INTERSTITIAL CYSTITIS AWARENESS MONTH: My SNS Journey

SNS.  The light at the end of the tunnel.  The treatment that made such a big improvement, even the NHS trust were impressed.

SNS stands for “sacral nerve stimulation”, but it is sometimes also known as SNM – “sacral nerve neuromodulation” – or the Interstim device.

It is a specific treatment for managing certain bladder and bowel conditions, specifically Interstitial Cystitis, but is quite hard to come by at many local hospitals.  You also have to have gone through a whole list of other treatments before you are even considered.

How Does it Work?

Think of the device almost like a pacemaker – it sends electrical signals to the nerves that control the bladder, to help them and ultimately help restore the normal function of the bladder.  It can be adjusted in intensity to allow for better effectiveness.

sns

What is it Used For?

Commonly, it is used to Interstitial Cystitis/Bladder Pain Syndrom, overactive bladder and some bowel incontinence conditions.

How Effective is it?

If you are the perfect candidate, then it can help significantly.  However, it can become less effective over time and in some people it does not work at all.  This is why there are two stages to it – the trial phase and the installation or permanent phase.

What Does it Feel Like?

Essentially, you shouldn’t feel anything.  At most it may be a bit of tingly in your anus or between your legs, but you’ll get used to that.

What’s the Process?

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Firstly, you’ll have had to go through a lot of other treatments before being considered for this invasive device.  It’s almost like a step ladder – you start with the basic and least-invasive methods and and work your way up overtime.  Not all patients with bladder or bowel conditions will be eligible for an SNS device regardless of this.

Secondly, you will be asked to complete a bladder diary over a set period of time.  This is then compared to one after you’ve had the trial phase, so they can evaluate how effective the device was for you.

The trial phase is the first part of the procedure.  It is performed under local anaesthetic, but in a sterile room a bit like an operating theatre.  You’ll be asked to lie on your front, and be injected with some dye to enable the surgeon to see your spinal column and bones via xray.  This allows them to guide the needle and wires a lot better.   The trial phase is uncomfortable – for me it felt like the surgeon was shoving a knitting needle in my back, but they were very caring and reassuring.   You’ll have the wires externally on your body and will be taped up so much to prevent it from coming loose.  The small box-device the wires are attached to will be held on your body in a removable belt.  During this phase (which may last from a few days to a few weeks), you will be unable to shower, lift/bend or do other physical activities to protect the wire from coming out.  During this trial phase, you will be asked to complete a bladder diary again.

Once the temporary wire is removed (which is done in an outpatient clinic – feels a bit weird but it was super quick), your bladder diary from before and after will be assessed.  I believe at the specialist hospital I am under, you have to have at least 50% improvement to be considered to have the device installed permanently, but this may vary from place to place.  You are then placed through a funding process.

The funding process can take any length of time.  NHS funding processes are in place to ensure that NHS money is being used in the right way, for the right purpose and the right people.  Unfortunately, funding is not guaranteed – I see it everyday at work where people are rejected for simple reasons despite clinical need, or even it becoming a bit of a postcode lottery – so you just have to tough it out!  The hospital will have to provide proof that you require the device and that you have tried all conservative methods possible.

The device costs between £25,000 – £30,000, and this explains why there is a very detailed funding process in place because it costs so much more than other general NHS procedures.  The device is available privately in some locations, but I am not lucky enough to afford that!

Once funding has been improved, you’ll be listed for the permanent device.  If it’s like the specialist hospital I am under, then surgery dates are few and far between, as my specialist surgeon is the only one trained to install the device, and he operates in his own time on weekends (although this depends on a full theatre staffing and nursing team being available too).  However, as not many people are listed or offered the SNS device, you don’t have to wait too long.  Personally, I have been offered two dates since I was listed in March – the first one was in June (which the surgeon turned down as I had only been off the gynaecology operating table 48 hours before!) and the second one was a week or so ago (which again was turned down by the surgeon as I was unwell with my cysts).

The permanent phase is often performed under local anaesthetic and sedation, although if this is intolerable then a general anaesthetic will be performed.  The surgeon will make an incision at the top of your bottom (where the device will sit), and the wire will be inserted permanently into your spine, where the nerve roots exit.  After the surgical part, you’ll be given plenty of pain relief and advise to rest – it is a big operation even though it may feel like small things are happening.  As with the trial phase, you’ll also be advised on what you can/can’t do for a period of time, although it will be longer than the trial phase.  You’ll also go for frequent checks to see if the device is working and if the settings need to be adjusted.

With both the trial and permanent devices, you have a small handheld remote to control the insensitivity of the device, as well as turn it off (e.g. intercourse or if you find out you’re pregnant).

What’s it’s Shelf-Life?

Most devices, particularly the Interstim device that I had, are run on batteries that last approximately 5 years.  This just means you will have to have a the permanent procedure almost done again every 5 years when they have to replace it.  The handheld devices will require more frequent battery changes, but these are simple household ones.

I have I.C.!  How Do I Go About Getting it Done?

As mentioned above, you can only get this done via two routes;

  1. NHS – you’ll often need to be referred to a specialist urology center with a surgeon who is qualified to perform the procedure.  You’ll then have to undergo various checks, funding etc.
  2. Private – again, you’ll have to do your research and see a urologist who is qualified in SNS surgery.  If they think you are suitable, then you’ll be able to go ahead with it.  However, as far as I am aware you will still have to undergo the trial phase.  It is vital you do your research and ask as many questions as you need before committing a large sum of money.

Endo Bunny – What Was it Like for You?

Personally, the device was a miracle.  Before being referred to the specialist centre, I was under a more local hospital and had been at another one before that.  I’d gone through different types of bladder installations, mutilpe indwelling catheters, performed self-catheterisation and tried concoction after concoction of oral medication.  None of which worked, or if they did it was for long.

When my I.C. was at its worst, I was having urine infections almost every week, and they’d often develop into nasty kidney infections that would cause doctors to debate hospitalizing me.   I think at one point I was going to the toilet 50 + times a day, and up around 6-7 times at night – I wasn’t sleeping, I struggled to go out anywhere and work was a nightmare.  I was also struggling to eat or drink anything that wasn’t super plain or water, because if I did I would spend hours experiencing UTI-type symptoms (frequency, urgency, burning etc).  The pain in my bladder was so bad I could never ever hold it if I needed to go.

But after the trial phase, my bladder diary documented that my frequnecy dropped to less than 10 and I was no longer having to get up in the night to go.  The pain had lessened too, although the SNS device is not specifically for pain relief.

It did have some after effect for around 6 weeks or so, but then things quickly became back to how they were.  I am currently waiting for another date, hopefully this year, to have it installed permanently.

What Now?

If you are going through the process of getting the SNS done, on the waiting list or just want more information, please feel free to get in touch via my contact page.

 

3 thoughts on “INTERSTITIAL CYSTITIS AWARENESS MONTH: My SNS Journey

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