Got a date

[MakinIT]

Ha...thought that would get your attention!!! My date is with the pain doc on May 27th to have the temp nerve implant. Nothing too exciting, except that I will be freaking out. I start school on June 21st so I don't think I'll have enough time between the trial and the permanant (recovery) so the permanent will prob have to wait till August. for those of you who have had the nuerostim surgeries, would you agree///? I know they like to let you have the temp in for a few days, and recovery from permanent is about 3-6 weeks...which means I'm running outta time. "sigh"

Anyway...I sure hope Idon't freak out like I did when he did the spinal block. How embarrasing!!!!


Have a good day all...and if you have any words for me, or advice, please let me know...'k?

Love ya all...tracey

[ICNJess]

Hmmm that's a really long time for wires to be in...I am not sure that's such a good time? In that amount of time, trust me, you are going to want the permanent. Showering, sleeping, sitting, everything is just a little more difficult with the wires. You have to be careful not to get caught on stuff, or they could get yanked and move. You can't get the wires wet (I've heard people showered with the wires in, but I was told NOT to) I think maybe infection could be more risky with this as well. Not to mention your backside is pretty well bandaged up, and you'd have to change bandages often. Plus you'll have the unit to watch also, like make sure it doesn't get damaged at all or banged up.

Trust me, after 3 weeks of having the test, I couldn't wait for the implant. I know you are pressed for time, but really, think about this very carefully. I don't mean to lecture, I just know from experience that 3 weeks is a long time for wires, let alone a month and a half or so.

After my implant, 2 days later I was able to go out of town. I was sore, but I took my pain meds everywhere with me. It just depends on how you heal. I just stayed away from strenous activity, and things of that kind.

I had my implant done on Oct 1, 2003, and it's really weird to have something in your butt cheek. I have a scar where it went in, and little scars from the trial, and I've lost some weight, so the box likes to poke itself out of me sometimes and it kind of burns. Do not lose a lot of weight after you trial, trust me.

I'm one of the biggest advocates for the stim around, but I think it has it's pros and cons. I know how nervous you are, I've been there, done that. Just make sure this is something you want to really do.

Hang in there, if you have any questions or concerns or anything, I'd love to talk. :)

Hugs and love,
Jess

[yvette]

i had my trial in December of 2000 for one week....went to the doc's office after the one week...they slid out the wires (practically microscopic even!) During the trial: Sponge baths and best friends to wash my hair in the sink...not so bad.

we then scheduled my implant surgery for 3 months later (march 2001)...Enough time to schedule: time off, disabilty payments & paperwork, prepay bills, planning schedules, instructions and conacts to leave with co-workers....

Your august date sounds reasonable enough....you'll want that time to *nest* (Alot of us 'stimmers nested) ....you know get yourself ready, get the house ready, shelved and stocked with food, movies, books and of course the big part of nesting.....cleaning every nook and cranny....cos you won't be able to do jack for about a month! no bending no lifting.nothing! ;)

You'll do fine....I was prolly ready to go back to work after 3 weeks off -- but it was really nice to have a full month off from work to heal properly.

Hope that helps you! :bunny:

[MakinIT]

Yeah..the temp implant was only going to be for a few days. Then, I think, they'll have to take everything out and then go back in August. Damn them for dinking around. Jess...is that the problem...? having the stuff removed completely, to reinsert it...like do they normally not do that...I haven't completely figgered it all out yet. I just figured out that they were doing the nuerostim rather than the other stim thingy.

[ICNJess]

Hmm well one person I heard had the wires left inside of her until they wanted to do the permanent, but just didn't have it hooked up. Can't remember who, though. :( If I think of her, or if she pops in on the subject, I'll let ya know lol. I think if it were me, I wouldn't want the wires just in there not hooked up to anything. But that's just me.

Take care :)

[yvette]

Maybe that's where my confusion lies....the 2 wires I had was cake....that's it 2 wires that were hairline thickness ....I didn't have the staged trial which is much more involved, in which yes that would be a real pain the a$$ to wait 3 months in between...

If you don't know what's going on at all...not for nothing....I would figure out with your doc before they start messing with your nerves and backside...

Good luck with everything! :toosh:

[MakinIT]

yvette: It's the nuerostim where they go through your sacral space and down (I guess rather than the interstim) It is supposed to control pain better. I don't remember all the details fromthe doc talking to me cause i was in a fog (Really didn't wanna do it) My husband was there and I was hoping he was paying better attention. Despite the good questions he asked, he doesn't remember much about the discussion either. (You know....brain overload)_

Thanks for your help!

[yvette]

for us to answer your question....what kind of trial is it? (not what kind of stimulator) If it's a "staged trial" then yes its a big hassle. And yes its going to be a big inconvenience....

If its the "simpler/regular trial" then it'll be fine to wait all that time because only 2 wires will be in your skin, and they will slide out after a week...nothing will be in your body after that -- not iuntil the actual surgery

You really should ask more questions, and bring a notebook. There's no way you can remember all that junk they tell you :) (Ihad two 3-Ring binders of notes by the time I was ready to go thru with it)

I have to admit, I read your posts and I see big red flags everywhere...the fact you say don't want to do it: BIG red flag waving. You also don't seem to know what 's going on at this point and that's another big banner waving away . Jess is right, this should be soemthing you KNOW you WANT to do...its invasive and a big choice to make...I wish I could tell you what to do....sorry :(

I really do wish you the best of luck in whatever you decide.:thumbsup:

[MakinIT]

HI yvette

I do want to do this surgery. I am so sick of all the meds and crap that I've gone throuh in the past year. Plus, I'm trying to go back to school so I can move on with my life with a new career path in teaching. (I'm tired of being tired). I've read about the surgeries, on the medtronices websites and other locations. My problem is post traumatic stress with past medical experiences in my back. Once they do it, I think I'll be fine. I'll just be a horried mess during it.

I am a little confused as to the step thing or simple procedure, as you put it. But, in discussing it with my husband (who went with me to the initial dr. appt) and the docs it is a simple procedure..so many variables in this thing,eh? I'm having the most updated nueromstim procedure available. So..we shall see.( As long as I can go to my happy cave:) )

I was scheduled to see both my GP and psych today and was sooo "drunk" from meds tht I couldn't stay awake while driving so...I cancelled my appointments and went to bed for the entire day. I gotta go to a new student orientation tonight so I sure need to wake up now!!!!!!!

Tracey

[aantol73]

I just want to say good luck and hope it all works out..... I will keep you in my prayers:pray:

[rachelm]

Tracey,

I think that the type of neurostim that your having may have a different trial than the interstim. I'm not sure if everyone realizes that you are NOT talking about the interstim trial. Are you getting the Synergy by medtronic? The trial protocol may be very different with that device.

I did have both trials before getting my final InterStim implant. The first one was the old trial that was inserted through percutaneous needle and after 3 1/2 weeks was pulled out in the dr. office. The second trial I did was the stage trial because I knew I was going to have the permanent implant. The dr. implanted the wires with the anchors that made it attach to the tissue. This required 2 tiny punture type incisions at the base of my spine. With this trial I had the wires come out of the back to attach to the temp. unit until my final stage 2 implant. 2 weeks later my dr. unhooked the temp. external box and implanted the internal device. I'm so glad that he let me keep the external box until the stage 2 surgery because I was so much better with the stimulator. I'm doing well now and off of my pain meds. most of the time with no retention, pressure, or frequency.

The synergy implant is much more invasive and I don't know what all the trial entails for it but it's not the same as the interstim. It is implanted in the epidural space of the spine whereas the InterStim is placed on the nerves that lead to the sacral area but not directly on the spine. Synergy implants require an experienced neurologist while the InterStim is most widely done by urologist or urogynocologists.

I'm sure your recovery will be more involved than the recovery from the InterStim implant because it is attached to the spine. I had my stage 1 implant on a Friday and was working by Tues. the next week. For stage 2 I had it put in on Thurs. and went back the following Tu. so the recovery isn't bad with the InterStim. I did have to change my dressings every hour for the first week when I went back to work. I had the final stage done on 4/22 and I was finally able to go dressing free 2 days ago. So as far as that goes you have to deal with the inconvienience of changing the dressing but at the end I only had to do it once a day. In fact I was able to go get my first 2 wedding dress fittings within a month of my surgery.

I understand what you mean about being on a tight schedual with little time for dealing with the recovery you'll need. I'm getting married in 5 weeks and just finished a grad class that I managed to complete. I'm also a teacher and this time of year is crazy!! Thankfully I'm feeling much better because I'm extremely busy getting ready for the wedding and wrapping up the school year.

Please let us know how your surgery goes. I'm anxious to hear about the synergy from a patients perspective.

I would definitely do the implant over again because it has given me my life back again. I still have some hip pain but it isn't anything like it used to be before the implant and it isn't constant. Most of the time I can connect the pain back to something I shouldn't have eaten. Good luck with your surgery!

Rachel

[MakinIT]

Ok...Went directly to the horse's mouth and asked the pain clinic on Thursday when I was the hospital ANYWAY for a pych visit. First, he called it a Sacral nerve stimular by Synergy. The trial will last for one week, then I go back and they take the WHOLE think out. If it was successful, I go back June 16th and have the permanant implant done. It will put a big scar on my butt, and they go through the Sacral space between your lowest lumber and top sacrum. I am asleep for this baby. Complete operative room and all, whereas the trial is done in his office. His assistant said I should be ok after to start school on June 21st as long as I take it easy. (full day M, W, Pm t, th, Am Fri for the first 2 weeks.) I think I'm gonna die. But It's only two weeks,Then just mornings everyother day. I talked to my advisor and profs and they are all very sympathetic and willing to work with me. (They have too, I guess, I'm considered disabled..BTW..I got a disable permit and it is marvelous. Esp since I got into a car accident yesterday and have tough time walking anywhere right now.)

So..that looks like what is happening to me. I'm starting to feel the effects of my pain med, percocet. Funny, been on morphine Long lasting for a year, valium for a year, atarax, zenegran, but the percocet makes me a complete la, la head. And, BTW, I was only taking one per week at the most. During my absolute worst IC flares. But my car accident yesterday caused me to go from 40 to 0 in less than second. Everything HURTs!!!!!!!!!! My pelvic muscles keep spasming, HARD, so I left my doc a message to let him know I'm taking a quite bit o' percocet. HE didn't call me to yell, so he must be ok wit it. I'll see him tuesday.Egads...he prob will raise eyebrows and not want to refill for me (I still have half the Rx left though)

Love ya all,,,, thanks for the questions to ask.

anyway.....Take care you

[rachelm]

Tracey,

Oh my goodness a wreck? You don't need anything else on your plate. :( Is your pain Dr. using the synergy battery and hooking it up like the interstim? From what I read the Synergy is implanted in the epidural space on the spine itself. The InterStim is a sacral nerve stimulator which is the space you described that your dr. is implanting the synergy IPG. It sounds exactly like my Interstim implant. The Synergy is usually attached to the spine wheras the InterStim touches the sacral nerves not the spine directly. Maybe I'm misunderstanding but everything you describe sounds just like my implant. How many leads will hook up to the synergy? Maybe that's the difference. I have one main lead with 4 small wires branching off that all touch the sacral area and each one can be programmed to transmit the signal however only one wire can be stimulating at a time. I think that's the biggest difference between the Synergy and the Interstim.

A word of caution.. I'm sure your dr. will put you on an antibiodic but when you go off of it watch your incision carefully for any redness. I was off Bactrim for 5 days after a round of 2 weeks and I started getting a staff infection. It's not bad but I went back on antibiodics for another month to stop this one and prevent others. My dr. said that for some reason no amount of cleansing the device seems to totally prevent infection. The metal seems to cause this to happen frequently. I probably would have been fine if he had kept me on the antibiodic even longer especially since my incision drained for so long. It's starting to itch now which is a good sign that it's healing. It looks worse than it feels although it's sore from the beginning infection. I just think it's better to be cautious than risk infection. I'll stay on antibiodics for 6 months if it keeps me from getting an infection and having to get the thing removed.

Good luck with your surgery! Keep us posted! Oh one more thing, buy a bunch of surgipads by Johnson & Johnson for dressings after your surgery. I used the gentle paper tape too which was the best thing for the irritated skin being taped over and over. I tried several different guaze and pads but that one was the best for my heavily draining incision. I later was able to go to a thinner guaze pad and after a month was finally able to stop wearing anything over it.

Who knows maybe your incision won't drain as much as mine. I have heard of some people who don't drain at all.

Keep in touch!

Rachel

[MakinIT]

Yum..drainage...sounds tasty. I don't know how to answer all your questions...as I look things up on the internet, its looking somewhat like the interstim but with tweaking for pain relief. And he told me that would be the primary relief I'd have from the surgery is pain relief. He has a very strong East Indian accent and speaks very quickly, and lately, I hear very slowly. He told me it wasn't the interstim, but as I read about sacral nerve stimulation it sounds like it. I don't know. He is putting in the trial Thursday, taking it all out next week. Then reputting it in permanantly (if it worked) on June 16th, which I will be fortunately k.O.'d on. I'll take your advice on the bandages, I should have plenty of padding in the ol' butt region for the implant. I am going to try to read some more about it today. It sounds like the technology is constantly changing and my pain doc/nuerologist is staying on top.:thumbsup:

yes..I had an accident. sucked big time. going to cost my car repair bill $500 although the damage was $1200...lord knows, I'll likely get my insurance premium going up. Crap. Fortunately, the other driver was driving a monster sized truck. I did no damage to his car whatsoever. My daughter and I both went to the chiro yesterday. I knew it would help me, I've been seeinghim for 2 years. But Caitlin was very skeptical. However, after 45 minutes of him snapping and popping her, she's nice and soft and feeling great. She wouldn't let him touch her neck. She thinks he'll break it. But she is now wishing he had because she has a knot on her neck and her vertabrae feel a little askew. So, next week he'll fix that. It's hard, even for me with this guy I trust as much as my husband, to relax at the point of neck adjustments. But it feels so darn good when done. Plus, I know if I;m a real good girl, he'll do some myfascial release in my pelvic area ( uh, Front low belly only) that helps tremendously with tension related to IC.

so, I'm counting down the days to the big day...whee. 5 days...man...I hope they relax me better tha they have in the past.

Tracey

[littlebear]

Hi Tracey, Best of luck with your procedure. Let us know how you're doing! Best wishes, little bear

[littlebear]

Hi Rachel, I'm so glad to hear that you have been doing well! Congratulations re finishing your grad work. I hope that you have a marvelous wedding and a fabulous honeymoon! Best wishes, little bear

[MakinIT]

How do you guys do all this stuff with IC? I'm freakin' because I GO back to school starting on the 21st of June so I can earn some credentials to allow me to consult, rather than work directly as a teacher with a classroom. I'm soooo tired some days. I don't know how folks plan weddings, grad school, and all...

Positive side of my car accident. My husband is sick of that van, so he went yesterday and got me a Hyundai Sonata (Brand new, never had one, a new car that is) sun roof, all automated, smells marvelous, looks gorgeous....had it less than 24 hours and lost all the keys to it. I have searched and searched and searched. My husband was ****** to say the least. He had to run over to the dealer before 5:00 to get new keys made, and I still have to take in the remotes to be activated. Guess I'll do that tomorrow after my errands.

Good luck to you all on your endeavors. Bless you for your strength. I'm counting down my days to my surgery....Let's see, um, 3 days...Yipes:dogrun:
BTW..you would not believe what other bonehead thing I did today. I take 1 of my 3 ms contin and valium tablets at 4:00am. My alarm went off, I remember that, but I must have gone back tosleep. As my morning went on (Like at the vet's, I began to notice a higher pain and cramping level than usual but dismissed it as my car accident left overs. I came home and laid down for a bit and woke up at 2pm screaming in pain ...my next dose was at noon...I got up and staggered to the bathroom, noticed I hadn't taken my early AM dose, as well as being late with my noon dose. So, I took my pills and waited....the pain would not let up so I finally took percocet..it settled.)

Take care all....Your strength gives me strength. You are awesome.

Tracey

[rachelm]

Tracey,

I wouldn't have been able to keep up the pace if I was as bad as in Jan. and Feb. Most of the big stuff for the wedding was taken care of intentionally before my flare season in the winter and spring. Not only did I have to reserve things I also didn't know what this year would hold for me as far as my IC symptoms. My dr. had advised me not to get married until the summer since that was my best time of year for my IC and I would have time to recouperate since I'm not teaching at that time.

As far as the grad. class goes I had a very understanding teacher and district supervisor. She allowed me to make up classes by completing case studies based on observations that I did during my spring break. She told me that one way or another she would allow me to make up the work because she knew how hard I was working towards my additional certification despite my rollercoaster health issues. All in all there would be no way for me to continue doing everything when my pain level rose and my life stopped. I guess I'm one of the lucky ones because I do have months where I can control my IC with meds. and now the interstim. But when I flare it can completely stop my life. I was on medical leave for a month and a half this year and last year I missed 2 weeks straight and countless other days intermitently. I don't know how many more years I can keep teaching if I'm hitting bottom for 2 months of the school year. I'm hoping that I will have better results now that I've got my miracle box (interstim). Don't get me wrong I know there will still be times that I flare like last week but hopefully I'll be able to control it better.

I found that when my hips started hurting last week the pain meds. would work better than they used to and the pain didn't refer down into my legs and up my back. I also never retained like I did before my interstim even though I knew I was dealing with a flare. It was great to be able to have a strong stream and feel empty. When the pain started before the interstim I would end up retaining to the point that I had to self-cath several times a day.

I'm very happy that I decided to go ahead with the Interstim. For me it has given me my life back and allowed me to manage the IC symptoms instead of them rulling my life. I'll be even happier when my incision heals up. Little Bear how long did it take you to heal? I'm still really red all the way around the incision and the scab is really thick on one side of it. My dr. put me on another antibiodic because of the redness and he was concerned that I might be developing a staff infection. I was just curious what others experienced during the healing process.

Thanks for the support Little Bear and Tracey. I wish you the best in your journey with the implant Tracey. When you find out about exactly what the differnce is between what you're getting and the interstim I'd love to hear about it. It kind of sounds like your getting the Synergy IPG battery implanted for sacral nerve stimulation in the same area as the Interstim. If that's the case it's basically just a different battery. Please let us know how you're doing along the way. I know it really has helped me to have the support on here. Good luck with your surgery!

Rachel

[MakinIT]

Thanks...I'll remember that when I'm bare butted on the table.

Tracey:toosh:

[blue]

Keep us updated!