United Brachial Plexus Network, Inc.

Valiant Effort, Real Trooper, The longest we have ever had anyone on the table. These are not the words you want to hear when the results your SCS procedure are being discussed. However, those exact words were discussed yesterday afternoon about me. My appointment was at one PM. I was asked why I was not there fifteen minutes before the procedure. I informed the nurse that I received a call telling me my insurance approved the procedure and my date was June 23, 2008. I was thrilled because my procedure was scheduled the day before I was to meet a psychologist. I was told insurance usually requires seeing a psychologist prior to approving this procedure.
I received one of those automated phone calls asking you to press one to confirm the appointment or press two to cancel it. I pressed two. Why drive to Boston to see a shrink to a procedure approved if you are already approved. Come to find out for some reason my appointment was still scheduled. Fortunately, the receptionist discussed the appointment with me and I told her I thought it was cancelled. She went ahead and cancelled it for me.
Back to the procedure. I needed to lay flat on my stomach with my back perfectly straight for at least an hour. Setting up a support for my forehead so my face could be down and I could still breathe without being chocked. They wanted both my arms above my head. Problem – my left arm does not have that ability. They set my left arm down by my side.
They proceeded to get everything else set up. Twenty minutes into the preparation, my left arm started to spasm. I had to sit up to get it under control. I also took 6 mg of Dilaudid and fifteen minutes to wait for it to start to get into my system.
Back to where to place my arm. There was a surgical tray with an adjustable height lever. Dr. Sethee took all the sterilized equipment including a dish filled with liquid to another location without dropping a thing. They were all on a cloth. Very impressive to watch. The tray was moved over to my arm, dropped as low as possible. The tray was still too high. The OR bed was then raised up so the tray would be low enough. I could not believe what they were going through to make me as comfortable as possible.
The procedure finally started. Staying still for two and a half hours was not easy. It felt like they were poking holes across the lower part of my back. More and more Lidocaine was being added as I “Ouch, breathed in the squeak you make with pain and the That Hurts.” My arm started to spasm again. I tried to control it as best I could. I asked how much longer would they be. I was asked if I wanted to stop. “No! Let’s get this done. Ten minutes later, they said they could do no more and would have to try again. “Are you serious?”
The problem was they ran into a roadblock in my spine where the end of your shoulder blades comes together. They tried going straight, over and around on both sides. It was just not possible to get the lead past this area of my spine. There was something blocking it, scar tissue or something.
A MRI needed to be done to see if they could enter higher up. This is a riskier procedure. They need to know the area of the spine is wide enough for them to enter and thread the lead up to my neck. If it is to narrow it can’t be done because of paralysis. The MRI will tell them everything. They also know how to set everything up for my arm. Putting in the IV won’t be an issue this time either. They now know I need a neonatal IV because that is the only size my veins can handle.
The MRI is Friday morning. Today I am putting ice packs on my lower back. It will take four -five days to get the results. My next SCS will be scheduled as soon as possible after they have the results. They believe I have a good chance of success if the space in my spine is wide enough for them to run the lead to my neck. Yeah! I’m going to do this again. Yes! It hurts. The day after I’m beyond tender in my lower back. I have no idea what it is going to feel like once I have the lead(s) in me, the pain in my lower shoulder blades and a remote control I need to operate. If all this helps reduce the types and levels of pain I deal with now it is worth it. I just hope it is successful this time.
I’ll keep you posted as the saga continues.
Janelle

OMG Janelle, nothing is easy. I have tried to post to you a couple of times in the past few days. Maybe I have?
I remembered your procedure was coming up and just wanted to lend support. I really can't believe you are awake for this. Do you have to be? Now that I ask you this I recall a procedure done on me a couple of years ago when my 'team' went to my cervical spine through the front of my neck and I was wide awake and commenting while my doctor and I were literally eye to eye. What a strange feeling. Are you using some type of voice recognized software to type messages? I can hardly do this anymore. My right shoulder is killing me and my elbow is raw. I may drive up to Hampton this July/August, my Mom went back to Mass General and eventually ended up in Sunbridge Rehab/Nursing Home. I don't know if that's back in Hampton near home or where? My hometown 'Homecoming', Yankee Homecoming is 50 this year. It is the last week in July or the first week of August. Anyway...I think I'd like to meet someone like this and you especially because of a sort of kinship we share and your strength.
Bully for you Janelle. Aside from the redtape BS it seems like you have it under control.
TTFN,
Scott

Scott,
I would love to meet you. My private email is zukjl@comcast.net. I can give you my info using private emails rather than the public listing. I am not familiar with Sunbridge Rehab/Nursing Home. There are many nursing homes so I don't profess to know them all.
I actually have the Dragon software installed on my computer. I just haven't taken the time to learn it so yes I do type using just one hand. I really do plan to take the time to learn to use it. Over using, my right hand is not a good idea; I had Carpal Tunnel surgery on it about twelve years ago. I was always cautious of over use of my right hand. I even used my mouse to my left hand in order to relieve some of the use issues. Who knew I would end up with use of just my right hand? Still find that fact incredible. I can’t be the only one that has a problem letting the words sink into your head that the word paralysis now applies to you.
Yes, you do have to be fully conscious during the entire procedure. They were concerned with the amount of Dilaudid I had taken. I assured them it was not an issue at all as far as my clarity was concerned. The next time they want me to take the Dilaudid 20 minutes to half an hour prior to the procedure. They would also like me to take eight mg's rather than the six I had taken. I need to have a driver after the procedure so the drugs are not an issue. They ask questions during the procedure. I’m sure there will be allot more once the implantation is more successful.
Once the leads are implanted, I will be conferring with Mike, a SCS Specialist, directing how the leads are working and what adjustments need to be made. We will be working together about an hour. I will then go back into the OR room for some final procedures to be done. I will not be able to take a shower for several days. I will be speaking with Mike at least daily. I will have his cell number. I’m to call with any issue and question I may have. It is very important we work closely together.
I have to admit I’m not looking forward to how uncomfortable I will be in my back again. In fact, I’m willing to bet I will probably be even more uncomfortable once the procedure is done and all the leads and equipment are attached. After the final implantation is done, I expect that will be even worse.
If the goal of reducing pain is accomplished it really will be worth it. The long run always has to be long doesn’t it?
Janelle

I just heard from Dr. Ahmed. The MRI shows that I have Spinal Canal Stenosis. He said I could get a second opinion but he would not recommend SCS (Spinal Cord Stimulation) for me. It is possible to place the leads on my spine but continuing of narrowing of the canal will most likely occur. This would increase the chance of paralysis. Obviously, I told him I would not consider a second opinion when the best Dr. in Boston is telling me he would not perform this procedure.
I’m very disappointed in this outcome. I see Dr. Mao Friday to discuss other pain management alternatives. The spasms and pain have my life on hold. I see Dr. Lee Monday. They have got to come up with a plan to give me quality of life back. The spasms and pain control everything I do. The fact that ice has turned my life into a tail spin is incredible. There has to be something that can be done to stop this downward spiral. I’m open to all suggestions.
Janelle

Janelle,
I'm sorry to read this. That has to be a big upset in your hopes.

I'm curious how they hadn't spotted the Stenosis earlier. I assume it is due to the accident. I had issues with Stenosis for about four months after my injury and then it disappeared on it owns. When I'd look down at my toes, like pressing my chin to my chest, my legs and rear-end would feel like I was standing above a subway with a train roaring past below. I was told it may get worse, and that it may clear up on its own. Luckily it resolved itself.

My series of MRIs for my SCS (that I still waiting to do the trial for) did not detect the Stenosis, but then again I didn't mention it to my surgeon. I'll ask to have it to be looked for just in case. Thank you so much for posting your experience here, please keep us updated.

Chris

Here's an Amino Acid supplement I've been taking for the last few months and has been helping out quite noticeably with my pain. Give it a try!
http://sci.rutgers.edu/forum/showthread.php?t=99405

There used to be a post here about it, but it seems like it has disappeared.

Damn, damn, damn Janelle.
Just how much is enough and how much is too much?
I am forever asking myself just what was it that I have done to deserve this?
With that I include everyone to who this dreadful affliction has touched.
It seems like it's a leprosy that doesn't get better and it is a challenge just to accept it.
Regulars here like Dan, Christopher, Carolyn, Sue, Amy, Richard and Kath, and too many more all talk about getting past the pain and accepting it as it is and moving on. Somehow they all seem to have learned to put it behind them and only deal with minor outbursts. Learning to live this type of pain is pretty difficult , actually learning anything at this point is quite difficult when so consumed with the pain to begin with. Where do you start? It's hard to concentrate on draining the swamp when you're up to ass in alligators.
I took my early retirement from Texas Department of Transportation as direct result of this 'spinal stenosis' and something that sounds like spondiolistis(???). both of which contributed to my legs going numb and not being able to sit, stand or walk. All that is l4,l5 and l6. I also have degenerative disk disease and other seriousities in my neck. I thought that thi was bad enough until a year later, almost to the date of retiring, when this befell me. Brachial plexus?? What kind of hellish plight is this anyway?
Well the point I'm sort of trying to make is that I have gone so far beyond the point of pain I refuse to accept what doctors have to tell me and just say ring it on. Bring it all on, but to me! Bring it to me not anyone else. Damn, damn, damn Janelle.
I am terrified to ask 'what next?'
I'm here for you Janelle. Please look beyond my illiteracies(?)
I'm not going to spell check and I am going to make up words as I see fit.lol
Scott
Ps I just remembered your e-address.
I'll 'e' ya later.
Scott
http://laserspineinstitute.com/

NEVERMIND
I just went back and read responses to
Ode to coincidence by Corrie ten Boom.
Don't I feel small again?


Message was edited by: swhite1