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Spinal Cord Stimulator Disaster
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dawngri posted:
Trying to find people that have had a spinal cord stimulator implanted are worse now than before. . .....I had mine placed 09-2012 and removed 45 days later. .......my symptoms were vomiting for 12 hrs, then severe muscle spasms in the back, sides and chest, stabbing chest wall pain, intolerance to minor temperature changes.....shaking chills or heating up like a furnace........electrical sensations across the skin, hands and feet feeling as if they were being smacked on concrete, and the neuropathy pain worsened, plus leg weakness............ now 5 months later, I still have these side effects. They improved slightly with steroids, which are taken short term..........I know for many people the SCS is heaven sent, and I am happy for you.............I have found another chronic back pain web site where there are many with the same problems I have......if anyone out there would like to talk, I would like to hear from you...........the doctors have no answers and don't give any warnings that there is a chance you could be worse with the implant.............my quality of life is very poor now, I am truly suffering......today I decided to do something about it......I filed an Adverse Event with the FDA.
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bj1208 responded:
HI and welcome to the support group -

I am sorry you are having such horrible side effects still -

I have not heard of such side effects as these but I do have a couple of questions:

1) are you seeing the same doc that did the implant? Did they do the "TRIAL" implant?

2) did they call after you were home with it - say within 4 hours to see how you were doing?

3) who are you seeing right now? is this a new spine specialist (Orthopedic Spine Specialist or Neurosurgeon Spine Specialist)?

4) have you researched the internet to see if there are reports of such side effects?

5) when was the last time you had a MRI/CT Scan done?

6) have you or will you seek legal action provided you see a different spine specialist and get a diagnosis of what is going on?

I'm sorry for so many questions but the more we know the more we can help you.

I did have the SCS trial implant done in 11/08 - I have nerve damage in both legs plus severe chronic pains at the L5-S1 where my plate, screws and cage are (Fusion done 2/08) and even before I left the office I was in tears as I was in such pains. I went home and curled up in fetus position. The sells associate for the implant called me after 4 hours - I was crying on the phone - we tried different settings and when he told me to turn it off OH MY GOD IT WAS A RELIEF - my pains went back to their normal pains - but once he told me to turn it back on the pains in my legs went away but the pains in my lower back tripled - He said I was ATYPICAL - which at the time I didn't know what it meant - means what usually works for most people don't work for me. I went into the office the next day and spoke to the doc - he wanted to try and move the leads to another area in my back. I told him NO TO GET THE LEADS OUT - his nurse came in and even with the machine being off once the leads were removed I felt the pressure relieved off my back.

So yes I did have the TRIAL done but had it removed in less than 24 hours after being implanted.

I would suggest that you GOOGLE: SPINAL CORD STIMULATOR IMPLANT SIDE EFFECTS

when I did I found quite a few sites of where people have similar or different problems. I think you will find more answers there.

I hope that you have gone for a 2nd and 3rd opinion to different spine specialists to get a complete diagnosis and treatment plan in order.

Please let us know a little more ~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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bj1208 responded:
I had replied to another member who is having problems with their pain pump implant - suggested they call the FDA and ask what they should do since they are running up against brick wall - so keep that in mind -

Prayers~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to bj1208's response:
Health Central has a chronic pain discussion group and there are hundreds of people with the same problems as I have. Some ongoing for years and worse symptoms than mine. The trial was fabulous. The permanent was a disaster from day one. I was very specific with the anesthesiologist about the high stim causing nausea and my doctor knew as well. I was told to take the reglan that I had. I got a call the next day to see how I was doing. Told them I was vomiting every 3 to 4 hrs. They said just keep taking the reglan. Doesn't help when you vomit everything out. The pain was unbearable. Violent vomiting immediately after such as surgery is so painful. No one would order me compazine suppositories, that I knew would work. The tech and I believe that the violent vomiting caused the wires to become misplaced. But that the good side should have been fine. I turned the unit on only twice after finding out about the misplaced wires, using only the good side. Without using it at all my symptoms progressed, until I had trouble walking. So after 45 days it was removed.

I have been back to my NS, went on 2 doses of steroids which helped but that is a short term solution. But it showed that inflammation was a big part of it all. He did follow up with an MRI, no damage seen from the SCS, and the fusion is fine and no others disc issues. Had L-4 to S-1 fused. ,.........his conclusion is, I have to learn to live with it. And the neuropathic pain, which is what the SCS was for is worse. He basically said hang in there and get you med doc to order an anti depressant. Went back to the anesthesiologist who did the implant. All he said is I don't know what happened and you must be in the one percent of patients that have bad things happen to them. I was specific when it was removed that the wires and unit be sent to the company to be checked. When I asked about it, he said there was nothing wrong with it. But I could tell by the way he said it then changed the subject that it was thrown away. I called my tech on the case and she knew I wanted her to take it to be checked, she told me the hospital does not return any medical devise taken from a patients body to the manufacturer and would not give it to her. So I am out of luck there. I filed an Adverse Event for medical equipment with the FDA. I don't believe I have a legal case. I would have to have another doc say yes, this caused your problems. But they all stick together. My physiatrist told me not to do it, he has seen too many people hurt worse than those that it has helped. I wish I had listened to him. I will not be going back to the anesthesiologist for pain meds. All he keeps saying is " I did nothing wrong". He said that 8 times when I was there last week. I think he is scared I will sue. He did give me a script for Dilaudid which is the only pain med that works for me. The muscle spasms are unbelievable and no med will help. He sent me on my way. I was able to function before the SCS using my Dilaudid, now I barely can get around. I am at a loss as to how to help myself. And all those other people are in the same boat. I did research before I did the implant, but never searched for problems or pain web sites. Not many people like this can work, and I can't either. My family relationships are suffering. It is so difficult to live with someone in so much pain. I wish you could help, but no one can. The only thing I can do is try to get the word out to those that have the same problems, and get them to let the FDA know about this. Thanks for your concern.......Dawn
 
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bj1208 replied to dawngri's response:
Hi Dawngri - welcome to the support group

It may help if you could get the website for Health Central and post that so some members can to there.

Also, in regards to your situation - how many Spine Specialists have you seen? We always let new members etc know that WE employ doctors and if you are not getting the results you need then it's time to look for a new one and this goes the same for pain management. I see a PHYSIATRIST Pain Specialist who really has taken care of my pain problems and they do have Spine Specialist they can refer you too if needed.

http://www.spineuniverse.com/treatments/what-physiatrist

I do hope you can get answers and relief needed - keep us posted how u are doing~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to bj1208's response:
Hi Joy, I do not know how to place a link. Healthcentral.com would get you there. I have found neurotalk support groups is a good one as well. I think you are correct in saying that I should get another opinion. Right now, I have not been working for 5 yrs and need to get back to it financially as well as mentally. My husband and sisters says I am crazy and should file for disability. But my BRAIN needs the stimulation and I get more depressed with each day. I do see a physiatrist, he is the only one that has helped me. He is also the one that told me not to get the SCS. But I was off all meds so I could work, but the pain without meds was overwhelming. That's why I did the SCS. Thanks for your kind words. I don't want to try any more doctors unless I know for sure they have dealt with my SCS issues, and you can't ask that question over the phone. Stuck between a rock and a hard place. Dawn
 
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dawngri replied to bj1208's response:
Joy, I keep placing paragraphs in my posts, but the lines always run together.

How do you manage that.?????
 
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bj1208 replied to dawngri's response:
the easiest way to place a link is to open a new tab on your internet and bring up the site. the link appears at the top of the page in the heading and all you do is put your cursor on the link and tap the line to highlite it - then hit the CTRL and the letter "C" at the same time - this copies the site - then you put your cursor in your post a couple of lines down (hit enter key 2 times) and then hit the CTRL and letter "V" and this pastes the link.

You can also post like you did.

as far as doing paragraphs think of the post area as a Word Document where it does "wrap around" meaning you just keep typing and it automatically goes to the next line. when doing a paragraph just hit the "enter" key 2 times to start a new paragraph.

If you are utilizing another form to enter your posts (like "Notes" or "Word" or even from your email) that could be where the problem is. Sometimes if I copy a statement from a website it will do that so I go thru and separate where needed.

As far as seeing another spine specialist on your SCS implant just search for a spine specialist and when you find one do a GOOGLE search on them - it should pull up everything on them and you can read to see if they do the implants. Also if you live in a big city you can check with the university hospital as they will have more up to date treatments. They should also have up to date info on SCS implants and the problems associated with it.

I completely understand what you mean by having the need for your BRAIN to be stimulated. When I knew I would need the fusion surgery (done 2/08) I applied for partial disability in 1/08 to help while I healed as it could of taken 6 mts to a year. I had no idea that after 7 mts I would turn it into full disability. And that was a shock to my brain!! my pains are worse than before surgery. I was a Manager of Accounting and had a staff under me. My hubby and I have his father living with us since 6/06 and the first 4 yrs were really great but then we noticed a decline in him - he has 2nd stage dementia, diabetic, COPD, asthma and he has stents in upper legs that are blocked and he won't survive the operation to strip veins and re-direct everything. So I have my hands full especially if my hubby has to work out of town/state (Union worker).

There are still a lot you can do being disabled - you can still work but just not that many hours so be sure to check out all the info regarding disability - go to: WWW.MEDICARE.GOV

Hope this helps - let me know if u have more questions~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to bj1208's response:
I am seriously thinking of applying for disability. I just can not function, I just keep hoping, may 6 months from now. I have been saying that since 2007.

I was told everyone is denied this first time, so do you think it would be best to get a lawyer? Then if I do work I can do a little at a time and go from there??????.

Living on one income stinks.



And one of the worst parts of living with someone who is in constant pain, is there is a loss of intimacy and closeness, which makes it all the more depressing.
 
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bj1208 replied to dawngri's response:
Hi Dawngri -

Just wanted to respond to the disability issue - YES please get a lawyer that handles disability only cases - everyone does get denied the first time as they apply for it themselves (I did) so getting an attorney to help you apply will be best thing to do.

Good luck - keep us posted~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to bj1208's response:
Thanks Joy
 
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dawngri replied to bj1208's response:
Joy, I had asked you about how to copy and paste? Well I do it well with my computer...........but I was given an IPAD for Christmas and I am learning how to use it...............You Tube has a great video showing us newbies the ins and outs....



Thanks for your help. .................Dawn
 
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bj1208 replied to dawngri's response:
LOL I didn't know that's what you were using - I would have no idea how to do that - so glad you are looking at how to use it -

~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to bj1208's response:
Hi Joy. Been digging out of the snow here in CT for two long. Went 3 days without power. We were sleeping in coats, hats and gloves!....our food was kept in the snow banks......that was an unpleasant adventure.

May I send you a personal email? I have a private question I would like to ask.

Dawn
 
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bj1208 replied to dawngri's response:
sure -

j_mmorelan_60@ymail.com

I have 2 appts this morning - will check email when i get back~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~


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