« A Must Read: KATHY SPEAKS UP. | Main | Disabled Bloggers: News for You. »

June 29, 2007

Comments

Deborah

Awesome! My pain doc has been wanting me to get one implanted for my migraines; but I'm a little aprehensive. The studies are on migraine are not good enough for me to have it placed. However; for your type of pain, I think it's exceptional. What is your pain level at now?

cindy

I am geting my test stimulator for my back this friday, I was wondering about meds after its surg. implanted and if I will have restrictions physcialy after?

Colin

Dear Deborah and Cindy,
The neurostimulator doesn't eliminate my pain, but it does significantly blunt the sharp spikes I had endured. I experience erratic aggressive nerve pain that without warning tore through me. That pain is gone. No drug that I know of controlled my pain when it would shoot from a "6" to an "8". The stim does. I have run it continuosly, night and day, since implamentation. What fascinates me is that the electric stimulation is not directed at my feet legs and lower back, the places where I feel pain, but to my brain! Yikes!! Trust me on this, the relief is directly to the parts of my body that feel the greatest discomfort almosy as if it were "smart".
Cindy, when I set the stimulator on high settings, when my pain is very high, the automatic bodily functions aren't automatic. I don't wet my pants, but I shut it off in the bathroom. Also, some stimulation is too much stimulation; a hand held control allows me to fine tune the intensity of the stimulation. I can turn it up to meet really horrid pain and down to the point when I no longer even feel its bubbly touch.
I hope this helps to answer your questions; I've always found it difficult to describe pain and its intensity. Language doesn't allow for a pain standard. Pain is just too subjective. Language is objective. God bless you both and thanks for writing, Colin

Craig

I have bulging discs and stenosis. Had a low back fusion 15 years ago. It helped for a long time. But now the pain is back. About a 6 on a 1 to 10 scale. I don't tolerate drugs well and don't like to take them. Interested in the Medtronics neuro stiimulator. Have heard good and bad about it. It seems the new model works well. Will insurance pay for it? Thanks, Craig

Nigel

I have a morphine pump, but still have a lot of pain..my specialist says that because the pain in back related, a neuro stimulator is not a possibility ! basically for leg pain - dont like using the drugs al the time as it plays up my bowels ! Any thoughts?

Gina

I have had a neuro stim implanted since Oct of 06. I am not a big fan ...after I had the first one in I lost about 20 lbs and my battery flipped to the side and was sticking straight out. It was very painful- it was causing a big bruise on the outside of my skin because it was literally trying to come out of my body. So - back to surgery by March. He pulled it out and then sewed up that lovely new scar. He then moved it to the other side and put it in my left hip -they used the same equipment , put it back in and sent me home. Well within about a week it was obvious that the leads pulled away from the battery so the stim was not working right.SO - back to the table again. This time I had surgery they pulled out the old leads and put in newer shorter leads. I now have the back of frankenstein with all of my scars everywhere. :) Anyway I see all of these great experiences that people are talking about which is wonderful - but I also needed to share my story. If anyone was thinking of having this done I would talk first with another patient that your Dr. did surgery on. I would also ask for the most experienced medtronics rep to work with. I do believe that my screw ups were due to my rep not knowing what she was doing. I now have someone that has been with medtronics for 9 years and have a great level of respect for him. He works with me on all of the different lead changes that you will need to have adjusted and you really want a rep that understands how to work their master programmer. I know I sound negative but it has been a long haul and I am still in bed the majority of my life I am disabled at 40

ceylon

Is this device covered by insurance???

How does one get into a trial to determine if one is a canidate?

Don Haddock

I was recently diagnosed with RSD. After 7 operations on my left shoulder, my right took a beating, resulting in 3 rotator tears in it. I had mentioned many times to my many Drs. that they both hurt like the devil. The VA sent me to an outside pain Dr. We both agreed on a trial stim. I got about 40-to60% relief depending on the weather and my activities. They (rep. Dr.)and myself agreed on a permanent spinal chord stim. After surgery when I came around, a 10 on the scale of pain was nowhere in sight. Absolute misery with pain and a cervical collar.for 2 months. I'm still on MS Contin 60mg's 3x's and 30mg's IR 2x's for breakthrough pain daily. The stim is now keeping me at or around 45-55% helpful. Now the RSD has traveled to my wrist. I have been rated @50% through the VA prior to this procedure. Comes to find out that I have two rotator tears again in right shoulder and they say surg. is out of the picture. I'm fighting for 100% dissability. Can anyone help me out with this? I have hope in the VA from previous experiences. Dr. states I should be rated @ 100%.Thanks for any input.

Teri

Just got the implant last month (4/17) still recovering from the surgery - get my stitches out today :). It was covered by my insurance, but they had to do pre-authorization for the trial, I had a psych eval, and then another pre-auth for the device. It's working pretty well so far - we'll know more once the swelling and fluids go down from the surgery.

Teri

Oh- and my orthopedist recommended it - got a 2nd opinion - and then my ortho moved making me have a different orthopedic surgeon implant it. --- BTW - not medtronics - through boston scientific (precision plus). The medtronic trial failed and made my feet feel like they were going to smolder off.

Angela

I am doing the trial right now. I am supposedly a perfect candidate for it but the stim seems to lower the nerve pain but my muscles all through my legs and back start to hurt very deeply. I went back and the rep adjusted it and I thought all was good but then later at home the pain came back. Wanted so bad for this to work but in my opinion it hasn't. Just as much pain just different type with the mystim

Sherry

Has anyone out there used the neuro stim for fibromyalgia with success? I also have cervical stenosis, mid back bulging and lower back disc herniations. I am very intolerant to pain meds, so surgery is not an option at this point. Have had epidurals, cortisone injections, blocks without any relief. I live in constant pain. A few years ago, I inquired about the neruo stim with my pain management doctor and he told me I wasn't a candidate for the neuro stim, because of my fibro and multiple areas of disc problems. Has anyone out there with problems similar to mine had success with the implanted neuro stim?

Kathy

Three years ago I was very athletic and ran 3 miles daily. I woke up one morning with back pain and a month later was told I had six herniated and/or bulging discs. Since then I have had 2 fusion surgeries for repair and pain relief. Unfortunately the herniations also caused a nearly severed sciatic nerve. The nerve healing was not progressive. I was left to a wheelchair most of the time and taking 6 pills for pain 4 times per day only getting relief to about an 8 on the 1-10 scale. I inquired about the spine stimulator and and was immediatley sent into the trial. It was so successful for me that only 7 days later I underwent the permanent implant surgery. I am now 21 days out and still have my staples but I am on no medication and back to walking 2 miles a day.

I am extremely pleased at this time with the implant. I was blessed with an awesome team of Medtronic reps and one of the best neurosurgeons in West Central Texas. For all those interested in the spine stimulator, check with your doctor for other other patients who have had the surgery.

Good Luck to you all.

Howard Rich

I was sceduled for a dorsal column stimulator, but my ekg was bad long stort short, I had a defibrillator implanted. Then they told me I couldn't get the stimulator. Is there anyone you know who hasa defibrillator and a stimulator, I am trying to get the stimulator implanted I can't continue to exist this way. I had been approved for the implant.

Betty

I have had two spinal surgeries. I now have rods and screws in my back, but surgeon told me that the severe pain and weakness in both my hips and legs are the result of severe nerve damage. She sent me back to my pain management doctor to have the neurostimulator implant tried. I am set to have it done in August. I am not afraid of surgery, but I am scared to death over trying this device and I have no idea why. Is it really painful after they implant it? Also, the surgeon told me it does not work like a tens (which I have three of) as it does not send those "Zapping" feeling. She said its like a lite massaging feeling. Can you tell me how it feels?
Thanks

Eileen

I am having the trial done for the neuro stimulator in 2 weeks by my Pain Doctor. Is it required that a neuro surgeon or a surgeon in general perform this procedure or do you think that the Pain clinic doctor is capable of doing this type of procedure. My neuro stim is for CRPS/RSD.

Hi. I have Stiffman Syndrome, a desease that causes me to have absolutely incredible pain located mostly in my middle and upper back. Being startled, being touched the wrong way, stress -- you name it, and I'll have a "flare up" in which pain from muscle spasms are incapacitating. I've had this disease since I was 17 (I'm 44 now), but life is better--better than I ever believed it could be. I was plagued with so much pain that I had 5-10 hospitalizations a year in which they would load me up with stronger and stronger narcotics, and finally after Dilaudid quit working (about the strongest you can get) I knew I was in trouble. Many doctors, and I mean MANY, thought I was only prone to anxiety, hypochondriasis, and that I had become a junkie. X-rays didn't show anything wrong, of course. My physical therapist found, one time, what he said were probably 100 severe spasms in my back. He could feel them because of how hard the muscles were in those spots, and also because there was a change in the temperature of my skin where I actually had the spasms. That convinced the "non-believers" that I wasn't feigning any illness for drugs or attention. My primary physician still got into heated battles with other doctors about what narcs I was being given. For that matter, I HATE narcotics because of their side effects. Clearly, something needed to be done. So one day my primary came into my hospital room with my physical therapist, neurologist, and a neurosurgeon. My PT did an exam of me with them being present -- and mostly of my middle and upper back -- and then the neurologist injected Baclofen into multiple areas marked on my back. They all came back in perhaps an hour, and I was sound asleep. I finally got some relaxation. The PT said he had NEVER see someone respond so well to the baclofen injections. So the neurologist came in and said that they thought I would benefit from a "Baclofen Pump". They explained that it would involve surgery, a pump would be sewed in the right side of my "spare tire" and there would be a tube running directly into my spinal cord, but unlike narcs in which 90% get filtered out by the liver, in other words doing nothing very helpful, this was ALL going to treat the problem directly. He said, "I promise you, you are going to feel a lot better. Not pain free, but a lot better. (Wow-- doctors never, ever promise.) The pump DID help right away, but after only a couple of months the help faded. So they increased the amount. Same old story for almost a year, until another doctor, a physiatrist (pain doctor) recommended puttig Morphine in with the Baclofen. I objected, being concerned about whether my body would become addicted to it or if it would have any other side-effects. He said that I might not even have any side effects. The big difference is that, instead of taking 150 mg of this and that narc every 4 hours, I'd be getting micrograms of morphine, not milligrams, so a hell of a lot less.

That doctor became the hero! For more than 20 years, I never -- not even for one moment, was pain-free. Now, sometimes I am completely pain-free. When I do have pain, it's NOT the center of my life like it had been. These doctors and Medtronics have given me my life back. My wife and I are now getting along much better, I'm staying OUT of the hospital, we are expecting our 1st baby, and I actually started a full-time job again about two months ago, and I'm thrilled. It was the pump, the mixture of the Baclofen and Morphine, my doctors, and Medtronics who, through the healing hands of God, enabled me to live again!

Linda Hill

I had a spinal fusion surgery January 7, 2008. I am still in considerable pain when I am without medication. I have been to see a pain management doc who recommend the Tens test. I am presently using the portable non-invasive type which does very little to alleviate the pain I am experiencing. It is a distraction rather than a pain reliever. I am not interested in going through the surgery involved with the implant because I have heard (read) some pretty scary stories. My pain is handled quite well with narcotic pain meds and I suffer no side effects from them. I am an athletic woman of normal stature and weight. Prior to surgery in January when on meds alone I could walk/run 2-4 miles a day. I can now manage 1 mile a day and still do the work in my large home and tend to the needs of my large family -- but it is quite painful to do so. Since the surgery, the Medtronic devices, etc., were never mentioned until I arrived at the magical medicare age last August (I am now 66) it makes me suspicious that less invasive, considerably less expensive therapies are not part of the game plan for me. I am presently living on 15 mg. morphine three times a day. It dulls the pain and makes it possible to manage my life -- but not without pain. At my age (and I am retired) does it make sense to subject myself to this procedure when I know a few pills will work? How does anyone know when a doc has your best interests at heart? I have read some of these other comments and it seems to make sense for people who are in far greater pain then I -- but for me? Just as a point of interest I wonder if there are incentives given to doctors who 'sell' these devices to their patients. It just doesn't seem worth the risks to me.

JIM

LIINDA:
I am 66 years old and have a morphinepump, I have had it for 5 years and it does maybe 50% of the pain. They now want to do this neuro stimulator. I think you will know after the trial period if it works or not. If you don't feel it works then you just tell the doctor no thanks. I mean it really is up to you and you do have a trial period. I can say one thing if you can live with the pain with out taking a lot of pain meds then do it. that's not a lot of pain meds you are taking so I would say don't do it right now. The main purpose of it is to save the insurance companies money on you taking drugs. That's my own thinking.
Hope this helps some.
God bless and good luck with your pain.

john r bell jr

I'm on my 5th implant over past 10+ yrs and still want a cure for my pain by any means I can get. A new medicine or clinical trial procedure or anything I'll try. Where do I look?

JULIE C. CONDREY

I had a Medtronics stimulator implanted about 5 weeks ago. I have had chronic myofacial pain (like knives + corkscrews stabbing+ twisting) in my right shoulder blade for about 8 yrs. My biggest problem now is trying to get the neurostimulator adjusted to the 'right' setting. Does anyone have any suggestions to help 'speed up' the process?? Thanks for any info.!! Julie

carol moll

the 21 of this month i am going to have a stim unit implant.i have a condition called crips. has anyone had this done and if so what should i expect.i am very worried about this meds. have eaten my stomach up .please help me on this as the day is getting close. GOD bless and thank you.i should mention it is in my foot .constine pain.

Christel

Hi everyone. I am a 25 year old female. I have been suffering from constant chronic pain that is often debilitating since i was 18. a few months after my 18th b day i was in a car accident hit from behind. since then my life has been downhill. I suffered severe muscle tears in my neck head trauma and disk buldging at C4,5,6. I was in PT forever and had a cervial manipulation. a bazillion cervical epidurals, facet injections and trigger point injections. I have also had two radiofrequency ablations done from greater occipital nerve , C2, 3, 4, 5 done. I suffer from severe neck pain, trigger points up and down my neck and back.. my neck gets as hard as stone.. and i get these headaches that start with muscle tension in my neck. move to the back of my head.. then up my head and around my face.. it makes my eye hurt, teeth hurt and jaw hurt. I have been to 100 doctors.. who told me 100 different cases.. from i was imagining it.. to suck it up.. to i have fibro.. to cervical stenosis.. and myofacial pain syndrome.. i have had 30 Er visits for pain control and have gone through all the drugs out there.. now my percocet doesnt work anymore.. i have tried NSAIDS which ate a hole in my stomach.. to anti seizure meds. to migrain meds.. and i dont have migrains.. i have tried lyrica, muscle relaxers and so on. 3 months ago it got so bad .. that they direct admited me to the hospitl as i had passed out from the pain.. and finally found a dr who believe me.. they did a 3 level phosphorus bone scan on my .. and after a week in the hospital one diladid. mr dr's discovered i had actually broken my neck in the accident and not i had osteoathritis where i broke it.. C1,C2 and they missed it in the hospital originally.. take that all u dr's who said i was making it up.. ! and that was pressing on my C2 nereve which goes up the back of the head.. and i was diagnosed with cervogeneic headaches.. they injected the area with meds.. but it didnt take.. soas a last resort.. well they offered to fuse my spine which hey.. i am 25.. hell no! so they did a trial for a neurostimmulator.. implanted the leads at the base of my skull and in my neck.. i got about 50% relief.. i was sad.. as i had heard so many stories that this was a cure all.. now i have surgery in a week.. and i dont know what to expect.. recovery time.. as when i had my testimplant they said it wouldnt be that bad.. and i wanted to die every time i would lay down post surgical pain was horrible.. has anyone had a medtronics stimm. implanted in their neck? i was going to have the battery pack implanted near my clavical.. but i dont weight that much.. and i am affraid its going to stick out alot.. i know i will still be taking meds.. but hopefully.. this will allow me to cut back and save my kidneys a little.. and focus on my studies.. i am in school.. and though it took me 6 years to finish.. and i kept on having to take time off.. i finally made it to grad school.. and now my headaches have gotten to the point where they are daily.. before i even open my eyes.. i wake up with one.. tried everything.. bought a 150 dollar pillow.. i stretch .. do exercises.. i do massage.. thats the only thing that really helps.. but of course its so expensive.. and my insurance doesnt cover it.. would rather cover my 350 dollar zomig perscription.. ugg... i was very active before my accident.. i ran cross country and track.. and i rowed.. and i am just hoping to get back to beingg able to run again.. its been 6 years.. and i already feel like i am 60.. i dont have a life outside talking with my dr's or being glued to my microwave so i can use a heat pack on my neck 24/7.. ugg i guess i am just hoping for someone to maybe let me know what else they do .. or how surgery went for them.. i am kinda scared.. and am on my last nerve..

wally

can anyone please explain to me what the feeling to expect when this Neuro-Stimulator is implanted in . mine will be placed from c3 under my arm to my chest you can say like a pace maker . live read things that scare me but lve had anoth of this pain can't stand it no more and need to take my life back from hell !thats is the best way to discrib it. And l belive you all know what lm talking about . unless you been through this you have no idea WHAT PAIN IS true ! So please can someone take the time out and really fill me in , you people are the best to ask , even more so than our doctors . My 3rd surgery is on the 3 Dec on my c4 this time . You can say ll have the roayl flush l will have done my c3 c4 c5 c6 c7 :(. and good luck to all of you people wish you well cos there is people out there who really know what you are going through :eg. the rest of us .. glad l found this web page take care ....

walid

hi Christel .. just read your post and it was like reading my own life of pain . l had all that face pain plus my lips and jaw went num as well as my fingers to.and l went on to lyrica but did nothing for me now lm on velpro 500 anti seizure and muscle relaxers , even tho l don't get or had seizures but it did work for me .And no doctor belived me either at the time. Till a yr later I found a doctor a prof. who diagnosed me with spinal cord sindrome its the next step down from having a severed spinal cord . l hear you pain really and pray for you l would love to know how you go, or if you like to get in touch by email lm from Australia male and my opp is 3 Dec as well good luck wish you the best . my email is icu70@hotmail.com if you like .

The comments to this entry are closed.

Great Blog Award 2007

  • WoW! Great Blog Award 2007
    Great Blog Awards
Chronic Pain Lifestyle

Powered by FeedBurner

AddThis Social Bookmark Button
My Photo

Secret Code

  • Cool, Huh?

Co-Author, Anne

  • The Lens of Dorothy Gantenbein
    Many readers have written asking whose Photogaphs decorate our site. We are lucky that Dorothy Gantenbein allows us to use her work. Please direct your compliments and comments to Dorothy at www.dorothyphoto.com. We love you, Dorothy
  • Colin Sullivan
    I'm newly disabled, 47 years old with a loving wife and 4 great kids. I suffer from chronic pain.
  • Anne
    I'm remiss to not have brought Anne, to your attention sooner; she's my co-author with a quick sense of humor, and her own voice and opinions; find her articles in, "Anne's Corner" in the catagories above.

Silver Read Recommended Award

  • Silveraward
    We are thrilled to display this award granted to Chronic Pain Lifestyle by fellow bloggers, Shinade of http://shinade.blogspot.com/ and Zubli Zainordin, author of Book Project, synchronity4change.wordpress.com .

Dorothy Gantenbein

  • Ireland5_124
    More of Dorothy's work. All of it's on: http://www.dorothyphoto.com/dorothy_photo/

The Lens of Dorothy Gantenbein

  • 20070414sunol8560
    All of the photos in these albums are the work of Dorothy Gantenbein, an artist who's work was descibed as,"...incredible. It's as if the artist feels our pain, and captures it in a picture..." Dorothy has suffered with athsma her entire life. She has graciously allowed us to use her work to decorate our site. She has a vast compilation of photo essays on her own page, which I urge you to visit. Check her site frequently! Dorothy is prolific. Her work is not for sale. Make sure to double click on the thumbnails. It's worth it! I'll continue to add new photos. Thanks Dorothy, Colin Her site is: http://www.dorothyphoto.com/dorothy_photo/

Photographer

  • Dorothy Photo
    Dorothy Gantenbein generously allows Chronic Pain Lifestyle to use her work to decorate our site; please see her stunning work on her web page listed in the favorite sites

Digg Odd Ball News

Subscribe in Bloglines

2k Bloggers

  • 2k Bloggers
  • Our Blog is Selected by 2k Bloggers
    A website, The Faces of Bloggers, selected Chronic Pain Lifestyle, from among the millions of blogs as one of the 2,000 Faces of Blogging. We're thrilled to have been selected. Must be the hat.

Subscribe with Bloglines

  • Subscribe with Bloglines
    http://www.bloglines.com/blog/Edgarsdeadmom

Add Chronic Pain Lifestyle to Newsburst from CNET News.com

Subscribe in NewsGator Online

Add to Google

Add to My AOL

Your email address:


Powered by FeedBlitz

Alexa

tecnocrati tags

Rss Feed

Recently on this blog
Recently on other blogs