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Moderator_Jen

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Reply with quote  #1 
I have pinned this topic as there seems to be lots of questions re SNS implants and hopefully this thread might answer some of your questions.

If you like to discuss anything contained in the thread then contact the COB Office and they will able to help. If you would prefer to ask me direct questions then please pass on your contact details to COB Office and I will contact you when I can

I am finally going ahead with my SNS trial!!  I know that there are several people on the forums who are considering this so I thought those people might find it useful if i post about my experience...

I will post regularly and let you all know how things are going, but if you have any specific questions etc please feel free to post them and i'll do my best to answer your question or i don't know the answer i will find out for you!!

OK  - 1ST POST!!!

I have a pre op appointment on Wednesday 25th Jan and I will be admitted to hospital on 1st February and will have the SNS fitted on 2nd February.

On the 2nd Feb i will have the permenant electrodes attached to the nerves in my spine, but these will then be attached to an external SNS unit.

I will undergo an 8 week trial and during the trial i will be assessed to see if the SNS is showing signs of working and a decision will be made as to whether a permenant unit is fitted internally.



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Moderator_Jen

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Reply with quote  #2 
I had my pre op assessment appointment and all went well. They took my blood pressure, urine sample, blood sample and swabs for MRSA.  I then saw a Dr who checked me over and did a neurology check.  Providing nothing shows up on the blood tests and samples then i am good to go ahead with the SNS surgery

My SNS is scheduled for 2nd Feb, however I will be admitted the night before (Wednesday 1st Feb) as the surgery will take place early morning on the Thursday.

On the Weds I have have to wait till I get a phone call (anytime after 12 noon) to confirm that a bed is available and the SNS surgey is going ahead.

All being well and a bed is available then i get admitted Wednesday evening, have the surgery on the Thursday morning.  The SNS Unit is turned off until the Friday

On the Friday they will turn the SNS unit on and find frequency etc,  I will be taught how to use the SNS wtc.

Once everyone is happy that i am able to use the SNS unit and i am recovered from the surgery i will be allowed home. 

I will return to the hospital after 6 weeks and the trial with the SNS will be assessed and a decision will be made as to the next step.

I guess the next post will be after the SNS surgery - wish me luck!!



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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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DawnCOB

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Reply with quote  #3 
Hi Jen,

Hoping and praying all goes well for you.

Keep us posted when you can ... really really really hope the SNS is of great help. I know people who have found it very beneficial.

Fingers crossed Jen... let us know when you can how you are getting on.

best wishes
Dawn
barbara46

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Reply with quote  #4 

hi jen just want to say good luck for the op be thinking of you big hugs  xx

barbara xx

ModeratorKate

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Reply with quote  #5 
Hi Jen
You know my love hug and prayers,are with you.

Hoping to glean some really good information, on your return when upto, posting.
Kate


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JaneW

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Reply with quote  #6 
I hope it all goes well for you Jen.
Love and best wishes.
Jane xxx
Moderator_Jen

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Reply with quote  #7 
Awww wow what wonderful good luck wishes - thank you so much.  I have to confess i am extremely nervous, its taken me over a year to finally decide to go ahead and have this done.  My family are being very supportive and very strict and firm with me - I am not allowed to change my mind  - they know me too well!!

Its really lovely to know I have such fabulous support in my forum friends, it means the world to know that you all care - thank you  xxx

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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Hydro1

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Reply with quote  #8 

Hi Jen,

 

I hope I'm not too late to post as I just wanted to wish you the very best of luck for your surgery and I hope it all goes well.

 

Sending lots of good thoughts your way for a fast recovery.

 

Best wishes

 

Hydro1

Moderator_Jen

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Reply with quote  #9 
Unfortunately due to a bed crisis (they haven't got any!!) my op has been cancelled.

They will write to me with a new date, so i will keep you all updated when i know more.

Once again, thank you for good luck wishes, sorry that I can't report any better news.

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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
Moderator_Jen

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Reply with quote  #10 
OMG!!!  Just got a phone call and my surgery is going ahead!!  i'm now on my way to the hospital  - see you all soon!!


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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
sueworld2003

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Reply with quote  #11 
How are things going now?
DawnCOB

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Reply with quote  #12 
thats great news Jen.... hope all goes well.

Dawn
Moderator_Jen

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Reply with quote  #13 
Hi All

Well after the drama of last night my op finally happened!!

The op itself took a couple of hours, and I came round in recovery really well and wasn't in any pain or feeling sick, which was a really big bonus!!!

I have a huge padded dressing that goes from my right hip right over to the just past the side side of my coxes bone and is about 8 inches in depth. I can't see the electrodes at the moment as they are hidden in the dressing.

As the day has gone on I've developed a bit of a headache but I was told that would be one of the side effects and it's manageable so it ok.

I will get the sns unit tomorrow and they will turn it on and find the right settings.

No news on when I will be discharged, but I will see how tomorrow goes and if things go well i will beg to be released ASAP!!

All in all - things have been much better that I thought they would be and I'm looking forward to seeing what my little box of tricks can do to help reduce my pain and symptoms!!!

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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
Eva

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Posts: 268
Reply with quote  #14 
Hope it all works well and that you feel better soon.
DawnCOB

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Reply with quote  #15 
Hi Jen,

Glad the first step had gone well... Hope your headache subsides and you manage to get some sleep, which is not easy when in hospital.

Many thanks for text. Let us know when you can how you are.

All the best for tomorrow and trying out the unit .

Dawn
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