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ModeratorKate

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Reply with quote  #76 
Oh Jen !!! Why oh Why!!! do people think we are all stupid, when they themselves lack the ability to understand their jobs. Grr!!!!!!

Am so pleased they are bringing in the team who make the machine and am sure the specialist will be able to adjust and re assure you, and you can get back on track.

You have and still do suffer so much, you need  to be able to get back to where you were when it was first fitted.

You hang in there and keep us posted.
BIG Hugs
Kate

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Moderator_Jen

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Reply with quote  #77 
Thanks Kate, I'll keep you updated.

I'm consider myself so lucky that the second opinion hospital are being so amazing and helpful. When you and the medical community are all fighting on the same side it's amazing what can be achieved.

I would be lost if my local IC consultant, Specialist Nurse, Pain Consultant and GP weren't so amazingly supportive and helpful. They are my life line and I'm truly blessed to have such amazing care from all of them. It was off them that helped me get a second opinion and encouraged me to fight and believe in myself, even when. London were saying it was all in my head and sent me off to the Psychogical pain service at the London hospital for assessment. My local medical team were really angry about that referral and all said it was an unnecessary referral.

I attended to assessment so I could shut the door on them using the psychological card against me. If I had refused to attend the assessment they would have used it against me and said I was in denial and "emotional instable" or say that I'm psychologically creating the problem.

The psychologist told me she was really confused why I had been referred and wrote a stern letter back saying that their and my time had been wasted for making an unnecessary referral. She said "I fail to understand why this lady has been referred to our service as it is very clear she has excellent coping strategies, a very positive and a realistic attitude and outlook regarding her mefical conditions, their symptoms and her pain levels. She is able to assess her own needs, both physically and emotionally in an effective and appropriate manner

I now have it writing they are barking up the wrong tree in the wrong forest if they try the psychological excuse again

Sadly, sometimes you have to play them at their own game......

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Moderator_Jen

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Reply with quote  #78 
Just came out of my appointment. My SNS is broken again. The lead is faulty and all 4 electrodes are not responding correctly.

I have to have the SNS replaced yet again but they have to apply for funding as they didn't do the original SNS and I'm refusing to see the specialist nurse from London ever again so goodness knows when all this will be sorted.

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Moderator_Jen

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Reply with quote  #79 
I had realised that I hadn't updated this in a while....

I couldn't get the CCG to fund my SNS repair at the hospital I wanted. We appealled to NHS Engkand and was told that funding was available but only at a centre of Excellence.

I had to battle and gather evidence to prove there was a fault with then SNS my old consultant refused to accept that the SNS was broken. Both myself and the consultant who is the leading authority and expert in fitting SNS in the UK had written to her with and provided all of the evidence that the SNS was broken and causing me harm, a report from all the tests Interstim ran themselves to check the functioning of the implant and this report detailed how badly damanaged my SNS was, plus an x-Ray showing lead displacement and other concerns, She still refused to listen and sent me an incredibly rude email to me about going behind her back and accused me of being a trouble maker. After that email she was added to the complaint being made about her as well as another member of staff within the SNS Team at the original hospital.

Given the concerns I have and the complaint I have made about the original hospital I refused to be treated by them and as part of my complaint resolution (which 9 months on is still unresolved!!) I was transferred to a different consultant and hospital that were still part of the same hospital group so my finding for repair etc was secured and could go ahead.

I saw my new consultant in Feb 2015. I will refer to him as Mr O from now on. He is extremely direct and says it as he sees it, which is an approach that not all people would appreciate or could gel with, for me he is the perfect fit. I'd rather have all the facts, know my options, the risks and the detailed outcomes of each option with out any sugarcoating or false promises.

Because the first hospital,screwed things up so much Mr O decided that the only option we had to ensure I was getting the correct treatment by sorting out the SNS and how/ if my bladder had deteriorated further was to repeat every diagonistic bladder test he felt necessary.

I wasn't happy about this and to Mr O's credit he listened to my concerns but stated he would be negligent if he didn't have the full picture and felt unable to treat me without the tests being redone so I had to agree.

Within 4 months all my tests were completed - including a VCMG & cystscopy, hydro distension, uretheral stretch and biopsies.

All the tests showed my bladder has gotten a lot worse and the damage to the SNS is extensive. I had two options:
Go back to the beginning and restart the complete SNS, including the trial statges
Consider radical surgery such as a new bladder, urostomy etc.

As the SNS had been such a brilliant treatments for me before it broke we decided that the SNS was my best option.

The waiting list was around 6 to 8 months but as my bladder has deteriorated so badly and I am retaining but can't ISC or tolerate an Indwelling catheter he moved me up,the list as an emergency and I am booked in for stage 1 on 24 Sept 2015. If all goes well then the permanent one will be fitted on 05 November 2015.

We are expecting difficulties during the surgeries due the mess the previous hospital,let me in but Mr O has assured me he will do everything in his power to get the SNS to be a successful treatment.

I have had to have a supra public catheter fitted this week as I am constantly going and out of retention and not emptying properly.

It's been a complete shock to fonsee the amount I am now draining as its about more than 3 times the amount I ever voided in a day - prior to the SPC being fitted I completed a fluid diary and looking at now it's very easy to see something was very wrong.

I still want the SNS - for me, it's been the best treatment ever in keeping my bladder function under control. I would still recommend and praise this treatment despite my problems. Please do not be put off by my story as it will have a positive outcome - I just haven't gotten that far yet - but I will!!!

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cathfirmin

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Reply with quote  #80 
Sorry long post but wanted to give you my story first as I want to ask my consultant about this treatment but as I don't have a proper diagnosis as such yet I don't know if it the right thing to do? Any thoughts much appreciated.

My symptoms started about a year ago, 4 ish weeks after I had a pregnancy terminated at 7 weeks pregnant. It was a medical termination which unfortunately didn't work (was still showing pregnant 11 weeks after!). Long story short I had the tissue removed via a hysteroscopy but the weeing symptoms have never gone away. Prior to the termination I had never so much as had a UTI my whole life (am 40). Just never had bladder issues before.

My symptoms are frequency (every 45 mins or so) and urgency (feels like I am busting each time I go). No pain (thankfully). I have had pelvic scans, all the OAB meds, physiotherapy, oestrogen cream/going back on the pill, various courses of short and long term low dose antibiotics, a cystoscopy (which showed a completely healthy bladder which could be filled to 800ml!), a course of cystistat and now am on iAuril instillations. Nothing has worked. Also tried homeopathy, acupuncture etc.

Due to how the symptoms started (abnormally thick womb lining due to pregnancy tissue for so long and abnormally high hormones), I am convinced there is a hormonal link. Also my symptoms seem to improve ever so slightly mid cycle, perhaps when I am ovulating? No idea what this means!!

I can hold it for up to 3 hours, just very uncomfortable and when I do go every time I only ever seem to wee about 100ml! Even when the instillation is put in (50ml) my bladder feels immediately full.

Also when I get in the bath or shower the feeling of the warmth/water makes me need to wee over and over. Is this a nerve issue??

Nerve, muscular or hormonal but am not convinced I actually have Painful Bladder syndrome (the consultant has put this as a question mark diagnosis at the moment clearly as he doesn't know what to think.

With no pain, a normal looking bladder, instillations targeting the bladder wall not doing anything leads me to think perhaps I don't have IC at all and its something affecting my bladder rather than my bladder itself. Am booked in for another cystoscopy on the 3rd Nov with distension. No idea what that will do.

Do you think this treatment might help with the frequency and being able to hold more again?? Thank you

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Moderator_Jen

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Reply with quote  #81 
I have to be honest and say I haven't got a clue. My SNS was fitted for frequency but also for retention - I could only void in small amounts and my bladder capacity was very small.

My suggestion would be to ask for a referral to a specialist hospital as it could be pudendal nerve related, which can resemble bladder conditions like IC but do not respond to bladder treatments and actual require treatment for nerve pain. I'm not in any suggesting you do have this, just that there are other conditions that mimics IC.

I really think you need specialist investigation. Considering your hormone issues maybe an opinion from a gynaecologist urologist might be helpful?

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Millie1charlie

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Reply with quote  #82 
Hi Jen. Ive been seeing a urologist in Cambridge but they've now referred me to London for the sacral nerve device. At the moment I have a urethral catheter because I constantly wet myself 24 hours if I don't. I've been diagnosed with OAB and a neuropathic bladder and have had 2 lots of Botox.

I have 2 questions - how long does it take from the first appointment to actually having the trial ? I'm concerned that my urology nurse said it could take about 4 yeRs and the thought of having a urethral catheter all that time is a pretty scary thought.

I am also concerned that this might not work as I have no feeling when my bladder is emptying. I've self catheterised and then wet inbetween.

Any information is very much appreciated. My appointment in London is in May, so I want to gain as much info as I can before this.

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Moderator_Jen

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Reply with quote  #83 
I'm not sure on waiting time - there are two London hospitals that do SNS so it depends which one you have been sent to.

I have been under both and both have fitted the SNS. The second hospital has been the far better hospital in terms of care and waiting times, and I am still under their care and very happy with it.

4 years is a very pessimistic view and I haven't heard of anybody waiting that long. It will depend what the consultant thinks and whether they feel SNS is the right way forward - the waiting list to see a consultant at either London hospital can be quite a wait.

The only proactive advice I can give at this stage is to find out what hospital and consultant you have been referred to and then call their secretary and ask if there are any cancellation appointments and let them know you are willing to take a short notice appointment.

I can remember being told it was a 6 month wait to see the consultant, so I called the secretary and managed to get a cancellation appointment that they were struggling to fill for two weeks later. The appointment was at 9am and a lot of people can't make the early appointments so they are cancelled. Luckily my husband took the day off work and although we had to leave at silly o clock in the morning we managed to get to the appointment at 9am.

If you want the names of the hospitals and the one I would personally recommend then please send me a message or email me. (please note that this would be my own personal view and the COB Foundation do not support or favour specific hospitals or consultants and do not allow the naming of either in open forums - hence the requirement to send me a message)

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Millie1charlie

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Reply with quote  #84 
Morning Jen
Thank you so much for replying. I do have an appointment on 18 May which isn't too far off now. They have put me on a cancellation list and they have contacted me but unfortunately it was only 2 hours notice. It would take up to 3 hours to get there.

I will email you with more details regarding the hospital and consultant.

Prior to you having the device inserted, were you having problems with incontinence? They say I've lost the connection between my brain and bladder and I am unsure how this device would stop me from constantly wetting. Pretty confused about everything really.

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Nic V
Moderator_Jen

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Reply with quote  #85 
Hiya

I have responded to your email and I'm very happy to offer you any support you need, In the email I've given you my mobile number if you ever want to talk.

I suffer from retention rather than incontinence. The SNS helps to send the correct signal from the bladder to the brain and this helps the bladder to function with some normality. It has been extremely effective for me and I really hope you find the same success too.


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Kiwi_Fairy

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Reply with quote  #86 
Hello ladies,
I've had my trial stage SNS fitted yesterday and was wondering if you had any tips on how to get comfortable to sleep. Thank you x
Moderator_Jen

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Reply with quote  #87 
It's a challenge when you are undergoing the trial. I found sleeping with a pillow belt when my legs and one against my back (to stop my husband accidentally banging the trial insertion site)

It will get better as you heal from the surgery and the stitches/staples are removed.

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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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Kiwi_Fairy

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Reply with quote  #88 
Thanks Jen
I invested in a body pillow to help support me in bed (there's not much support when you have a double bed to yourself!) and have slowly begun to sleep better as the swelling and bruising reduced.
Unfortunately the SNS didn't work for me (was trying it from a pain management point) so my external wires were cut off yesterday and I'm just awaiting a date for the rest of the wires to be removed x
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