Update, EMCAS assessment. Squashed and trapped nerves?

Thanks Pippa,

You are right. It doesn't matter why I tripped. I'm hoping that the NHS may finally give me some guidance and support about how much to push through with what I am doing...also some recognition about the cause of what has been a lonely, scary and frustrating journey to where I am now.

The NHS was unable to help me with my nerve injury which they caused, although my doctor did recognize that one of his nursing staff was incompetent and at fault. I don't bother about trying to improve the injury or look for medical support because it cannot be done. I prefer to distance myself from the NHS as much as possible because I don't trust them to look after my health and safety.

I would try to live with the condition you have and do your best with the exercises on your own. You could spend an eternity waiting for the NHS to give you guidance and support and recognize the cause. I personally wouldn't waste my time on them. If they haven't helped you after all this time, I would be very surprised if they can help you now. It can be very draining looking for NHS support that never comes Sometimes, it is far better to try and accept your situation and this can actually help you to feel better.

Thanks again Pippa,

Yes I am quite prepared for a non productive assessment...but I'm going to make sure I don't keep quiet about how I feel about my "care" to date and how sending back and forth to consultants without a useful diagnosis or treatment plan has been detrimental to any possible recovery. At least I'll get that said and off my chest.

It has possibly slipped my mind about how the NHS caused your nerve injury? That is pretty rubbish of them. I don't also hold the service in highest esteem now that I am minus one kidney due to a "98% chance of kidney cancer" which turned out to be benign.

A pre op biopsy should have told the doctors that the growth was benign. Was this not done? A simple procedure like that would have shown the doctors that kidney removal may not have been necessary.I find that the NHS often deliver standard care and when the patient complains, they don't recognize mistakes have been made.

No, re biopsy, that wasn't/isn't possible It was the readers and interpreters of the scan who are most at fault...so radiographers and consultants. Well, these people and medical science 5 years ago (and probably still today). The tumour was about 3cm if I recall correctly. Often tumours are cancerous in part but not throughout. As a biopsy could only be a small part using a needle they could not be sure of an accurate result. Also the invasiveness of a needle biopsy to a tumour in the kidney can promote cancerous spread within or outside that kidney. So unless they are doubtful, in which case they operate a watch and wait policy, they remove the kidney. I had many small benign tumours throughout my kidneys which can just remain the same for life or can grow called angiomyolipomas. The tumour must have had some connection to them. I feel sad for myself about it but there is nothing I can do. The kidney consultant I see is a nice man, not the surgeon who did the op. The best thing I can do for myself is have a good relationship with this nice consultant who can keep me safer in the future.

My mum had a tumour in her kidney and it was suggested that the only way of finding out if it was benign or cancerous was to do a biopsy. There was no mention of the procedure causing the tumour to spread. Had she not had end stage dementia they were perfectly happy to do the biopsy. They only decided on a wait and see approach because of the dementia. It turned out the growth was benign.

I think you were badly advised by both the radiographers and your surgeon. If it were me, I would want to change my kidney consultant because I wouldn't be able to trust the specialist again after a mistake like that.

Hmm,

I don't know about that. I did do lots and lots of research around it because I was so traumatised. I do know that cancer in the elderly is generally very slow growing and this includes kidneys(this is assuming, of course your mother was elderly), so I am watch and wait would be the best choice. An operation to remove an organ in the elderly is not advisable if it can be avoided but also, given the position of the kidney a biopsy would not be pleasant either.

I don't believe anyone did anything on purpose to me, of course. They were doing what they thought, as a team, was best. It is just sad that medical science isn't a little more advanced. For me, biopsy, for the reasons I stated was not acceptable. For them it was too risky. Sadly this was wrong.

They told me after that it "could have turned to cancer". It might not have done either. I'm a health freak in terms of what I eat and trying to maintain fitness, so even though some people who follow these guidelines still get cancer, I think it might not have been the case for me....but we will never know.

I no longer see the surgeon who did the op, the consultant who diagnosed me...but they are always part of a large team anyway. I see someone else now. I think the first consultant has left the teaching hospital.

My mum wasn't that old at the time; mid seventies to be exact which is considered young these days. The problem was she was very weak because of the late stage dementia so invasive procedures would have been too traumatic for her. While medical mistakes are never done on purpose, they are traumatic and can led to other problems. My mum's dementia was caused by her underactive thyroid being missed for years and even when it was identified, it was too late and she was not given enough thyroxine. Doctors refused to give her the extra medication she needed and my dad had to fight medical intransigence all the way and was very stern with them until they finally gave in.

Unfortunately , the prolonged under treated underactive thyroid caused lack of blood flow to the temporal lobes of her brain and triggered dementia. There have been other medical mistakes in our family to my dad as well as myself which have all had long lasting consequences . I had a serious reaction to the measles jab as a child and it is thought it led to my autism. I have also found I have very severe reactions to other medications too. So, as you can imagine, both me and my dad are very suspicious of doctors despite having doctors in our family.

That's a really sad story about your Mum, Pippa and very hard to come to terms with. I can understand your suspicion of the medical profession. I feel that too. I don't trust them. However, it doesn't always pay not to trust. One has to make a judgement as best one can about whether to go with what they say. In my case, when someone was telling me I had cancer it was scary and I wanted the cancer out. Little did i know.... On the other hand, my father, who had a deep distrust of doctors died suddenly at 63. He had been told he had high blood pressure but didn't want to take any advice about medication(although these days they might first talk to you about diet and exercise) and he got a sudden intense pain in the abdomen which they could not diagnose in A&E. He was bleeding internally due to a ruptured aorta ( a consequence of high BP) and they didn't know until too late. Many years ago now and things have moved on but, in his case, his mistrust didn't help,

My mistrust also comes from a phobia because I always come out of the doctors with far worse problems than I went in with and often these problems end up being permanent. Being autistic and dyspraxic makes me very clumsy and I have had many falls and bangs over the years. Some these injuries left things behind because I was too frightened to risk getting treatment in case it made the existing problem worse. My immune system and pain receptors go into hyper mode during any procedure big or small and I find I have to get simple procedures like blood tests done in hospital because my doctors surgery doesn't have adequate procedures in place to calm my reactions down. Sometimes, I get these reactions in hospital too and procedures have had to be abandoned.

It means I always have to ask for reasonable adjustments and go through a long list of previous reactions with doctors and dentists. With the result, I have put off dental X Rays even though I know I can get a different type in hospital that I can tolerate, and I avoid getting my eyes tested despite the fact I am not seeing as well as I used to. I prefer to cheat and zoom up text on the computer, use a magnifying glass for printed documents or use the reading glasses I got off the shelf in a shop. These workarounds help me to cope with my medical anxiety because having to explain all my problems to medics etc and undergoing tests/treatments could cause my IBS to flare up.

That's all tough for you Pippa. At least you recognise a lot of this to be a phobic reaction. Some people don't recognise the way their own mind is working and that means things can never improve for them. Baby steps can get us out of phobic reactions and maybe a trigger to start thinking more helpfully can come from an unexpected kindness and competence from, in your case, a medical professional, allowing your confidence to increase just enough to make a baby step. As health issues are things we all have to face as our age increases it helps to be able to tolerate things we must when the need arises....if you see what I mean.

Having said all that I prefer not to visit doctors, dentists, opticians. I put it off. Partly it is about trust. Where doctors are concerned, particularly at the moment, I think they won't listen to me, won't believe me, they will be dismissive...so in my own way it is also an ordeal.

I think my baby step was finally admitting my eyes are not as good as they should be and getting reading glasses albeit off the peg from a fabric shop. This is some improvement because before this, I wouldn't even do that. I relied on holding text up to the light and a magnifiying glass plus a lot of squinting. Even if this is the best I can do at the moment, it is something.

Well done for that.