[chrelsey]

Sigh . . .

I saw my neurosurgeon on Monday, as I have been having coverage/connectivity issues with my Medtronic's unit. The first month I had it, my pain was lessened by 60-75%, however, these past two months, I have only been getting 20-30% pain relief. Also, I would see my rep for programming, we would find a setting that seemed pretty good, and then a few days later, the coverage seemed to migrate downwards - if my lower back had been covered pretty good, suddenly that coverage would be gone, but my thighs would be buzzing. I've also had problems with it being uncomfortable under my rib cage, and more alarmingly, it has caused sharp pains in my chest, and between my shoulder blades on my back.

When I saw him on Monday, he sent me for X-rays. His nurse just called, and apparently my leads have migrated downwards, and I'm not getting connectivity on several of the levels. He now wants to proceed with the paddle leads and the laminectomy.

Sigh . . .

Ok - to quote Pam, it's time to "Put my big girl pants on and soldier through!"

So I was just wondering if anyone here has gone from the percutaneous leads to the paddle leads with laminectomy. I've had a laminectomy before, so I'm familiar with it being a more painful surgery and recovery, but I was wondering about my battery - I'm assuming that it doesn't have to be replaced, but how do they attach the ends of the new leads to the battery? Will there be a second incision at my battery site?

I scheduled the surgery for June 11. I know it's kind of far out, but last year our lives were put on hold with my multiple surgeries, procedures, etc., and this year we are planning a trip (16 hours away by car) to see our grandkids the last week of May, and I just refuse to miss that!

Any thoughts, insight, or words of wisdom would be very much appreciated! (Also, chocolate, wine, and ice cream are perfectly acceptable methods of offering comfort . . . just in case you were wondering! )

=Becky

[Hannabananna]

Dang it Becky...I am so sorry you are facing surgery again.
I do hope it brings back the pain relief that you received those first few weeks.

For me I always just say...gotta do what ya gotta do...

I do not have any advice ...just support.

I can say from experience that it does make a difference as to "where' the laminectomy is done...mine is at L7...the area that covers posture and arms...It really took me two years to get back "normal"...I suffered awful from that pain between the shoulder blades.

A trip to look forward to... that is always good for our spirits.
all my best
HB

[eva5667faliure]

Originally Posted by chrelsey

Sigh . . .

I saw my neurosurgeon on Monday, as I have been having coverage/connectivity issues with my Medtronic's unit. The first month I had it, my pain was lessened by 60-75%, however, these past two months, I have only been getting 20-30% pain relief. Also, I would see my rep for programming, we would find a setting that seemed pretty good, and then a few days later, the coverage seemed to migrate downwards - if my lower back had been covered pretty good, suddenly that coverage would be gone, but my thighs would be buzzing. I've also had problems with it being uncomfortable under my rib cage, and more alarmingly, it has caused sharp pains in my chest, and between my shoulder blades on my back.

When I saw him on Monday, he sent me for X-rays. His nurse just called, and apparently my leads have migrated downwards, and I'm not getting connectivity on several of the levels. He now wants to proceed with the paddle leads and the laminectomy.

Sigh . . .

Ok - to quote Pam, it's time to "Put my big girl pants on and soldier through!"

So I was just wondering if anyone here has gone from the percutaneous leads to the paddle leads with laminectomy. I've had a laminectomy before, so I'm familiar with it being a more painful surgery and recovery, but I was wondering about my battery - I'm assuming that it doesn't have to be replaced, but how do they attach the ends of the new leads to the battery? Will there be a second incision at my battery site?

I scheduled the surgery for June 11. I know it's kind of far out, but last year our lives were put on hold with my multiple surgeries, procedures, etc., and this year we are planning a trip (16 hours away by car) to see our grandkids the last week of May, and I just refuse to miss that!

Any thoughts, insight, or words of wisdom would be very much appreciated! (Also, chocolate, wine, and ice cream are perfectly acceptable methods of offering comfort . . . just in case you were wondering! )

=Becky

Becky
your so sweet
so sorry to hear
they migrated
prayers and love
eva

[PamelaJune]

Oh Becky, I'm so sad for you, we have these SCS done and to begin with think our prayers answered only for us to find down the track the pain worsens and dare I say moves slightly away from where originally and seems marginally worse than before. I truly believe it's because the area that is suffering with pain is trying to get the message to us something is wrong, you masked the pain here so I've moved elsewhere to get your attention! The reason why it feels worse... Well I believe because it's in a new area we feel it so much more as we had become accustomed to where it initially was..

I have had 2 laminectomies and bone grafts, the first in my fusion of 1977 and the 2nd in my fusion of 1994. They were painful. I get confused between a laminectomy and a laminotomy, I think laminectomy they take it all and laminotomy only take some. Either way, they hurt far more than the fusions I have had, but, I did get through and on both occasions went on to live 15 years or more of quality active living.

I'm not sure what they do about the battery, for me, they have said if and when I have the laminotomy and paddle inserted they will connect the paddle and new leads to the existing battery which is in my right buttock, fairly high up, but below where my jeans sit so I have absolutely no trouble with the battery site at all. I think I recall your battery is elsewhere, so maybe if the battery site is causing discomfort seeing as you are under you could ask them to reposition it somewhere more comfortable?

I agree with holding out on the date for your surgery, I did the same last year my NS wanted to operate mid April but we were wanting to go to the UK to see my father in law in the May so he agreed and arranged to do it on June 6. I got ill on the day so they had to discharge me and did it the following week on June 13.

How many surgeries will this one take you up to? And if you don't mind me asking, where are you having it done?

[Rrae]

Oh Becky.......
Gee Whiz. I've always wondered WHY don't they just do the paddles in the first place b/c too many times it ends up being this way it seems.
Part of me can't help but think the surgeons certainly don't mind
doing the extra surgeries. $$$$ <--- know whatamean??

Like Pam said, I don't think they would have to change out the battery. At least you would be certain to get good 'secure' coverage once they do the laminectomy to hold them paddles in place. Don't lose hope tho. I'm sure you WILL end up with the perfect coverage where it should be.
I don't think I know of hardly ANYbody who hasn't had to deal with lead migration when they just get percutaneous leads (including moi) They just don't seem to hold up very well.

The good thing is that you 'know' you can get at least approx. 70% relief b/c you had it in the beginning. Maybe now you will even get a higher percentage!

How wonderful that you are making plans for a trip to see your lovely grandkids. Hopefully your Dr will give you extra meds to have on hand so that you dont' have to suffer while you are on the road, etc.

And yes, you DO have that tuff soldier in you, so hold your head high and march right on thru this!

Rae

[chrelsey]

Thanks to everyone for the words of encouragement - you guys are the best!

Pam, I live in Texas, very close to the Gulf Coast. The Texas Medical Center, which is composed of 10 or more major hospitals is in Houston, which is about an hour away from me, and that's where I'll be having it done. I fully believe that the best of the best in this area are in the med center, so although there are plenty of hospitals closer to me, it is well worth the drive.

Also, I did speak to my rep today, and she said that they wouldn't have to replace the battery - which is a HUGE sigh of relief for me! My battery is located on the left side of my back, just under where the waistband of my jeans hits. That battery site has continued to be a source of discomfort for me - I don't know if the weight loss had anything to do with it, but it seems to stick out more than it did at first, and will just randomly shoot out sharp pains. That site is also painful if I lay on my back at night for more than a couple of hours. So the possibility of a new placement area was the only upside if they needed to replace it, but I am really, really glad that they don't have to.

Rae, it's funny what you said about why they just didn't do the paddles in the first place, because in my initial consultation with my surgeon, asked him the same thing - if there is a chance of migration, just do the paddles to begin with and be done with it. He said no, that most people don't have problems with the percutaneous leads, and since the paddles/laminectomy is a more intense surgery, it was better to just have it as a backup plan. But I couldn't help but think that it's because a second surgery means extra $$$ for them. I hate to think that way, but after reading how common migration can be, why not just start there in the first place?

And about adequate pain meds for the road trip - my pain management doc is determined to wean me completely off pain meds right now, since I now have the SCS. Even when I told him last month about the problems I was having (this was before I saw my NS), he still wanted to proceed. I see him on Monday. I hope that when I explain what we have discovered, and about the new surgery that is needed, that he will back off of that plan. But really - what can I do if he doesn't? If that's the case, I will just have to suck it up and hope for the best.

Thanks again to all!

=Becky

[Hana]

Oh my, NOOOOOO!

I'm sooo sorry Becky... it does seem that you, Rae and Pam have had such BAD with these darned contraptions... They are supposed to help pain, not cause you more and more. I'm speechless and quite sad for you ladies. What I can do today, is send some cyber-chocolates your way...
(I just lost my post again so need to finish up... to get back to the couch for me ouch)
I have been thinking that maybe I don't want to put myself in your boat. Still, I go back on monday for final review. If my GI can give me any info on my malabsorbing problem I'll know more about what I am up for. At the moment the pump, if anything, look good.

Blessings... Healing, and tons of LOVE... for all of you suffering in pain now...


Hana

[Mark56]

Having been through both the posterior fusions which were discectomy/laminectomy/fusion and knowing how pain comes with them THEN the SCS implant with laminectomy to implant the paddles, I have clue on the pain perspective of real invasive back stuff multi-times compared against the lami of the implant..... thing is that implant surgery was uncomfortable for a while post surgery but nothing compared against the full fusion routine.

Point is I truly hope your experience will be that it is not as bad as feared. That it will heal up well and the paddles scar in tightly. That you will remember BLAST through this affair, as it will come in handy. Also, that all will be well in all things for you after it is said and done.

Just DON'T go feeding horses with Rae. She uses hay bales...... a problematic thing if you want those paddles to scar in well.

Prayin for ya, albeit in June. That is a fer piece off.....

[chrelsey]

Wow - the two months since I originally posted this have flown by, and now tomorrow is surgery day - revision to remove percutaneous leads due to migration, and do a laminectomy with paddle leads.

Dreading it.

I just want it to be Thursday where I am hopefully back home and it is behind me.

My daughter drove down this morning so that she can take care of the chickens and the livestock so that my hubby can stay overnight at the hospital with me. He's never been able to do that before because of the farm chores, and I've always wished he could. I'm feeling very grateful and thankful that he'll be able to stay up there with me this time.

Sending up prayers for everyone right now who is struggling. I've been lurking and not posting, but have been following everyone's struggles and praying for each of you.

=Becky

[Hannabananna]

hey Becky
I lurk a lot to...tho I recall the date...holding you in prayer; love and light.

I do hope your laminectomy is lower than your bra strap......that area is the worst for that back stabbing pain.....that paddle does hold it all good and tight so best hopes for all that pain relief.

Great that hubby is there for you and I am sure your daughter wanted less stress for you and also to be closer to you.

We are right here Becky....let us know how you are when you can ...

AND sit your ***** in a chair and be still

HB