I’ve RTFT Op I can only sympathise with you - this is my post on another thread where someone else is suffering - I see just now you have also commented on this one too. I apologise for my bluntness.
“I’m really disappointed in the nhs, feel that they either panicked me unnecessarily or are giving me a load of bullshit.
My ability to walk has deteriated when this first started I felt as though I could still walk normally although I had acute pain when I moved! I’m not sure how long I had pain in my back for think it is 6 months and what prompted me to go to GP was being unable to bend over and touch my toes In yoga - something I have been doing for 10 years plus.
So this led to the mri scan and the instruction to go to a & e urgently - the outcome of which was to be seen by neurosurgeon in clinic. I did this on 27 July. This date is etched in my mind because I was told out of the 3 options (1 wait and do nothing, 2 have pain relief via injections 3 have surgery) that I needed surgery and this would be within 4 weeks.
I burst into tears at this point - I was not expecting this I thought it would be a case of take some more painkillers and come back in 3 months. I expect this reaction was linked to my breast cancer diagnosis where I thought I was having a second mammogram due to the first being unusable but Infact it was because they had detected something and I needed biopsy there and then - anyway that,s
another story.
As I felt able to walk and that some of the pain had subsided I asked for another MRi scan thinking/ hoping that there had been some improvement. I was told to contact them the day after as depending on this scan they would be making a decision.
The result of this scan was deteriation basically I had got worse in the space of a month! I made the phonecall the next day but was told I could not have been told to call in the next day as results from scans take 2 - 3 weeks. Even the nurse at the scan reminded me to do this as it was obviously I needed my notes. I assumed that as I was already informed that I needed urgent surgery this scan would prompt this happening fairly swiftly. However this appears not to be the case. I was given a 3 month appointment by neurosurgeon and was told this was purely to make sure I did not fall through the system!
So after feeling that I am getting worse - after a noticeable difference in my ability to walk which I can only do very slowly with controlled movement and feeling a sensation of numbness after sitng still for a bit longer than I have normally been able to do and calls direct to the neurosurgery department who are now implying that the appointment at end of October is likely to be the soonest I go back to my Gp Wednesday.
He aggrees that i need to go back to a & e - calls them up and arranges for me to be seen. But as it is before 4pm have to be seen by orthopaedics and not neurosurgery who do a & e after 4pm.
So I have to explain everything all over again I have to try and perform various leg movements for them to assess me. I’m tested ( with a paper clip!!!!) for sensation, I try to explain that although I can do some of the movements the limited range is not normal for me - I do yoga i know my own body. I’m asked why I was not referred to physiotherapy I say it is because I understood i needed urgent surgery and that had I not asked for another mri scan I believe I would have had this by now.
I end up crying again - I’m starting to feel the same old shite that they are not listening to me. So they decide to send me for another mri scan. I have now been sitting around for 4 hours. I am nil by mouth incase they are going to operate. Mri scan is done shows still same as last one but they want to speak with orthopaedic surgeon for a decision who is currently in theatre.
So I’m waiting around pain is getting unbearable I need to lie down but there is nowhere - can’t sit, can’t walk, can’t stand so I’m moving around all over the place and two people ask me if I’m ok as they can obviously see I am struggling, it’s now approaching 5pm and I still have no idea what’s happening. Dr is going off shift - other guy still in surgery - so they take me upstairs to out of hours and Im given a bed in a consulting room. About 6.30 the dr now on shift comes to see me - they are going to review me in their meeting tomorrow - I don’t need urgent urgent surgery as In that night but I may need urgent surgery within a week or two. I now say I was told this 2 months ago and I would have had surgery by now had I not asked for 2nd mri scan. He agrees however I am now being reviewed under orthopaedics and so they will decide. I am still under neurosurgery and so I ask if they will speak to each other - I am told probably. I tell him again how I feel I say about the mri scan again today he tells me the decision is based on my symptoms and not the scan ( what was the point of this then??)! H3 tells me that if I loose bladder/ bowel control to come back to a & e,
I ask again about movement what am I supposed to be doing- he tells me to keep moving and I ask in what capacity - I’ve been told not to lift anything I’ve been told not to twist my back - I tell him I've stopped going to yoga because this involves a lot of back twisting. He says I can’t bend forward ( again yoga) ( incidentally the first dr told me that physio moves are not the same as yoga which I’m not sure about I need to look this up because I seem to recall once before that I had noticed they were pretty much all the same - may be wrong though,) so. I Say I can’t reaaly do much - I can’t lift wet washing, I can’t carry food shopping, I can’t walk the dog, I can’t change the beds, I can’t do ironing or hoovering - I can sit for about 20mins at a time I can’t walk very far but as I Can walk I am ok - I can’t stand still for very long’
By this time I’m getting pretty frustrated I ask them to call me after their meeting! I ask them to speak to neurosurgery both of which he says they will do and he reminds me again to come straight in if I loose any control.
So I have had no phonecall. My understanding of my situation is that as I can currently walk to the toilet when I need to I am not an urgent case for surgery however if I end up pissing or shitting myself then I need to go straight to a & e, in the meantime I can carry on - quite with what I don’t bloody know! I can’t plan anything because I don’t know how I am going to be from one day to the next, I can’t do anything because I can hardly bloody move and if I dose myself up with pain killers so I can move I might scared I could do more harm. I can’t do yoga which has been my sanctuary over the year s but I could have physiotherapy although they have not referred me for this? I’m thinking if I had private insurance ( which I did have prior to my divorce ) I would probably be able to get the surgery done without having to wait.
Meanwhile I am now under two bloody de apartments with slightly different views on this but neither seem so to be in a position to do anything. I currently feel like I am in a situation where when I go blind they will operate on my eyes but by then it will be too bloody late - I am not going to let myself get to the point where i am in nappies and having to use a wheelchair because they decided my situation was not urgent enough. As I was waiting for my scan there was a chap there also waiting - he had had surgery but had numbness in his leg - they were checking him out!
Time to kick some butt I think @cactusplant I understand your frustration - what has helped you the most please?”
I now believe having read this thread that the decision is based on cost - not based on how much we are suffering, not on how much this is impacting on our lives and will only become a decision for surgery once we are at the point of having some long term health impacts as a result of the delayed decision.
I also believe I had my mri scan pretty quickly because I have had breast cancer in the last 3 years and I was concerned the back pain was possibly a result of further cancer. Without this I can quite believe I could still be waiting for an mri.
I am very concerned as to what is going on with the nhs! I too am thinking I am getting robbed off - I have not had the phonecall I was promised but did receive a letter saying my neurosurgery appointment has been brought forward to 1st October. Whether this is as a result of my trip to a &e last week or me phoning the neurosurgeons secretary I have no idea.
Yesterday I could hardly walk at all - luckily I have someone who will take me out but they are holding on to me all the time like I am an old person. This time last year I was having a serious of falls where my ankle would go and I would end up on the floor - this happened about a dozen times - I have been under immense stress ( acrimonious divorce) and put it down to this. Whether I damaged my back on one of these falls I don’t know but I have always said my back is pretty strong - something I know from my yoga practise! I also lifted a piece of furniture that was pretty heavy - whether it was this again I dont know.
I have always had an issue with my left hip and laying on hard surfaces for any length of time - I cannot lay direct on sand on h9liday and have to be careful with certain types of sunbed otherwise I cannot walk after.
I had never heard of this cauda equina until my gp needed me to go to a & e urgently after the results of the first scan! However when googling I came across a few solicitors specialising in this area and contacted one not for legal help but thought they may be able to tell me more about the condition and exactly what I could or could not do. Obviously I do not want to be moving in such a way that this could result in more severe nerve damage. Anyway I now have a “file” with these solicitors.
For those saying have faith in the professionals - my recent post indicates the difference in opinion of these professionals.
I have also just gone through an extremely acrimonious divorce where I put my faith in professionals and I have been shafted! Not once but 3 times and I’m now trying to put this right. My future life has been severely impacted on as a result of not listening to my gut and believing that professionalsno best - what I know now is that they were looking at the route of least resistance whilst maximising their income.
I now believe the NHS are doing exactly the same - this is why noone can give you a definitive answer. I was told the need for surgery was based on my symptoms not the mri scan. When I was performing the tests I told the dr that for me the range of movement was severely different to what I can normally do as a result of yoga practise - this did not seem to matter.
whilst at a & e last week a decision was made for me to have a third mri scan. Even though this department where aware it was an emergency that I was nil by mouth incase I needed surgery the dr there and my partner still had to pressure them for me to be seen over and above the other patients who had booked scans.
Yesterday I was walking on grass I say walking more like shuffling trying not to lift my feet of the floor but any slight dip and I yelped in pain even whilst hanging onto my partner!
I am worried that any slight movement that is uncontrolled could leave me with damage that may be long lasting/ permanent - I feel even sneezing could do this.
This is the problem when you are not being told the truth - if the truth of the matter is that nhs are trying to keep costs down and so will go for the least expensive treatment option first you really have no idea how severe your symptoms are until it is possibly too late and why should we have to gamble our quality of life when we are not aware that this is what is really happening!
I learnt the hardway through my divorce and my life has been impacted on financially _ too make matters worse had my solicitor done her job properly I may still have had some private medical insurance that I had throughout my marriage
I’ve looked into this - the operation can be done privately - I’m considering asking for my scans so that I can be assessed privately. I have money that I could use to pay for the operation privately but the ramifications of this will be felt elsewhere but currently I have no faith that the operation on the NHS will be done anything soon unless I have lost control of toilet function. Do I want to risk my future capacity of life - the answer is I shouldn’t bloody have to especially when it is known what the issue is and the solution. The problem is that we are not been told that decisions are probably being influenced by something that we have no idea over - not the facts of our medical situation but what the nhs can afford!
I know if I go back to my gp tomorrow and tell him what happened and how I was yesterday he will refer me back to a & e and I will go through the same charade again. The other option is doing very very little and with the fear that any movement could be the one that impacts more significantly on my life!
Costwise getting the op over and done with will possibly be cheaper - why don’t they bloody get this? Or are they hoping that if they can string this out for 2 years the majority just heal themselves?
Sorry for long post