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Forum => Talk => Topic started by: Fiz on 07 May 2019 06:49AM

Title: Medical investigations
Post by: Fiz on 07 May 2019 06:49AM
I'm due to see the Spine Consultant on 17th because of my worsening symptoms, falls and enuresis so we'll see what is said there.

I'm also likely to have investigations to whether I have sleep apnoea which I'm dreading as I have to go and sleep elsewhere and be observed. I know my weight gain has piled on since my ability to mobilise has dropped because of pain. I need to try and lose some somehow but I have been trying so hard. Once my garden is paid for I thought I might trial Mindful Chef because all their dishes are gluten free, low carb and calorie controlled but it'll be the summer before I can even try it. I'm so fed up with my back it's causing so many other problems that feel insurmountable! 
Title: Re: Medical investigations
Post by: KizzyKazaer on 07 May 2019 12:30PM
Oh, Fiz, it seems like just one thing after another for you - I do hope whatever the spine consultant finds is treatable.  As for trying to lose weight, seems to be a minefield out there with different 'experts' promoting or decrying this or that diet  >erm<   Not heard of Mindful Chef before, but no harm in giving them a go if it makes the job easier for you..
Title: Re: Medical investigations
Post by: huhn on 07 May 2019 01:31PM
about the gluten free meals I have I point against when you do not need them, people with cerelac disease  have to eat much more calories and the food is far to easy to digest and you eat much more then you need.
Title: Re: Medical investigations
Post by: Fiz on 08 May 2019 09:14AM
If I've understood you correctly you're saying I should avoid eating gluten free if I'm not coeliac? I'm not coeliac but if I eat more than small amounts I get horrendously painful IBS symptoms that can last 3 or 4 days hence avoiding gluten when possible. I've not been eating refined sugar or complex carbs for a long time but due to lack of movement I require very few calories to survive and not gain weight.

My GP is hoping that I will be offered physio which will build up other muscles to lessen the work around my damaged spine and in turn would mean I can do more physically which would help with the weight issue. I'm up for anything. It's an area my GP Is quite knowledgeable about herself so we'll see. I'm hoping for another MRI to see if it shows what is causing the worsening symptoms but my GP doubts he will order another MRI. Too eager to be fixed, me. Instead I need to learn coping skills.

I've been struggling the last few weeks. Too many paramedics know me. When they come in they say "hello Tizzie" and cwtch my dog and they know where all my meds are kept in the kitchen. Yesterday I had a panic attack when I knew a lone male was coming so I phoned back and explained about my PTSD and they switched responders so I saw a male and a student female which is fine. My PTSD with fears of men and triggers is now logged on their system. I was overwhelmed with how understanding both control and the paramedics were about it. We do have an amazing NHS.
Title: Re: Medical investigations
Post by: huhn on 08 May 2019 11:39AM
Than it is ok, but  who is health is better not to do this diet, it is  so much missing, a other tip is, old types of wheat like emmer is for you no problem, that has much less gluten then the modern sorts and are often without problem for people like you.
Title: Re: Medical investigations
Post by: Sunny Clouds on 08 May 2019 02:50PM
Doesn't it depend a lot on what sort of gluten-free diet you follow?

Let me explain what I mean by giving just two contrasting examples.

Years ago, I followed a gluten free diet as part of an exclusion diet. I also had various hospital tests and investigations. 
 
Living in a multicultural British city, it was easy for me to buy non-wheat flours such as gram (chickpea), maizemeal, rice flour etc.  I made my own soda bread, chapattis and pastry, usually with a mixture of flours.

On the other hand, if you go to supermarkets these days, you often find a section with a range of ready-made foods for special diets, including gluten free, wheat-free etc.  These products are often very expensive and, just as low-fat foods often have lots of sugar added to make them palatable, so a lot of these gluten free foods are less than ideal.

But that doesn't mean that none of them are worth eating if your local supermarket has a good range so you can be picky. 

So I'm not knocking Huhn's concerns as to what you eat instead, just saying there's a range of options depending on where you live and you may be able to be picky, especially as this isn't coeliac, so you don't have to worry about tiny amounts of gluten and can buy other grains that are gluten free but might have been processed in the same factory as a gluten-bearing grain.

I don't know about Mindful Chef products, but they're a starting point, aren't they?

Meanwhile, thank you for the prompt you didn't know you'd made to me - last year I lost lots of weight and now I'm putting it back on.  Comfort eating carbs is my problem and I need every little prompt and push as I start tackling it again.

Good luck on the diet.
Title: Re: Medical investigations
Post by: huhn on 08 May 2019 03:02PM
Ok, thats  fine, i have it more difficult, i need to watch out for every cross contamination for my 2 boys.
 i get from hospital gluten free flour , and do from it bread, cake , pasta , pizza. beside we use only rice and some potatoes, otherwise we  have a lot of fruit and veggies and meat. i do also make my own liver pate and sausages. the ready made products are  financially out of reach for me. i found old cooking books more helpful than special for the diet designed ones. in the old ones you get a lot of ideas how to change products and they are more based on  the simple food products and no need of special products.
Title: Re: Medical investigations
Post by: Sunny Clouds on 08 May 2019 03:49PM
I find it interesting, Huhn, that you commented on modern wheat having more gluten than older wheat.  I use that from time to time as an example of how foods have changed and are still changing, as growers and manufacturers cross-breed.

We can so very easily think that it's only laboratory genetically-modified foods that change, not natural variations and plants naturally cross-bred in the field and then selected for propagation.

It also affects lots of fruit and veg where they select the varieties that can withstand travelling long distances and being on display a long time.

That doesn't mean it's wrong if foods last.  When I was a child, we used to pick the apples in our garden, put them in papier-mache trays and store them in the cellar, where they lasted all winter.

Sorry, I'm telling myself as much as the rest of you.  A reminder to go back to basics and eat healthily. 

So that's another reason to offer hugs.

 >bighugs<  >bighugs<  >bighugs<
Title: Re: Medical investigations
Post by: huhn on 08 May 2019 07:23PM
yes you are right, I have a problem with apples, the old sorts are fine but any normal apple  from the super market brings a terrible allergy. I am lucky that I can get fruit from the local farmers, the  fruit what the are  not able to sell and here they keep a lot of the old fruit trees for private consumption
Title: Re: Medical investigations
Post by: Fiz on 19 May 2019 07:58AM
I saw a much higher up the tree consultant on Friday (OMG he was so dishy I'm never getting better!) and he wants me to have a whole spine MRI from neck to tail. My spine is curved. Over 50% of the people he sees have a slight curvature of the spine but mine is on the severe side of the slight curvatures he sees. It's not possible to know whether the curve was caused by the C5/S1 DDD damage or was the cause of the new symptoms. The curvature might explain why my pain is much greater on my left side and my left side is more affected by disability. The x-ray I had in 2001 diagnosing the DDD didn't show or get noticed as a curvature so my thinking is the DDD has caused it over time since then, damaging nerves.. The MRI should be in about 2 weeks and I'll see the consultant again.

I had to do movements for him until they were too painful and I had to stop. I could barely get to the car afterwards and took morphine and lay down once home until it worked. I'd forgotten the repercussions of doing things!

I have a small card about caudal equina syndrome telling me that if I have any bowel incontinence or daytime incontinence of either kind or numbness or tingling in my saddle area then I need to go immediately to an A&E showing them the card he gave me at A&E reception. I've been stable symptom wise for a couple of of months so I'm not worried but I'm pleased he wants an MRI as symptoms have appeared since 2017 when I had my last one.
Title: Re: Medical investigations
Post by: Fiz on 27 Jun 2019 03:58PM
Hi everyone, I was discharged this morning after 23 days in a acute mental health unit and am very glad to be back home and have wifi again. After the first week I went to a lumbar spine MRI pre arranged by the above specialist and then was called back for a thoracic spine MRI yesterday following which due to an area of concern to the Consultant radiographer they injected contrast dye into a vein and repeated the MRI on one thoracic section. All they would tell me is that I should bring my follow up appointment forward to as soon as possible. The earliest appointment he has is 12th of July which is too far away. I have an appointment from the imaging suite for a CT scan tomorrow. It's obviously not something minor so I telephoned my GP who has details of all the MRI scans on her screen and I have a spinal meningeoma tumour. I have already been referred to the neurosurgical team in the city who will discuss the options of surgery, radiation therapy or chemotherapy so by the time they see me they will have my options before me. I feel better knowing than not knowing to be honest. One day at a time. At least I know why my back hurts! And on the plus side, that's another thing to put on DWP forms!
Title: Re: Medical investigations
Post by: huhn on 27 Jun 2019 04:13PM
 >hugs<  >hugs<  >hugs<  >hugs<  >hugs<  >hugs<
Title: Re: Medical investigations
Post by: Monic1511 on 27 Jun 2019 07:54PM
Hope your feeling better  >bighugs<
Title: Re: Medical investigations
Post by: KizzyKazaer on 27 Jun 2019 09:20PM
I must say you're being remarkably positive about all this, Fiz - but see your point entirely about knowing rather than not knowing (or - equally as bad - having pain dismissed by the experts when it doesn't match the items on their tick lists, if you know what I mean).  One of the downsides is, of course, having more tedious but necessary hospital trips, so  >x-fingers<  that these go as smoothly as possible for you...

Title: Re: Medical investigations
Post by: Sunshine Meadows on 28 Jun 2019 09:19AM
>bighugs<
Title: Re: Medical investigations
Post by: ally on 28 Jun 2019 09:40AM
 Hope everything goes well for you.  Take care  >bighugs<
Title: Re: Medical investigations
Post by: JLR2 on 01 Jul 2019 05:27AM
 >bighugs< 
Title: Re: Medical investigations
Post by: Fiz on 01 Jul 2019 07:19AM
I'm feeling so calm about this and am not at all bothered, just would like it over with so I can start healing and recuperating. There'll be a period of time that I won't be able to drive so I will be stuck at home again. I need to ask questions such as the length of the hospital stay, then recovery time including how long until it's okay to drive again. I know insurance says 6 weeks following abdominal surgery, so I need to check if they have any set length of time for spinal surgery or is it doctor's advice only. I'm going to Wales this weekend to watch the airshow, something that has been booked since last year so I don't want this weekend disrupted!
Title: Re: Medical investigations
Post by: ally on 01 Jul 2019 09:12AM
If it's just for the spinal surgery recuperation, then, that'll be about 6 weeks too.  It'll take as long as it takes. With the first spinal operation I had, I developed an infection.  However, I was fine with the others. You wont be able to drive until it's safe to do so.  With any spinal surgery, certain movements is painful. I certainly couldn't do much afterwards. It also depends on what the surgery involves. The first two operations were a lot more painful, as I had some of the bone removed from my spine.  I'd certainly get as much information as I could about what's involved.  Once out of hospital you may need someone to be there for you for a few days at least.   >hugs<
Title: Re: Medical investigations
Post by: Fiz on 01 Jul 2019 08:44PM
The operation involves cutting the dura membrane that surrounds the spinal cord and brain and cutting out the tumour that has attached itself to the inside of the dura and then repairing the opening to the dura. I don't know if they need to move any bone to get to where the tumour is. They did say it is larger and longer than expected. If they don't have to do anything with the bones of my spine that will be a quicker recovery. My daughter nursed a child who had a tumour removed from the spine, where in the spine she didn't say, but he had shooting nerve pains travelling down his legs for weeks afterwards and required physio etc to gain the ability to walk again. I'm sure I won't be as incapacitated as that though. If the worst comes to the worst the dog sitter can keep my dog longer (she's offered as long as needed) and maybe my previous unofficial foster parents who took me in as a teen will allow me to stay with them for a while. They have a bungalow with a spare bedroom. I don't feel brave enough to ask though, I'm hoping they might offer.
Title: Re: Medical investigations
Post by: KizzyKazaer on 01 Jul 2019 09:18PM
Well, if these people were kind enough to provide your younger self with a safe home when you needed it, I would think they'd love to help you now in any way they can!

 
Title: Re: Medical investigations
Post by: ally on 01 Jul 2019 10:03PM
I could,be very wrong.  However, if itís the dura membrane, then, perhaps removal of bone wonít be necessary.  It all depends on what the tumour has attached itself to. I didnít have a tumour.  However, Iíve been left with ongoing pain down both my legs. I have FBS, which is why I have a SCS implant.
Hopefully, you may not experience that.  You really will need someone to care for you when you come out of hospital.  They wonít allow you home until thatís in place. Iím sure youíll be on strong painkillers,or, even intravenous drugs while on the wards. 

Theyíll expect you to get out of bed ASAP.  Before you can go home, youíll be made to walk up some stairs.  Iíve had that quite a few times now.  Itís very painful, but, they wonít allow you home unless youíre self caring, and, can manage the stairs. Youíll probably see an OT who will ask about your current home, and, who will care for you, before they discharge you,  I really hope your unofficial foster parents will be there for you.  If I were you, Iíd be brave, and, ask them. I was in no condition to care for myself after all the spinal interventions Iíve had.  I doubt youíll be any different.  Let us know if you get the care you need  >hugs<
Title: Re: Medical investigations
Post by: Fiz on 13 Aug 2019 03:58PM
Hi guys WARNING VERY LONG POST - ADVISORY: MAKE A BEVERAGE OR SOMETHING STRONGER TO WHILE AWAY THE READING TIME.

Sorry it's taken me so long until I dug out my tablet to visit ouch. I enjoyed reading the invisible disabilities discussion.

Well I met my Consultant on Monday 15th July he was with the clinical nurse specialist for spine tumours. I was introduced to my tumour via the MRI pictures and seeing it squeezing my spinal cord into a third of its normal space made me realise why my pain has been horrific. Unfortunately there was a kink in the cord which apparently means any symptoms already happening may not get any better and I had to sign on the consent form to say that I understood that the purpose of the operation was to prevent further deterioration of the spinal cord. He said he would do the operation at the beginning of August but they'd book me in for a pre-op for as soon as possible. The nurse took me out for the appointment with her arm around me looking all concerned obviously expecting me to be upset but I'm very matter of fact about my physical disabilities which is strange considering how fragile I am mentally in bad phases. The nurse got me a pre-op appointment for the following day for 1pm. The following morning a woman phoned me from the hospital and confirmed I was attending the pre-op later at 1pm and she said that's good because your surgery is tomorrow. At my pre-op the nurses told me that the Consultant neurosurgeon had cancelled his Wednesday afternoon list to get my operation done before he went on his annual leave at the end of the week.

The surgery went well in that he thinks he got the whole tumour out, he did have to remove two vertebrae to get to the tumour. The tumour came back as a grade 1 meningeoma which is what we expected which is good news so if he did get it all out that should be it as far as the tumour is concerned so it's just the damage to the spinal cord to worry about now.

The nurses wanted to discharge me on the Saturday morning but I said that I wasn't ready, I could only get up and lie down using the bed rail which isn't at home as I was so fatigued by the operation that I couldn't even wash. On Monday an OT came to assess me getting up from the bed and lying down again and said that I 100% needed the bed rail and I shouldn't be discharged until there was one at home for me but soon after she had left the room a physio came in and said they were all out of bed rails and wouldn't get any for ages and that I would be fine without one. She told me to get dressed and packed and I would be taken to the discharge lounge where I could wait until whoever is collecting me is picking me up. I explained there was no one at home and I'd be on my own in a house and my sister couldn't arrive until the Wednesday because of her work. They said I'd have to go home in a taxi then to which I said I hadn't brought any money with me because it hadn't occurred to me that I would be put in unlicensed transport alone to go home to my empty house with no food or anything. They said they'd pay for the taxi which they did. To be fair I was exhausted and hadn't the energy to eat anything for those 2 days even had someone put food in front of me so I didn't suffer on my own at home for a couple of days.

My sister arrived on the Wednesday and put away an online shop I had ordered to be delivered after she arrived. She's tidied, uncluttered and cleaned so much in the 5 days she was with me all with the intention of making life easier for me she was amazing. She left on Sunday and I've been on my own since. I've had phone calls from the clinical nurse tumour specialist checking on me. Oh and foster Mum phoned the council and my bed rail was fitted about 10 days after getting home.

It looks like my wet room showeroom is being started next week. The council are here at the same time replacing my boiler and putting thermostatic valves on all the radiators. I've bought a dual fuel towel radiator for the showeroom which will run off the central heating if that's on or can be switched to electric for when I'm doing without heating in the winter to save money but can that way have a warm showeroom to wash and change. When they're finished with the showeroom they are going to install a stair/chair lift which I will need as my knees are shot.

So life is busy despite being officially on bed rest now being allowed out of bed for an hour before more bed rest. I'm lonely.

The good news is, of the three symptoms the spinal cord damage was giving me, two haven't occurred since the tumour was removed. No horrendous neuropathic pain at all in either electric shock format or burning calve muscles and I haven't had a single fall since the operation.

The one symptom that I've hated the most though has been far worse since the operation than it was before. The enuresis is now most nights and the thickest maxi tena pants and the square bed sheet/pads isn't enough to prevent my sheets needing frequent changes which I shouldn't be doing but have little choice.

When I met the Consultant he said that my spinal cord has suffered severe trauma but it will experience levels of healing all the way up to a year after the operation and I wasn't to panic if my symptoms hadn't improved after the operation. Now I know why I signed the consent forms saying I understood that the operation is to prevent further deterioration of the spinal cord. I do wonder if I would recover more if I wasn't home alone do everything necessary for survival here.

But, positively, the tumour is out and gone and graded at a 1 which is the best grade A tumour can get. Just with some odd changing cells. A bit like an early abnormal cervical smear can be cured completely by obliterating the offending changing cells with a lazer, instead my abnormal changing cells have been (hopefully) completely removed.

The first MRI will show if there is any tumour left which I'd be very surprised at with a top neurosurgeon doing my surgery. It will also show how much the spinal cord has been able to move back into its normal space. Apparently it will never be fully back where it should be.

I am gutted about the enuresis being worse but the spinal cord will be healing for a year so who knows how much it will improve if it does. At the moment it's worse than before the operation but it's possible than when the tumour was removed the spinal cord was nudged a title  and it's temporarily worse. Please God.
Title: Re: Medical investigations
Post by: Fiz on 13 Aug 2019 04:04PM
Unlicensed taxi should read public transport >yikes<
Title: Re: Medical investigations
Post by: huhn on 13 Aug 2019 07:28PM
 >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<
Title: Re: Medical investigations
Post by: Sunshine Meadows on 13 Aug 2019 07:32PM
It is really good that they found the tumour and it is out. I wish you had more help at home and hope you don't feel that you have to do anything beyond the most basic. When Mr Sunshine broke his ankle my sisters thought Social Services would help and pushed me to make that happen. I tried and discovered much as you have that social care is not at all what it used to be, I am glad your sister helped you. 

What happened with Tizzie your dog, we had to put our dogs in kennels I hope someone is looking after you well and she has been able to visit you.

>hugs<
Title: Re: Medical investigation
Post by: ally on 13 Aug 2019 09:30PM
Iím glad to see you on the forum.  I was concerned about you.  I did think of asking kizzy or sunshine if they knew how you were.  The enuresis is normal after a spinal operation.  Even if you didnít have it beforehand, thereís always some sort of changes with the water works, after a spinal op.  Iíd certainly discuss this with your GP, or, your surgeon to be on the safe side.  Changes to your water works can be a red flag symptom. 

You really need someone to be with you.  Itíll take at least three months before you feel up to doing anything.  Besides, you shouldnít lift, bend, twist or turn after a spinal op like that. I hope the nurses are coming in to change your dressings on your wound, and, to keep an eye out for any infection. Without being scary, I developed an infection after my first spinal op.  So, make sure you note any changes, redness, temperature etc.

I have a bed lever/rail.  I use it to sit up, and, get out of bed. Have you been assessed by the social services for anything else you may need to help your recovery?  I was given a toilet surround, and, grab rails on the stairs. Also, pick up sticks are extremely useful for picking up the things you drop.  I have three.  Downstairs, kitchen, and, bathroom/bedroom.  You could also have a door lever for your car to help you in and out. 

Iím really glad you donít have neuropathic pain.  I have that in both legs. Mine was caused by FBS, and, excess scar tissue.  When you feel up to it, perhaps physio could help your mobility. Your hospital should offer you that, also, alternate therapies if they have them.  Iíve had mindfulness, and, acupuncture from our hospital.   Donít try and force your recovery, itíll take as long as it takes.  Thinking of you  >hugs<
Title: Re: Medical investigations
Post by: KizzyKazaer on 14 Aug 2019 11:15AM
Wishing you the best of uneventful recoveries, Fiz!  And an improvement in the bladder department...

Not impressed with the hospital discharging you too early when you had no assistance at home - they have a habit of doing this - but help seems to have kicked in from various directions since then, and the wet room/shower room should make a practical difference  >thumbsup<
Title: Re: Medical investigations
Post by: ally on 14 Aug 2019 11:40AM
Iíve been discharged early from every spinal op ive had.  The normal procedure is to watch you walk up the stairs.  Once you can manage to do a few steps, youíre discharged.  To be honest, I didnt mind as I hate being in hospital. However, Fizz really needs someone to care for her during her rehabilitation from a spinal op. All spinal ops are very painful.  I was lucky,  as my husband cared for me. She needs to ask for a social services assessment. Maybe someone to help her for a few hours a week. 

If you canít bend, and, every move brings you pain, itíll be very difficult to care for yourself. Have they suggested upping the meds youíre on?  I was given I/r oxycodone liquid to use as a top up for break through pain. Take care of yourself.  I wish you a speedy recovery.  >hugs<

Title: Re: Medical investigations
Post by: SteveX on 14 Aug 2019 07:04PM
Wish you the best and a speedy recovery
>bighugs<  >bighugs<  >bighugs<
Title: Re: Medical investigations
Post by: Fiz 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.
Title: Re: Medical investigations
Post by: Sunny Clouds 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<
Title: Re: Medical investigations
Post by: ally 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<
Title: Re: Medical investigations
Post by: Fiz 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.
Title: Re: Medical investigations
Post by: Fiz on 31 Aug 2019 04:46AM
Not to give up HOPE not home lol. I think that's my funniest typo yet.
Title: Re: Medical investigations
Post by: KizzyKazaer 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...