Advice required for MAST treatment, I'm really struggling
Posted , 3 users are following.
My back specialist has asked me to research MAST as he feels I am a suitable candidate for this trial.
Im 32 with a six year old little girl. I underwent a partial discectomy in 2008 that wasn't succesful. I have suffered for 8 years and basically my back gave in, in March and I was admitted to hospital.
to cut a long story short, what is left of my disc (L5/S1) is knackered and I also have a prolapsed disc in the bottom of my neck. I have nerve damage down my left leg and suffer with a lot of pain in my leg and also spams.
Ive got modic changes around the L5/S1 disc and my specialist also suspects I have a problem with my sacroiliac joint. I had another, more in depth scan on Tuesday for him to determine if there is a problem with my sacroiliac joint.
I haven't yet returned to work since I was admitted to hospital in March as I am really struggling to sit square on my bum. I've always had difficulty since my operation, I have tended to sit on one bum cheek and I am more comfortable to sit with my legs up. Just before I was admitted to hospital in March I was experiencing immense pain when moving from the sitting position to standing. I work in an office so as you can imagine most of my day is spent at a computer.
My specialist (I have only seen him once so far) is convinced this is nothing to do with my coccyx but suspects it's possibly either due to my sacroiliac joint or the modic changes.
I'm just at the end of my tether. Feeling very low and fed up, I just want to enjoy my life again and be a normal mum for my little girl.
Due to see my specialist again on Tuesday 31st May.
Any advice will much appreciated.
Many thanks
Abbey
(North Yorkshire, UK)
0 likes, 3 replies
Holly1974 Starryeyes83
Posted
I just wanted to say thank you for mentioning this treatment ! I have spent last 9 years with lots of problems with L5/S1 bulge, muscle spasm and irritaed nerve endings and at only 42 with two teens, often feel at my wits end. My pain clinic in Huddersfield and the one I have been to in Leeds have never mentioned this in all the years I have been going. I would be interested in knowing how you get on ? Good luck
Holly x
Starryeyes83 Holly1974
Posted
Thank you for your response.
When did you last have an MRI scan?
I had never heard of modic changes until I saw my specialist. On the MRI there was like a visible ring running round what is left of my disc and he said this was modic changes which is basically an infection.
What sort of treatment have you been offered/had?
Being at your wits end is totally normally, we are only human after all!
Take care xx
Holly1974 Starryeyes83
Posted
It must be 3 years since my last MRI scan, and they are not really that keen to do any more, had about 3 over last 9 years. the two discs above L5/S1 are also affected but not as bad as L5/S1.
I have been tentaively offered a spinal nerve stimulator procedure at Leeds, but told I am not the best sort of candidate for best outcome, so sort of put me off the idea, pretty invasive for how much pain relief I ws told to expect if worked.
Problem if I vary from one day to another in how bad it is, muscle spasm is a sonstant feature and it get v bad v easily these days, which then tends to irritate nerve endings and I lose feeling in one or both of my legs. Sad to say at 42 and after 9 years I am living on slow release morphine for the pain, and not always enough, sometimes even topping up on oromorph and muscle relaxants doesn;t touch the pain, I used to take gabapentin and pregabalin for nerve pain, but had prob's over 5 years of treatment in that my cognition is pretty naff, reallt bad short term memory, recall of names etc, getting to end of a sentence can be an achievement ! without forgetting the end of it....so I came off both of them 12 months ago. So I have nothing to cover me for nerve pain anymore as I felt I was turning into someone with Alzheimer's, I reda Still Alice and identified with ehr symptoms ! Not good. 12 months off it and still not right ! sadly.
I have had radio frequency ablation, steroid injection into various points in spine, no major surgery though as they have always said I am not a good candidate ! Always open to new suggestions....