the permanet implant is nothing like the trial...my lead or leads have"MIGRATED" and the sensation is strong and in my stomach, which is extremely uncomforable to put it midly.My pain is back and she cannot reprogram my remote. They now want me to go have a few xrays and tell me that we will be taking "baby steps" ,not to worry. That is really all I can even say at this point...I could never explain how I'm feeling about this.Has anyone had this problem?
Q: Has anybody experienced a problem with a spinal cord implant?
Answers (4)
8/13/09 9:49pm
After reading everybody's post I am so glad that I decided not to try the implant.
I get cervical epidurals and they trigger major flare ups that I was afraid to even try the trial and was skeptical on just what it would do after full implantation.
Thank you all for writing.
C
8/13/09 4:55pm
I too, have Medtronic spinal implants. Three sets of 6 electrodes in the thoracic region. The trial went good, but the permanent location does not control the pain in my lower back and buttocks. It only supercedes any pain below the waist. The Medtronic reps have reprogrammed it five or six times, but cannot get it to stimulate where I need it. Went to see surgeon - he stated they could be moved to a higher vertabrae but that would be more extensive surgery and time in hospital. He also stated, he could pull them out entirely. (They claim it is reversible). I stopped using it that day - packed everything into the case and now rely on pain meds. I wish I was more informed before going thru this. I'm sorry I had it done and I am sorry yours didn't work either.
8/13/09 7:04pm
I am sorry to read of your pain syndrome.
vulvodynia is surely misunderstood.
If you push along the inguinal crease/inguinal ligament and it reproduces or enhances the vulvodynia, then you can blame the ilioinguinal, iliohypogastric or genitofemoral nerves that traverse the inguinal canal.
I had all 3 nerves cut and I am profoundly better. I self diagnosed, a traumatic severe triple neuropathy and developed a test for evaluating the nerves inside the inguinal canal. Of course, being male my symptoms cannot/were not comparable.
Of course a very different nerve from a very different part of the spinal column, the pudendal can also cause proximal pain.
If the above seems applicable, I can provide more details.
Jerry Hesch, MH
a patient and a patient advocate
8/13/09 7:09pm
I am replying under the name John Doe please look at my comment and reply If you would like. Thank you for responding...today is a very bad day....way sick today. I am going to do something about this.....I am trying to stay calm and logical.
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8/13/09 9:45pm
hi john doe
I'm so sorry that you are feeling so bad.
I too had a lousy day. Was told by my 'pain management doctor' that he is going to concentrate on procedures instead of prescribing pain meds. I have been going to him for 5 years, have had problems with the procedures we did try and different meds, presently I take percocet 20 mg every 4 hours. It makes things bearable. today I was told he will be weaning me off and dropped it down to 10 mg every 4 hours and I have to find a doctor that will treat me as a long term patient on meds.
I have crps in the right hand, wrist and arm. This in addition to fibromyalgia, migraines and herniated discs in the neck.
Needless to say I was stunned and am so tired of others having the power over me, telling me what I should feel and what I can do and can't do. It is hard enough to deal every day with the pain and to try to keep finding a way to look at what I have and not what I don't so I don't fall into despair.
But I will not let them make me lose control. It is my body and my life! I will find a way to live with the cards I've been dealt. I'm just tired of people not being able to understand what I feel.
So I understand how tough it must be on you .... but try to find a way to hold on ... try to look at whatever you have in your life that you do enjoy ... find those moments that make you smile ... because that is how we must live ... for the moments ...
I have a couple of cats and taking care of them makes me keep going ... they help me smile and without words they always seem to understand how I'm feeling ... amazing.
They are affectionate and playful so in spite of myself I have to smile.
Use these areas on the computer to share with others that are in the same boat and know that you are not alone.
Good luck
C
8/14/09 7:55pm
I do hold on to what makes me happy believe me and I believe in staying positive. I have a dog that makes me soooo happy, so I get that part. Here is the part I don't though -I am taking back my power and I am not letting people who have no idea how I feel or what I go through dictate to me anymore. I AM THE EXPERT-NOT THEM. I have been doing this for a few years now and have seen a multitude of Doctors and what is true for me is that a lot of the time they do not know what to do -yet- feel that thay should and make bad decisions that sometimes cause me to get worse or even change the course of my life. You said it yourself ," It is my body and my life!" , and I agree with you 100% I refuse to lay down and just accept that this is o.k. That is o.k. to not only not help someone but to tell them that you are going to indeed help them get better and then have it be worse. You know the feeling of talking with a Doctor before you have something done and then trying to get them to talk to you after it is done and done wrong...It is like you never were their patient. They accept no responsibility for what went wrong. I deal with not being understood every day and the well of loneliness that comes with it but I refuse to deal with anyone who does not take responsibility for their mistakes. Doctors have plenty of insurance for a reason and it is called family practice for a reason...because sometimes that is the best a Doctor can do is practice. They try this or that and then suggest we do it one way or another I get all that but how about when they LIE? What then?
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8/14/09 10:29pm
I agree 100%
I am so angry that my doctor for 5 years has now just abandoned me and wants to wean me off the only med that helps somewhat.
They think they're frustrated when they can't find a solution that helps us .... well what do they think we feel ???
I have been dealing with doctors and their bs for 30 years ....
had to do the research myself to really understand what was going on and that things were not just in my head.
It's true about not being understood .... I get really frustrated when someone says 'oh you sound good you must be feeling better' .... how many times must I explain ... I don't feel better I'm just able to handle it better at this moment and choose to be in a positive place. It's enough to get up everyday and find the strength inside to greet the day and try to get something done ... knowing that afterwards I will pay dearly for that effort ... that's another thing try to explain why it's hard to start anything its like putting your hand in fire ... after being burnt once you're not going to just do it again because you know it's painful... well that's how it is for us ... we know ahead of time that we will feel worse after .... and I'm not going to make that effort and suffer unless it is something that has meaning for me ... not just to do what someone else wants ... everyone wants me to 'get out' go somewhere it will make you feel better '
and once again I have to explain and explain and explain ....... ugh!
well I vented ...
wishing the best for you
C
1/15/11 8:09pm
Hi Cheri & John Doe (and All),
I understand how you feel & I am very familiar with the disease states you mention (CRPS, Chronic Pain Syndrome, Fibro) as well as the TYPE of Physician's you speak about...
I say "TYPE" (meaning disipline): it's the old adage "follow the $"...
If your "Pain Clinic" is primarily run by Anesthesiologists: their income is made by 1) putting people to sleep for surgery;
2) running a Pain Clinic: which means PUTTING IN IMPLANTS or PROCEDURES (much more profitable, big Lobby in Washington...).
If you can't get meds, PT, accupuncture, massage- you'll have to get an implant....
Have you considered a Physical Medicine and Rehabilitation Specialist? They are HIGHLY trained in disorders of Neuro, Rehab, Pain and MORE. And while they can perform certain procedures (epidurals, Botox, nerve block, etc); they DO believe in meds. Why? Because they believe in the value of pain meds & understand the needs of chronic pain pt's. And they don't make all their $ doing implants (I do not mean to trash the ANP's out there, I'm just offering chronic pain pt's with options).
My PM&R gave me back my life.
Thanks.
8/13/09 7:20pm
Are you not mad that you went this far and it is oops we can move it or place it somewhere else or we can take it out? Are they not accountable for not producing the same effect as the trial? What was the trial for then? I know for me, I have gone through Hell for 4+ years to get to.... a BIGGER HELL?????
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8/13/09 8:59pm
of the 34 surgeries I have had to date under general, the implantation of the neurostimulator under the epidural was by far the most painful of them all - yes, my leads down my spine have migrated, the battery backup has only worked on 1 side since the very beginning and to boot, despite watching the videos and being told that I should not have the morphine implant put in at the same time because I would be "cured of pain" - the neurostimulator does not do a thing for my pain and very clearly in the book that I received AFTER the surgery from Medtronic states in writing "does not help with low back pain"; then why did the neurosurgeon and pain management doctor say that this was my answer. I had mine implanted in 2004 and have lost 80 lbs due to its lack of efficacy and now it is protruding from my body and I am waiting for it to pop through my skin any day now - it is the WORST thing I have ever done! I would NEVER recommend it to anyone at anytime for any reason. Biggest medical mistake I ever did, despite all my research on the neurostimulator and all the hype the doctors made it out to be; no support from Medtronics or the doctors that implanted it either - 80K wasted from my insurance company. My battery is located in my left buttock so I cannot sit properly at anytime and have to request certain seats on airplanes because I cannot sit in an upright fashion because it is sticking out - worst mechanism in the world, but cannot stomach the thought of having it removed. Have heard horror stories of having it removed and replaced, as I was told that it was a simple procedure under local to do so - not true from people who have had it done. They can dig it out of my corpse. I am 44 years old.
8/14/09 6:58pm
I know that by looking up different things on Google, Lawyers, pain web sites, whatever....I have run across many things and one that specifically come to mind is Medtronic. Have you looked at them on the internet? I have and they have had 2 huge lawsuits against them for hundreds of thousands of dollars. I promise if you Google them you will find a wealth of information When I listen to want you are telling me in your email when you say that it is the biggest mistake you have ever made and how the Doctors were one way before the surgery and now they are another way makes me want to scream. You did this because you were told that it would help you and you researched it , like most of us I'm sure, to the best of your ability. It is so easy to look back on something and say I should have done this better or used better judgement especially when no one now wants to help. The Doctors got what they wanted and so did the insurance companies...what about what you wanted? I refuse to believe that we are without recourse because we are not " A SO IN SO DOCTOR OR THIS AND THAT BIG INSURANCE COMPANY". They win through intimidation and they wear you down. I started this emailing process to see if anybody out there-somewhere-did something about this. I wanted to see if someone had input so I might save precious time and trouble going into this with no frame of reference other than I know they made a HUGE MISTAKE. I am not going back to the same surgeon or letting the same person try and reprogram me that had anything to do with what is going on now. I am getting a second opinion and letting someone new tell me where these leads have migrated and talk to me about why then does my trial not mirror my final surgery in any way. Why have the trial at all if you can't go back and say , oh no that's not what it was suppose to be... I hate to hear you so resigned to just accepting this after 34 surgeries...YOU ARE THE EXPERT...NOT THEM. I know, believe me , how hard it is to muster up the thought of having to do anything like this again, it makes me want to spit, no vomit, no kill someone...I hate that this happened to anyone but it has and I for one am going to make sure I do whatever I can to hold whomever it is that is responsible -accountable. This is a nightmare and only one who has been through this knows to what degree I am talking. I can't believe this is where I am .....
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8/14/09 5:37pm
Hi,
I had a SCS placed about a year ago for bilateral leg and sacral pain following a L4-S1 fusion 4 years ago which did not decrease my level of pain to a desired level. I felt that the surgery was easy and recovery not very painful. The battery and leads do stick out somewhat from my skin and irritate me at times but I would not say it is painful. My biggest issue with the SCS is that I have a lot of fluctuation in the stimulation with movement even though I was told in time it would not be a problem. I work in a profession in which I may have to run quickly at times and when doing so, I have to turn the SCS off because the stim is too intense and affects my coordination. Also, I can't sleep with the SCS on because of the dramatic change in intensity when moving from my side to my back. Because of this, I only use my SCS on average about 40 hours a week. Currently, I am dealing with upper thorasic pain since the day of the surgery that is supposedly unrelated. I have my doubts. I am dealing with overall inflammation throughout my body, very high C-reactive protein levels along with minor pain in other joints. I believe my body may be rejecting the SCS. If I had known all of this, I would not have had the surgery. I rely mainly on supplements and acupuncture to manage my pain at this point along with a whole foods diet. Hope this helps! Keep your head up!
1/15/11 8:15pm
Have you considered that you may have an allergy to the materials used in the implant? I discovered I had a metal allergy after a joint implant. I had all of those symptoms you mentioned. I had the implant removed. My sister had the same experience- she ended up being allergic to nickel (see other posts on allergy to metals).
Hope this helps- keep the faith.
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By John Doe— Last Modified: 01/17/11, First Published: 08/11/09
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I have had a Boston Scientic for one year. I have been satisfied with my pain relief, over 50%, as expected. I still take Lyrica, Cymbalta and small dose of Hydrocodone each day. I have lost weight, exercise daily and travel with less pain than before. The only problem I have had is that my recharger was not charging. When I called the company, the representative asked me some questions. I was using the adhesive patches and my back support to hold the charger in place. The agent told me that if the charger gets too hot, it will shut off automacially. It has to have air circulation. That was the problem! Help was only a call away. My stimulator is programmmed to send pulses down my legs to my feet for neuropathy. I have not regrets about having it implanted. I was informed that I should not expect 100% pain relief so any improvement is wonderful.