Interstim

[kalecolbe12]

Hi all forgot to ask ..also.has anyone had an interstim implanted that helped ?

[Alaine1 Administrator]

Hi Kalevolbe12,

I tried the interstim twice for refractory interstitial cystitis and had no benefit either for pain or frequent urinination. However I have spoken to many people both in person and also online and they have got good results with it. No one knows why I didn’t respond but I was warned it was unlikely to be successful by the consultant as my symptoms are just too severe. They also weren’t sure if the fact that I have endometriosis and adenomyosis also played a part. I would definitely give it a go as until you try you simply don’t know if it will take away your symptoms completely or if it will help 50% which will mean less pain and pain medications. I really hope it works for you. Please let us know how you get on

[kalecolbe12 in reply to Alaine1]

I am just checking options at the moment ...have pfd and muscle relaxers and pt is working ok but I want a back up plan...probably try Botox first for my condition....may I ask what treatments you are using for your IC?

[Alaine1 Administrator in reply to kalecolbe12]

Hi,

I’ve tried all available treatments including Botox, bladder instillations, elmiron, others, physio etc. I’m now on immunosuppressants but they think I’m one of the very unlucky few that has an immune mediated type of IC. They’ve done clinical trials with IC patients and very very few responded to treatment with most trials showing no benefits. Most doctors won’t use these as the potential dangers of immunosuppressants including kidney failure, cancers so I have to have a full body check twice a year due to increased risk of skin cancer plus I’ve got two moles they are keeping a close eye on, other cancers, infections which need to be treated quickly etc. These drugs aren’t good to be on but I’m benefiting. My only other option was bladder removal and reconstruction which would be a 9 hour surgery. It’s still potentially on the cards especially if I have to stop the immunosuppressant medication. Again this surgery is only considered and carried out in extreme circumstances it’s not something patients can request.

I would definitely continue with the physiotherapy and concentrate on that first. Then if you need to start researching other options rather than looking into other treatments that you might not need especially as the more aggressive the treatment the bigger the risk of side effects that might not go away or be reversible. I really do hope the physiotherapy works for you. It did help a lot when I did it for my PFD as a result of the endometriosis and adenomyosis pain.

[pieper in reply to Alaine1]

hello, may i ask online where did you speak with these people? on what forum? as i am trying to get an implant....thanks

[Alaine1 Administrator in reply to pieper]

It was on the bladder and bowel forum. In the U.K. you have to meet certain criteria to get one as the funding for the device is slightly different to normal NHS funding, plus its approximately £10,000 for the device. You would need to already be under a urologist who would refer you on to a tertiary centre if you aren’t already under one as only tertiary centres can fit them. Your GP would not be able to refer you for this. The forum I accessed through their website bladderandbowel.org/bladder...

I was already under two urologists who recommended we try the implant but it was unlikely to work. I had already read up on it beforehand so was fully prepared for the surgery

[Rxmom]

I had scs implanted nov 2018 and it has helped significantly. Lessens the pain - for me about 60-70%. Im still limited - sitting is major issue & I get flares. But glad I did it.

[Chica1943]

The more current device is called the wireless stimwave. It’s being discussed among members in PN groups on fb. One woman had her second and it was successful. My Dr is asking me to do a trial. I’m willing to because it’s a benign procedure as compared to many others.

[Alaine1 Administrator in reply to Chica1943]

I don’t think the nhs will find the wireless one but the remote control used anyway has no wires to the device when it’s finished

[Chica1943 in reply to Alaine1]

Sounds very similar. Only one wire along specific area of spine and then remote can be held in your hand. What is the company name who makes one you’re talking about and does the model have a specific name ?

[Alaine1 Administrator in reply to Chica1943]

It’s a Medtronic device

[Empowered-patient]

Bladder removal for chronic pain - doesn’t work (where is the evidence) and will cause more problems. Spinal cord stimulation is worth a try.

[Alaine1 Administrator in reply to Empowered-patient]

I had already done that twice and it failed completely, plus I have studied all the evidence including talking to those that have had it done. It’s not done purely for pain relief but also relief from going to the toilet more that 20+ timed during the night and more throughout the night. Current reports do support it for carefully chosen patients, I also carried out a literature review on medical journals from the last 5 years. Bladder removal would never be done just for pain relief. I have severe and refractory to treatment interstitial cystitis which isn’t just a pain syndrome, just like endometriosis and adenomyosis aren’t just pain syndromes.

[Empowered-patient]

Let us all know if you made the right decision. Best of luck.