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ModeratorKate

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Reply with quote  #16 
Hi Jen
Good news so far,Headache will hopefully be managed.

Am sure they will soon have the correct connections for you, and then hopefully, your pain level will subside.

Love and Hugs
Kate


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Moderator_Jen

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Reply with quote  #17 
I'm home!!!!

The specialist nurse came round and gave me the sns unit. It's a small box that clips onto my underwear or clothing waistband. It is attached via an electrode that come out of my spine.

They turned it on and slowly moved the strength dial up until I could feel a fluttery tingly feeling in my urethra. It's a very strange sensation but not painful. They have said that as time goes on and my body get used to the sns and heals itself from the surgery then I may need to increase the sns strength. I have the sns unit connected during the day and disconnect it at night in case the wires get caught up during the night etc.

I have also noticed that if I sit or lay in certain positions I can feel a strange sensation in my bladder which is down to the sns signal too, so at the moment it's a bit difficult to find a comfortable position.

I have been told that the stitches have to come out in 10 days and I'm not supposed to go back to work before the stitches are removed. I am also not allowed any heavy lifting or hoovering for 6 months. Also whilst the temp electrodes are in I'm not allowed to bend too much or stretch as I run the risk of pulling the electrodes out of place.

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DawnCOB

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Reply with quote  #18 
Hi Jen,

WOW you are home... thats great news. Thank you for letting us know I was wondering how you were getting on today.

Im sure you will be able to rest and get more comfortable home in your own bed. 

Keep us posted how you are feeling.

all the best.
Dawn
ModeratorKate

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Reply with quote  #19 
Yippee! Sensation sounds a bit like the external 'Tens' , hopefully you will gradually feel some compensation, at the moment your poor body has been attacked all round, so as they say, take it very gently, let the healing begin!!!!

At least at home you have your own extra comforts(includes the family).
I really hope this will give you some respite soon.
Kate


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Moderator_Jen

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Reply with quote  #20 
Hi all  - update time!!

During the night I have to disconnect the unit and i was up 4 times having to void and so this morning i was absolutely shattered and feeling very disappointed.

I had to change the dressing today and i have 3 seperate sites with stitches - the bottom of my spine looks like a patchwork quilt!!  I couldn't reach to put the dressings back on, so my poor daughter had to help and she went very pale when she saw the stitches!!  She felt very sorry for me an herself for having to change the dressings!!

I then plugged myself in to the SNS unit and OMG I soon saw a very noticable difference in my frequency - I have only voided 4 times today!!  Normally I go every hour (and then usually a few times after the inital void till i'm empty) 

Normally as soon as my bladder starts to fill i HAVE to go to to the loo, so having the sensation of my bladder filling up is sooooooooo weird!!  I guess now that bladder training comes into play to help increase my bladder capacity!!  I have noticed that when I did voided today I am voiding much bigger amounts, its been such a long time since i have had the feeling of my bladder filling up.

I have also noticed that my flow has also improved and i now longer dribble - the flow is much stonger and i haven't been stopping and starting.

The only negative is that it has made no difference to the pain at all, in fact its slightly worse.  However I have been through a lot of the past few days and I was also told that when i was under they did a 3D bladder scan and another EMG test also had to catherise me so they could tell if the bladder was reacting to the nerve signals.  I'm remaining hopefully that once my bladder settles down from the trauma of the past few days it will start to response and the pain will slowly decease.

All in all I was amazed how quickly the SNS has affected my voiding, and that it has been so noticeable. 

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ModeratorKate

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Reply with quote  #21 
Hoping last night was a little better.
Poor Daughter,it is not pleasant when its their lovely Mum in so much pain.

Have they told you to change the dressings? Or was it because they were showing seepage??
Uuually it is better to try and leave in place until stitches have to come out.

Would hope that as the days progress,the pain WILL ease.

Thank you for the updates.
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Moderator_Jen

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Reply with quote  #22 
I was told to change the dressings daily but given the choice I'd rather leave them be!! Hubby changed them this morning and he went pretty pale!! Looks like non of my lot are born medics!!

I can really notice the difference when I have the sns on, my bladder doesn't get that constant needing to go feeling when it's switched on and I dont feel it filling up - since turning it on this morning I haven't been once, despite having a large drink - its all a bit strange and wonderful!!

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JaneW

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Reply with quote  #23 

Hi Jen,Glad to hear that you are back home and noticing some positive bladder changes already.I do hope that the pain eases quickly.Lots of love Jane XXX

Moderator_Jen

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Reply with quote  #24 
Things are going well and also not so well...

On the plus side the voiding is continuing to reduce -  only 3 times today, despite drinking well over a litre of fluid.  The flow is also greatly improved and I no longer get a feeling of retaining after emptying, so on this side of things its amazingly brilliant.

Now to the not so great side

I am oozing blood from the electrode site, the other 2 wound sites are fine, but the site where the electrodes come from is oozing.  I have also developed a sore throat (i'd make a fortune of adult chat lines with the sound of my voice at the moment!!) a slightly high temperature and feeling queasy.

I've phoned the hospital for advice and they they have said there is a chance it could be an infection developing around the electrode site, or hopefully i've just over stretched and have just caused the wound to ooze and just by chance I could be developing a viral infection (which isn't any concern or danger to the SNS and the wound sites)

Either way they have advised that i wait until tomorrow to see what happens and give them a call back for further advice

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ModeratorKate

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Reply with quote  #25 
Oh Dear!!!! hope you get some good advice this morning!!!!!

Temps,Always a concern

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Moderator_Jen

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Reply with quote  #26 
I have the mother of all colds (think I can thank my 17 yr old daughter for this little gift!!).

On the plus side at least its not a bacterial infection and therefore the sns wound sites are not at risk or infected.

Guess if I'm going to be ill I might as well get it all over and done with in the sand week!!!

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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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ModeratorKate

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Reply with quote  #27 
trust you to catch something for free

But hope you will soon be feeling a LOT!!!! better..
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JaneW

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Reply with quote  #28 

Get well soon,Lots of love.Jane XXXX

DawnCOB

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Reply with quote  #29 
Sorry to hear you have a cold also now Jen.... hope you are soon feeling better.

Keep us posted how you are when you feel able .

best wishes
Dawn
Moderator_Jen

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Reply with quote  #30 
Still have the cold  

Have been signed off for for another week as my stitches aren't ready to come out yet.

As far as the SNS is concerned - its amazing - it certainly has earned the title of my magic box!!!  Its completely resolved my voiding issues 100%.  my bladder can now fill up and i don't feel the constant urge to empty or that i still have to go after voidng.  I've gone from voding about 30 times a day to 4.  Also even though i don't use it at night (because its external, i can have it on all night when its fitted internally and is permenant) i have noticed that is has started to reduce my night trips to the loo - i even managed not go at all last night - i can' remeber tha last time i was able to go through the night without needing the loo.

I'm still waiting for it to help the pain but even if it doesn't help the pain the difference it has made to the voiding is so amazing that trying it was the best decision i have ever made

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