Post surgery for AN

[Moosejaw1944]

I'd like some fedaback from people that have had microsurgery or Gammknife surgery.

I'm trying to decide what route to go, my ENT isn't very helpful.

Regards,

Dave

[Linzipops]

Hi Dave....I had surgery 8 years ago to remove my 1.8 cm AN! To be honest I didnt really research other options as I just wanted to 'get it out'! My surgeon was fantastic and explained afterwards that he left a small amount of tumour behind as it was attached to the facial nerve and this would reduce the risk of any facial problems! My surgery went well and my only problem post surgery was that I developed and infection in the meninges (fluid surrounding the brain) which may possibly have been caused by my drain falling out too early! Although unpleasant it was quickly treated with steroids which I had to take for a few weeks aftrewards. Apart from balance issues which is quite normal I was back at work after 10 weeks and have had no lasting problems. My hearing isnt great, again quite normal and I occasionally have balance issues if I turn too quickly or am tired but apart from that I am healthy and have learned to adapt to my hearing loss. I have scans every 2 years and the small piece that was left behind has shrunk a little and so far is behaving. I realise that everyones experiences are different and you have to do what is right for you but generally my experience of surgery has been a positive one!! Good luck with whatever you decide.........Linzi

[Moosejaw1944 in reply to Linzipops]

Thanks Linzi - was just at my ENT he said the Gammaknife was the way to go and said that surgery was the old way of doing it -- his words; they don't seem to reflect the views of everyone.

Cheers,

Dave

[Jackey]

Hi Dave - Gamma Knife certainly has less impact on most people as it is non-invasive but it also has its post-treatment problems. Of course there is also the chance that the GK might not work so you could have to have surgery anyway at a later date. If your AN is under 2.5 cm most consultants would suggest radiation treatment although some are still biased towards their own specialty of course. I have spoken to hundreds of AN patients who have had various treatments and for each different treatment there are those who wish they had taken a different route and those that are quite content with the outcome. Some BANA members have gone back to work immediately after GK with no problems whatsoever apart from maybe a little post-treatment sickness and fatigue whereas others have had to have some time recuperating. If you are considering treatment options you should ask to be referred to a GK specialist as well as discussing the surgical aspect and maybe you should also consider FSR (Fractionated Stereotactic Radiotherapy).

Good luck - would be interested to hear what you decide

[Moosejaw1944 in reply to Jackey]

Thank you

[Hidden]

Hi Dave

The decision an AN patient comes to can be based on so many different factors,but especially it's size, their age, & whether they still have reasonable hearing on the AN side.

I chose Gamma Knife, because my AN was small, & I wanted to try & preserve the hearing I had left. Because I am older, I already had a degree of hearing loss in my 'good' ear.

Have you considered joining BANA? It's online forum has so many members with experience of hospitals & consultants all over the country, who would be happy to share their experiences & answer your questions. It was a lifeline to me when I was first diagnosed, & the friendship & support I received continues now, 18 months after treatment.

[Moosejaw1944 in reply to Hidden]

I joined the Canadian ANA - but seems to be too few members

[keithzx12r]

Dave, when I had my op 25 years ago things weren't as advanced with techniques as now and the GK was only in its infancy in the States so I had no option. The tumour they found on the CT scan I had was pressing on the blood supply to the brain stem and my consultant, who was German and a bit abrupt, said "It must be removed or you die". During surgery they found two more smaller neuromas so its good they "went in". A friend of mine had GK surgery and he was fine afterwards but I don't know the size of his tumour. I suppose the decisions are best left to the experts, we are just grist to the mill so to speak. Good luck whichever procedure you choose. Keith

[Moosejaw1944 in reply to keithzx12r]

Thanks for your advise.

[dgrinev]

Dave, my AN was too big (4cm) so microsurgery was the only option. They used Pathfinder surgical robot and I understand that this helped to minimise the damage to the surrounding area.

[Moosejaw1944 in reply to dgrinev]

Thanks

[Frenchbulldog]

Hi Dave I had surgery in June. I opted for surgery as I simply wanted to know the tumour was well and truly gone.My tumour was 2.8 cms by 1.6 cms.

I have been very lucky on two counts - I had a fantastic surgeon and he managed not to damage my facial nerves.

Post-op week was horrible mainly due to vomiting. I am deaf in my left ear but was anyway prior to surgery. My balance was ropey before surgery and is now actually better. I had some facial palsy post-op but that has now almost disappeared. My main lasting problem so far is dry eye but even that is getting better. I am back to doing all the things I used to do prior to surgery.

If I had to do it all again I would. Overall a very positive outcome.

Good luck with your decision.

[Humour-tumour in reply to Frenchbulldog]

Hi, I hope you would help me as I have recently diagnosed as AN. I am going through mad panic as I have difficult situation to live with my only child who commutes to school by train from the small village. I am the sole carer and worried about her schooling more. Could you let me know the name of your fantastic surgeon and the hospital he works? I am due to see one on the 13th of May but always great to know the second opinion and would like to not damage my facial nerves for sure. Many thanks. my blog name is humour tumour

With best wishes