Hi! I am new to your group and am glad that I found this forum before my implant surgery. My trial showed real promise so I have been looking forward to getting the Boston Scientific (paddles) implant. I have had a lumbar fusion from S1 to L3. I am hoping to delay another fusion of T10-L3 (major!). Yesterday I had the implantation. Shortly after being taken from Recovery to an Outpatient "private" room, I began having an excruciating pain in the area of my breastbone. My husband said it looked like I was having convulsions. They brought the Surgeon and Anesthesiologist back in and neither had ever seen this before. They shot me with morphine and when that didn't work they shot me with another narcotic... to no avail. The Boston Sci rep said the pain meds won't work if it's a nerve causing this. The event lasted about 20 minutes; luckily today I don't remember much about the episode. A seizure was ruled out, a heart attack was ruled out and an emergency CT scan showed that the leads had not moved. The Laminotomy was performed at T8. The pain did settle down but it remained with me for the first 18 hours after surgery (it moved from the breastbone to the bottom of my ribcage on my right front side). I believe something happened with a peripheral nerve at T8 on my right side. Has this happened to anyone on this forum? The scariest part is that the drs and nurses had never seen this before and the Rep said that this type of thing happens in about 30% of the implantations.

I would appreciate any of your thoughts on this reaction after surgery. It scared the dickens out of my family.

Hi MrsCJM and welcome to our group! There is much experience here, although I do not recall anyone mentioning a scenario such as yours, so I do not know whom to ask. My first thoughts are Rrae and PoohAC, due to their experience around these parts. Rae? Pooh? Are you out there?

This scares the dickens out of me too!! I am implanted permanently since last June at t8/t9 via laminectomy with paddles. Afterward, they were concerned apparently because I was not coming around out of the anesthetic as soon as they had planned [Apparently, I REALLY liked the place where I was in Lala land]. Finally I awakened, was goofy as heck, but then started to focus and remember my name. My wife was there. After a while, I was allowed to get up and walk, and I walked a LOT that day since I was wanting recovery, the stuff out of my veins, and the ride home to my bed.

NO ONE even suggested among the paperwork I recall reviewing pre-surgery that in 30% of such implants an occurrence similar to yours is possible. Seems like a pretty high ratio. I did not feel it, but goodness, could it manifest later? Wow.

Prayin for ya,
Mark56

Boy! What an episode! How scared you must have been!

I sure can't think of any particular cause of what you are describing.
Was your unit turned on when this happened.....and is the unit on now as you describe this pain moving down your ribcage? If so, perhaps the placement and/or settings of the electrodes are such that the stimulation is reaching around the front - like a 'grabbing' sensation.
I remember when I was initially getting my settings, the Rep asked me if the stimulation was reaching my lower extremities and I said 'yes'.....and as she continued turning up the amplitude, I said that it was starting to stimulate 'too much', as in - around my waist and that's when she said 'ok, then we don't want to go that far'.......

Does the pain stop when you turn the unit off?
If not, then perhaps it is possible that your dura was punctured and nerves were injured (as you have said)....... do you have a severe headache, as would be evident with a CSF leak?

I'm just throwing some thoughts out there......?.....
I guess the main thing is knowing if this pain is happening when your unit is on or off? If your SCS is on, then it would probably be something to do with the settings......
If you are in this pain and the unit is off, then it could be any number of things........of which they probably rattle off as they read you the 'small print' of the risks involved with this....(or any) surgery procedure.....

I wish you the best.....
Please keep us informed of what your medical team is doing about this....

Truly Caring
Rae

Recently, in manipulating my remote control higher and higher among the settings to overcome a pain spike, I actually transcended parasthesia, the intended effect of the device in impeding pain signal transmission to the brain, and produced a paralytic effect. Telling my doc of this, he explained that the device strength of use could be such that its signal would reach all of the way around the cord to the front where the nerves controlling lower body motor function, bowel, and bladder are located and affect the whole lot.

Precisely the effect I induced in using my stim to overcome pain since I have no other crutch, having withdrawn from all pain medications. I learned there have been no papers published on the topic I had quite by accident experienced, but doc was both concerned and interested that I had produced such an effect. His recommendation was more moderation in use.

As for me, I was glad when the proper nerve functions as my body now knows them were restored once I backed off of the signal strength after the pain had been brought under control.

Food for thought....... there is still much about which science or business know little when implanting artificial devices within the human body.

Careful,
Mark56

Thanks for the replies and thoughts on my situation. Rrae, you asked if my unit was on when the event occurred.... yes, it was since it had been turned on during surgery. Once this big pain hit me, they immediately turned the unit off. It remained off for probably an hour and a half before the Rep came back to my room and turned it back on. Having the unit off did not relieve any of the pain. The pain was unlike anything that I had ever experienced. I stayed overnight at the hospital for observation. I was seen by a Cardiologist who looked over the EKG, heart muscle enzymes etc and she promised me there was no indication of a heart attack (I was glad to hear that). The residual pain remained all day and most of the night. By my release from the hospital this morning, the pain was mostly gone. I made the decision to turn the unit off before I went to sleep lastnight...... just to give my shocked body a rest. I plan to leave it off a couple more days, at least until I'm over the surgical pain. I plan to do some research of my own to see where (or if) it is documented that the implantation can cause this type of nerve reaction.

I will post any interesting information that I learn from my research.
Ms CJM

We have another member here who I think might be of help.....
I've been reading the testimony of Patti_Christmas and see that she has described something similar......
I hope she sees your thread and will have something to share that may be of help......
I'll post a link to one of her recent posts describing her ordeal......and you can contact her via visitor message on her profile page or post on her thread here at this SCS forum......
Here is one of her most recent posts (if you haven't already seen it)......and as I read thru it, I see she describes a similar chest/abdomen/ribcage issue....

http://neurotalk.psychcentral.com/post748971-2.html

This is very intriguing....and alarming!
I'm hoping you get answers very very soon!

Rae

Hmmm this is the 1st time I have heard of this but during multiple attempts to "reach" my SI nerve they have "inavertantly" triggered nerves in my abd and in my rib area. When I reported where the sensation was occuring the immeadiatly turned off whatever they had turned on (each one of my leads has like 16 electrodes along it). So maybe yhis is similat 2 what happened 2 you?

When I was having mine implanted I do remember (through the haze of sedation) being asked if I could feel the sensations and I told him that I could feel it in my stomach and upper body.....next thing I knew he had it in my legs. Sounds awful what you had to go through and Im not surprised that you turned off your stim in case you got shocked again.....

I do hope they can rectify whatever it is that is going on in there


Jackie

Hi Ms CJM,

I'm also new to this site (takes me awhile to get around and find all the SCS posts or RSD - I'm trying to read everything to educate myself ). My response will be long, but please bear with me and really read what I am typing. Ask questions - send me a private message or email. Chest wall stimulation (even abdomen) is very serious, and I think the doctors and reps don't want to explain what is happening, and they might not fully understand how to correct it. It is also very scary to the patient what is happening, and what it could possibly mean.

My stim has been nothing but trouble. I've experienced the same symptoms you have described many times. When the stim was first implanted, I had to wait about 4 or 6 weeks before it was turned on. Coverage was a bit hard to obtain in the correct position, and the day after it was turned on, I was taken by ambulance to the hospital and admitted because they too thought I was having a heart attack. What it turned out to be was caused by the stim (I knew it, but the ER doctors or cardiologists didn't have much experience with the device), I did have to stay overnight, blood work was fine, heart seemed fine as long as the stim was off, and I passed my stress test with flying colors.

After this episode and I was released, I was re-programmed. I was re-programmed so many times, I even asked them to give my husband the "hand-held programmer" and to teach him how to do it so I didn't have to come in all the time. Finally, because my battery moved in a position where the controller or rep could no longer communicate with it, another surgery was scheduled and they decided and suggested to implant a paddle as opposed to the free-floating wires.

My original implant was performed on Sept 21, 2010 - my replacement was performed on Dec 2, 2010. During that time I could not use the stim, the pain was horrible, even worse then before because now I had additional pain and could feel the wires in my spine.

My paddle was implanted by an orthopedic surgeon. This time, the stim was going to be turned on immediately after surgery. Apparently, it was also turned on as the paddle was being placed and according to them I was awake. It's funny because I remember nothing. I remember the first one when the wires were being placed and talking with the doctor and the rep, but I can't remember the 2nd one. Any way, in the recovery room, the rep turned me on, and while laying completely still, I had good coverage. She then had me move, and I practically jumped off the bed. She turned it off, and we thought it was because I had some major swelling going on and everything was cross feeding. I was told that with the paddle, I would not experience the cross feeding, the chest wall stimulation, that it was a more stable, direct method.

At my 2 week check up with the orthopedic surgery, the P.A. was very concerned about my new symptoms (I had reported them to the pain management doctors prior) - it seemed the RSD was flaring and now in my back, shoulders, neck, arms and hands. She advised the pain management doctor on my case, he saw me and thought it was just because I had two pretty intense surgeries so close together and to give it some time.

We left the stim off for a few more weeks hoping the swelling would go away. The only thing that happened is my new symptoms became more intense. I am still having trouble with sensations in my heart, they are even worse with the stim on. When I turn the stim off, they seem to subside within about an hour or so. With the stim off, I even have the "sensations" in my leg for about the same time, and I asked two different reps, got two different answers. One rep said that is common, some people continue to feel it, others say it goes away as soon as the unit is turned off. The other rep told me that it is not normal for residual sensations for the length of time I am experiencing it.

At yesterday's appointment, the rep gave me a new program. One in which I can only increase or decrease the strength and not the pulse. He is trying to rule out whether or not there is something going on with the stim or my heart.

Well, last night I had to once again turn the stim off because of the funky feelings in my heart. It's hard to explain the sensations, but I will try to see if that is what you are feeling. I can feel my heart beating, it feels like it's racing, and beating hard. It also feels icy, kind of like an ice cream headache in your chest but it burns also. It's more intense with the stim on. I've turned my stim on as I am typing this so that I can describe everything to you, so that I can re-experience it as I am describing it and not miss a feeling. It also feels as though something is sitting on your chest. It also seems to cause horrible muscle craps in my bad foot, I am suffering one right now. I did turn my unit back off, it also messes with my head.

I don't know what is going on really, but I did some independent research last night. I know that when they implanted my paddle, my RSD spread/flared into the upper part of my body. I am concerned now after reading things that it's not just "chest wall stimulation", but has the RSD spread to outer membrane of my heart? I believe that is what the rep was trying to rule out, but was afraid to tell me directly. This is a scary thing, as so far the blocks I am receiving now aren't working and seem to be making things worse.

This is the website I found last night. I don't know how old or new, how long since it's been updated. I just read this stuff and freaked. I will post the link, so you can read it and ask your doctors about it.


http://www.rsdhope.org/ShowPage.asp?PAGE_ID=5

The site does make sense. I don't think enough studies have been done on RSD, it's a horrible disease. I don't think the doctors want to tell you the possibilities involved, the surgery for the implant might or might not make things worse.

I don't want to scare you (or anyone). I just want to help find the answers. To help myself, to help others. I'm scared. What is going to happen? Has it spread to my heart? I have two teenage kids at home that need me - I have a husband that needs me. I don't want to think the worst, but I have been far from the text book patient, am I too far advanced for help? Are the injections going to work or make things worse? If only they had told me that there was a possibility of this spreading - if only I had really educated myself as opposed to trusting the doctors 100%. Research! Ask questions! Get answers!! Give them this information - ask for the testing to see what is going on with your chest. Determine if it's the stim itself or if it has "flared".

I am hoping that I am just "overstimulated", I am going to give my body a rest. I will have no more pokes, no more surgeries. I am not going to use my stim until my upper body settles down (if it ever does).

Good luck to you, and please keep us updated!

Patti having now read your last post I have to say that I would be of the opinion that your SCS isnt worth all the hassle. I know that sounds very harsh. But if I had to go through all that you are at this moment in time and having to turn your stim on and off then I think I would insist they take it out. Especially if you have to have blocks even AFTER the implants!......

Maybe there are other issues going on but it appears that the stim is certainly not helping, if anything it sounds like its making things worse I dunno just thought I would share that with you.... I hope I dont sound too pessimistic but I feel so bad for you having to go through such agony!

Take care
Jackie