[Callahan]

Hi all,
I found a thread from another board today that mentions a lot of bad outcomes for SCS that I have not heard of after a great deal of research. Would it be inappropriate for me to post it here? If it is OK, would you please post your thoughts on these comments from the thread. One of the most concerning is that many patients wanted to have the SCS removed and their doctors refused. How is this possible for a doctor to refuse this?

[Hannabananna]

Hi there,
I know a moderator will be by shortly to answer your question on posting from another thread....in the meantime ....

I will give you my experience on removal. I have mine still and keep it charged and sometimes use it. I hope in the future when I have a hip replaced that it will ease pain then also.

I have however wanted it removed as soon as it was in me because it felt so foreign and hurt so bad. It was explained to me that it gets so scared into the body tissue that they actually have to carve it out of you. It becomes a very invasive surgery...I can only imagine as that was enough for me to hear.

I am on hold with all medical as I get Medicare in the spring and then I will be looking at all my options. It bothers me too that I can't have a body MRI.

HB

[Chemar]

Hi
Sorry we cannot allow comments from other forums to be quoted here as most often they have copyright and that would put us in violation

Best just explain any relevant info in your own words

[Callahan]

Originally Posted by Hannabananna

Hi there,
I know a moderator will be by shortly to answer your question on posting from another thread....in the meantime ....

I will give you my experience on removal. I have mine still and keep it charged and sometimes use it. I hope in the future when I have a hip replaced that it will ease pain then also.

I have however wanted it removed as soon as it was in me because it felt so foreign and hurt so bad. It was explained to me that it gets so scared into the body tissue that they actually have to carve it out of you. It becomes a very invasive surgery...I can only imagine as that was enough for me to hear.

I am on hold with all medical as I get Medicare in the spring and then I will be looking at all my options. It bothers me too that I can't have a body MRI.

HB

Hi HB, was the implant feelings (foreign and pain) very very different from trial?

[Callahan]

Originally Posted by Chemar

Hi
Sorry we cannot allow comments from other forums to be quoted here as most often they have copyright and that would put us in violation

Best just explain any relevant info in your own words

Thank you. So glad I didn't violate rules!

[Callahan]

I am seeing information that is not the typical complications associated with scs. The problems mentioned are scs triggered autoimmune diseases, chronic fatigue syndrome, rheumatoid arthritis symptoms, chronic unexplained fevers, chronic headaches, severe muscle spasms, shaking, chronic nausea, pain and implant/battery site pain way beyond typical healing times, extremity swelling, dizzy.....These symptoms are being described as lasting daily for years.
The MD's are saying not related to scs so this is not being reported to FDA/medwatch.
The MD's won't remove scs and other MD's don't want to remove scs that they didn't implant.
Has this ever happened to anyone...wanted your permanent implant removed and your doctor would not remove it?
Also, it seems common that the trial works great for many but the permanent implant does not offer that same results. I wonder what the % is of this happening? If I was told I could have nausea and vomiting everyday after scs implant...or develop fibromyalgia from it...it would make me think twice before agreeing. Hard to make informed decision when I don't think I have all facts. Any thoughts are appreciated.

[Hannabananna]

Originally Posted by Callahan

Hi HB, was the implant feelings (foreign and pain) very very different from trial?

Morning,
As for The trial.....,my injury (nerve) is about waist high just to the left of my spine, the SCS was bandaged to the top of my buttocks...the battery pack was wired long enough to set into my right pocket of my work pants....and the leads were threaded directly into the pain site. The doctor was right on it...I mean so on spot that the pain relief was immediate...about 75%. Two days into the trial the lead moved a bit...made a crackly sound; scared the bejesus out of me....and ALL the pain was gone!! When all was removed the pain was still all gone. Now I was too afraid the pain would come back and it was my last surgery option before settlement of my case. Most of all I had so much family pressure that I was perhaps making this all up and had totaled a car to "fake it" (OMG...I have to laugh now) SOOOO I went ahead with the implant thinking the battery would be put in my right buttock and the leads directly to the left to the injury.
I was not told what a laminectomy is; just that a paddle would give better coverage....I did not have internet access....I was working 45 hours a week and the rest of my time was spent in bed praying to die. I was alone and still can't forgive myself for the incorrect decision.
The implant of the "paddle" was put in at T7...my bra strap line....cutting thru my postural muscles...taking a chunk of healthy spine out and jamming in the SCS paddle.....from the moment I woke up it felt like a broomstick in me.....like it did not fit. The leads had been tunneled in the sides if my spine and they pull and tug and if I go to far I feel them tear inside....run a fever and lay in bed for a few day.
I feel the positioning of the paddle and direction of the leads is imperative to know ahead of time as well as great consideration to the battery site. I had had knee surgeries previous and I was taught to use my arms...then suddenly my arms were useless and caused more pain. Any pressure on my spine (sitting on hard surface)travels to that point and causes pain...still feels like a foreign object in me.

So I gave you way more info than you asked for ....thanks for listening.
I am way better due to my vigilance.

HB

[Hannabananna]

Originally Posted by Callahan

I am seeing information that is not the typical complications associated with scs. The problems mentioned are scs triggered autoimmune diseases, chronic fatigue syndrome, rheumatoid arthritis symptoms, chronic unexplained fevers, chronic headaches, severe muscle spasms, shaking, chronic nausea, pain and implant/battery site pain way beyond typical healing times, extremity swelling, dizzy.....These symptoms are being described as lasting daily for years.
The MD's are saying not related to scs so this is not being reported to FDA/medwatch.
The MD's won't remove scs and other MD's don't want to remove scs that they didn't implant.
Has this ever happened to anyone...wanted your permanent implant removed and your doctor would not remove it?
Also, it seems common that the trial works great for many but the permanent implant does not offer that same results. I wonder what the % is of this happening? If I was told I could have nausea and vomiting everyday after scs implant...or develop fibromyalgia from it...it would make me think twice before agreeing. Hard to make informed decision when I don't think I have all facts. Any thoughts are appreciated.

I am doing check; check; check....6 months post op I got pneumonia...I thought chronic fatigue was just part of it, fevers...way yes and very hard to regulate my body temperature; shaking and speech interruption with high amounts of pain, no dizziness. I can see plenty of triggers for fibro although I do not have it. My battery site has never been a problem...healed and scared in beautifully.

Go read your eyes out...it is a huge decision that will most likely be permanent.
My pain was so debilitating I would do it all again even now and I do hope to have it programed for my hip surgeries.

HB

[ger715]

Thanks for being so upfront about all that you have been thru.

I had a Failed Trial; but only went thru with the trial because my PM doctor kept after me to do it. He wanted to have another trial done. I repeatedly gave reason why I was not up to doing the permanent so it was not worth doing another trial.

It seems so often we hear the trial hits the right spot; but trial is only for a very short time (usually 4 days or so) which appears often to give relief. When permanent is put in there is the chance of leads moving. You have to be so careful not to do any kind of movement that might cause implant to move before being scared in the right place. If it moves and gets scared in the wrong area; not nice. I was not about to risk it myself.

I know there are some on here that are happy with their scs. I often read some saying that the ones that are unhappy are more often on NT; but so many have been on NT prior to their SCS implant and are not doing well. They were here before implant was done so this does not hold true for them only in the posting failures category.

Pam had a regular lead which was recently removed and replaced with a paddle. If I understand correctly, her battery remained in the same place. She said the second surgery was more painful than the first. Most likely because of the scare tissue.

Again, thanks for the explanation of your experience.


Gerry

[Hannabananna]

I know...I tend to always project the negative...

Pain made me grasp for anything....I would like others to be aware and ask and realize the SCS is not the miracle some doctors project it to be.

Over It and Peace Out
HB