hi Angela
i'm in a very bad way i'm back in a wheelchair and using my zimmer, i have been sacked from work well they call it finished on capability,
iv'e phoned surgeon in a nutshell i will be having another fusion, but i'm trying to hold back till after xmas but i'm getting a lot worse iv'e had a couple of falls that's all really don't know what else i can say.
Angela you can phone me anytime i have social care coming out tomorrow their putting walk in shower and hand rails, my phone is never charged up so i'll make sure i charge it.
take care from a very depressed clare cxxx
Clare love, I am so so sorry. I won't say anymore now but will phone you on Thursday after the social care. I have tried to phone a couple of times but this time it did not ring to the leave a message stage. Since then I seem to have got bogged down with withdrawal symptoms from the drugs which have given a sort of flu. I have thought of phoning again but always too late and I think mornings are better for you.
love Angela
Dear Clare - So sorry to hear you are back in this awful position - my heart goes out to you, it must be so discouraging.
Sending Love, Light and Healing.
thanks
i nearly called an ambulance last night pain was just unbearable and i was dosed up on morphine and still in agonising pain.
surgeon is phoning me today i really don't want to have another fusion before xmas but think i'm gonna have to.
clare xxx hope you are all well x
Hi Clare
So sorry to hear how bad you are 🙁 and I am sending gentle hugs. I also lost my job due to capability and I was devastated at the time, so know how you feel.
Why are you having another fusion, has it not fused? Or do you need another level done? If you have to have another MRI ask if they will scan your SI joints as it turns out most of my pain is now coming from there, caused by the extra pressure from having my fusion.
As you know I have to use a wheelchair which took me a long time to accept. Now I have a stair lift as well and sometimes feel older than my 94 year old Gran, but have accepted that these aids are now an essential part of my life. It has taken me a long time to get to this point and I still have days where I could sit and cry all day but mostly I am dealing with things and accept my limitations. I know it's not easy and having a young child makes it even harder, my youngest was 15 when I first hurt my back so was more than capable of doing things for himself. Although at times all three of my behave like small children, you only have to open their bedroom doors and look at the mess!!
Anyway Clare please know I am here for you if you need to talk to someone who has been where you are and is slowly coming out the other side.
Take care and look after yourself,
Love Wend xxxx
Hi wend
My last fusion was meant for two levels but because my back was such a mess it took 11 hrs to do l5/s1 so he did say it would be inevitable that I will need another one for l4/5.
I have appt with surgeon on Wednesday im in agony im taking oxycontin plus oxycodone every three hours and pregablin amiteyptyline and antidepressants.
Social care came to see me their putting in shower and rails and lever on bed.
This pain is in both legs I've had couple of falls its worse than it ever was but like you said itsssomething I have to come to terms with .
Xxxx
Hi Clare
Thanks for your message on facebook. Gosh with all that medication you must be zonked out mentally. So glad about your appointment on Wednesday. If he does say you have to have another fusion don't try and wait until after Christmas - in terms of your back that is a long way off. I know though, you must be very scared of another op.
I have now got my post-op appointment on the 29th.
Much love, Angela
Hi Clare
Just wanted to say good luck for Wednesday and hope you get some answers. Please let me know how you get on. Are you getting a stair lift from occupational therapists and only had mine a couple of weeks and wouldn't be without it now, it's fab and don't have to worry about falling downstairs again.
Anyway keep me posted.
Love Wend xxx
Hi wend and Angela
I'm in more pain than I've ever been in I've had about two hours sleep at the most
Not only is it affecting me it's affecting everyone else I have no life anymore and no job. Surgeon secretary called me to say for me to come in a little earlier for xray then I will see mr George.
Good luck Angela xx
I forgot wend social care are putting in extra rail on the stairs and putting rails in bathroom around the bed also a lever on bed and putting in a shower.
Clare xx
Clare love, all the very best for tomorrow. Do let us know as soon as you feel able.
love and prayers, Angela
hi all
sorry iv'e not posted iv'e just been very upset with the news i got of surgeon, to cut a long story short i will be needing another fusion, plus this is the worst bit from what i was saying he has said iv;e got something going on with sacral joint as i feel like someone has their hand on my head and their pushing me down or that someone has come behind me and wacked me at the back of my legs because they just flop and i fall,
saturday night was the worst night iv'e ever had in regards to pain i thought i was going to collapse in pain i was that bad and that's with taking oxycontin and oxycodone.
Angela my phoine has been cut off but you can phone me if you want, and i do hope your recovering well.
and wend hope your ok xx
clare x
hi Angela
im housebound now so i'll have my phone upstairs with me,
also i forgot to mention that social care came out and put the lever on my bed which is helping they will be putting on for me.
love clare xx
Hi Claire
So sorry to read your posts. And theres me complaiing!!! So sorry!!
Have you been given any indication when your surgery is going to be scheduled for? Is there a possibilitiy that you can resume a reasonable quality of walking and going out etc?
Take care babe x
hi rob
in regards to fusion iv'e not made my decision yet because it's gonna make my sacral joint dysfunction worse, surgeon more or less said that my disabling pain is only get worse s1 joint dysfunction also causes sciatica so i'm in a catch 22 situation xx
how is your recovery going xx
Hope you are able to feel a little more positive. Has your GP advised you what she suggests?
I have put my news from the rheumatologist at MRI on the board started by Hugh. You may be interested. I will phone you after Tuesday when I see the neurosurgeon post op.
love Angela