Waiting to get my SCS trial/implant
 

Hi..I am new to the boards here, but have been reading alot of your info on SCS implants:)

I am 35 and work in the OR as an assistant in surgery (Orthopaedics)..very physical job to say the least with a norm of 60-70hr/week.

My injury began Feb 09..I had played Roller Derby for the last 5 years--throughout that time I had received many injuries, two requiring surgeries, but had never called in a day in my job...I worked through them all with canes/crutches and just sucking down the pain until I could get home and finally take my painkiller for the day to sleep. Then in Feb during a bout (and this is FYI two weeks before my wedding in Jamaica), I had landed on my arm/shoulder outstretched and while trying to get up a girl landed on my back again and I fell on the arm again. I haven't felt the same since. I had stretched the brachial plexus, dislocated my shoulder anteriorly, but still continued to work and play even with the pain and numbness---stubborn I guess, and not realizing what was in store or how severe this was, but did notice the limitations of the arm immediately. Then a week later the RSD set in and then I knew what pain really was.

So, fast forward through countless MRI's, CTs, EMG's, stellate ganglion blocks repeatly, brachial plexus catheter, TENS unit, physical therapy, Neurontin 3200/day, predinosone doses x 5, Cymbalta 60mg/day, Norco 10 (try to only use at nightime due to work), while continually working while losing strength, functions, and never called in or called off of being on call and pulling on other peoples body parts while mine were falling apart--Then a month ago I noticed major bruising all over my body and after weeks of monitoring them, I had bloodwork done and was having a rare reaction to the Neurontin and my liver was causing the bleeding. Both my liver an kidneys enzymes were elevated 4x higher than normal, so no more med--gotta wean off. Since then the pain has gone sky high and now I have FINALLY decided that I need to put myself first and do a short term disability for 3 months to 1: let that nerve calm down and the pain/RSD to subside for some since I never have done that in 8 months, and 2: My doctors have set up my trial/implant to be done hopefully by mid-Nov to Dec, just waiting on the approval.

I'm not nervous for the surgery, I just am hoping for some relieve to be able to continue my job since it is so physically demanding. My doctor is aware of this, and he is going to try to place the leads in the least area of which it may pull and worst case scenario he has stated we would do the paddled leads with a mini-laminectomy, but that's if i continually pull the regular ones out. Hopefully NOT!

So any advice would be wonderful, I'm tired of the waking every morning with such pain I can't comb my hair or fold clothes, numb fingers, weak arm...I am a very strong person, but this is the first thing in life that I feel is breaking me, I still continue to coach derby and my girls are wonderful and supportive, but somedays it is just hard to go and see all of them still able to do the sport that I love the most and will never be able to do.

Thanks for listening:)



Sin Lizzie

Welcome Sin Lizzie!
 

Thank you for introducing yourself!

I'm so sorry to hear of your accident which has left you facing this pain - RSD is NOT a person's favorite thing to have to deal with!

You've certainly landed on a great place for support though! And we are constantly learning and building from one another. And you, no doubt, will fit right in and be of great benefit to US as well!

Since you are in the healthcare profession, most of what is involved will be familiar territory for you, so at least you are not faced with the fear of the 'unknown', medically speaking.......but still, you are being robbed of your personal quality of life and the passions that you enjoy. That is probably the hardest part to bear, I'm sure we'd all agree on that. :o

From what you describe, it looks as though you will be venturing to get a cervical implant, yes?

I admire your strength and determination as you've been steadfast in your job. Yes, you DO need to take this time for yourself and hopefully the SCS will give you the opportunity to get back part of your quality of life without having to take as many medications. I too had a liver enzyme wakeup call, which led me to having to make some changes in my med intake.

Thank you for introducing yourself.
It'll be great getting to know you!

Also, since you are facing RSD - in case you aren't aware, there is a wonderful RSD/CRPS forum here at NT which is very active and FULL of wonderful folks.
I frequent the Peripheral Neuropathy forum here since that is what led me to get the lumbar SCS to cover the horrible burning pain in both legs.

Again, welcome aboard!
Your testimony will no doubt help many others who are looking in to getting the SCS and we are always here to help the best we can.
You'll gain much support!
:grouphug::grouphug:

Let us know if you need help in finding your way around
Rae

Thanks for all the inspiration to get through this:) Yes, I will be getting a cervical stimulator put in and fingers crossed relieve this aching!! I can't wait to keep continually reading more posts and getting to see what others can contribute..there is so much information, you all are wonderful! Thank you!!!! Sin

Sin, I am a RN and currently work Pre/Post, Circulate and also work the ER and on the floor, am I also currently the Trauma Nurse Coordinator in our small hospital. I have had RSD since a cow (yes) fell on me colapasing my left leg in tearing, cartilage, muscle tendons and ligaments. It took YEARS for my diagnosis, years to find a good pain management doc and I am currently on my 3rd SCS. It does not help all people but I went from being as active as I am now and more, to working homehealth and hospice and back. I have been having trouble with my SCS charging and therefore my pain is worse. I am pushing through it but am finding that I am having more and more difficulty. I will get the darn thing replaced if I must but I will so I can do what I love to do anc care for, at some point I may be like others here who cannot do my job but I intend to go down kicking and screaming

so approximately how long does the insurance take to go through?? my docs are trying to push it as fast as they can considering I'm only off until the first of the year, but do you think the insurance will approve everything prior to then?? i'm not sure what i will do if I have to push my time off because of this and of course my manager is not too happy with me, but all of my bosses (the doctors) support my decision. I do not want to have to go on long term disability because of insurance but in your situations about how long did it take? :) sin

it took much longer then I expected, was told we could get it done before the first of the year, but it was May before I had my permant unit. :mad:

Hi Sin good to meet you


I had my psych evaluation done in November 2009 then I had my trial done in April 2010 but between my Consultant leaving at least 6 weeks before he would implant the permanent SCS and him going on holiday:rolleyes: it was August 2010 before I had my lumbar SCS implanted.
Im not sure how long it takes for your Insurance company to come back to you with the go ahead as I live in Ireland. But mine was done in a matter of weeks. It was just the waiting for my reports and Consultant that took the longest. I do hope that yours will come around real soon and that you will be able to benefit from the SCS as a lot of us here do.
I have Failed Back Syndrome for over 5 years and have constant burning, stabbing, tingling pains in my legs and lower back. Just unbearable at times. All happened out of nowhere. Woke up one morning with a pain in my legs and then my back 'clicked' and it was downhill from there. Ive gone from a VERY active middleaged woman to a person who has hardly any energy and sits/lies around a lot nowadays. But the SCS has helped me somewhat, with the burning in my legs etc but not great from the actual pain and heaviness in my back. But Im hopeful when the lead are fully scarred in that maybe the reporgramming sessions that I am having will benefit me more.
Good luck and I pray that you will have your trial done real soon

Jackie :hug:

Love you guys!
 

Jackie, I swear, you and I are like 2 peas in a pod.
I'm banking on the fact that my up and coming grandson will help give me that 'new spark' that I need.......you've inspired me so much. The 'laying around' with no energy is killing me :eek: .......hey, but at least the pain isn't what it was. :)

And Pooh! I sure was hoping you'd jump on this thread! I immediately thought of YOU when Sin introduced herself!

Hang in there Sin Lizzie! It IS a process, but one worth trudging through!!
:grouphug:

I am not sure about insurance issues... but I can tell you my experience so far. I didn't see my pain management doctor until July. That is when I first learned about the SCS. I had a test to rule one more thing out and then went back to him and said I was interested in moving forward with the process. I had my psych eval and saw him again. My trial is set for October 26th, appointment to meet the surgeon on the 28th, and having the trial SCS taken out the 29th. My doctor is currently working on setting up the surgery--he is going to set it up ASAP and then cancel if the trial doesn't go well. He said that the whole process should be less than 6 months-and it started in July. So, if that is the case, my surgery should be in November or December.

I know that a lot depends on the doctors and schedules--how soon you can get in, etc. For me, it seems to be going a lot quicker than for most that I have read about.

I hope that your doctor is able to push you right through. I've read the whole thread, but that was earlier--so I am having a hard time remembering. Where exactly are you at in the process? Have you had your psych eval? Have they set up the trial yet?

You know Rae when your new grandson arrives very shortly he will put a whole new meaning to your life. The house is filled with such joy and at times pain is a distant memory for those short gorgeous moments with your grandchild. I pray you get tweaked real soon and hopefully benefit from it. Let us know when this happy little bundle arrives ;) you will feel soooo fulfilled. :)