WTR Nymph,
I'm sorry you've obviously had a terrible time and my heart goes out to you. I know that there are cases where things have gone horribly wrong with these implants (or ANY surgery procedure for that matter).

It's good of you to join our forum and share your experience, and I thank you for being more clear of what you were trying to get across in the post prior to your last one....
People do need to be aware of these circumstances where things have gone wrong......
I'm not sure if you've read many of the other threads and posts here at the SCS/PP forum, but if you have, I'm sure you've noted that there are aLOT of people sharing aLOT of concerns and issues that have been addressed.

I do not think that ANYbody here is thinking in terms of 'going on vacation' as they near the date of their procedure. As a matter of fact, most everybody is very nervous and uncertain and have many many questions.

The circumstances surrounding your health care and the facilty in which you received this healthcare and the protocol in which your healthcare team has chose to follow seem a lot different than what the standard procedure has been for most.

Again, I am VERY sorry for the terrible times you have faced and I hope things look up for you.

I'm not quite sure what you mean by alot of "B.S. around here and people need to take things seriously".......but again, I invite you to read the many MANY threads and posts of people's experiences and research that has been shared.

Caring
Rae

P.S. i hope you get your beaver situation straightened out.....

Let us know how your Dr appt went. I hope you can get rid of that bag soon. It must really be a challenge to have had to drag it around all this time.
God Bless

My only way to cope with things is .. a sense of humour.

I'm not actually looking forward to going into a NHS hospital .. I've been lucky and been able to go to a private Hospital that is like a blummin Hotel .. curved staircase, chandeliers, the lot. Unfortunately, the Stim isn't covered by private insurance as it's not "a cure".

When I ask what to take with me .. by that I mean, clothes to wear in the day or do you just wear PJ's alll the time .. will I need a full wash bag or will it just be a quick body wash I will get in Hospital ...

Anyhow, hope you get on ok. You sound like you've had a crap time.

The Nurse Specialist visit went really well. She said that if I hadn't had the appointment booked for the Physc Eval next week she wouldnt have made one for me. She considers my spirit strong, and that I am ahead of my field with coping.

Wish you all the best of luck on here .. xx

Hi Twinmom, I wanted to reply to this because I have dealt with these issues. I have bladder disease (IC) and my stim has actually helped with this pain a bit. I used to have to be on cathether treatments that I do myself but now I am on meds and my stim helps a little especially because I do not have to get up all night to go to the bathroom. I know it does help me because when it is shut off I have way more symptoms Also, I had sexual problems prior to stim surgery and it helped me in my case but I should also say that I had a total hysterectomy in 05 and still have weird pain from that so that is a separate issue. I do have to have stim on if and when are together though or I am in a lot of pain in my back and legs Hope this information helps! Oh yeah, I also did not have an in home nurse but my mom and grandma (or husband) helped me out and they are going to help be helping me out for my surgery in November. Like I said, I really hope that helps and that I did not offend anyone, if you have more questions feel free to ask take care and good luck! 'sTara

I think you are wonderful and I too cope with humor, I actually DEPEND on it! Most of us try to join in as a team and keep the atmosphere as light as possible, yet at the same time, we are fully aware that we are dealing with a very serious decision

Your thread is a wonderful one and you've asked some very valid questions that will help others as well. Unfortunately, once in awhile a person will come along and unleash their frustrations without regard to respecting the feelings of others. I hope you don't take personally what was said and I'm thinking it was meant (I think) as a generalized statement to the forum itself, not to you personally.

SO GLAD the appointment went well! Sounds like you are well on your way!

Rae

Saffy, I am glad your doctor appointment went well! I was going to try to answer some of your questions too...even though I am very late Are you asking about the permanent stim or the trial? Sorry, I just wanted to clarify before I talked about the wrong things.
1. For the permanent surgery I only had the clothes I was wearing and went home that same day. This surgery is going to be different though because I am having the other leads put in.
2. I like to wear warm up clothes or sweats(things with elastic bands not buttons or zippers)
3. I pretty much lived in my sweats or warm ups for awhile until I went back to school
4. I bought this stuff from the hair salon that you spray in your hair or I would just put my hair in a ponytail since I was not going anywhere
5. I stayed at my mom's house for a few days and my husband did the chores which did not frustrate me at all. For this surgery coming up I am staying with my family again because I heard I will be more sore and need more help.
6. I am not sure about the bending but you are on restriction for awhile.
7. I am not sure why they ask probably your comfort level.
8. I have had my leads move twice and you can tell the difference because it either causes you pain to use it when you turn it up or it no longer covers your pain areas properly. Its important to always tell your rep when things don't feel right because it could just mean you need to be reprogrammed. The first time my leads moved, we don't know why but the second time was due to a fall.
Also, no one can ever tell you have it on and no one else can feel it but you, no matter what you are doing and also thunderstorms don't affect mine but surround sound in the movie theater does and I always have to turn it down when I am watching a movie. And they did not give me a choice about where to have it but it is in my lower back on the right side Hope that I could help some too, and if you have more questions feel free to ask! Good luck and take care 'sTara

Thanh you. It was a bit of an emotional day yesterday - I had to go to bed aftercsome meds because of the journey and because I'd got myself so worked up.

Donna, my nurse, was lovely. She really understood what it was all about and likened the process of losing your "old" life as a bereavement, in that thou go through the same stages

I was really glad mike was with me though he admitted nearly fainting when she told him I would be sat up and awake during the trial.

I got to handle the medtronic controller - which is exactly the same size and shape as my tens unit! She showed me the programmer and two different sets of leads. And of course the battery which Mr. Roe likes to put in your front.

I think what I am going to discuss next week is
.... What if they say no and what if it doesn't work. I have to admit not to really thinking about that as why worry if it may not happen but in this instance I think it wise. How were you guys with this

Thanh you. It was a bit of an emotional day yesterday - I had to go to bed aftercsome meds because of the journey and because I'd got myself so worked up.

Donna, my nurse, was lovely. She really understood what it was all about and likened the process of losing your "old" life as a bereavement, in that thou go through the same stages

I was really glad mike was with me though he admitted nearly fainting when she told him I would be sat up and awake during the trial.

I got to handle the medtronic controller - which is exactly the same size and shape as my tens unit! She showed me the programmer and two different sets of leads. And of course the battery which Mr. Roe likes to put in your front.

I think what I am going to discuss next week is .... What if they say no and what if it doesn't work. I have to admit not to really thinking about that as why worry if it may not happen but in this instance I think it wise. How were you guys with this

Hello All, Has anyone gone to the FDA to check on recalls? No, no one responded to that post of mine. Also has anyone read there medtronics or any other pump manufacturer's protocol for an explanted pump. No one responded to my /where is my pump post? I'm still looking for my pump and I think I know where it's at! Rrae, sorry for that little brainfart I had this mornin! I've been up since 3:00a.m. trying to find my son at Sheppard AFB. Surgery is a very serious invasive procedure and after my mishaps, I only take notes while hospitalized. But, I won't be in the hospital anymore, my insurance dies Nov, 28. United Healtcare had already booked hotels in my honor. They are going to have biggest party when they drop me. Saffy I hope and pray all goes well. I do not have any room in my boat if you end up like me. I've been the captain of this ship for 4 months and I'm not giving up my status. Hugs and Lots of Luck, WTR Nymph

Hi Nymph .. I really feel for you and this truly makes me appreciate the NHS in the UK.

I have the medtronic brochure but I think it's just the blurb they give you when you are being considered for one as there is nothing in there about removed pumps.

I have been lucky enough to have quite a few procedures under our private health care, but unfortunately they wont look at a SCS because, they say, it isn't a "cure" .. you are not likely to get "better".

When we first joined, they offered me as much physio as I needed .. I see they have sneakily now dropped it to ten sessions a year, so I am saving those for when/if I have had the stim.

Regarding your questions about your explanted pump and the FDA recalls
I'll send you a reply on the thread you posted about this .....
As, this particular thread we are on is relating to Saffy's upcoming procedure and the progress she is sharing along the way.....

Thank you
I'll see you over on your thread

Rae