Increased symptoms and worried

[Leofwen]

I have a schwannoma at right L5 nerve root, but also have a problem on left side following a disc bulge in 2010. I had a nerve root block injection 3 weeks ago which has increased my symptoms and I have now lost my ankle jerk reflex. My knees are incredibly painful and I have bilateral lower leg weakness. I am really frustrated as I am still considered asymptomatic and on the watch and wait path. I now have an urgent MRI booked for 19 June for a full brain, auditory meatus and full spine as they have a suspicion of mosaic neurofibromatosis type 2 of which schwannomatosis is a subset. Anyone heard of this.

I have daily pain, most of which is manageable with meds and I work full time, have had no days off, but really struggle with fatigue.

Having a problem on both sides at L5, which are unrelated is a real bind as one side is having a negative impact on the other. Apart from taking me to the knackers yard, anyone else had similar problems.

Just having a good moan really as it is really getting me down having to be so restricted!

Sometimes I think of the specialists having to live with the reality of the diagnosis on a daily basis and would it help to speed up the recess and decision making. It is often useful to walk a mile in another mans shoes( how I wish I could walk a mile! Lol)

S

[lw]

Hi,

I have heard of neurofibromatosis (types 1 & 2), although I do not have the condition myself. I think type 2 is the formation of tumours exclusively in the brain and/or spine. Do you have more than one tumour? To get a diagnosis of neurofibromatosis you normally need to have either two or more tumours or one plexiform mass. I've spent a considerable amount of time looking into this as I have one solitary neurofibroma. My neurosurgeon has always remained adamant that I do not have this or any associated genetic condition.

Do you think you need the operation now? It is so tedious having to wait for all the consultations, scans etc. I just hate being so beholden to the NHS with their pain management/anti-depressants as opposed to clinical treatment. Luckily my surgery was carried out almost immediately after diagnosis (in retrospect I am glad it happened this way), but the aftercare was pants. And I was paralysed at this point! By the way, I think you are incredible for holding down a full-time job with all this pain and stress.

Good luck with the MRI. My next one is 10th June.

[Leofwen]

Hi Iw

The NHS is slow and clunky and actively steer away from clinical intervention preferring to keep you on pain meds and continuos assessment. In my experience quality of life comes far down the list of considerations when you see specialists as it becomes an exercise in them displaying their superior knowledge!

I worked at a senior level in NHS for. 17 years and can now appreciate patients frustrations and complaints about the length of time it takes to be treated and generally when things get to crisis point.

Anyway, I have just one tumour, but saw a great Professor of Neurology at Guys Hospital in London who is an international expert on NF and Schwannomatosis. Her suspicion is of mosaic NF 2, hence the detailed scan scheduled, which has been brought forward due to my increasing symptoms. I will let you know how it goes, but she must have identified something to raise her suspicion and ask for such a detailed scan. It is worth you asking to see her ( contact me offline.)

I struggle with work now and am rapidly coming to the point where I need to cut my hours and potentially give up completely. The travel and hours are making me so tired, coupled with constant pain that I am finding it hard. Work and my fab GP are encouraging me to continue and are happy to put things in p,ace to support and ensure I continue with a normal and fulfilled life as long as possible.

It is hard knowing you have these tumours and the horrible symptoms that the specialists don't understand and minimise as they don't have to put up with it. Pain is a cumulative thing.

Anyhow onwards and upwards and keep smiling!

S x