explorong SCS after T-11 to L-5 fusion
 

Hi, I am new to this thread and am exploring the option of a scs. Here is my story; I am 38 and about 18 months ago I was in an auto accident and suffered a L-1 burst fracture with retropulsion (bone fragment schrapnel) into my spinal cord. I had emergency surgery ater the accident which resulted in a spinal fusion from T-11 through L-5 including 2 12 inch rods, 24 screws and a 4 inch cross stabelizing bar at T-12.

Since the accident I have unyealding leg pain in both legs however worse on the right with associated neuro deficits and severe back pain from both the initial injury and the extensive hardware. I have tried just about every medication combination that you can think of from duragesic patches to oral meds, etc and after all kinds of complications I discontinued ALL medication in March of 2010 and since that time I just "live" with it. On a scale of 1 - 10 I can not remember a day since my accident that is less than a 7 from both leg and back pain and I am discouraged, depressed and dispondet about the pain.

At the time of my accident I had 15 month old twin boys and worked full time in the Emergency room and now I am unable to walk more than 50 to 100 feet every 3-4 hours and can not sit for more than 20 to 30 minutes at a time before I have to lie down. My sleep pattern is awful and I get fractured segments of sleep for 20 to 30 minutes at a time before pain causes me to wake and switch positions. I had been told a year ago that due to the free floating bone fragments in and around my spinal cord and the extensive hardware I was not a candidate for a SCS. I recently had additional tests and met a new pain doctor that feels I could be a candidate because the damage in my back is as "healed" as it is going to get.
I am afraid to get excited but amexcited to learn that there may be a light at the end of the tunnel, even if it is the light from a single match! at this point I will take it! I am curious about your experience; what was your stim surgery recovery like, what brand do you have, why have some people had more than one, have you tried a pain pump? if yes which worked better for you, is there anyone out there with similar injuries that has a stim? THANK YOU ALL!!!!!!

Please forgive my spelling errors, I did not proof read!!!

Welcome Twinmom. Thanks fir sharing your story. I'm so sorry to readabout your accident and hiwvit has left you so debilitated. I've decency had a scs implanted, august 5th 2010. I suffer with Failed Back Syndrome. Mi e wascaused from a herniated disc which continued on to two spinal fusions with rods screws etc. Unfortunately that didn't help the pain in my back and legs. So the scs was my last resort. However all my metal as taken out a couple of years ago due tonit causing more pain than not. Thereare a whole bunch of wonderful people on this site whole have gone through the scs inland. Many success stories too. So take time to read throughout many of the wonderful posts and also the sticky thread at the topwith lots of valuable information
So far my scs is helping with the searing pain in my legs and only some inmy back. I need tohave more reprogramming done over the next few months. But definitely I do get some relief which is a bonus after having this dreaded pain for over 5 and a half years.
I hope you find and get all the information you need in relation to the scs.

Thanks for sharing your story :)

Jackie:)

Welcome Twinmom. Thanks for sharing your story. I'm so sorry to readabout your accident and how it has left you so debilitated. I've recently had a scs implanted, august 5th 2010. I suffer with Failed Back Syndrome. Mine was caused from a herniated disc which continued on to two spinal fusions with rods screws etc. Unfortunately that didn't help the pain in my back and legs. So the scs was my last resort. However all my metal was taken out a couple of years ago due to it causing more pain than not. Thereare a whole bunch of wonderful people on this site whole have gone through the scs implant. Many success stories too. So take time to read throughout many of the wonderful posts and also the sticky thread at the topwith lots of valuable information
So far my scs is helping with the searing pain in my legs and only some inmy back. I need to have more reprogramming done over the next few months. But definitely I do get some relief which is a bonus after having this dreaded pain for over 5 and a half years.
I hope you find and get all the information you need in relation to the scs.

Thanks for sharing your story :)

Jackie:)

ps I do apologise about the typo errors in this post, but I wrote it this morning with my iphone, hence the mistakes !!!! DUH!!!

Welcome to our little family :D

I would definitely give the SCS a try. I have had back pain for years (during which time I've had 5 back or neck surgeries) and also have peripheral neuropathy which includes some areas where my nerves have become entrapped due to a connective tissue disease I also have (yep, I'm a mess, too:winky:)

I was on the strongest pain meds. and was headed for a life of being on methadone (which I hear is NOT a good place to be), when my dad told me he had heard a nurse talk about her SCS experience. Before that I didn't even know such a thing existed and thought my life was going to be one of feeling drugged, depressed and watching life pass me by.

I got a referral from my neurosurgeon to a pain mgmt. dr. and he gave me the DVD to watch and said that if I didn't do something I'd be bedridden in about 10 years. That was rather shocking to hear as I'm only 51 years "young". I was more concerned about my husband having to take care of me in that condition (as if he hadn't already had enough to deal with). My pain mgt. dr., who also was the one who did the surgery, said that the SCS is used for nerve pain and nerve-related diseases. So I opted for the trial thinking what the hey. I went through both a cervical and lumbar trial, about 3 months apart, and got such pain relief I said yes to getting the two permanent implants.

While the post-surgery has been challenging (don't do this, can't do that etc.) and will continue to be for a good year (they say to give it a good year between surgery and "full" healing where you can't mess up the leads), the pain relief I have now has been well worth it. I'm not going to lie and say I'm now 100% pain free as I do have other health issues to deal with, but the significant reduction in pain has been well worth it and is making my other health issues easier to tolerate.

If I could offer you any advice it would be this: get the pain mgmt. dr., or surgeon, who has done A LOT of these procedures as his/her experience is just as important (if not more so) as how you take care of yourself after the surgery. Good luck!!

Welcome Twinmom!
 

Welcome to NT! You've come upon a WONDERFUL place full of caring people who 'know' what this is all about.......living in this amount of pain is a complete ripoff, and I am so very sorry to hear about the accident that has left you in this condition......:(
AND you have young twins!! (I too have twin boys age 15)......

Like the others have said, this is a wonderful 'family'....and we talk 'real talk'....not the commercialized stuff you get from searching the websites of these units......
The good news I'm seeing is you've got a Dr who wants to give you a chance at this! If you've got a good relationship with your doctor and he's looking out for your best interest....then DO THE TRIAL!! It could possibly be something that may give you back a decent quality of life!
Several here have their SCS's due to car accidents.
If you have insurance to cover this, then go for it! The trial procedure will give you a chance to weigh your options and you can find out if this is something that may work.
If the trial proves to be of no benefit, then at least you have tried.

I hope you stick around and feel welcome here.....
We all look out for each other and this forum has been a Godsend ....
Even if you don't go with the SCS, the other forums here are full of folks who know what it's like to live with chronic pain.....and we all learn and grow from one another.
I felt completely alone in my battle until I came upon this wonderful place....

It's good to have you.......
Just holler if you need help in finding your way around.....

Truly Caring
Rae
:hug:

Thank You!
 

I want to thank everyone for their posts and for all the information. I am still curious to know the what kind of injuries other people are dealing with, I have been hard pressed to find anyone out there with similar injuries to myself and am truly eager to know what your recovery has been like and if SCS has worked for you. I am also interested in knowing if anyone has tried a pain pump, what kind etc.

Good Questions!
 

Others will surely join on your thread and share more detail...

Some who come to mind off the top of my head are "Vannafeelbetter" (she actually has 2 SCS's and speaks very highly of what they have done for her since her car accident(s)).... "Bobinjeffmo" has Pain Pump.......Mark56 would be an excellent thread to read (Entitled 'Boston Scientific') - Marks thread has over 450 posts which chronicle his journey and bravery as he received his SCS......he is currently on the job market ! (which 5 years ago seemed an impossible goal to even dream of reaching!).........

You can find members at top of page by doing a search in the 'Members List".
You can post a visitor message on their profile page and they will gladly help in answering questions and share.

Others, like myself, have SCS due to chronic pain conditions (mine is peripheral neuropathy/CRPS in both legs)....6 years in to this condition and still no known cause (?).......I've had my SCS almost 9 months. It's working well and takes about 70% of the horrible constant burning pain.......

As you read and get to know our stories, you will see that there is a broad spectrum of testimonials......not all are 'happy endings', but these implants can and do offer better quality of life......though there is much involved with getting one.

Also, you may want to post your specific spine injury on the "Spinal" forum here at NT and perhaps you'll get feedback regarding your injury and healing.
You've had a doozy of an injury and I hope you get feedback that can target this.

So glad to have you here
Rae
:hug:

Hi Twinmom
 

Hi Twinmom, welcome to our group :) I am so sorry about your pain and your car accident. I have had my stim (Boston Scientific) since 2008, and I had to get mine because of injuries I got from a car accident. My injuries were different than yours because it happened because I had just had back surgery for a herniated disk the summer before my accident and there was scar tissue from it wrapped around the nerve and when I got hit (multiple times) it ended up causing nerve damage. I was in constant pain in my lower back and both legs and I went through injections, meds, physical therapy, etc. but we finally did the trial scs and I was able to get relief. After the trial I then had the permanent one put in and it totally gave me back my life because I was able to walk all over campus and I was not on any pain meds anymore (now it took awhile to get to that point). I was unable to do any spinal surgeries to fix the nerve because they said it would cause me to be paralyzed so the stim was my last resort! Ihad to have a revision in 2009 because my leads moved and was okay until I fell last September. I have to have another surgery for my stim though because my leads moved after a fall and they need to change things so I can get it working right again. The surgery itself was not too bad, I have had many surgeries and I think the most painful one was my hysterectomy. You just have to becareful of limitations as you heal so the leads scar into place and I went back to school in about a month. But everyone's experience is different and the surgery I am going to have is to put in the paddle leads which are supposed to stay in place more than the other leads they have done, it is a big concern for me because I fall when my legs go numb. I will say though make sure you have a really good pain doctor that you trust because I have had to change mine and I am so thankful I did! That is my experience and I hope it has helped a little bit. If you have any questions feel free to ask! I definitely think you should consider the trial though because it might be able to help you! I don't know anything about pain pumps, just the stim. I am sure others will share with you their experiences too. Take care :hug:'sTara.

Rrae,

thanks for the info, I truly appreciate it. I have one more question; what was your recovery from surgery like? I have read everything fro 8 weeks to a year for full recovery from SCS surgery. What did you experience?

Yay!
 

Thank you Tara!
See how wonderful these folks are! :)

Well, regarding the surgery/recovery.....Tara said it well.
I have the percutaneous (under the skin) lead placement. Tara is speaking of the more involved type of lead placement where they remove a small piece of bone in the spine to secure the leads. This is the 'Laminectomy' and it is a more stable way to have the leads placed with a much lower chance of lead migration.
You've been thru serious back surgery, so you are no stranger to what is involved. The basic emphasis while recovering is to take it easy (the incisions of course will be sore for a week or so and ice packs will be a welcome relief).
No bending, lifting, twisting (BLT's).
Listen to your body.

This is all about regaining a quality of life and (hopefully) to not have to depend on so many medications. It is not a 'cure', but it sure has been an improvement to the life I had while imprisoned within my own home due to the pain and depression it brought.
Before I got the SCS, I felt as tho life were passing me by and I'd watch my twins come and go and I felt like a complete loser. High doses of pain meds did help in getting me thru the days and getting them to and from school and such, but nothing compares to actually being able to DO things WITH your kids. I do still take breakthru pain meds, but at least I have been able to get away from the high dose Fentanyl patches and my life doesn't revolve around the pharmacy the way it used to.
I'm still on the mend and in a learning curve with everyone else and that's why we've all become so important to each other. We share every piece of advice or issue we learn along the way and this forum is priceless.

I'm sure you've been reading thru the threads here which are full of the details we face (with some silly humor thrown in for good measure :rolleyes:)

Just continue doing alot of reading the posts people have shared and, like Tara emphasized - make SURE you have a GOOD Dr whom you trust and who is well-versed in these procedures.

You certainly won't be alone as you go thru the process.....
:grouphug::grouphug::grouphug:

Hi. I have myappt this thursday with my pain Dr. to discuss the SCS trial. If I am approved to do the trial is there a long process to starting it? I know it depends on their schedule etc but are there other things to consider? also how long did you have to wait between the trial and the surgery? are there things to consider there that I am unaware of?

Hi Twimmon....great to hear you have an appointment with your pain Dr.....

Initially when you speak with your Dr and discuss the procedure for the SCS the is a psych evaluation that has to be done. Have you done this already?
If so and when your insurer gives you the 'ok' it then depends on the Dr's schedule as you say yourself.
My evaluation was in November 2009 but my trial didnt take place til April 2010 due to the evaluation report being 'misfiled'.....an administration error on the psych's side. Once I had the trial and it was agreed I would have the permanent implant it wasnt until Aug 2010 before that was done. Again the delay due to my Dr wanting to wait a minimum of 6 weeks post trial before he would perform the permanent implant. But then he had his holidays so thats why it was longer. However, I know that I have read of some posters having their trial done and within a few weeks having the permanent implant done. My Rep(Ive an ANS SCS) did say that my particular Dr did take a long time in general (6 weeks min) before he would implant the permanent SCS. That some other Dr's would go ahead almost immediately. So I had it done Aug 5th which is just over 11 weeks ago now.
Once its in the recovery time is slow and well I found it quite sore. As you have had lots of back surgery, you will be familiar with the pain that goes with these operations. It isnt as severe but its still quite sore. So be prepared for that. I must say I wasnt as prepared because I didnt find the trial so bad I assumed that the permanent one was similiar:rolleyes: But it wasnt it was sore. It took me about 3/4 weeks to get past the tenderness of the incision sites, but I often get a twinge now and then at both sites. It also took some weeks for the inflammation to go down. As my Rep said to me, you come across as being 'brave' so make sure that you take it EASY :rolleyes:which I did, no bending , twisting, stretching, lifting etc.....its hard but worth it!
As Rae said there are lots of different threads which I also used to tell me exactly how I should be at different stages. Wonderful help too. I came on her at week 2 and have stayed since;)
So good luck on Thursday.....take care :hug:

Wishing you the best!
 

Your appt this week will be a VERY important one. Hopefully someone is going with you? (2 heads are better than 1 :rolleyes:)....and write stuff down!

Not sure if I pointed you to the 'stickie' thread at the top of this page.....it's FULL of very important and easy to comprehend information......check it out!
Here is the link to some basic FAQ's:
http://neurotalk.psychcentral.com/post689330-12.html

And here is a very impressive info site that Fiona found:
http://www.nationalpainfoundation.or...e-technologies

Best wishes!
Let us know how it goes!
Rae

You guys are so wonderful! I am both excited and anxious for my appt tomorrow. Yes, I have someone going with me, my husband has been @ every single appt since day one. he was there in the ER after my accident and was the one who broke the news of my injuries etc when I regained consciousness. I have a whole list of questions for the Dr and I am sure we will be there awhile. I am so eager to do the trial, I just want to know if it will help me! I think that once I know that there is in fact a light at the end of this tunnel I will be able to settle down and semi-patiently wait for the process to move forward. This is my first "real" winter since my accident as last winter I was still in a brace and on heavy amounts of pain meds so I was truly unaware of changes in my pain as the weather grew cold but this year I am on NO pain meds and TRULY, TRULY aware of my pain and how it is changing with the cold weather and it is only October! I have many weeks before the real winter cold sets in and many months til the warm weather comes back. I would so love to be able to be more active and right no I am so limited by pain in addition to my injury, neuro-deficits etc. My twins will be 3 in less than a month and I would love to be able to take them outside to play or take thm for a walk or push them on the swings. If everything goes smoothly (and timly) I could be in store for a completly different spring/summer next year. Fingers crossed!

Good luck
 

Hi Twinmom:hug:

The very best of luck to you for tomorrow. Its good that you have your husband going with you too. What WOULD we do without them!;) I too hope that one day you will be able to bring your beautiful twins out to play and lead a more fulfilled life. Keep us updated :)

Wish me luck! on my way to the BIG pain Dr. Appt!!!!!:)

Good Luck today Twinmom.....hope all goes well for you :hug:

Sorry for the delay in getting info up, I have limited internet conx as we live WAY out in the country and only have dial up available! and with tein 3yr olds running a muck it can get difficult finding time to get online.

I went to see my Dr. last Thursday and I really like him a lot, he listened to everything I had to say, answered all my questions and we put a plan together that I like and it looks like things are going to move pretty quickly. He ordered bloodwork and Xrays which I did that day. I am scheduled for my SCS psych eval on Friday as well as an MRI. followed by a series of diagnostic medial nerve branch blocks that will be done 24 hours apart the week of the 15th ( I had to skip the week of the 8th because I am going to be away for two days for my anniversary - first time we have done anything since my accident) and then I have a follow up with the Dr. on the 2nd to go over all my results and schedule the SCS trial which can be scheduled as early as 11/29! He also gave me 2 new meds; fluoxatine 20mg daily to help with my "bitchiness" and Trazadone 50mg @ night to help me sleep. I stopped all meds in March 2010 because of all the side effects and the feeling that I was always chasing the side effects of one med with another med and the cycle was never ending! so far I have been taking both new meds for 5 days and have not really noticed any changes though I know it is still a bit early to tell.

I have been waiting since March for an appointment to see this doctor and had to have 2 appoints with his PA before I was able to see him and I was worried that everything was going to take a long time to arrange and schedule especially with it being the start of the holiday season and I am so happy that things will move so quickly and am almost a little bummed that I have to skip the week of the 8th! though a little get away is truly needed!. Thank you all for your well wishes! I will keep you posted.

Best,

Nikki

Great news
 

Hi Twinmon :)

Thats great news. You have everything set which is fantastic. It looks like its all systems go. By this time next month you will be truly on your way. Yes you do need a break and I hope you both have a fantastic time........

Jackie :)