AN regrowth

[sadie2009]

I had a 4cm AN removed in Sept 99, suffered from horrendous head pain for 2 years but other than the complete deafness on right side and have a slight facial palsy i have been fine. About 3 years ago my right eye started to weep when i chewed which i know can be due to nerve regrowth that loses its way and attaches to the wrong place. In Aug 2011 I started getting a salty taste, mildly, on the same side as my AN. It has gradually got worse. I visited my dentist, had xrays, doctor, was given antibiotics, nasal sprays etc but its worse. Luckily i have private med ins so i saw a neurologist last week and had an MRI on Monday as he thinks there may be regrowth. I am just waiting for the call. The surgery/recovery was so horrendous i dont think i cud go thro it again. Has anyone had radiotherapy, a) did it work b) was it bearable. Also i have a dent in my skull about where the op was carried out, theres no skull there just membrane, Not sure if the dent is from a drainage tube. Denise

[rigs]

Hi Denise

From what i have heard AN regrowth are not that uncommon. In my own case I had a 35mm AN removed in 2001 and a small amount was left so as to preserve the facial nerve.

Three years ago it was found to have started growing again on one of my routine scans so I elected to have Gamma Knife thinking this would be the best option after hearing of the 95% success rates etc etc.

In my case the Gamma Knife really turned my life upside down and I had terrible headaches for at least 2 years after. It seems that the Gamma Knife had caused some damage to surrounding brain tissue. Anyway to cap it all the Gamma Knife did not work and the tumour has continued to grow , 22 mm at the last scan in October . I am due to have a scan next week to see where we are and if it continues to grow will again have surgery , great eh !!

I got over the surgery in 2001 relatively well after about 18 months so I am keeping my fingers crossed I can do it again . My biggest worry is having major facial palsy problems and not so much the operation . My consultant has advised me the operation would only be about six hours , a lot less than the eleven in the first op.

Good luck with your news. Kevin

[sadie2009 in reply to rigs]

Hi Kevin, thanks for replying. The gamma was mentioned way back in 1999 (not sure why i typed 2001, my memory's crap and thats not a joke!) but due to the size i was told removal was the only way so i never looked into the gamma. You sound like you've had a horrendous time and I'm sorry you have regrowth. Like you, i too had a small amount of tumour left as my consultant didnt know how far he could go before he cut the nerve, but the nerve was traumatised and i have a slight palsy. It took some time for me to be able to blink on the AN side, it was suggested that i have a gold weight put into my lid. I had to tape my eye closed at night and use viscose drops. I produced no tears as i couldnt blink, catch 22. I'd seen people who'd had the weights and didnt like the result especially as the corner of your eye is stitched together and it leaves a disfigurement. But i perservered with a facial tens machine and after about 4 months i noticed a small movement and it slowly improved but its about 75%. More noticable when i smile or laugh as my eye involuntarily closes and i dont have any movement in my forehead. Id heard the tumours only grow about 1mm per year but your regrowth seems faster to be at 22mm after 12 or so years. I hope your scan shows no growth and you dont wait too long for the results, I still havent heard so i'm going to have to ring tmrw, get it over with, fingers crossed for both of us. Denise

[nido in reply to rigs]

Hi. Sorry to hear. I also have a continuing growth 4 yrs after gamaknief. It's devastating. I'm also concerned about facial nerve.

Who is ur surgeon and what has he told u about the risk?

[nido in reply to rigs]

Sorry to hear ur story. Did u undergo a 2nd surgery and how was it??

[nido in reply to nido]

No I havnt. It has grown <2mm in 4 years.

So surgeons not keen on surgery!

Don't know what to do.

[bypass]

Just to balance up the debate. As I understand it (after living with an AN treated by FSR 15 years ago), the failure rate for either surgery or radio-surgery in competent hands is around1 to 5% so not too common. Unfortunately, there are a few ANs which seem immune to radio-surgery and regrow after micro-surgery; these obviously are a cause for concern. In my case and 99% of the other cases I am aware of, radio-surgery has caused no problems at all. For example I had a two week holiday in New York, after the initial half day's appointment, I was just popping in for a half hours appointment for treatment on four occasions - absolutely nothing to it. Some people have a day in hospital, particularly if they had Gamma Knife as this gives the whole does in one session and some find the bolt on frame results in some discomfort, but that is usually it. Hope this helps, Chris.

PS - Assuming that you are in the UK, why not consult Professor Christer Lindquist at The Cromwell Hospital (The NHS does refer cases there sometimes I believe) as he does both GK and Micro-surgery and has a good track record for repeat treatments of all kinds.

[sadie2009]

Hi, thanks for your reply. My original consultant was great but unfortunately he's retired now and I have been referred to a neurologist (from a maxilofacial consultant as my symptoms werent originally linked to AN regrowth but to facial/skull problems) however hes not a neurosurgeon. Will cross that bridge I guess when i get the bleedin results. He did mention radio surgery if there is regrowth. Will have to weigh up the options but thank you for telling me your experiences, always food for thought. The fact that you were able to carry on as normal while being treated sounds very appealing. The aftermath of the surgery frightens me knowing what i went through, being incapacitated was awful as i'm very independent and the head pain was unbearable. I am in the UK, up in Newcastle. Thanks for the recommendation which i will bear in mind when i've heard my results. Thanks for being frank and very informative,

Denise

[sadie2009]

well got my results today. I have regrowth, not sure on the size but also bilateral AN (opposite side). Absolutely devastated Think theres a link to NF2. Seeing my consultant on Tuesday to discuss ways forward and he hopes to have my scans from 1999 to compare post surgery with now. I think my subconcious knew as i've had tinnitus on my good side for a year or so but my doc said it was quite common for various reasons and left it at that. I shouldve pressed for a referral then, need to know the size of them hopefully extremely slow growing and small if my first one is to go by, was told 1mm per year and it was 40mm when i was 35, hey ho just have to wait. Kevin have you heard anything yet

[Hidden]

Hi Sadie, so sorry to hear your news. Hopefully the second AN will remain tiny and not cause any further problems. I am sure your consultant will refer you for advice about all treatment options relevant to you. Obviously not everyone is suitable for radiotherapy/radiosurgery but you may well be. Every treatment can have consequences and everyone is different. For every person who has a bad outcome there are several who have a good outcome and move on. Unfortunately it is predominantly the ones with problems who visit support sites like this and BANA, apart from a handful who visit regularly to give support to others (like Chris above).

I do wish you the best of luck on your journey. If you are not already a member of BANA it might be worth considering joining as I know we have several NF2 members.

Take care

Jackey

BANA Secretary

[sadie2009 in reply to Hidden]

Hi Jackey, sorry i never received an email to say i'd had a reply. Thank you for taking the time. I have a NF2 clinic appointment tomorrow in Newcastle and will hopefully learn a lot more. My consultant is adament that i have NF2 although my genetic blood test has returned negative, but not conclusive. I think I'll visit your site. I used to be a member back in 99 when i had my op, thanks again, Denise (Sadies my dawg lol)

[Hidden]

Hi Denise,

Hope the consultation went well and that things are progressing smoothly.

Regards

Jackey

[Lryan]

Hi Sadie. I am wondering what approach they did for you? I had a translabrynthine in December.

[billylad]

Hi Sadie.I had my op in 2010 leaving me deaf in my right ear but not too bad with my facial nerve.Regroweth was found in 2014 and I had radiotherapy in feb 2015. 6 weeks after radiotherapy I found my right hand started to shake a lot and I couldn't even write my name.Last year I was diagnosed with stage 1 Parkinson's( I am not blaming the radiotherapy treatment).Anyway the radiotherapy seemed to have worked but last year I was told that it was growing yet again.My consultant decided to leave any decision about another op till after my scan this year (duescan in nov) I am now 67 and I don't fancy another major op. Billy

[keithzx12r]

So sorry to hear about your journey Sadie. I had normal surgery with bad after effects so I can't comment on radar surgery but I know a lot of people have had good results. Best wishes for the future. Keith

[amira67]

Hi Denise. I had surgery about 7 years ago at the Cleveland Clinic. I was diagnosed with a regrowth after my first follow up MRI.

The first two years after my surgery were just awful. I developed symptoms of Fibromyalgia which also lasted two years. Being in public places, or a sudden loud sound, would trigger flu-like symptoms and I had a toddler at the time.

I can understand your situation.

[amira67]

I meant to say 'Hi Sadie', somehow I thought your name was Denise.