neurostimulators

[Guest guest]

Hi all,

I'm due to have a neurostimulator implanted on May 8th. It's taken me a

long time to get to this point. Un/misdiagnosed at birth, symptoms

appeared at 26, misdiagnosed for 6 years, rapid symptom progression,

two detetherings, CSF leak as a result of detethering #2 that went on

for 2 years. I finally got them to fix the leak in January of this year

and am just now feeling stronger. I've maintained full-time work

through it all (except for recovery time, of course), and have been

able to regain pretty good mobility through physiotherapy and regular

exercise, though I'm nowhere near the person I was in my 20s. I've had

to deal with that, as we all have.

I've also had bad neuropathic pain that's been resistant to drugs and

other therapies for the past 5 years. I take 400-500 mgs of topamax

every day that, while taking the major edge off the pain, doesn't take

it away completely, hence the reason for the neurostimulator.

I understand I'm fortunate to have made it through their stringent

screening process to get to this point, but when I got the call on

Friday, my heart sank. The thought of another surgery and recovery

process and having this hardware implanted permanently in my body is

daunting. I'm frightened and part of me just wants to be left alone

now. I've gambled in the past with these surgeries and their medical

interventions and they haven't turned out well (two detetherings...and

now I'm retethered again.)

Would anyone out there with a neurostimulator be willing to chat (even

offline) with me about the realities of the recovery process?

1.) What was recovery like? (I live alone and don't have any family nearby.)

2.) How long did it take before you were doing all the things you could

do before the stim was implanted? 3.) I try to be as active as

possible. What has having a neurostimulator PREVENTED you from doing?

4.) How long before you went back to work full time?

5.) Do you have a battery pack implanted in your abdomen? Is it visible?

6.) Do you have any regrets about having the stim implanted?

Thanks very much in advance. All the best to everyone,

Debbie