treatment in the UK

[Alison]

Hi,

I'm based in south west England, and am awaiting my first apt with a neurosurgeon in Bristol. I have detailed my story in my first post, entitled "just diagnosed". I've read a few posts from other UK based people and wondered what the NHS experience is like for
us on the other side of the pond. Any comments will be gratefully received.

Best wishes,

Alison
 

[cathy cathy]

Hello Alison
I live on the south coast and I had my translab operation 4 years ago last week.
I was diagnosed in january, met up with the  neurosurgeon in February and had the operation in the August.
I had a wonderful experience with the NHS, I was worried but as soon as I met the surgeon she put me at ease. When I was diagnosed I was hunting around the web and found this site www.hugh.letheren.org/, that along with this great site really helped me. Please contact me anytime for a more in depth conversation anytime.

Cathy

[PamJ]

Hi Alison I also live on the South Coast and had my acoustic neuroma removed translab in London.  I was a 'watch and wait' patient for 3 years but because of the pain it was causing had it removed.  From when the Professor said he would remove it to the date I had the op was 4 months.  I was in hospital for 3 weeks due to balance problems but NHS was absolutely brilliant I couldn't find fault with the treatment I received, even when I got back home I had people come round checking on me for three months.

[Alison]

Thanks to Cathy and Pam for their replies.

Pam, I've read your posts and am sorry you have had such a rough time of it with the facial problems and your eye. I thought translab was the option with less risk of that, had your tumour grown whilst on watch and wait? Did you chose to go to London as opposed to the local centre?

I'm waiting for my first apt at Frenchay Bristol and am feeling I want to get the tumour out asap, especially as my balance/dizziness have stopped me doing my normal activities and the tinnitus is getting worse along with newly developed eye twitches. But I'm concerned these may not be resolved post op.

I hope you can get your eye working properly soon.

Best Wishes

Alison 

[PamJ]

Hi Alison good to hear from you.  When my local hospital found the tumour I was told I had to go to the Neurology Hospital in London.  Because my tumour was small I was wait and watch and was told over the three years it only grew an extra 2mm ( I don't know how big the actual tumour was) but the pain was driving me mad it felt like I'd swallowed a lump of ice (what they call brain freeze) in the end the Professor decided to take it out but said he could not guarantee it would stop the pain as the pain I was describing was not the norm with acoustic neuromas.  From the day I had the tumour out I was pain free I kept getting told it could be the morphine that was stopping the pain but it's 18 months since I had it done and still no pain.  I have no more vertigo but I do have tinnitus and although it drove me mad at first I am learning to live with it.  I was unlucky with my facial palsy and nearly everyone I've spoke to on the site completely recovered from their palsy.  Good news about my eye is I have an appointment in December to have it stitched back into place I know it means another operation but at least there's a light at the end of the tunnel.  Don't be put off by the few hiccups I've had I would still have it done all over again rather than that terrible pain.  And the icing on the cake is the operation for me was practically painless.  Please don't worry about the actual operation you'll be fine and I'm a real wimp and as I say it was practically painless.  I didn't like the idea of something growing in my head so to have it out and be pain free is brilliant,  Please let me know how you get on and if you want to ask me any questions please do.   Pam x 
I forgot to say I've now had an implant (a BAHA) if you google it it will explain what it is.  I was struggling with single sided deafness.
Don't worry about asking me any questions the people on this site have been brilliant and very helpful especially Jim.

[ppearl214]

... was told over the three years it only grew an extra 2mm ( I don't know how big the actual tumour was)

Don't worry about asking me any questions the people on this site have been brilliant and very helpful especially Jim.

Hi Pam and all,

Please know that head MRI's have a total margin of error of +/- 2mm.  This is due to the angle of the slices performed, different people (radiologists, physicians, etc) read/measure differently, types of MRI's used (ie: open/closed/technology used), etc.  Thus, there is a margin of error in place so we have learned here over time that when measurements reflect 2mm difference from prior reads, we try our best to take it with a grain of salt due to the different potential reasons for the margin of error.  This doesn't mean it didn't grow 2 mm but we also try to keep the total margin of error in mind.

Jim.... yeah, he's good people

Phyl

[PamJ]

Hi Phyl that's interesting to know I've learnt so much on this site.

[Alison]

Thanks to Pam And Phyl for the additional information. I didn't realise there could be a margin of error of 2mm on the MRI. Useful to know for future scans.

Pam good news you have a date for the eye repair. I hope it resolves the problem.

Best Wishes,

 Alison

[mattsmum]

hi - i am in west midlands and had radiosurgery at qeh birmingham 2 years ago. i was not at all keen to have surgery unless really necessary due to the complications - so was glad to be offered radiosurgery as my surgeons recommendation. it has been a long road - but i am much, much better now and glad not to have my head opened (at least not yet). i think it is important to remember that whatever treatment is given - it is not to get rid of symptoms like deafness or balance problems - but to prevent further damage to cranial nerves and brain.  the damage to the balance system can be compensated for to a large degree in time (and vestibular rehab helps people whose brain does not spontaneously sort it out) - but the damaged balance nerve cannot be repaired either by surgery or radiation. i have had big problems with my balance and did despair at times that i would ever recover - but although i still have challenges with balance i am functioning pretty normally day to day now. some people seem to sail through whichever mode of treatment they have - some of us have a rocky ride regardless of tumour size. my nhs treatment has been fine - i do know of some people who have had some long waits for surgery/radiosurgery - but mine was done within 2/12 of the decision.
try not to worry too much (easy for me to say now i know!),
best wishes,
vikki

[Alison]

Thanks Vikki for your post.

I've posted a bit in the radiosurgery section recently as the neurosurgeon in Bristol has recommended SRS with their Linac machine for my CPA IAC 1.4cm AN. I'm now awaiting my first apt to discuss this (could be about 2 months before I get an apt). I think I've accepted my balance issues and tinnitus may be here to stay, and like you I hope to avoid surgery by having the SRS.

I'd be interested to know more about your experience. Did you consider trying for CK anywhere in the UK?
Please feel free to message me if you like.

I hope you are recovering well without too many post treatment issues.

Alison

[PamJ]

Hi Alison just a quick note since having my BAHA processor fitted last Wedneday I can now hear on my deaf side, it also has helped my tinnitus and since last messaging you my balance is now 99% back to normal except when I'm tired so if you did have to end up having surgery it's not all doom and gloom
Good luck
Pam x

[Alison]

Thanks Pam,

It's great that your balance is back almost 100% and your BAHA is a working well. I hope your eye op in Dec will be a success too!

Alison

[Alison]

Hi everyone,

I thought it was time I updated this thread so that any UK newbies could get a fuller picture and not be left wondering about the outcome, when trying to understand how treatment pans out in Blighty.

Since I last posted on the "treatment in the UK" at the beginning of October, I have seen the Doc at the Oncology Centre in Bristol, but I had a surprise at my apt when she said she wondered what I was doing there as she had received a report saying, " no treatment needed"! This had been sent in error somehow, as the neurosurgeon said I needed SRS and was referring me. (If my GP hadn't chased the apt I would have been left in limbo. Bit scarey).

By the way the surgeon said he doesn't operate on ANs unless they are big ones. This was Frenchay in Bristol, Somerset. The Oncolgy centre is at Bristol Uni Hospitals.

The Oncology Doc found my MRI on the system and confirmed I did indeed need SRS. This procedure would be with be Linac with the headframe being fitted at 7.30am on the day, then a CT scan then zapping at 5.30pm. I would then be sent home after removal of the frame. SRS being a one off treatment. She estimated the AN to be 14.5mm x 10 x 8 in the IAC bulging into CPA.

I eventually got a date of Dec 6th and an MRI with dye for the week before, 30th Nov. I felt I could relax at last, albeit knowing after effects can be worse for a while and symptoms may not resolve, but at least I was on the way to the other side of treatment.

But three days ago I got the call I was dreading. Yes my treatment was cancelled as my slot was needed for an emergency case. Well of course one feels bad for the emergency case, but at the same time you worry maybe being an emergency case is the only way to get treated these days on the NHS. I don't say this flippantly because I do fear about growth spurts in the months since my MRI which diagnosed the AN. Also another Bristol AN patient I have talked to had his cancelled before me.

I was given the next available date which I think no one wanted cos it is the day after boxing day , 27th Dec and a rescheduled MRI on the 21st. I'm uncertain about public transport availabilities on that day, it's a one and a half hour trip door to door one way, so I'll probably be taking out a mortgage for a taxi! But that is the least of my concerns. I don't know how I'll cope emotionally if they cancel again.

 AN's are not considered urgent, and this is worrying as you are left with the size the tumour is at treatment with SRS (unless you get shrinkage). The bigger it is, the more symptoms you may be stuck with, and I've quite a long list already!

Anyway fingers crossed I get zapped on the 27th!

Alison
 

[Alison]

Hi,

forgot to say in the above update, a BIG thankyou to all of you who have offered advice and support over the past few months.

Love and thanks,

Alison

[mattsmum]

hi alison - i am sorry to hear of your cancellation, and hope your progress is smooth from now on. good luck!
vikki