Sigh . . . Another Surgery Needed
 

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! :icecream:)

=Becky

big sigh
 

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

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

Laminectomy
 

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? :hug:

Thank you!
 

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

Oh no!
 

Oh my, NOOOOOO! :(

I'm sooo sorry Becky... it does seem that you, Rae and Pam have had such BAD with these darned contraptions... :confused: 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:eek:)
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...
:hug::grouphug:

Hana

Becky
 

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..... :hug: :grouphug:

Tomorrow
 

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

hang in
 

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

Thinking of you
 

Gosh Becky the time really has gone by so quickly, I recall thinking 2 months away is forever and yet here we are. I will be hoping and praying for you that all goes well and as pain free as it can possibly be. Darn, I just know it's going to hurt, stay strong, rest and use the pain relief x:hug:

We are all in spirit with you
We understand that pain
Be ever so vigilant with your recovery
Blast
Blast
Blast
Give yourself the Meds necessary
Angles sooth your brow
Love
Me

Wild Ride
 

Thanks to everyone for your thoughts and prayers - it has been an interesting experience.

I'm typing this from the CCU unit of the hospital, which I think stands for the Cardiac Care Unit. I would have been in the Neuro ICU, but there were no beds available, so I landed here.

First, the surgery - or rather the recovery room. Much like the lumbar laminectomy I had in 2010, the thoracic laminectomy to insert the paddle leads ranks right up there with one of the most painful surgeries I have had - at least from a recovery room aspect. But the real kicker came when I started having chest pains. And on top of that, my pulse went really wonky. In a matter of seconds it would go from 120 to 62 to 84, to 139 . . . you get the picture.

So they called in a cardiologist and he did some blood work. What I learned is that there are three enzymes that show up in your blood with regards to your heart. There is a really bad enzyme, which if elevated, indicates that you have either had a heart attack, or will likely be having one. That enzyme for me was negative. Whew! Good news! There is a second enzyme, that is mildly concerning, and that one for me was slightly elevated. The third enzyme indicates muscle damage - either heart muscle damage, or just muscle damage in general. That one was through the roof. But, that kind of made sense, as they had just cut through some major muscle in my back.

So they admitted me to the cardiac unit to take blood draws every few hours to test the levels - to make sure the really bad one didn't go up, and to hopefully see the others go down. They good news is, my levels that were increased started coming down, and the bad one stayed negative. I have seen my surgeon, and he said it is now up to the cardiologist if I can be discharged. The cardiologist is wanting to do a nuclear stress test that will be chemically included (since I obviously can't get on a treadmill right now), and hopefully that will go well and I can go home at some point today. It would definitely be nice to get to sleep for more than an hour-and-a-half tonight!

As far as pain goes, this hurts - really hurts - but I am surprisingly able to get around pretty well. Of course, they won't let me do any walking in the cardiac unit at all, as they want to keep my heart rate down - and I hate sitting still. Getting in and out of bed is somewhat of a comedy as It hurts to even log roll, but I'm trying to keep my sense of humor and soldier through!

Hope everyone is having a blessed day,

=Becky

Crikey
 

Oh Becky, all I can say is you are in the right place if something goes wrong. My heart (no pun intended) is pounding and I'm really shocked for you. Your sense of spirit is amazing so you just keep on keeping in, know that we are all praying for you and sending powerful positive thoughts your way. :hug::hug:

Good day friend
Happy you are doing better
You are exactly where you are
suppose to be
Love
Me

indeed a wild ride
 

How wonderful that everyone was on top of it all and your body is returning to normal levels. Seems to me you have excellent care and you are just where you are supposed to be.

I am right back to day one in my memory and can so relate to the pain...I am also so sorry you are in it.
Let's look forward to your own home where even pain in it is more tolerable just because your home.
Thanks for the post/update...holding you in Love & Light.
HB

Thanks too for your perspective on back surgeries....I only have had one...the SCS and laminectomy...everyone acted like I was just a whiner...I needed that validation.

Becky,

Thank you for keeping us informed. You know how much we all pray and care. Hope you will soon be home, if not already there.

Praying,

Gerry

Dear DEAR Becky!
 

Now for you friend
 

My dear friend

As I was awaiting my results for the cancer markers
Dr. D'Aconti my internist awesome man
There is a test I had additionally as in first fusion
In recovery room all the nurse said and along with
her comment no EKG report the one thing missing
from the OR REPORT FROM BEGINNING TO END
so point
Never being comfortable with that comment
And when had second surgery (failed to fuse) of which came
with a mess of ***k ups causing my pain today
was asked if I had a history of atrial fib. my mother and son
suffer from
And my heart would act up while turning to my left
Turning to my right I would not feel any of that scary turd
when l was on right side
I had a nuclear stress test prior to second surgery
The with the hiccup in the road removing my breast
hoping to arrest the cancer from spreading
It was the same thing
My surgical specialist said you have a strong heart
Hummmmmmmmmm
So when Doc John D said test my blood
Advanced CARDIO VASCULAR DISEASE
OFFERED BY "Singulex Clinical Laboratory
Not only test for these proteins
The "cTnl" measured in blood from healthy people
For "any future concerns of measures to be taken"
So YEAH there is that test shows if you did suffer any PRIOR
ISCHEIMEC ACTIVITY it is an extensive comprehensive
Biomarkers for heart muscles
Hope this helps when speaking with your Doc
Love
Me

FYI
www.singulex.com
Based out of Alameda,CA

Home - Yay!
 

Thanks to everyone for your thoughts and prayers.

The stress test results were good, and I was finally discharged last night, getting home around 9:30 pm. It is good to be home!

I have always had an arrhythmia issue - which is really a non-issue - but the cardiologist yesterday said he thinks I am dealing more with atrial fibrillation. He has given me some meds to help with that.

As far as the laminectomy/paddle leads surgery, the pain is being managed pretty well with the meds, but whether or not I will get better coverage this way is yet to be seen. Because of the cardiac issue I was dealing with, my Medtronic's rep did not want to do anything with my unit until my post-op appointment on the 23rd. I'm ok with that, and crossing my fingers that I will notice awesome coverage once it is turned on.

Again, thank you all for your thoughts, prayers, and encouraging words. It was a scary couple of days, and I'm so glad to be back home in my comfy recliner, with my hubby, my daughter, and my puppies here to love on me! My daughter will have to drive back home tomorrow (about 4 hours away), so I will just enjoy the heck out of her today!

=Becky