Medical investigations

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ally

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Re: Medical investigations

  • on: 28 Jun 2019 09:40AM
 Hope everything goes well for you.  Take care  >bighugs<

JLR2

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Re: Medical investigations

  • on: 01 Jul 2019 05:27AM
 >bighugs< 

Fiz

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Re: Medical investigations

  • 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!

ally

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Re: Medical investigations

  • 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<

Fiz

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Re: Medical investigations

  • 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.

KizzyKazaer

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Re: Medical investigations

  • 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!

 

ally

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Re: Medical investigations

  • 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<

Fiz

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Re: Medical investigations

  • 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.

Fiz

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Re: Medical investigations

  • on: 13 Aug 2019 04:04PM
Unlicensed taxi should read public transport >yikes<

huhn

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Re: Medical investigations

  • on: 13 Aug 2019 07:28PM
 >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<

Sunshine Meadows

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Re: Medical investigations

  • 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<

ally

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Re: Medical investigation

  • 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<

KizzyKazaer

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Re: Medical investigations

  • 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<

ally

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Re: Medical investigations

  • 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<


SteveX

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Re: Medical investigations

  • on: 14 Aug 2019 07:04PM
Wish you the best and a speedy recovery
>bighugs<  >bighugs<  >bighugs<
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