Thanks Fiona, and definitely keep us updated!! As far as changing doctors, we told them when the first surgery was a flop that if something wasn't done to fix it, that we were going elsewhere. I was told by the nurse that no doctor or surgeon would touch me in the shape that I was in. Recently, my husband has told them that if they can't figure this out soon, that we want a referral. My dad keeps telling me to go to University of Michigan in Ann Arbor, but right now even a 30 minute drive is excruciating.

Saw my pain dr. yesterday and we discussed my "complaints". He had a rep. come in and try to give me a new program to cover my upper back/shoulder issues but in the end she just couldn't come up with anything.

He came back in after they talked and told me he believes it could be one of three things: First, heavy scar tissue has built over my cervical leads which could mean the stimulation has to be high for neck coverage (where I do get good coverage and am no longer dizzy or have nausea), but it may be just too much and affects shoulders/upper back. There's no remedy to that possibility as he can't get rid of scar tissue as it'll just grow back, sometimes even more than before.

Second possibility, leads have migrated. That would require a CAT scan.

Third possibility, and this is what he's leaning towards and focusing on...that my elbow nerve entrapment has returned. I have connective tissue disease and have had nerve decompression in 8 areas of my body (arms and legs) and he believes that it's quite possible the nerves have become entrapped again and that it is the reason for my current complaints. I asked if they can repeatedly decompress a nerve and he says that folks with carpal tunnel can get their nerve released several times through their lives. Given that when I had my nerve decompression surgeries done my neurosurgeon said I had abnormally thick fascia strangling the nerves (particularly the ulnar? nerve), it certainly is a possibility.

So, I'm going to get an EMG on my arms and go back and see my neurosurgeon to see if I need to get my arms' nerves decompressed again. Has been about a year and half since it was done, so I suppose it's possible that fascia can grow back that quick. I did notice when I had the surgery done the first time that my upper back and shoulders did feel better (as well as my arms), and my neurosurgeon said that was because the nerves in the elbow area go into the C8 area of the neck. I had never heard of "C8", thought C7 was the last cervical one, but diagrams do show C8 exists.

The pain dr. said yesterday that even though we focus on specific cervical discs, they are all connected nerve-wise, and that a problem at one level can cause nerve pain at a higher or lower level.

So, if the need for another round of nerve decompressions isn't the answer then it's on to the CAT scan to see if there's lead migration or too much scar tissue at the leads. We're all hoping it's the nerves needing decompressed again as it's the easiest of all the possibilities.

Not sure how you get to your appts. but I've had to resort to an unusual type of transportation many times in the past. We rent a Budget cargo van, put a twin mattress in the back, and I lay on it to and from the dr. appt. Can be a hassle but has been a lifesaver on many an occasion. Also, when doctors hear that's how I've had to travel to get to see them, it really makes them more attentive to my complaints as it shows I've had to go through a lot to get there and can't just ride in a vehicle like any other "sick" person. Just a thought.

My SCS trial and implant was so different
 

Hello Everyone,

As I read some of these posts, I find that my procedures were so very different than all of yours. First, a neurosurgeon placed mine. I went in on a Monday and had the leads placed, in a permanent fashion, and the wires were attached to a temporay generator. I was only under moderate sedation and after they placed the leads, they woke me up enough so I could tell them if I was feeling the "signal" in the right place. My trial was for 4 days and on the next Friday I got my IPG implanted under a general. I have 3 different types of stim set in my programer that I use depending on my pain. #2 is my favorite. If I need a different program set, all I have to do is contact the rep in my area and they would meet me at my dr.'s office...no charge.

I feel so fortunate to have had a positive outcome from my experience. I'm sorry for those of you who are continuing to struggle.

:grouphug:

Rhonda

Dear Fiona
 

Gosh, all of this difficulty with the cervical area and then having to use a cargo van to get to the doc's office.... I mean...... goodness, I hope you are able to gain resolution with what you describe as the easier "nerve entrapment" situation resolution. I feel such sadness that your implant was apparently not the solution for you... yet.

Prayin,
Mark56:grouphug:

Thank you RhondaIndy
 

I am heartened to see your situation has generally been a positive one for you. Thank you for bringing cheer to the thread.:D

Grateful too,
Mark56:)