Still Severe Spasms Post SPC op

Primary progressive MS
1

Hi all, again, sorry this horrid topic again. I’m still having crippling spasms, since the SPC op. on 2nd Feb. District nurse did a first catheter change last Thursday and it was very painful, I shouted out but didn’t actually scream. She kept saying “just relax, it’ll be done soon” it was actually only minutes but felt like an hour! After the lidocaine gel wore off, I couldn’t move without a spasm. It felt like something large is in my urethra.

I’m struggling with this as I already manage Neuro pain but this is something else! So in the middle of last night, I realised Buscopan (2 x 4 each day) I’ve been prescribed by a nurse for bladder spasms is actually for the bowel! For 3 days, I’ve had painful diahorrea, very sore bum, and totally peed off living in my bathroom!

Seeing a Urologist tomorrow, any suggestions apart from murder!

Chrissie x

2

Oh Chrissy how awful …I really feel for you. I found having botox injections both agonizing and embarrassing. Afterwards I felt so ill. The burning was awful and then having to self catherize. I hope you get some relief from the spasms. Have they said why it was painful and how long it will last ? Did it settle down last time ? I hope you feel better soon. Love and hugs Michelle and Frazer xx

3

Hi Chrissy,

It’s really awful having those painful spasms and they can make you feel so low. I have an SPC and take Tolteridine for the spasms. I take one in the morning and as it’s a slow realise drug it lasts the day. Mind you, they don’t take the spasms away completely as I still get the odd one here and there. Hopefully the urologist will suggest something for you.

All the best. Jane XX

4

RANT

Are you sitting comfortably?

I’ve been on the loo or waahing my hands & nether bits all frigate-in afternoon. I was asleep until noon, from a very disturbed night, getting to sleep by 6 ish a.m.

Tuesday I woke at noon but got prepared as best as poss with a bit of a break at 4pm -to 6pm then 10th visit to loo again! I’m in bits at the mess & excruciating spasms.

I understand pain, had lots of it since 1979, docs thought it sciatica then. I’ve given birth twice, naturally and not one scream! So I know I can tolerate pain. Except Neuro/nerve pain.

I refuse to allow Mr C to help my personal hygiene. He barely stops fetching & carrying for me. Mr C preps & cooks all meals, shops, walks our Spaniel 3 times each day, This a.m he went to the pharmacy for his own meds and then had to return at 6.15p.m for my new Vesicare script (bladder tab to replace incorrect script of Buscopan). I made calls for more SPC equipment. It’s hard for me to balance, find the SPC site below belly button, (lifting excess belly and trying to see past the matronly bra. Constant washing hands to scrupulous hygiene. Then change clothes, attempt to leave the bathroom, only to quickly return to the loo, gently clean a raw bum & wash my hands yet again.

Too many docs & nurses, surgery, hospital & district all have differing opinions of what has gone well, why I’m still in this state of bladder spasms & excruciating pain, way beyond the discomfort the professionals describe as normal!

I don’t usually doubt our wonderful NHS but I’m beginning to think they don’t have time to listen & giving quick answers . I speak relatively clearly & articulate, but this seems to give the listener the impression I’m totally fab at cognition & fully comprehend their dismissive outlook! I am far from that, I can’t concentrate, I forget any explanation unless it’s in very lengthy, explanatory terms. No-one ever asks if I’ve understood their quick answers or reiterates the main points.

Since the SPC, it really feels as if I have a large painful lump in my narrow urethra, yet I bypass urune every day as well as well as using the collection bag.

My life has changed dramatically since the op. I’ve been almost housebound since Feb. I’m starting to wish I hadn’t had the SPC, just continued with peeing myself using Always Incontinence Pants.

I feel useless & no asset in my relationship with Mr C. I don’t & can’t do much at all and if the only response by the specialiss is “this can happen”, “to be expected” or “it’s part of the risks, not always successful for some people”.

Mr C is climbing the walls with frustration that he can’t fix this. He is relying on Consultants "being paid a fortune, wearing Hugo Boss suits to pass the buck in a 30 minute assessment, seemingly unconcerned in fixing my problem. Mr C used to be an engineer who sorted urgent repairs to customers & businesses, stamping their feet because their electral appliance from T.V to Satellite was faulty. They couldn’t use the equipment which they relied on. Mr C fixed the problem quickly and all was well. He doesn’t understand how the SPC was intended to ease incontinence, when it appears to him that I’m far worse post op. Physical problems have kept me indoors for months, in great pain that seems to get worse, me clutching my stomach & yelling at the immense Neuro pain.

I’ve had enough and think the Urologist will be told, in no uncertain terms, of my problems, concerns and being fobbed off.

I’m SO sorry for writing so much, when there are so many with similar or worse symptoms & pain. I just had to get all this off my chest before I see the Urologist at 10.15. Patient transport could arrive at 8.30 so I’d better go to bed & try to sleep 6 hours.

Lots of love to you if you’ve managed to read until the end. Not looking for sympathy, just letting off steam.

Chrissie xx

5

Hi Chrissie,i am so sorry you are going through all this pain, you must be so fed up of it all,i do hope you get some answers today.

J x

6

Aw Chrissie,

You have had the worst of all times with that f’ing SPC. We’ve communicated about it several times so I do understand what a flipping nightmare time you’ve had with it.

I really hope the urologist has had something useful to suggest.

I don’t think it’s reasonable to continue the way you’ve been.

And it is a major problem when the doctors don’t realise you have cognitive difficulties because you speak coherently and appear to them to be 100% compos mentis. When in fact sometimes you come out of the appointment, saying, ‘what just got said?’ And feeling like you’re more compost mental.

Let us know what’s happened this morning.

Sue x

7

Thanks Mrs J x.

Sue, I owe you so much appreciation for your words of wisdom, I know you went through very similar. Compost mental is a fab description, I feel like a Compost Heap at times haha.

My daughter H, came to my hosp.appt. She’s a nurse, knows her stuff & how to get things done.

I saw the Consultant who listened to my daughter & myself, H was professional and spoke very direct, I spoke of my disappointment & H discussed the problems. Then I had a spasm, gripping the arms of my powerchair, trying to breathe through the pain until it was over. H was pleased the doc saw it happen. He agreed to refer me for Botox first & will consider removing the SPC after seeing if Botox does the trick.

So he’s writing to another Urology consultant, Mrs Payne, who recommended the SPC, to see me for Botox treatment which she specialises in. H jumped in & said it “this all takes time & mum has suffered too many wait & see months already. My Dad and I want assurance of an urgent appt” She also told him she needs to see me, her own bubbly positive mum, back to living life, not loathing it.

When at home, H rang Mrs Paynes Secretary and explained the urgency to try to obtain a better quality of life.

All just SO frustrating but maybe a chance of an instant fix eh?

8

Hi

I do hope the Botox happens very soon (hmm, NHS + soon = at some point!) and that it does the job. Many people find that Botox really does the job for them.

I had Botox on my bladder (in my case a complete waste of time, energy and NHS resources as I wasn’t having spasms!). It wasn’t a pleasant experience, but not the worst. You have to be prepared that it won’t work immediately, it usually takes a couple of weeks to kick in.

You might also find that the Vesicare helps too.

I hope something gets sorted. It’s a sod, when you wait expectantly for the SPC, thinking it’ll resolve the problems, and then you have a horrible experience with the catheter actually making your spasms worse.

I’m still waiting for a date for the Mitroffanoff. Which I’ve decided I will definitely do after the cruise we’ve booked for June. So later in the summer. And that’ll temporarily put me back in the delights of the SPC club too while the Mitroffanoff heals.

So we’ll keep on trying all the different procedures and hoping that something eventually works and we stop having a miserable time with our bladders. We’ll not mention bloody bowels just now!!

Your daughter H sounds brilliant. I don’t suppose she’s available on loan? I could pay in Ffs.

Sue

9

Oh Chrissy I feel awful for you . It sounds like they’ve made thing worse for . I wish I had good advice. It’s rotton being poorly and putting your trust in the nhs and then you end up in this mess. I’m glad that your daughter stuck up for you. I’m beginning to hate doctors surgery and hospitals . I’ve been in a mess this week with trigmal neuritus probably not spelt right . I thought it was an ear infection, it was so bad last night I went to out of hours. Isn’t life fun. Sending a hug . Michelle and Frazer xx

10

Hi Chrissie sorry to hear that you are having such a miserable time. I do hope that you get seen quickly and that the botox helps. Take care. Sue x

11

Hi Chrissie

Im also fitted with an SPC and I have to say it works well for me. I occasionally get spasms and bypass but not to the extent that you have to suffer with. I really can’t imagine living in your shoes. What a miserable existence for you. I really hope they can fix you with whatever means and that they don’t leave you waiting for much longer. You really have suffered enough.

Thinking of you. Jane X