AN appointment

[IA786]

Hi everyone,

I joined about 3 months ago, I was diagnosed with a AN and At that time was unsure what treatment I should have. Originally I thought of radiotherapy but have now decided I just want rid of the AN tumour and I want the surgery

I have since lost most of my hearing in my right ear,I am also suffering with constant headaches and balance issues.

I had a appointment with the neurosurgeon yesterday, he explained my scan from June 2019 showed a tumour that is 1.8cm. He explained the surgery procedures, the dangers of surgery. The hospital are to do another scan again in the next few weeks and will then put me on a waiting list for surgery. I felt as if he was trying to push me towards a radiotherapy session. I was left feeling let down, as I explained I just want rid of the tumour.

So another scan again to check on size of the AN tumour and then they will put me on the waiting list.

I am feeling lost as I expected this appointment to give me some answers but I feel as if I’ve moved back to last year and it’s back to square 1 again, and go through the whole process again.

Feeling as if I am being neglected .

Sorry I just had to share

[Jerrycat13]

My an is just over two mm. So its a bit bigger than urs. Im on watch and wait. Due another mri oct 2020. Then i will go 4 gramma knife if its still growing. If i was u id stay on watch and wait or go for k/n. The operation is horrible from what ive heard. Let me know wot u decide.

[IA786 in reply to Jerrycat13]

I’m sorry that you have AN ,I wish you well and hope you get your treatment soon, good luck and thanks for sharing

[IA786 in reply to Jerrycat13]

Thanks very much

[Highwycombe]

What about having Jemma knife all that radio stuff in your body is no good x

[IA786 in reply to Highwycombe]

Exactly, I just don’t feel comfortable with radiotherapy

[Freddy1000]

Hi, I’ve had 3 An to date and still not rid of it 30 yrs on , 1.5mm as of 2 yr ago , and another scan this year , the first one was a huge 45mm one and had to come out such as it was a life or death situation , now to be very honest , if I was given the chance of alternative treatment via gamma knife radiation I would have took it as there Is more of a chance of your hearing recovering and invasive surgery carries the risk of damaging your facial nerve leading to permanent paralysis of one side of your face which is what happened to me but was unavoidable, in your case it could be different as it depends on the tumours location to cranial nerves etc , in my opinion , if there was a need to operate to remove this tumour urgently I think your neurosurgeon would have already taken that step but he sounds confident of radiotherapy as a way forward , the tumour size is relatively small to be honest and nowadays watch and wait their approach , I feel for you as it’s scary of the unknown, I’ve been there all too well , but I would look into this further before you make a rash decision, if your not happy with your care , you have the absolute right to see someone else ,

Take care and keep me posted how you get on 👍

[IA786 in reply to Freddy1000]

Thanks very much for your advice and I wish you all the best

[touring]

Know just how you are feeling cos I thought I was heading for surgery and then found I was on 'watch and wait'. However, the risks of surgery are greater than putting up with the symptoms and I think your surgeon will act if and when necessary. You can always have a second opinion: your tumour is not that big at the moment so I would hang on for your next MRI to check on the rate of growth. I am feeling much happier now I know surgery is not imminent!!

[IA786 in reply to touring]

Thanks very much and I will wait for the results to the next scan and see what the surgeon suggests

[drdeanbellavia]

Choosing invasive surgery over gamma-knife for a small AN of 18mm is not a good choice if you want to kill the AN for good. You will have balance problems, and head pain (probably caused by the balance problems) for the rest of your life, no matter what AN removal you choose. I don't think that your expediency of choice to have months of major surgery recovery vs. little recovery with gamma-knife. If you want to do something about your balance problems, do the exercises in the following link, they helped me get rid of my balance problems and headache pain. Also refer to the PDF attached to this link for a better understanding of the exercises.

thebioengineeringco.com/ind...

[IA786 in reply to drdeanbellavia]

Thanks very much much again for your valuable advice,thanks very much

[Leodo]

Hi, completely understand your feelings so hopefully the more people you talk to the better you will feel, watch and wait is used for small Tumors that may not get any bigger, so you may not feel it but this is good news. It may not get any larger? Every bodies scenarios are different (part of the problem). slightly bigger and gamma knife is probably the best option (pain free non invasive surgery that should kill off the growth of the tumor) My wife’s scenario. Keep your eye on the side effects hearing balance facial palsy etc. And on the size via an mri scan. surgery to remove is normally the last option, sounds like you are a way from that at the moment. Hope this helps feel free to ask anything specific. Good luck and keep talking

[IA786 in reply to Leodo]

Thanks very much for your kind words

[mcblue]

Go for the radiotherapy or gamma. My husband had a 38 mm AN with cyst removed may 2018 and has still not recovered from the translabyrinthe approach surgery. I don’t want to frighten you as I do know everybody has different results from this kind of surgery but my husband is now 54, he has had to be medically retired, he has lost all confidence in himself, has depression, has a BANA hearing aid which still doesn’t help with his directional hearing loss, suffers from short term memory loss and because he isn’t moving around like he used to has muscular degeneration and has now been diagnosed with fibromyalgia. Because of the size of his AN he didn’t have a choice of which route to go down he was operated on 2 weeks after the scan but after seeing what damage the surgery has done to him I would advise any other option but this surgery. Like I said I don’t want to frighten you a lot of people lead ordinary lives after this surgery my husband is on the extreme end of how people react to this kind of surgery but I think it’s only fair to let you know.

[IA786 in reply to mcblue]

Hi mcblue thanks for sharing and thanks very much for your advice thanks again

[sadie2009]

Hi there. Please don't rush into surgery. I have had both treatments, surgery on one AN as it was too large for radio S. My second one,yes a bilateral, has had radio S in jan 18. It's been stopped in its tracks. My only hearing on the radio s side is returning. The hearing on my surgical side is long gone. The recovery ftom surgery left me with facial weakness, complete deafness on that side and a looong painful recovery. I never considered conventional Surgery on my latter AN never. I would have declined. With radio you're prob a day patient, it's a good size for the treatment, you feel nothing at the time or afterwards. Good luck

[IA786 in reply to sadie2009]

Hi Sadie 2009 , thanks very much for your advice, thanks very much again

[smb1985]

Hi, I had my AN removed last year via the translab approach. It was 3.9cm so I didn't have any other options given to me but surgery. Because I had translab, I lost my 8th cranial nerve, have total hearing loss in my left ear and permanent balance issues. I also had complications, including a blood clot and raised CSF pressure. I have headaches most days still and am only now, more than 6 months later, getting to the point where I have enough energy to return to work. I wish it were as simple as just get it out and carry on as normal, but it isn't. I also had delayed facial palsy which thankfully has all but gone now but that was a challenge of its own. It's natural to just want the thing gone, and only you can know if the challenges post-op are truly worth it to know its gone.

[IA786 in reply to smb1985]

Hi, I wish you all the best and a speedy recovery, thanks very much for sharing, take care

[kinnea]

Hi IA786, I am 58. My initial AN was removed 27 years ago leaving me completely deaf on the left side and facially paralysed. The one positive from the op was that I was told that the AN had been completely removed, saving me the additional worry of having radiosurgery.

I was diagnosed with MS 10 years ago. I went along for an MRI scan in January 2019 (a check up on the progression of my MS) and was told that my AN had returned (a 17mm tumour). I was gutted, especially after being told 10 years post op that there was no tumour residue.

I find myself in the same position as yourself and don't feel comfortable about radiation in my head. It's the long term effect of the Stereotactic radiosurgery that worries me, the fact that the tumour is still there and doesn't shrink, the fact that if it doesn't work and surgery has to be performed the tumour is then more difficult to remove, the effect of radiation on the surrounding tissue, how long the radiation continues to be active, etc.

After much soul searching, sleepless nights, discussions with my partner and family, I have asked to be put on the waiting list for surgery.

Wife of Kinnea - this is my husbands account!

[drdeanbellavia in reply to kinnea]

It is better to have momentary "focused" radiation (via gamma-knife) in your head than it is to have a human in there with a knife. The problem with invasive surgery is that it doesn't kill the tumor, it just removes most to all of it. After gamma-knife surgery the tumor typically shrinks by 30-50%; mine shrunk 35% 18 years ago and is dead.

[kinnea in reply to drdeanbellavia]

Thanks for your reply. However I have been told that the SRS rarely shrinks an AN. I was told by the oncologist that the tumour will shrink back to the same size (after swelling) as at treatment. I think I have a lot more reading and research to do regarding SRS before I make my final decision.

[drdeanbellavia in reply to kinnea]

kinnea:

Go to the following site:

ncbi.nlm.nih.gov/pubmed/212...

Dean