I just got back from the doctors office. Everything is approved and I am a go for the trial.

We are waiting on the Boston Scientific rep to call and let us know her schedule. Most likely, it will be a week from Monday. They told me to make sure I took all my meds including my pain med for break through pain that morning. The trial will last a week. Get your nose plugs out since I can only do sponge baths lol He will put it in on Monday and remove it the following Monday so we get a good idea of how it will work for me.

Since I am POSITIVE it will work for me, the next step after that will be to meet with the surgeon. It will all depend on his schedule as to how fast I can have the permanent done. It could be a week later or as long as 4 weeks. I will keep my fingers crossed that it will be as soon as possible.

We discussed just how limited he wants me to be. He said obviously limit bending, lifting and twisting because the leads will be free floating but he does want me to try and be as active as possible. He said light housework like vacuuming and cooking is allowed. He wants me to get out and walk as much as I can while testing the programming. I will have to walk at the mall or something. I don't think walking in temps that have been around 110 with the heat index is a good idea because of the sweating (and stinking lol)

I also discussed how the stimulator is billed. It is considered Durable Medical Equipment by Medicare. That isn't good news for me. It will cost me 20% of the cost of the stimulator or $5,000 (my out of pocket). I just want to cry but it is what it is. I can't put a cost on the pain I live with so I will get it worked out and have it done.

The nurse who assists my doc with procedures was talking to me about the SCS. Her mom had one put in for back/leg pain the beginning of March. She said her mom was practically bed ridden from pain for the past 3 or 4 years. It took her about 6 weeks to recover from the affects of the surgery itself (which is normal) but she is now pain med free. The mom is now traveling, has lost 30 lbs and even exercising. She said it was truly amazing to watch the difference first hand.

There is hope!!

Something else........

Neurontin hasn't been working well for the nerve pain in my arm and leg. Since I have been on it for over 4 years (outside of one month on lyrica), he felt my body probably needed a change. I have been taking 3,000 mg a day (600 mg 3 times a day and 2 at night). We tried Cymbalta this month but it made me sick as a dog.

When I met with the psych doc for my SCS evaluation, we discussed Neurontin and he was quite shocked at how much I take a day. I told him what the Cymbalta did to me. He went into some long "doctor explanation" that went over my head. All I got out of it was that Cymbalta was a blend of two types of medicines. He recommended Prozac and Elavil (amitriptyline) to my pain doc because they work in the same manner as Cymbalta. I am to take Prozac in the mornings and Elavil at night. Supposedly, this works well for nerve pain.

Anyone else familiar with this or take these? If so, anything I should look out for as I start taking them or be aware of?

Thanks!

So happy to hear that your trial will be soon. Bummer, tho', on the out of pocket cost, but as you said, you can't put a price on pain relief. If you're like Rae, you may eventually get the money back in the money you save on meds.

I was able to stop my pain meds. about two days into the trial...it helped me that much. I knew then and there it was a "go" for me. Keep a diary through the week (ie, what you're now able to do compared to what you couldn't do before....could run vacuum for 15 minutes rather than the usual 5 minutes....could cook dinner and wash dishes where spouse has had to do it for me...pain has decreased by ___%...was able to walk 20 minutes with reduced pain rather than usual 5 mins....was able to sleep for so many hours rather than tossing/turning all night...you get the idea.) They love to see percentages in improvement or pain reduction. Then, give a copy to your doctor to put in your chart so that he/she can give it to Medicare to help convince them to give you the permanent should they want to think twice about approving it.

The diary also helps you look back and get encouragement when you're in that horrible place between having had the trial (and having pain relief) and waiting for the permanent. It's what's helping me hang in there until Aug. 19 when I get "the twins". I keep reminding myself how much better I felt, physically and mentally.

Have a good trial...here's praying you get marvelous pain relief!!

Hugg, you can go to Drugs.com and look up information on almost any medications. This is a site that I have found to be VERY helpful as a nurse, you can look up meds, dosages, and they even have a pill identifier portion.
Hope this helps
z

Hugg, it is so good to learn you have a date for the Trial, and here's hopin' it goes well, very well!


Mark56

This is GREAT news!!!
You MUST give us a detailed play by play of the trial!!

Hmmmm......I'd say this calls for another PARTY !!!
When your trial date rolls around, let us know and we'll hook up in the chat lounge for some moral support ....

Bumpin this thread of yours to the top!
I've been thinkin about you and wonderin how things are going?

Give us an update?

Caring
Rae

Hope all is still a go HUGG, and hoping the Trial is either imminent or happened with good result. Fiona is right on about using that journal Boston Sci provides. Use it. Makes for a good record demonstrating your progress.

Thanks to Rae for bumping you back up!!!!
Mark56

Hi Huggs

Its fantastic news to hear that you will be going ahead with the trial. Excellent news and I wish you the very best of luck with it too.
Ive had my implant now nearly 4 weeks, permanent one, and its working well, needs tweaking, but definitely an improvement......

You mentioned Elavil (amitriptyline).....I only know it as Amitriptyline (I live in Ireland so our meds are named differently ) I have been using it for the past two weeks, 25mg at night. I was prescribed it as I find sleeping at night very difficult with the ongoing pain in my back and legs. In the beginning I found it beneficial as it certainly helped with my sleep patterns and I was getting some more rest than usual. But as Im now implanted I certainly sleep much better as its sooooo relaxing... Im going to continue using it until I get my stim reprogammed etc and speak with my Consultant.....

I wish you the very best for your trial. Do tell us how you are getting on with it!!