Close to saying no!
 

Hi all,

I'm booked in to have scs on the 20th of August, its the Nevro hf device they are going to use.

However I'm on the verge of saying no and bottling it, I've had 14 bouts of knee surgery and usually surgery doesn't bother me. My last surgery was a knee replacement and I wasn't really keen on having it done, I had asked them to amputate the leg above the knee and give me a chance to fight and get back walking, but they said no, many times!
Anyway my pain levels have been very high ever since the knee replacement and I use a wheelchair, it was only when I went out but my right leg has now gone and I'm in the chair full-time.

I know this scs could be a chance to lower the pain, the pain management team have said it most likely won't get me pain free but would help me to reduce my meds.

I'm so confused, its actually upsetting me because I know this is a real opportunity but I have a gut feeling its wrong, I have been told I have CRPS and I'm unsure how further surgery would affect that.

Any views would be very very gratefully received.

Zec

You have nothing to lose
 

Hi there, this is a chance on a significantly less traumatic scale of tackling your pain levels. Will it totally remove your pain, No, but, it will give you a chance to reduce medication and have maybe a clearer head. Nevro aims to reduce your pain scale by up to 70% so even if you get 10% that's better than nothing. Nevro is unique in that you don't feel the buzzing sensation and you don't have to continually adjust your program levels, it really is a stepping stone for you to evaluate other options before such drastic measures such as amputation. There are a number of CRPS NT bods who have had the SCS to I hope they come by and give you their perspective. I'm about to embark on having a 2nd percutaneous lead threaded to tackle my pain levels, mine is a Nevro unit and I can truly say that even with the 1 lead it does make a difference.

Hi,
I'm not considering amputation now, it was before my knee replacement and after a lot of research it seemed to be my best long term solution. I was very active and knew I would wear out a knee joint and need another replacement in x amount of years and you can only have 3 in total and so I saw a prosthetic as my best chance.

However I went ahead with the knee replacement in March 2010, its left me in so much pain and I can't even go and play wheelchair basketball as my leg doesn't bend far enough so I can get in a basketball chair. Also amputation is no longer an option as my right leg has gone now and so have my hips.

I realise the scs is a massive chance to reduce my pain levels and believe me when I say that I want nothing more than that, however something is telling me not to. I guess it could be fear as my last surgery has destroyed my life.

This decision is causing me even more sleepless nights!

I can understanding your reluctance. I had a failed trial SCS a few years back. The stimulation was no where needed. The doctor wanted to do another trial but I felt mentally and physically I was not up to the implant even if the next trial was successful. I declined to do another trial.

The Nevro was not available at the time. From what I read regarding the Nevro it appears to have more plus features than the St. Jude ANS IPG I had for my trial. The one "high" spot in all this is you have a chance to do a trial before you decide to have the permanent implant.


Gerry

hello friend
best wishes for a remedy
in your unique
you speak what i feel
i fear any surgery
so many screw ups
this is my experience
there are many who are lucky
such as my sister
lower back surgery microscopic
a success story
her surgery would have been a invasive
one
luckily she is doing well with her back
my father an amputee right leg
just below the knee
work related injury
changes would have given
him a good number of years
but he killed himself in 1980 i was 19
he suffered much depression over his limb loss
something i witnessed and lived All my life
i wish and pray you don't suffer any unnecessary
pain of any kind
me

I read "...the scs is a massive chance to reduce my pain...
I guess it could be fear..."

Peace and a (hug), You are about the age of my children.
Mims

Hi Zec!
 

Welcome Aboard! :hug:

You've been through a lot and my heart truly goes out to you.
Your reluctance is perfectly normal. When I was first presented with this option I ran and hid. For 2 years! It creeped me out big time.
Meanwhile I continued taking higher doses of meds b/c my tolerance went up.
I tried anything and everything if it had any chance of helping.
I ended up back on Dr. Scs's doorstep. The trial went very well.
It covers 70% of RSD in both legs.
It was later found that one of my leads was pulled and migrated down to my lumbar region. I confess that I didn't follow the post op restrictions as well as I should've.
My only problem now is that I get bad back spasms. Not sure if the migrated lead had anything to do with it or if it's because of the progression of my degenerative discs.

If you dont have that 'green light' in your spirit and you have doubt's, perhaps you might want to wait a bit. Like Ger said tho, the trial is the best part about it.
Having RSD as well, I was told by some that there could be a chance of it spreading. This would be an important thing to run by your doctor. I haven't experienced this but maybe the possibility of this is one thing that has you feeling this uncomfortable.

Personally I feel that it is very important to feel comfortable about something like this before making the decision. Like I said, I took me 2 yrs to feel OK about it.
If you feel like you are being rushed into this, then your medical team needs to respect
how you feel. It can always be rescheduled.

I hope I haven't put you in circles about this :o
We're all here for you so please know that you are not alone.
I hope and pray that you feel at peace in whatever you decide.
Keep us posted....

Caring,
Rae
:hug:

I've just phoned up and said no!

Zec,

You can always reconsider down the road. Now that you have decided, I do hope you will sleep well.

Peace,
Mims

Yes I feel a lot better :)