Fusion of l4/5/s1 made me worse, anyone else the same?

[Grumpy]

Hi I am new to this site and am writing this lying down! Two and a half years ago I turned over in bed and literally popped two discs. After two unsuccessful epidurals I had microdiscectomy and decompression in June 2010. Unfortunately this made things worse! My employer, the NHS by the way, then started proceedings to dismiss me on capability issues. This finally happened in February 2011 even though I was waiting for fusion surgery at the same hospital where I had worked for seven years!! Fusion surgery was 15th april 2011 and unfortunately it has left me more or less housebound. I only go out now to attend medical appointments. I cannot sit or stand for longer than ten minutes, I walk like a 100 year old (my gran is 97 and walks better) with my stick. Thankfully for me I have the best hubby and three kids, they have to do all the cleaning,cooking and shopping. Hubby even has to help me out of shower, drying, dressing etc. I am waiting to hear from my consultant whether they want to go back in and do another decompression but have been told as first two surgeries made me worse no guarantee this one won't.

I have had to fight to get proper rate of DLA and now am going through the initial process of getting ill health retirement, think this maybe a battle.

I would love to chat to anyone about this and see if anyone else in the same boat.

For anyone reading this sorry to go on but can't keep moaning to family and need to talk to people who understand. At first thought why me, as I know people who have made a full recovery, but now just try and remain as positive as can. I have a good gp, lovely consultant in pain clinic and I will say nothing about back surgeon as was taught if got nothing good to say about someone don't say anything at all!

 

[RKOviper]

Hi Wend, welcome,

Totally understand about having somewhere to talk, HP is a godsend where we all can share our experiences and pain!

I have refused a fusion, I was given a 50/50 chance of ever walking again after it and 60/40 that it would help with my back pain. As I still walk, albeit slow and painful and with a stick I felt the odds were not for me, especially when I found out about MISS surgery that would almost guarantee a good reduction in the nerve pain, but then the NHS refused to pay so I am trying to save for it.

Good luck with the DLA, also ESA? If you are going to apply do so sooner rather than later, I waited too long and was refused.

Hope that talking here will help too

 

[Aiden]

Thanks Cassie for your reply. I wish now I had refused fusion surgery but was so desperate at the time. I didn't fully think about becoming worse and trusted my surgeon wholeheartedly. Now been left housebound, apart from doctors appts and am led down 95 percent of the time. However most of the time cope well with this due to very understanding family .

I already get ESA and some DLA but I know it can be a nightmare trying to deal with everything and get what at the end of the day we deserve. I have learnt how easily people judge you to be faking as they cannot see anything physically wrong, even in some cases friends and family members who should know better!

Sorry this ended up being so long again. Hope to speak again love Wend x

 

[Chihiro00]

Yep understand about the fusion, I accepted at first and then it was only when i had to be referred to a special specialist lol, I realised the risks and that the op would be less than efficient in offering me a reasonable quality of movement and painfree time that I refused and researched elsewhere.


it is very hard that we don't have a visual disability apart from a stick of crutches. If I drop something I cant pick it up I need help and most people stare at me.

One particularly bad experience was at a pain clinic meeting when the lady in charge asked me to help her make the tea and carry the tray of cups lol,. Visually I look fine but I am unsteady and its impossible to carry a tray with a stick lol, but compared to the others in the group - people with amputations, cancer, parkinsons, ms etc, I looked well! I also felt I was in the wrong place too