Saturday, April 30, 2011

Spinal Cord Stimulator: Final Outcome

Hi, lovely friends! It's a tad late, but I have just been getting up to the "norm" and feeling able chronicle this entire experience.

Just to recap, for those of you who mentioned you just found me and this info, here are links to the other neurostimulator posts, in order, with this being the fifth and possibly last:

  1. I Need Your Opinion: Neurostimulator Implantation 
  2. Q and A: Neurostimulators 
  3. On with the Spinal Cord Stimulator and Off to the New POTS Doctor 
  4. Spinal Cord Stimulator: Psych Eval and Approval

About 12 days ago, I had the trial stimulator procedure done to see if it would help the ferocious flank pain I live with daily. For the actual procedure, I was taken into a room with a bunch of other patients who were getting similar surgeries. I went to the bathroom to change into my gown. There were no cameras allowed in this waiting area (first hospital I have had that rule at!), and no family allowed either. Sat in a chair, next to a bunch of other folks. I got my IV hooked up and waited; there was one stimulator surgery before mine.The drug rep and Dr. Pain Relief came in briefly to talk to me, and then I was walked into the surgery room.

While in the surgery room, I was laid stomach down, gown open to see my back, and there were quite a few people in the room. A very neat technique they used, there was an x-ray tech that had a cylindrical x-ray machine up a ways, but over my back then entire time the surgery was going on, and he was able to take live feed to see where the leads were in my spinal column, and he could also take still shots. I got to watch most of this too, which was really interesting. After scrubbing me all up, they finally pumped some sedation into my IV, and thank goodness! It was a mixture of Fentanyl and something else. A few minutes later, I felt a bit more calmed down, but I was still coherent.

The doc and rep worked together, the doc working and the rep talking, and both of them trying to place the leads where they would best work for my pain. The rest is shown in the video below (nothing graphic in video). After the procedure, I sat in recovery for a bit, the rep worked with me for an hour and a half to program the device and try to find the best way to stimulate me, the best area, intensity, etc. I have a feeling this is what started the extreme aggravation of the nerves. The rep told me he normally took about 5 minutes to program someone's device. With as much time as he spent turning mine ON, OFF, HIGHER, LOWER, etc., it felt like I had gone to the gym and strained all the muscles in my flank area. But, because we finally got the area correctly, meaning we got the electrodes to vibrate in the exact area of my pain, we were done and I was on my way home. From here, you may watch the video to find out about how it all went.


As you watched, the spinal cord stimulator did not work for me. I was in extreme pain for the first few days, and on the verge of extreme pain much of the 8-day trial; I couldn't even have the spinal cord stimulator turned on very high, or even turned on at all. I went back in to the doctor's office half-way through the trial to get extra pain killers and some Lyrica to just try to calm the nerves down. It basically felt like I had taken the flank pain area that causes me to cry at night sometimes, and someone had twisted it like they were wringing out a dishtowel. The stimulator just added extra pain on top of the already awful pain I have.

I don't know what other information to give you, other than to tell you that I am not against these stimulators. I can see how they would work in someone with another type of pain, or pain in a different location, and I was the only patient in the entire clinic that has had this sort of a reaction - they have been inserting these for 17 years. For Ehlers-Danlos patients, they won't help the entire problem, so they would only really be helpful for one specific location, if there was one problematic area that couldn't be treated by other means. The bad side of it, some patients never get used to the vibrations that the stimulator uses to "trick" your brain - to have your brain focus on those electric pulses instead of on the painful area. And, of course, some patients it doesn't work well enough to go through the actual implantation.

To describe the feeling of stimulation is rather difficult, but I will do my best. If you will, imagine one of those handheld massagers they sell at places like Bed, Bath and Beyond. The sensation you feel when you place it on your skin is that of a small vibration. Now, imagine that massager being placed under the skin, in your area of pain and it being turned on, in that same spot, pretty much all the time. If it did relieve the pain, it certainly would be something that would take some getting used to! For most people I have talked to, and the way I felt beforehand, I would much rather take a vibration feeling in my flank than a horrible feeling of pain. Unfortunately, for me, it was flank pain that was worse than normal, so terribly bad, and a vibration on top of it. Super painful and super annoying. Though, that was just me. Who knows how it would work for anyone else, especially because pain is so individualized. Either way, it feels like a massager turned on in the same location, under your skin, all the time...it was a very strange sensation.

The stim from behind, wires attached

Close-up of the bandage on the back.

The Generator/Battery Pack/Programmer

The removal of the leads, wasn't bad at all.

You can see the leads were stuck inside and went all the
way up the spinal column, but to keep them from slipping out, the were
stitched down, then taped.


The best part of the whole experience was the package that arrived from Girlfriend: It was my get-well box filled with all sort of vegan goodies from Pattycake Vegan Bakery in Columbus, Ohio. There were chocolate and vanilla cupcakes, a blueberry muffin, and an iced sugar cookie shaped like a bunny. For those of you who aren't vegan, you would have no clue these are vegan goodies - couldn't tell the difference! I ate one a day, and boy, did they bring a giant smile to my face! So did Girlfriend! :) Thanks!!!

It's been four days since the leads have been removed, and I am more than thankful. I really can't be happier that I had this trial. It was more pain than any of my surgeries caused, but it was well worth it. I got to test out a spinal cord stimulator before it actually was implanted in me, which would have been a major surgery. This was painful and pleasurable. Now I know it doesn't work for me...just have to keep hope that there is something out there that will help keep the flank pain under wraps, and then, of course, deal with all the other daily things that come along. I am pretty much back to normal now. Still taking the Lyrica and Valium for a few more days to calm down the nerves a bit, I can't bend over to the ground yet, or twist too far - my muscles/nerves hurt too bad. But, other than that, I am pretty much "me" again. And that is a good feeling. :)

Thanks for following all of this. I hope it was informative, and while it didn't work for me, if you are considering it, at least you have an insight of the process, an idea of what goes on, and my wishes that it works for you. 

xoxo
dani

4 comments:

Anonymous said...

Has it been suggested to try the intrathecal pump trial? I was offered the choice of either and opted for the above due to MRI restriction with the stimulator. While not 100% gone I am working on manageable with the hardcore oral narcotics. If it has been offered and your curious or curious otherwise I am happy to chat about it. Both Ellie and I on the eds group have it, mine is just older.

Kirafaye

Jane said...

Hi!
I'm sorry it didn't work for you, but happy that you got to try it.
I had for many years severe pain in my flank area, where i couldn't sit much, and only stand for 5 minutes at a time. No docs could figure out what caused the pain, until one doctor had a light bulb moment. Ho thought that my spinal cord was to narrow, so that my nerves was constantly pinched. He basically drilled the lower part of my spinal cord, to make better room for the nerves. It was an extremely painfull surgery, but it worked! I got much better. I still feel the pain, and my spinal cord is still to narrow, but alot better.
Anyways, just wanted to give you a hug from the other side of the world!

Hugs from Jane in Norway

Nakki said...

Ugh!
It really sucks that it didn't work for you. Before you talked about it, I could only imagine how frakin' itchy and insanely annoying the tape would have been.

I'm glad you got to enjoy some very yummy food, that stuff can make anything better.

I love how you think and your attitude. You will find something that works and it will be fantastic. If only finding it could be easy.

Sending much love and juju xx

Wacky Lisa said...

I'm so sorry this didn't work for you.
Thank you for sharing your story.
I was happy to find your post as my Mom got a bladder stimulator about 6 months ago and had good results but the leads severely migrated during healing and I'd been wondering if that could be EDS related. She doesn't have an EDS dx but I do.

In future, a product called Uni-Solve is great for removing tape and other medical adhesives. It won't completely prevent the skin damage but it limits the damage caused during removal. it's usually available at a medical supply place that carries wound care products.