Had spinal cord stimulator trial yesterday...have questions!

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frank_n_beans

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Hello all:

I had a spinal cord stim. trial yesterday and I have a few questions for those of you who have gone through this as well.

A little background..I am a 28 year old female with DDD, spinal stenosis, ruptures at l3-4 through l4-s1 and a bulge at l2-3. I've had 2 bilateral discectomies/laminectomies and have been managing the pain with methadone and morphine for years. I was 16 when the pain started for no reason. I was taking nortritptyline for nerve pain and that was good in addition to the narcotics but then I developed QT prolongation which can cause heart attack so off that I came asap! Since then, nerve pain has been unbearable. Next option was to try the SCS and, as I mentioned, my trial was yesterday. My husband and I are looking to conceive in the next 1+ years so less medication is one reason I am interested in trying this...

My first question is- did you have bad pain from the epidural/lead site? If so, for how long following the trial? I am in a lot of pain..cannot lift my butt or roll without really feeling it. Also have trouble getting out of bed and lowering myself onto toilet.

My second question is- did you know whether it helped with the pain right away? I'm not sure just how much it is helping..I still feel the pain in my right leg (front of my leg) from the l3-l4 nerve root. I'm so afraid of going forth with the main surgery and not having it work but also want to give this whole trial thing a fair shake. :confused:

My third question is..how high do you normally go for your stimulation? Seems anything above 5 is pretty strong for me and yet I am still feeling pain. Do you think I should try higher stim.?

Please let me know what your experience was, if you get a chance!

Thanks,
Frank and Beans
 
Hi there-
I am sorry that I really cannot answer your questions because I haven't had the spinal stimulator placed yet. My PM doctor is just starting to talk about this. But from what I've researched, you really should begin to feel relief right away. I've also been told it's only about a 50% chance it will help. Do you mind me asking what device you had implanted?
 
My surgeon uses the Medtronic...FYI..I am in Boston.

I'm just so nervous about going forth with the permanent placement and having it not be worth the acute recovery time, risk of infection and risk of lead detachment, etc. It is helping but am not sure I could even say what percentage of the pain it is taking away right now...just not sure how much is enough to go forward.

ugh..hate these big decisions!!
 
Although I do not have a stim, I have done alot of research on these things and talked to several individuals with the implant. The surgery implanting these things is not easy. In fact it is extremely painful and you have to very careful to let the scar tissue form to secure the leaRAB and box into place. I have been told 12 week recovery.

As far as the trail, if you are not finding relief, I recommend you call the person who implanted the trial. They may need to move the leaRAB to a different location or do an adjustment. If it is going to work you should be able to see a difference.

Good luck and please keep us posted.
 
Hi Frank and Beans. I had the stimulator implanted summer of '07. I also have Medtronics. Did the rep from the company who assisted the doctor in surgery give you his card? I would call the doctor, and also get in touch with the rep. They may not have the stimulation set right. Did they wake you up in the middle of the surgery to see if the stimulation was going to the right areas? I know with me, it had to be tweeked when it was implanted permanently. Unfortunately, it barely takes the edge off the pain for me. I wish it worked better. I need to have a revision done due to non-fusion, and I also have scar tissue issues, and permanent nerve damage. They are going to leave the stimulator in place when I have the revision. Hopefully it will help me then, if not, I will have it taken out. Are you scheduled for your next surgery? Give yourself time to heal. Remeraber, it is an invasive procedure, and painful. Kathy
 
Hi Frank and Beans,
I am a 47 yr old female with DDD. I had the temporary SCS put in Aug '07. I could tell some difference right away but then 2 days later my legs went nurab. I went back in ASAP and they decided since I was feeling some relief they would go ahead and put in the permanent one but with 3 leaRAB in a laminated plastic covering (paddle) so it couldn't move. They had to do a laminectomy to put in the paddle which took two different Drs. One my Pain Mgmt. Doc and then my Neurosurgeon to do the laminectomy (I already knew him well, he had done my neck fusion and my carpal tunnel surgery). This consisted of another larger incision over my spine so they could insert the paddle. They had to use the paddle because it laminated 3 leaRAB to stay in one place and helped to prevent slippage again. This is why my legs went nurab the first time.

So I have an Eon IPG that is rechargeable with the ANS recharging system. I still feel pain, but when it gets real bad, I can lay on my back which makes my SCS work better. So I lay down or sit in a recliner a lot. It has helped my aching pain in my legs and buttocks. I still get some shooting pain but not as much. It has helped approx. 50% of my pain. I have so many other things wrong with me I was glad I had this done... now. I wasn't at first. It really took about 5 times of going back to the rep to set new programs for me before they got one I really liked. Once I found the right one I haven't changed it since. The recovering was terrible. Tremendous pain when moving, period, for about 1 week. Then it started to ease up each day. I didn't really know how much it was helping me until the first time the battery really needed to be charged. I forgot to charge it. Now everytime I start to feel more pain, I know what is wrong. I appreciate it so much now. I don't ever want to go without it.

I went back to the Dr. and told him I wasn't feeling any real relief right in the spot that really hurts in my spine. He said he could REDO the surgery and put in 4 leaRAB but it would also require another kind of battery pack (which would require 2 incisions again) and I just couldn't make myself do it. I have fibromyalgia and lupus and any kind of trauma puts me in a severe flare. I am happy with what I have. I know if it gets real bad again I can go in and get the 4 leaRAB and another battery pack, but I will wait until that time. It takes you being patient with trying new programs at different intensity to find the one you like best. I think my rep put in about 4 programs each time and I just changed the intensity on each one until I found the one I liked best. The reps and Dr. were great! FYI... I am in Oklahoma!

If I can help anymore just let me know.

Cindy
 
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