I think the problem boils down to an appointment I had with a local neurosurgeon in June '08 after my fall in March. (He is a Mr. of course) I had an MRI scan and although the radiologist could see nothing, this neuro thought a spinal root injection might help me. He made it into a competition of sorts who is right, him? or this extremely accomplished radiologist?? ( a MAN thing?)
Obviously I said yes to the block, I wanted help and didn't have a clue what was wrong. It is clear from my symptoms that sciatica is probably involved although I think much of that has now found out to post femoral cutaneous.
Now, I know this!!! All I knew then was I did have shooting pains some of them in my leg some in my bum, which in neuro terms = sciatica.
I had the block and went back for a follow up consultation. I told him that the shooting pains seemed to be going only to behind my knee and not always down my leg to the heel since the block. In my naivety I thought this was an improvement, thinking (daft as I was) that this may be the start of the shooting leg pains receding. Now I think back,this was just me being thick, and also putting my utter trust in these clever, clever people unaware of any pitfalls.
The shooting pains I realised
sometimes went to the knee and
sometimes to my heel. I must just have been having a knee episode at that time, as can still happen. Of course your awareness is heightened after a procedure and you are looking for any hopeful signs at all.
Anyway his medical notes read that the block worked!! He even noted that the shooting pain was gone.
This was far from true and totally not what I said to him. I think (stupidly) I said that he may have been right about a problem seen on my scan and the radiologist wrong, in my none sense, people pleasing way, but what did I know back then?? However a shooting pain is a shooting pain and he should not have written that it had disappeared, it hadn't and that is not what I told him. A shooting pain is still evidence that a nerve is compromised and we all know how strange nerves can be. I don't know if a shorter shooting pain can be described as an improvement, with what I have learned,I would doubt it.
All of the rest of my pain was still there, nothing had changed at all. He also wrote, ' Mrs H thinks that the problem is her SI joint', as that was what a physio had thought and the only anatomical landmark I knew that was near where the main pain was. (possibly is a problem as I'm up and rotated apparently) I was sure that something must be able to be seen there as I was still in pain. I asked but of course the imaging had been of my spine not my pelvis (WHAT????!) and we all know that it wouldn't have shown up any nerves anyway.
He offered me a spinal fusion, I declined (I knew my back wasn't the issue) He wrote this up as I don't think surgery is an option at the moment.
So my records read that I have had a diagnostic root block that worked. . . . it didn't!
and I don't need surgery. So yes there is something wrong with my back (there isn't) which doesn't warrant surgery, so there musn't be that much wrong.This has come from a respected local man who can not be wrong! So if he isn't wrong I must be. It is absolutely ridiculous. I'm medically 'stitched up like a kipper'!
I didn't even know that this report had been written up like this for 2 years. Blissfully ignorant trying to find a reason and resolution for my pain. I wrote to him when i realised the content, giving him the facts and asking him to change it but I received absolutely no reply. I think that this has been the problem throughout.
Added to that of course the fact is that no one up here believes that the piriformis muscle can cause these problems, no one really has any clue about pudendal and any pelvic problems (it is a disgrace, we know) Even the fact that I
have now got a diagnosis from someone who does know what they are talking about (Dr G) my GP obviously still believes my problem is spinal, and I have Dr and diagnosis shopped, heedless to an experts opinion, hence her non cooperation.
All the PCT wanted was her to supply them with some, 'clinical reasons' why I need the referral but she couldn't think of any??? Every time she writes to the PCT or Dr G, which she did at my request, she cherry picks only the passages of text that will hinder me rather than help.
I went to see her last week to find out once and for all where she was coming from in all of this. In the mean time Dr G had sent her THE nicest letter, I tried to upload, but too big? all she picked out was that the 1T scan I'd had done previously, had been examined in Bristol and they couldn't find any conclusive evidence for piriformis surgery. Dr G then went on to say that this is not unusual and that the Nantes team don't use this imaging as they think it unhelpful.' We all know this, she now knows; this but all she had highlighted was that
nothing could be seen!!!
That was the point that I gave up!!
I have an appointment with another Dr today so I will see what he has to say.What I have to say will take longer than the usual 10 mins, although if I am fighting for someone else I am good, when it is for me I go to pieces and my brain seems to shut down. I still have this inbuilt respect and idea that my needs aren't important enough to merit a challenge.
I need to get into the 'ask why' 'WHY??' I think you are very right with this tact. Now I just need to be firm and employ it. PHEW!
Thanks, calluna and sorry for the length of this. Setting it down may even have helped me. We will see this afternoon
I will be on to my MP after this as I have realised that I do need additional help with this.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.