Up to 90% OFF saleRemove ads
Today | Join | Member | Search | Who's On | Chat Room | Help | Sign In | | | | | Follow Aimoo_Com on Twitter
Title: Neuromodulation SCS
Ouch   Disability Q & A
Hop to: 
Views:365     
New Topic New Poll
<<Previous ThreadNext Thread>>
Page 1 / 1    
AuthorComment
MoonstoneBeauty
 Author    



Score: 22
Posts: 12

(Date Posted:12/07/2011 8:00 AM)
Share to: Facebook Twitter MSN linkedin google yahoo

Hello... after reading OUCH1 for many years I have decided to join this far superior site!! A big thanks to you all for making it possible!

I am going to be assessed (3 days in house at The Walton hosp) for sacral nerve stimulation/ spinal cord stimulation or both....I have chronic pelvic pain caused by nerves damaged during an operation 6 years ago. My pain is so debilitating that I can hardly walk and am dosed up on very high levels of morphine.

I was wondering if any of you out there had been through the procedure. It would be interesting to know of your experiences....especially if you have had the sacral neuromodulation.

usertype:3
CrazyKim
Share to: Facebook Twitter MSN linkedin google yahoo 1# 



Score:788
Posts:402

RE:Neuromodulation SCS
(Date Posted:13/07/2011 6:25 AM)

Can't really help with your question, just wanted to say smiley56
usertype:3 tt= 0
Support us

Create free forum and click the links below and your donations will make a difference here.

www.dinodirect.com

A Huge Online Store for Various Cool Gadgets, Accessories: Laser Pointer, Bluetooth Headset, Cell Phone Jammer, MP3 Players, Spy Cameras, Soccer Jersey, Window Curtains, MP4 Player, E Cigarette, Wedding Dresses, Hearing Aids, eBook Reader, Tattoo Machines, LED Light Bulbs, Bluetooth Stereo Headset, Holiday Gifts, Security Camera and Games Accessories and Hobby Gadgets.  
MoonstoneBeauty
Share to: Facebook Twitter MSN linkedin google yahoo 2# 



Score:22
Posts:12

Re:Neuromodulation SCS
(Date Posted:13/07/2011 8:09 AM)

Thank you for the welcome CrazyKim.  There are not many people with spinal cord stimulation implants...It has taken me 11 months just to get the funding .....but it was worth a chance asking on here.

Love the pic of your kitty...is it yours?
usertype:3 tt= 0
Hurtyback
Share to: Facebook Twitter MSN linkedin google yahoo 3# 



Score:1749
Posts:879

Re:Neuromodulation SCS
(Date Posted:13/07/2011 9:19 AM)

Hello and welcome. I think there is something about SCS over on www.painsupport.co.uk
usertype:3 tt= 0
CrazyKim
Share to: Facebook Twitter MSN linkedin google yahoo 4# 



Score:788
Posts:402

Re:Neuromodulation SCS
(Date Posted:14/07/2011 1:05 AM)

 :) No, that one's not one of mine, I do have just a few living with me at the moment though!
usertype:3 tt= 0
MoonstoneBeauty
Share to: Facebook Twitter MSN linkedin google yahoo 5# 



Score:22
Posts:12

Re:Neuromodulation SCS
(Date Posted:15/07/2011 2:35 PM)

Thanks for the info on the site and the welcome...The site was very informative so big hug for that! OOps... if you don't mind a stwanger giving you a hug...lol!

Have to say that I love cats and have a beautiful Siamese that keeps me company. She hates it when I have to go to hospital and is so glad to see me on my return.... she acts more like a dog than a cat but don't tell her that!
usertype:3 tt= 0
Hurtyback
Share to: Facebook Twitter MSN linkedin google yahoo 6# 



Score:1749
Posts:879

Re:Neuromodulation SCS
(Date Posted:16/07/2011 3:47 AM)

I accept hugs from anyone!
usertype:3 tt= 0
Temporally_Loopy
Share to: Facebook Twitter MSN linkedin google yahoo 7# 



Score:18
Posts:9

Re:Neuromodulation SCS
(Date Posted:20/07/2011 2:00 PM)

Hi there Hurtyback,

Sorry not to have responded before now but I have only just found this website and registered.

I had a sacral nerve stimulator inserted a couple of years ago because of severe pelvic nerve pain - although I understand that it is more generally used for incontinence issues rather than pain.  At least, when I had it done my surgeon had only just secured funding for the pain management treatment but this may well have changed in the last few years.

Please let us all know how you got on at the hospital and if you have any questions then I would be more than happy to answer what I can, or tell you what the process was like for me.

All the best
Loopy
usertype:6 tt= 0
Temporally_Loopy
Share to: Facebook Twitter MSN linkedin google yahoo 8# 



Score:18
Posts:9

Re:Neuromodulation SCS
(Date Posted:20/07/2011 2:02 PM)

Apologies - have just noticed that it was Moonstone Beauty who started thread and not HurtyBack - sorry to both!
usertype:6 tt= 0
Hurtyback
Share to: Facebook Twitter MSN linkedin google yahoo 9# 



Score:1749
Posts:879

RE:Neuromodulation SCS
(Date Posted:21/07/2011 4:00 AM)

No problem
usertype:3 tt= 0
SunshineMeadows
Share to: Facebook Twitter MSN linkedin google yahoo 10# 



Score:3197
Posts:1647

RE:Neuromodulation SCS
(Date Posted:21/07/2011 5:36 AM)

I missed this thread when it was first posted. Welcome to Ouch.

Sacral nerve stimulation 'pace maker for pain' smiley80

click here

usertype:1 tt= 0
MoonstoneBeauty
Share to: Facebook Twitter MSN linkedin google yahoo 11# 



Score:22
Posts:12

Re:Neuromodulation SCS
(Date Posted:22/07/2011 10:01 AM)

Hello Temp Loopy and all reading this thread. Just back from hospital...I have been offered a trial for sacral stimulation. I have the funding in place already so it is a case of the med team getting everything ready.

It still seems to be a very rare op with the hospital only having done the op on three other women for pelvic pain....are you one of those T.Loopy?

It would be lovely to chat with you  T. Loopy and find out your experiences...could bombard you with hundreds of questions but do not like to do so on here as I would take up pages and pages...lol.

Any info you would like to offer me would be like a very special prezzie! A big hug and a thank you in advance!

Thanks for the welcome Sunshine...you have done an amazing job setting up the site!
usertype:3 tt= 0
Temporally_Loopy
Share to: Facebook Twitter MSN linkedin google yahoo 12# 



Score:18
Posts:9

RE:Neuromodulation SCS
(Date Posted:22/07/2011 3:58 PM)

Hi there,

Glad you got on well at the hospital and are now awaiting your trial.  I had my op at Derriford Hospital which is in Plymouth so nowhere yours I think !!!

For me, because of other problems like epilepsy and brittle asthma, I am always kept in for at least a night following any surgery, however I understand that the initial trial implantation is often done as a day case.

Under a general anaesthetic, a wire is threaded through one of the holes in the sacrum so that it is in the correct position to stimulate the sacral nerve.  Where this wire exits the body is it stuck down and held in place under a very large dressing and is then looped out so that it can be attached to an external version of the stimulator.  In my case the stimulator could be attached to clothing or a belt with a clip - which was fun when going to the loo as you can imagine.

After I had recovered from the anaesthetic the surgeon came to wire me up to the trial stimulator and show me how to adjust the settings.  Hopefully your surgeon will have less of a sense of humour than mine who wrapped me up like a mummy in a dressing that stretched across my bum from one side to the other which featured warnings about removal of the dressing written in capital letters in a permanent marker and a drawing of a smiley face!

The trial version of the stimulator could be turned up or down a few notches and I was expected to fill out a pain chart during the period of the trial.  For me, I think it was about ten days but I might be wrong.  At the end of this period I had an out patient appointment to see my surgeon again, discuss how the trial had gone and to have the wire removed - which didn't hurt at all.  The stimulator records data during the trial and this can be downloaded by the surgeon to see the levels you have had the machine set at.

DO BE CAREFUL not to make any sudden twisting or bending movements during the trial as it is possible to pull the wire out or move it into an uncomfortable position.

Hope this is of use with regards to the first stage of the procedure.  Did they give you any idea of the wait between a successful trial and permanent implantation?  I had to wait quite a while as I went into a new year's funding allocation for the permanent surgery.

All the best,

Loopy

usertype:6 tt= 0
Hurtyback
Share to: Facebook Twitter MSN linkedin google yahoo 13# 



Score:1749
Posts:879

Re:Neuromodulation SCS
(Date Posted:22/07/2011 8:33 PM)

Hi MoonstoneBeauty, thanks for letting us know how you got on. Fingers crossed that your treatment will go ahead soon and prove beneficial to you.
usertype:3 tt= 0
MoonstoneBeauty
Share to: Facebook Twitter MSN linkedin google yahoo 14# 



Score:22
Posts:12

Re:Neuromodulation SCS
(Date Posted:25/07/2011 8:53 AM)

Hi Loopy.....I cannot thank you enough for taking the time to let me know of your experience....really helpfull. My trial should take place around October. I have waited years for something like this so a few more months wait is bearable!! My hospital is in Liverpool so def not near yours!

I was told that my trial will be between 5-10 days. I will have to stay there as I live too far away. The physio actually said to me that I will have the op in the morning and he wants me to be out shopping in the afternoon. Not quite sure if he actually meant it but generally saying he wants me to be out and about to see if the stimulator works in all every day activities. Not sure how I can try to do my housework being 3 hrs away from home...lol!

No idea of the time between trial and implant. I tried to talk about it but they said they were just interested in seeing if the trial will work for me. Basically, lets not run before we can walk.

If you don't mind me asking....How are you now? Does your stimulator work well for you? They did say to me that they were aiming to take 50% of my pain away...have they managed to do that for you Loopy?

I would be happy if the stimulator worked well enough just to halve my morphine intake! I am really excited and if it does not work for me, well, it is back to researching. Nothing ventured nothing gained!

Thanks Hurty...I have everything crossed too!
usertype:3 tt= 0
Temporally_Loopy
Share to: Facebook Twitter MSN linkedin google yahoo 15# 



Score:18
Posts:9

RE:Neuromodulation SCS
(Date Posted:25/07/2011 5:56 PM)

Hi there,

Glad to have been of use!  I have found it pretty good for pain (better than I thought) and it also helps with any "lavatorial" problems which can occur when the pelvic nerves are frazzled - you'll know what I mean.

If the trial helps then I am pretty sure the main implant will be even better as it gives more choice of stimulation.

The best way to explain is with the radio analogy - my implant currently has four channels which stimulate different areas of the pelvis (at least they feel different to me) and at the same time you can turn whichever of the four channels you are using up and down in strength. 

About a month after the surgery I had an appointment with a technician from the company who make the device (Interstim).  He had a handheld PC thingy which linked to my implant and between the two of us I was "tuned in" to the different channels.  It was a case of him fiddling with buttons and me squeaking and falling off the chair saying "no, no, not there".  Yes - literally.  It was worth about half an hour of embarassment BUT to make it worthwhile you do need to be prepared to be pretty open and graphic about where you feel the stimulation otherwise it makes their job nigh on impossible.  My techie man was delighted that I was willing to actually say the anatomically correct words rather than the answer he usually gets of "down there".smiley77

So, as you can see, the temporary implant does not have nearly as much scope as the permanent one but it is definitely worth a go - at least you will know if it is going to be of any use at all.  I was sceptical prior to the trial but it does seem to be that the dodgy, screaming nerve signals are interrupted by the implant to a certain extent and I am no longer in anywhere near as much pain.

If you need any more info prior to the trial then do send me a message and I will get back to you.  Take care.

Loopy


 

usertype:6 tt= 0
MoonstoneBeauty
Share to: Facebook Twitter MSN linkedin google yahoo 16# 



Score:22
Posts:12

Re:Neuromodulation SCS
(Date Posted:30/07/2011 9:45 AM)

Hi there...again a huge thank you for the information. I am so glad that your pain is helped by the permmanent implant...it gives me great hope even though I realize that everybody is different!

I hope you don't mind but will send you a private message.
usertype:3 tt= 0
<<Previous ThreadNext Thread>>
Page 1 / 1    
New Topic New Poll
Sign Up | Create | About Us | SiteMap | Features | Forums | Show Off | Faq | Help
Copyright © 2000-2013 Aimoo Free Forum All rights reserved.
Energy effecient LED lights, bulus, lighting fixtures and flashlights from Lighting EVER. Better lighting, Better sense.
LUFFY LUFFY LUFFY LUFFY LUFFY LUFFY
LUFFY LUFFY LUFFY