesn't believe in miracles... I am still hoping because I'm not in a bad shape, just in bad pain... I would like the implant to be my last option, only that no dr is giving me other options that this. That's why I would like to know what other people tried, even if it didn't work. I am willing to try anything; we are all different, and maybe will work for me. I don't care if is painfull, I just want to be pain free. I want to have a baby so bad, but I am afraid of the risks because I am taking the hydrocodone...
  • surgery. BUT, if the trial works, you know that is available. If it does help you may be able to carry a child with out meds. Realistically, being 100% pain free may be reaching for a really high bar. Baby steps.
  • RickilalasRRickilalas Posts: 559
    edited 02/12/2013 - 8:54 PM
    What are your concerns that are leading you to not want the SCS or at least the SCS trial to find out if it will even help you. I have a lumbar unit now for almost 2.5 years, it saved my life. I have both cervicle and lumbar issues plus spinal cord damage in my neck. My SCS help with the pain level from my waist down. Without it I would not be getting around at all. With all of my issue I still have pain but the SCS is just a tool that helps me a lot. They are not a cure just a help if the trial goes well and the implant is placed right and programed right. Yes its true it is no help for some.
    When I started looking into this it took me a year to agree to try it. Later I had to ask myself why I waited so long and now wished I did it when it was first offered to me. Keep in mind this is offered to us as a last chance form of help as nothing else is working. Its up to you but I hope you at least do the trial and see what it can do for you.

    Keep in mind most people that have a great result disapere and we never hear from them but we do hear from the ones that it did not work for. Just something to think about. Also if you plan on a baby make sure you talk this out with the doctor as the placement of the implant and leads my be differant then with a person not making any family plans. My one and only warning would to be sure your doctor doing the trial and the surgeon doing the implant both have much experience with doing this.

    Ask anything you want or need. I hope you get some help with your pain.

  • I appologise it took me so long to respond, but I have good news and I hope that will help others too.
    I contacted my neurosurgeon from Italy, who told me to start an enzyme therapy. Shortly, these enzymes are proteins that facilitate chemical reactions in living organisms. In fact, they are required for every single chemical action that takes place in your body. All of your tissues, muscles, bones, organs, and cells are run by enzymes. I am taking the Proteolytic Enzymes :the Serrapeptase and Nattokinase because they are the strongest one in dissolving the scar tissue. I am feeling some relief, dropped the Oxy to 3 pills a day after 4 weeks of treatment. I know it is not because the scar tissue is dissolving already (the dr told me that will take some time), but because the proteases (proteolytic enzymes) I take have also anti-inflamatory properties and are also blocking the pain. Proteolytic enzymes are blocking the pain producing amines from the tissue that have inflammation (bromelain). Read about this! I am feeling this release myself, and millions of other europeans!
    It is not a naturist treatment, it is used for years in Europe, where a sick person cost the hospital lots of money, so the drs want to see you healthy. In the US, more sick people means more money for the hospitals. Also, my dr told me that they are not use this treatment in the US because the enzymes cannot be patented , so they are not useful for the big Pharma...
    Read about this, it's worthing a try...Talk with a dr that you know that wants to see you healthy, not with a pain manag specialist. Mine told me that he does not believe in miracles... Last week I've been to his office for the refill, and I told him I don't need so many Oxy, cause I dropped to 3 a day with the enzyme therapy. By the way, before I told them about this treatment, the pain specialist and the neurosurgeon from Mount Sinai, Miami, congratulated my Italian neurosurgeon for the great job he did (it was a 10 hours surgery, 2 articulations are out, he had to break down the bone to arrive to the tumorbecause it was inside the spine...); after I've told them his suggestion about the enzymes, they do not talk about him anymore:)).
    I am feeling good, I know that in Europe all the doctors are using enzymes in many kinds of problems, and even if my pain manag specialist is reluctant, I can seethat now, after these results, he's kind of avoiding talking about this anymore. It isn't right that drs want to keep you in pain!
    Read about these enzymes! Like me, you have nothing to lose... Enzymes do not have side effects at all...
    My formula is:
    -300,000 HUT protease (you need high amount...don't worry is not bad for you)
    -30,000 iu serrapeptase enteric coated (MUST BE COATED, BECAUSE IS SENSITIVE TO PH)
    -nattokinase the same as serrapeptase
    -my formula also includes bromelain, rutin and ginger.
    High dossage for begginers is better ( better to low the dossage on the way, feeling better, than trying to find the right dosage ). I am taking my pills 3 times a day, one hour before or after a meal.
    The proteolytic enzymes used in enzyme therapy dissolve fibrin. Strong proteolytic enzymes CAN BE POWERFUL ENOUGH IN THEIR ACTION TO GRADUALLY DIGEST SCAR TISSUE AWAY. They have no side effects at all.
    I hope all of you will feel the release of pain I feel! And I am confident that will be better and better. I will keep you posted.
    As, for the past 5 years the scar tissue didn't grew up, I will also have another MRI done in a few months, to see if they are any changes after the enzyme therapy:)
    God bless you all! And stay away from doctors that want you in pain!
  • do not buy enzyme formulas that lists the MGS of enzymes present as oposed to the activity level of each enzymes in the formula! An enzyme can still have a weight even if is inactive
  • Awsome you have found non surgical relief! I agree with what you say about big pharma, if they cant get a patent they dont want anything to do with it, neither do Dr's
    I have read that they try to make things have a disease name so it can be treated. My opinion of RLS restless leg syndrome
    I dont have it and dont know anyone who does. So I cannot say what the problems of it are. Just an example off the top of my head.
    I have also heard where they have tried to make vitamins perscription only. So far from what I have read it is difficult for them to get this approved, which is good for the people only wanting to take these for health
    Can you please private message me a link to read more about this therapy you are trying. I do not think the moderators will allow a direct link unless it is in a private message.
    Do you really believe that scar tissue is the cause of your pain? I have read when the body tries to heal itself, that in turn new nerves can grow into diffrent areas making it painful also. I also wonder sometimes if the nerves get trapped in this scar tissue and cannot release in turn causing more pain if we try to move in different directions, for me trying to bend forwad I feel like there is something stopping me like a tightness and if I try to push thru it, it will cause more damage and pain...
    So gald you have been able to get off of the majority of your pain meds and good good luck on making a healthy baby!
    Get going you are 33?
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