It's been a stormy rainy afternoon. Not good for people with inflammation. On the pain scale it's a 9 day. As far as for news it's been a good day.
I saw my Pain Management doctor today. After checking my incisions he pulled up a chair and was ready for my list of questions. I love it when your doctor doesn't make you feel like he only has a few minutes to spend with you. All my questions answered, and all good news.
I can now start to, as I can tolerate, exercising. Walking or riding recumbent bike. Also ok to use my hand weights for upper body in standing or sitting position. Ok to bathe and swim if I choose to. The best one of all is I can drive my self starting next week as long as stimulator is off. I've read in my manuel it was advised not to have on as a driver, only as passanger. The reason is due to possibility of distraction. You can have a jolt of stimulation with certain movements. Especially right now as I'm still healing. When it is on sometime and I look down toward my feet I loose all stimulation. If I lie down with certain programs it multiply's in sensation. To the strength I have to turn down or off. When I cough or sneeze it jolts me. This will get better as more tissue settles around the leads but the driving rule will always stand. It's just safer to not chance, he said most of his patients ignore this rule, but to please adhere at least until 6 weeks is up. I'm a compliant patient, I follow the rules. I have to much invested in this to not listen to my doctors rules. He also put my mind at ease about the raised area I was feeling around the scar on spine. He said they had a little knot there for slack so that if I accidentally bend or fall there is a little play in the lead. If it wasn't there it would be pretty uncomfortable and be bad news if it moved to much. Below is what the leads look like. The Paddle lead is in the middle and there is a percutaneous lead on each side.
After Mr. R ( St. Jude rep) came in to work with me. He's great. He always gets right back with me when I ask question or need to schedule time with him. He also very patient. It's quite time consuming to work in some more programs. It takes a lot of fine tuning. We'll surely need to meet again soon. I left with 3 new ones to work with and the 3 I previously had. I now can use the feature that allows me to adjust the sensation strength on individual sides. I already know after playing around with them since getting home that its better, but we're still not there. To low. It's got to get a little higher. A couple of times it jumped from to low to way above, close to my bra strap. Its crazy how it works. He said there a so many combinations and we just have to find that "sweet spot" and that one will probably be my favorite. I gave up first. After 45 minutes I was so uncomfortable standing in one position. He had another appointment himself with another stimulator patient at different office so we agreed to stop and meet again whenever I'm ready. I think I'll will give it a few more weeks so things will not be moving around so much.
The first IPG (implantable pulse generator)picture is the one I choose to have implanted. see May 9th.
The second set shown front and side is the difference in what i moved up to. As far as size you really can't tell from front but its just a little bigger. The real difference is in the thickness of larger one. Which is why I'm sure my behind is still really sore with sitting and when I try to sleep on my back. He promises that will get better soon.
After we left doctor office my chauffeur had a couple of stops to make but kept it quick as I was hurting pretty bad. :-( When we made it home I had to lie down with some ice. It made me think right away that I didn't ask about using my heating pad again. My heating pad has been my BFF for sometime now. Since surgery I've only been able to use ice. I'll call tomorrow and see. It would surely help tonight but I'm not willing to risk and problems.
After I rested awhile I decided it was time to try charging the IPG for the first time. R explained it like this to me. You can probably get 6 weeks since you have the middle IPG but it you let it go that long without charging it will take much longer to recharge. He said he would example as how he waits until his "EMPTY" light comes on instead of getting gas when low so he has to stand at the pump longer and pay more in the end. It's better for the IPG if it doesn't completely drain. I checked before I started charging and I'd barely used one third of the battery bar.
So here I am charging. The grey mobile charging antenna goes over my IPG and I turn of the mobile charger after I hear signal and yellow light comes on. It blinks green while charging and turns solid green when done. I had no idea the first time how long it would take. It was 45 minutes. Not to bad. It was just hard on me tonight because it painful sitting durning a flare up.
I made it though. I think I will just make it a habit to do weekly and that will probably keep in under 30 minutes. If you let it go until it warns you it could take up to 4 hours to charge. Can't let that happen! I do have a belt to put on if I want to be mobile.
After charging your IPG you need to recharge your mobile charger. I didn't use it long enough to need charging. When I plugged it in the green light was steady so I guess it holds a charge for some time. They recommend doing after every IPG charge so you don't get stuck getting a partial charge because your mobile charger is dead. I know, boring.....but this is what I'll be doing on a regular basis form here on out.
I also talked to the doctor about medications. I really want to get off of some of the medications I'm taking. He said it sounds good to him, but give it a little more time. He prepared me, but I already knew, that coming off the pain med will not be fun. If I take it slowly over a long period of time and be patient, not so bad. If I go cold turkey, it won't kill me, but I will think it is. Some medications can kill you just to quit taking all together or be very dangerous for sure. To him I take a low dose so not a big deal but from what I've read on the internet it can be rough coming off.
He said it is not unusual for it to get worse before it gets better so that's why he wants me to wait and give the stimulator a little more time. My husband said he was so glad he told me that so when I experience the side effects I'm not freaking out thinking something else is happening. I had really bad side effects getting off Ambiem that lasted a week. Of course I quit cold turkey. I decided I'd rather suffer a week than drag it out over 3 months like they recommended.
It may be that I only get to the point that I just lower dose rather than get off completely. Getting off some medications is one of the reasons I came to decision I did. Most important was to reduce pain but reducing or eliminating medications was also a goal. We'll see. I'll give it some more time. I was just asking ahead because when I asked when I have to come back he said no appointment was needed. Only if I need him. If I'm not able to completely get off of the pain meds I'll have to go in at some point for a check. It felt so good to leave there and not have to stop and schedule a "next appointment"
I guess I'll close here. I'm dreading trying to get comfortable and sleep. My back feels like its on fire with a big stone sticking in it. Last night was the worst I've had in the last week. I kept waking up moving around trying to find a comfortable position. If I had watched the weather I'd have known what was up if I was aware rain was coming. I've been able to let D know for years now when it was going to rain the next day. I think we have the same in store for tomorrow. I'll be playing around with the new programs to see if I can get some relief.
So long readers. I'm off to get the ice pack and settle in to try and sleep a little. If not, no fighting it I have a new book on the e reader to start.
Sweet dreams to all who sleep.
