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September 13, 2009 - 10:46am
Need some questions answered
Unfortunately I was one of the few who had a spinal puncture with the trial. Had to have two different blood patches done...so the whole time I had the trial stimulator I had an aweful headache. I did notice a great amount of pain relief as I was able to skip a couple of pain meds during the trial. I am scheduled to have my SCS implant done this Thrusday...and believe me I am counting down the days. I can't stand this anymore. Have had strange sensations after trial that are unexplained...doc is out of town so no one can answer. I have had a change in pain...or should I say added pain...my butt is totally numb and when my legs begin to itch...I can't feel myself scratching so I scratch harder and end up making the area raw and bleeding.
Anyhow...here are my questions...I will be having 2 leads placed in back and two in stomach for pelvic pain. I was told the front two would be just under the skin...and back two along the spinal cord. Is there more pain with the implant than with the trial? I am very skinny and doc said he won't know until in surgery where he will place the battery...doesn't matter to me as long as it helps with pain. Is there a better place for skinny people. BMI is 19.4 so I border on underweight. Not that I want to be this small but can't eat because of pain meds and pain.
I have read on here where people have two incesions I was under impression I would only have one for the battery...did I misunderstand? Will I have two? How long are staples in? How long will it be before I can return to a sitting job that doesn't require me to bend, twist, or lift? I was hoping it would be a couple of days...but understand everyone is different...just want an idea of the amount of pain. Does it really take 3 weeks before you can lift and twist? I am not sure if they are going to use the Eon or Eon Mini. Since I am so small I hope it is the mini.
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I am so sorry about your increased pain. I am no expert, and you can learn a lot by reading other threads, but I can tell you a couple of things:
You did not say explicitly that you are having percutaneous leads implanted in your spine, but if you are, your doctor will make an incision to anchor the percutaneous leads. Then he will make a separate incision to create the pocket in which to place your IPG.
You will not be able to return to a sitting job within a couple of days. If you are up to it now, read some of the other threads to get an idea of other people's experiences.
Brothers
Herniated L4-L5 disc.
Physical Therapy and epidural steroid shots before and after surgery failed to help.
Hemilaminotomy and Microdiskectomy
Second back surgery for CSF leak and repeat herniation of same disc.
All I was told was the leads would be stitched in. My doctor said the twisting is the trouble not necessilary the lifting. Unfortunatly I am a single mother that works two jobs. My first job is really helpful and will do whatever it takes to have me at work. I am a school teacher (high school), my second job isn't that understanding. They are giving me one heck of a time for taking off 10 days. My doctor told me he would make the decision in surgery as to what unit to use...but he uses ANS...and it would be either the Eon or Eon Mini...the rep will help him decide. Placement of the battery will also be left to the surgery day although he really likes to use the right buttock. Since I do have pelvic pain and wil have leads under the skin in the front I really don't see him placing it in the front but who knows. Only way I know about th stitching in of the leads is that he told me they would be placed and anchored so there would be no chance of them moving. He believes one lead was too close to the spinal cord and the impulse was what lead to the puncture of the spinal cord. I know that sounds funny and like he is dodging any mistake he might of made but he thinks that is why the first blood patch didn't work. Told me if...and the risk is slim to none that it would happen... but if it did he wouldn't turn on the unit until he was sure the patch was sealed. So basically if he punctures the cord then he will patch it allow it to heal before I am able to get any relief from the unit.
I have lived with the pain for 3 years now and it has got worse over the years. My gyn was the first to say that I needed to talk to someone about the possibility of the SCS. A year ago he sent me to a pain management doctor who was a real quack and I had all the pre tests done...and he said I needed to change diet and psych meds and never even discussed the SCS. This year he noticed I was a lot more tender and sent me to a different pain management doctor who immediately said...you need to get off all the pain med and lets do the trial and see what happens. I tell you the relief was immediate...I didn't have some jolts when I tried to roll onto my side and actually had to have someone turn off the unit for me and help me roll back to my back. Doctor said that would be taken care of with fine tuning.
I know the Internet is a great source of information...and read on several sites that ANS had law suits against them for lead failure and such....I don't know if these people were good candidates or not. I know that I was taking pain medicine every 4 hours 2 at a time Vicodine 10 and with the trial unit I was able to go 8 hours with pain meds but finally had to take them because of the shaking and headache I was getting because I was withdrawing from pain med. As a school teacher you can't function like that. My trouble all started when I had a colon resection done. GYN believes I have adheasions causing the problem. I point blank asked him if it were his wife what would he do. At this point he could of said jump off a bridge and I would have done it. He amazed me when he said I wouldn't let her have surgery as cutting adheasion just causes more adheasions.
I am concerned that I will form adheasions around the unit and I don't know if that is good or bad..might help hold everything in place or may cause more problems. Sorry this is so long. I guess I am just getting nervous and don't know all the right questions to ask of my doctor. I should of asked what type of leads he would be using. He also told me as long as I did't bend, twist or lift I was good to go. That is where I assumed I would be able to return the next day or following Monday to my teaching job. Surgery will be on Thurday...and he has me scheduled late in the day...maybe so he can admit me over night to assure I have no spinal puncture. He knows I don't wake well after surgery.
I will say I was awake for most of the trial surgery. I remember him starting and I was still counting back from 100. I remember being awake for him to ask me where I felt things. Then I was out again and awakened to him asking me more questions as to where I felt the stimulation. Then I woke up in recovery. And ANS was there setting the limits on the trial unit.
Thanks for all your help. Just a little scared and don't want to sound stupid by calling doctor 3 days before surgery and asking questions I should of asked when I saw him last but I didn't know what all I wanted to know then.
Staples are usually in for 10-14 days, of course that depends on whether your surgeon is a conservative type or a more nontraditional type.
With percutaneous leads, 3 weeks is too soon to start lifting and twisting. Most doctors recommend a minimum of 6-8 weeks before you start do any bending, lifting and twisting. It's a bit inconvenient to live with the restrictions, but definitely not as inconvenient as a revision surgery.
RESPONSIBILITY, n. A detachable burden easily shifted to the shoulders of God, Fate, Fortune, Luck or one’s neighbor. In the days of astrology it was customary to unload it upon a star.
When I made the appointment to have the permanent unit placed he told me I needed to see him 4 days later...which will be Monday...and then once a week for about 6 weeks to fine tune programs but he didn't say anything about stitches or staples. Most web sites I have looked at don't say anything about an incesion other than for the unit...every thing else was through a small hole in the middle of back...but that isn't exactly what he is doing to me. This site was the first that I looked at that mentioned a second incesion.
I am ready for relief...yes I have more pain...really pressure like arthritis in the low back, butt and hips but that is from swelling and brusing of the 10 needle holes into my pack and dura space. Please keep your fingers crossed for me that a spinal puncture doesn't happen again. I will post my story as soon as I get home and settled in and feel like being online. I hope that something I have gone through will help someone else.
When I made the appointment to have the permanent unit placed he told me I needed to see him 4 days later...which will be Monday...and then once a week for about 6 weeks to fine tune programs but he didn't say anything about stitches or staples. Most web sites I have looked at don't say anything about an incesion other than for the unit...every thing else was through a small hole in the middle of back...but that isn't exactly what he is doing to me. This site was the first that I looked at that mentioned a second incesion.
I am ready for relief...yes I have more pain...really pressure like arthritis in the low back, butt and hips but that is from swelling and brusing of the 10 needle holes into my pack and dura space. Please keep your fingers crossed for me that a spinal puncture doesn't happen again. I will post my story as soon as I get home and settled in and feel like being online. I hope that something I have gone through will help someone else.
If you read my post to Stinger66, you'll see that I had one heck of a hard time getting the trial leads inserted so, for me, the permanent implantation was much easier. I had the paddle leads, which means I had two incisions (just as Brothers said). One is about 3 1/2 inches long right down my spine and the other is a little pocket to hold my IPG that is in my upper left butt/hip. After the surgery (I had to spend the night at the hospital), I has some stinging and burning along those incisons that felt just like a cut. (Imagine why) I had it done on Thursday and was back at my office job on Monday. On the next Thursday, my husband and I drove to Clarksdale, MS for a blues festival (we live in WI) My NS wasn't thrilled with my plans and I did take alot of naps in the back seat. One of the reasons its easier is that they knock you out, waking you up for a brief time to see if you're getting stimulation n the right spots. Susan
STOCKBROKER
If the doc is connecting leads in the abdomen and the spine, chances are he will have to go with the EON versus the EON mini due to the power requirements and the amount of time between recharging. With a low BMI the docs tend to like placing the IPG in the upper buttock because that's one of the few places on thin women that has enough tissue to comfortably carry the IPG.
It is a very common risk for SCS trial lead placement and permanent placement of the percutaneous leads, to cause a dural tear and CSF leak. The doc is basically trying to thread an epidural style needle into the space between the boney structure of your spine and the thecal sac surrounding your spinal cord. Dural tears are easy to repair, especially if they are anticipated and caught right away. Since the doc did your trial placement, he will be familiar with the amount of "space" in your spinal canal and things should go smoother.
Incisions are made for placement of each component of the SCS system and a tunnel is created under your skin for the wires connecting the leads to the IPG.
Everyone heals differently and has a different tolerance for discomfort and pain. I was able to go for long walks, ride in a car, ride the subway, shopping etc. by day four. I went back to work at 3 weeks post implant. I used only Tylenol, Celebrex and Ice for pain control. Other members have had different experiences.
Remember that you can still ask your doc any questions that you have. Your doc will come to see you prior to going into surgery and by all means, ask him the questions that are weighing on your mind.
"C"
“If it is not right do not do it; if it is not true do not say it.”
Marcus Aurelius
(Hint - if you edit your title to include "SCS", I think you will get more replies.)
Now, I'm not sure, but I've been told that one IPG can only handle 2 leads. So if you are getting 4 leads (2 in the spine, 2 for your pelvis), you would have 2 IPG's. Did he talk about this? My rep told me last month this specifically, because I asked about people who get multiple SCS's and how many IPG's. She is a rep for ANS (I have the ANS Eon Mini) and she stated - 2 leads per IPG, only.
My IPG is in my upper right buttock and it is perfect. I am right-handed and can adjust the remote control and hold the antenna/paddle over my IPG easily. I am also "butt-challenged" as I like to say, lol, but definitely not too thin. Not fluffy, not thin, I like to say "medium". lol
My percutaneous leads (2) are anchored in my low back and you can actually feel the scar tissue there. The leads are normally placed around T-10 -11, but mine are down at L-1 to L-2 as that is where I felt buzzing in my pain area. (Do not leave the table until you feel buzzing in your pain area!)
Please please do not bend, lift or twist for 6 to 8 weeks. PLEASE. Trust us!!! Yes, the leads are anchored down, but they can still move around until they scar down. Please please please!! It is hard, once you start feeling back to normal, but this is so important. You really do not want to have a revision surgery.
Can you get a gripper at wally world (9.99) and keep it at work and one at home? So if you drop anything you can pick it up? Have you seen what I am talking about? I have them all over my house, and have a stronger one from Walgreens (19.99) that I use in the laundry, as it can hold heavier things. Here is a link to one, but the ones at wally world are 9.99.
http://arcoa.com/products-ezg.html
I would definitely call up and ask the nurse if the one IPG is going to handle all 4 leads......as I don't think it is equipped to do so. That would definitely be something I would want to know ahead of time.
Good luck!
Cheri
I was told that Eon and Eon mini both carry more leads...don't quote me but I think 4. I understand Mini doesn't hold as much battery strength but the size alone in a small person is what I am concerned about. Yes the front are just under the skin and the back are in the dura space. I watched the SCS video placement on this site and they say the paddles are placed with needles and nothing is said about incesions.
A friend of mine who use to work in surgery with another doctor said the Mini is much better and that there really isn't that much of a difference between Eon and Eon Mini. He told me to request the mini because of my small size and lack of fat. LOL Maybe he was just being nice.
Lynnlock, you have stated that a PM doctor is going to implant the SCS. A PM doctor always implants percutaneous leads. Only a neurosurgeon is permitted to perform the laminectomy required to install paddle leads. Therefore, you are scheduled to have percutaneous leads installed permanently. You can ask your PM doctor or nurse whether he is going to use the Cinch Anchor, and whether he is going suture the anchor to the paraspinous fascia or the interspinal ligament. If the nurse says the doctor is just going to suture the anchor to muscle, find another doctor.
Brothers
Herniated L4-L5 disc.
Physical Therapy and epidural steroid shots before and after surgery failed to help.
Hemilaminotomy and Microdiskectomy
Second back surgery for CSF leak and repeat herniation of same disc.
I think what your ANS rep was saying was a bit misleading. IPG's (including ANS) can actually handle more than 2 leads. There are specific connectors that are used to allow this. It's generally not done, due to the high drain on the battery and short recharge cycle. Also due to limited memory capacity for running multiple programs.
Lynn mentioned the the front leads are only going to be subcutaneous, so the impedance drop with those won't be as high as the ones in the spine. This may be why the "exception to the norm" is being employed here. Of course I am simply guessing that, I have no idea of what her doc's plans are.
Now I'm too tired to think right any longer tonight.
"C"
“If it is not right do not do it; if it is not true do not say it.”
Marcus Aurelius
Cheri, I think what's confusing you is that the IPG can only handle 16 electrodes. ANS makes several leads with 4 (quattrode) or 8 (octrode) electrodes per lead, so with the right extensions, you can hook multiple lead arrangements to the IPG, so long as you don't surpass a total of 16 electrodes.
For example, doing spinal and abdominal described above could be done using 4 percutaneous quattrode leads, which is a total of 16 electrodes and within the limits of the IPG.
RESPONSIBILITY, n. A detachable burden easily shifted to the shoulders of God, Fate, Fortune, Luck or one’s neighbor. In the days of astrology it was customary to unload it upon a star.