Buttons

Sacral Nerve Simulation Surgery

36 posts in this topic

I went back to the hospital today and have been told that they will fit a permanent one!

The temporary one was successful even though I've had a few issues they said this was normal because of the way they have to do the temporary one but with the permanent one they can can set it much better. They will place the electrodes into the nerve & then place a battery unit in a 'pocket' in my the upper part of my buttock. They will do it as a day patient but will need to take things easy for 2 weeks then I go back and they will switch it on & set it up with the computer. Once it's fitted I will not be able to have an MRI scan and there are some limitations on stretching & strong physical exercise but I think these are out weighed by the benefits of having it done. One downside is that the battery lasts for 3 - 6 years & then they have to operate again to replace the battery.

He also told me that they have a few other patients with SSc who have also had this procedure done.

 

Buttons

Share this post


Link to post
Share on other sites

Hello my dear Buttons,

 

I'm so glad you've had success with this and that you are able to get a permanent one. It is a bummer that every 3-6 you have to have a battery change however. I'll be thinking positive thoughts for you!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I'm glad it's working for you too Buttons! Good luck with the procedure...


Sending good wishes your way!

Share this post


Link to post
Share on other sites

That's great news! I'll bet you are really pleased. We'll all keep our fingers crossed everything goes just great on the day and that the batteries last much longer than expected. You will take it easy during your 2-week recovery period, won't you? wink.gif

 

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Buttons,

 

That's great news! I'm happy for you and hope the surgery goes well. It certainly is wonderful to find something helpful with the issue, isn't it?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Buttons,

 

Thank you for sharing this news with us! I wish you great success,

not only with the procedure, but also with the benefits. It is fantastic

that something such as this is doable!

 

Please let us know how you are getting along, both post-surgery and results?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Well I go in tomorrow to have this done and I have to admit to feeling very nervous even though I've had numerous operations before!

 

I can't eat or drink after midnight tonight which those of you who suffer from Sojgren's Syndrome will know why I'm not looking forward to that! My hubby is going to take me but I still have to ring up to find out if they have a bed for me. I was told that the procedure takes about an hour in theatre and if I'm okay they may let me home tomorrow evening.

 

Buttons

Share this post


Link to post
Share on other sites

Buttons I hope all goes well for you tomorrow including getting a bed. Do let me know what the food is like as I am fascinated by how bad it can be, if you can turn the food container upside down and the food does not move it's best not to eat it. :VeryHappy:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Would just like to thank everyone for their kind wishes.

 

I have had it done and needless to say I'm sore! The consultant has put the battery in higher up and much deeper than usual because I do ride a bike.

 

Arrived early morning but had to wait until 11 O'clock for a bed and was told I wouldn't be going down to theatre until late afternoon but after lunch was told they'd changed the list around and I would be going 2nd after lunch. I had a few problems with the anaesthetic so had to stay in over night. All I had to eat was a biscuit and cup of tea because they kept me in recovery for much longer, I was extremely cold and the nurse said my temperature was fine so had to explain yet again about the Raynaud's at which point she felt my feet and couldn't believe how icy cold they were. At this point she got me 'warmed blankets' to wrap me up in even wrapping one around my head - I looked like a mummy but did warm up eventually.

 

I have been very dizzy and felt very sick along with dreadful shaking which looked as if I was having a fit it was that bad, also the inside of my mouth is a mess with large blood blister I'm assuming because of the tube. Anyway I came home this morning and still feel shaky so I'm doing nothing, apart from sat at the computer.

 

I go back in 2 weeks to get the dressings removed and to be 'switched on'! Well I must go because I can't sit here for any longer.

 

Buttons

Share this post


Link to post
Share on other sites

Buttons, glad to know that surgery went well and you are home recovering. Please let us know how you are doing every few days. When they get you set up and up and running let us know how the system is working. Good idea about putting the batteries up higher so you can still ride your bike. We don't like lifestyle changes. It bothers us even if one or two things are taken away because of our illness. We just need to learn to adapt quickly and find alternatives when possible. Rest and get yourself well.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Buttons, I'm so glad your surgery went okay!

 

I'm sorry you had to stay in overnight. But glad you got some extra warm blankets.

 

May I give you some Get Well flowers? :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

You're in my thoughts Buttons. I hope you recover and feel better very soon.


I may have Scleroderma, but Scleroderma doesn't have me!

Share this post


Link to post
Share on other sites

Hi Buttons my Dear!!

 

You are such a trooper! I hope to never have what you just had done. I'm glad you are through it now however, and the healing can begin.

 

I go in for a colonoscopy tomorrow and already decided I will have the Raynaud's talk right up front and ask to leave socks/gloves on and get extra blankets. It doesn't take much for me to turn all kinds of colors.

 

Love you much!!!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now