Medical investigations

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Fiz

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Re: Medical investigations

  • on: 26 Aug 2019 09:13AM
My pain levels are okay. I'm completely off Amitriptyline now which I was taking for neuropathic pain. My wound had fully healed when the staples were removed on day 12.

Before the operation my symptoms were night time urinary incontinence usually twice a week, falls about the same number and constant neuropathic pain meaning every movement was like an electric shock through my body. When you consider that there was a tumour pushing my spinal cord to a third of its space that explains the pain. The neuropathic pain had gone when I woke from the anaesthetic and I've not had any since. I have had a fall, again when changing direction.

The MRI showed a kink in my spinal cord which often means the symptoms that are pre op do not all heal though you have to give it the year healing time to be used.

But since the op the night time urinary incontinence has got worse and worse. Now every night I wake automatically at midnight and 3 am to change my "super" tena pants and wash myself and same in the morning. I sleep very little now. During the daytime things have got steadily worse, it seems the message from bladder to brain is okay but the message from brain to sphincter isn't working, or rarely works. If I manage anything it's a trickle, nowhere near emptying the bladder. I suspect that's why my nights are so wet. I can't go out.

I referred myself to the incontinence service the day after I came out of hospital. Last week I phoned to see where I am on the waiting list for assessment to discover I'm not on the waiting list at all. It was definitely the same woman I spoke to too. I only hope she has actually got me on the waiting list now. The waiting list is around ten weeks then the assessment is a month where you'll have investigations and trials before the nurse decides what you need. I should at that point be able to get tena products free. At the moment I am spending way more than my PIP on care and tena wear, bags and wipes and have been buying food with a credit card. I'm just in the process of applying for DHP for the shortfall in rent so that I can attempt to reduce my debt.

The spine tumour clinical nurse specialist has stopped saying the spinal cord continues to heal for up to 12 months since my symptoms have got so much worse post op. Instead she talks about managing incontinence. Self catherterising on the loo before bed may mean with a completely empty ladder that I could sleep through the night for example though that's not happening anytime soon.

She thinks the lack of sleep is contributing hugely to this reactive depression. I have at times felt "unsafe" but no one helps with reactive depression. The DFG work to change my bathroom to an assisted shower has been going on a week so far and should end at the end of this week. The council had told me it would take four days! So I have a toilet upstairs in its own little cupboard and I have the kitchen sink as my facilities for 2 weeks, in a heatwave with incontinence and I feel so low I am desperate. Yesterday I lay with my head over the garden kitchen drain and the hose pipe and washed my hair with the garden hose. The water was nowhere near as cold as I had expected and it was worth it to have clean hair but my lumbar pain has been bad since. I wasn't brave enough to shower with the hose but I will try today.

My ongoing back problems are the prolapsed disc and degenerative disc disease in my lumbar region plus two further prolapsed discs in my thoracic region discovered in the recent scans plus I have 30%/30% scoliosis in my lumbar region also discovered on scans though the orthopaedic physio picked it up when doing tests before sending me for scans. So I will always have back pain but it's nothing like the unbearable neuropathic pain I had constantly before.

I'm back to looking after my back pain as I did before the tumour. Because I get pain following certain actions so I avoid those things and rest till the pain eases if the pain is set off. Weird to go back to the lumbar pain after so long.

I'm very depressed as much as I ever get and yet this time there are reasons for it so there's no help available. Or the incontinence service if I eventually get seen and assessed.

Sorry I'm so maudlin. Feeling naff emotionally. I'm hating having the workmen around, not being able to wash (bar baby wipes) and not seeing anyone because I can't go out..

My eldest son, partner and my grandaughters are coming today. I should be excited but I am exhausted and tearful.

Sunny Clouds

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Re: Medical investigations

  • on: 26 Aug 2019 12:40PM
Fiz - reading what you've written, my heart goes out to you.  I think of what a hassle I found it before my far milder daytime urinary problems (sudden need to go) and heavy periods for many years (2-3 towels a night) and then thinking neither, for all my mental whingeing, was a touch on what you're going through incontinence-wise.  That's not false, they genuinely weren't in the same league.

I can really relate to the cost thing because my father ended up using full-thickness Tena pants when he had dementia and it cost a lot.  I was disgusted at what the local NHS offered, or rather didn't offer him.  Likewise a friend of mine.  In her case, she had some savings and a son to go shopping for her.  But it's a scandal.

In all seriousness, if you'd be up to washing them, consider washable incontinence pads with waterproof outsides, i.e. the grown-up (and more discreet) version of old-fashioned washable nappies.  Someone here gave me a link to them just before my incontinence was fixed, when I commented on how I was tempted to make something, thinking back to my days using washable sanitary (menstrual) towels with a Dr White's sanny belt.  (Yes, I'm that old!) It might be that even if they weren't adequate all the time, they'd be good for part of the day.

Of course, you may have considered that and dismissed it as unsuitable, but you know me, I see someone in distress and desperately try to think of something to make them feel a bit better.

Gosh, Fiz, given how you and I have argued in the past, how bad must your situation be that I feel I want to be able to hug you, to make you feel better?

 >bighugs<  >bighugs<  >bighugs<
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ally

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Re: Medical investigations

  • on: 26 Aug 2019 12:58PM
Amitriptyline relaxes  the bladder.  Itís the drug thatís mostly used for urge incontinence.  Therefore, Iím surprised you came off it.  Was it your decision, or, the hospital?   If youíve come off it completely, and, have been on it a while.  That could be why your bladder problems are worsening. Itís also an anti depressant, so, could contribute to the depression youíre going through It also also helps you sleep.  So, again, coming off the drug could be another factor as to why youíre having sleep issues. Plus,many suffer from withdrawal symptoms  coming off the drug.   Most spinal operations, can cause bladder, and, bowel problems.  Iíve been left with water  retention since my spinal ops.  Thatís why I have frequent UTI.  They may put you back on amitriptyline if they think itíll help.  Iíve been on it for years.

Itíll take a while before you feel improvement from any spinal operations.  Donít  rush it.  I think you should have someone to look in on you to make sure youíre ok.  Pain gets to you eventually, thatís why youíre feeling so tearful.   All operations are an ordeal for the body to cope with.  I hope things improve, and, you can use your new wet room soon. Take care  >hugs<

Fiz

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Re: Medical investigations

  • on: 30 Aug 2019 08:27PM
There are 7 types of urinary incontinence and I don't have urge incontinence. Yes I'm off Amitriptyline under doctor's care and guidelines. My problem is the message from my brain isn't getting to the sphincter to tell it to open because my spinal cord is damaged. Sometimes this happens after spinal surgery and it's temporary but as I was okay following surgery for a while and it's got increasingly worse it may be a more permanent thing for me to be managed but I'm told not to give up home of improvement or even recovery.

I was only on a neuropathic dose of Amitriptyline, 30mg to begin with then 20mg and that wouldn't have an influence on mood or sleep with me. When I took it as an antidepressant my dose was 225mg and my sleep was variable even then. I had no withdrawal affects coming off this very small dose.

Unable to cope and tearful I phoned adult services and for 2 days I've had a carer from the reablement team come and help me wash in the lounge with a bowl of water. That has helped me feel a bit better. They only come for around 2 weeks as it's an assessment service for them to see whether you need ongoing care. I would think I will manage once the shower room is working but I am permanently exhausted and today I couldn't wait for the workmen to go until I could finally unleash the tears. I am struggling massively will low mood and exhaustion.

Sunny thank you so much for what you wrote  >hugs<

My GP said that she felt I needed the support of the acute mental health team and said she would phone them but I plucked up courage to phone them today and there's no record of a referral from my GP. Normally I hate AMHT input but I could really do with some support at the moment. Never mind. So nothing has really changed. Oh the first company came to measure up and quote for the stair lift today. Although it will be nice to get downstairs without pain or falling on them like I did last week a part of me wishes workmen would just vanish. Oh and I'm having telecare installed because of my falls. Physically I am getting well supported now though I'm thinking of taking myself to the hospital to be taught to self catheterise so I can empty my full bladder so it doesn't hurt all day or at worst, burst. I can't wait 3 months for an incontinence assessment with that risk.

Thanks Ally.

Fiz

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Re: Medical investigations

  • on: 31 Aug 2019 04:46AM
Not to give up HOPE not home lol. I think that's my funniest typo yet.

KizzyKazaer

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Re: Medical investigations

  • on: 31 Aug 2019 11:43AM
 >biggrin< At least you're keeping a sense of humour, Fiz!

Quote
I'm thinking of taking myself to the hospital to be taught to self catheterise so I can empty my full bladder so it doesn't hurt all day or at worst, burst.

Please do just that - anything to give you more comfort and confidence. A burst bladder doesn't bear thinking about...