Risk facial paralysis or live knowing there is a tumour in your head?
This is what it feels my current options are. Since my last post I have had appointments with two different surgeons regarding treatment for my tumour and I have seen a Neuro-Otologist who does not specialise in surgery but of vestibular (balance) assessment and rehab. I am sure for those reading this from Australia who are in the same situation as myself, you would appreciate knowing the identity of the surgeons I have seen. However, I do not wish to sway anyone’s decision or publicly express negative opinions (even by accident) toward any health professional.
So, for the purpose of my story we will call surgeon one ‘operate’ and surgeon 2 ‘watch’.
Monday 15 January 2018
I saw surgeon ‘operate’ and he confirmed my tumour is of medium size, just poking out of my inner ear canal (on an unusual angle) but still 1cm from my brain stem. He stated I have 70% hearing with 90% word recognition, so still good hearing. He believes we have a small window of time to have hearing preservation operation (Middle Fossa approach) preferably within the next 3-6 months. If it grows more than 2mm further in size it will be too big for this approach and therefore, too big to save my hearing. He explained it will be around 5 hour op, 1 night intensive care, 4-5 days in hospital and 4-6 weeks off work. During this procedure the balance nerve is cut which means you need the time off work to allow the other balance nerve to learn to compensate. Surgeon ‘operate’ seemed very confident that he could perform surgery and stated that permanent facial paralysis effects 2% of people and temporary facial paralysis effects around 10%.
All of this sounded promising, although scary. However, I was left still feeling a little confused around the success rates and risks. I wasn’t sure if the paralysis stats were based on his procedures, national or global. He stated he had performed around 300 surgeries on these tumours, 50 being the Middle Fossa approach he was proposing. Is 50 a lot? I have no idea. He stated facial paralysis is down to the skill of the surgeon whereas whether I was able to keep my 70% of hearing or not was down to luck.
Monday 22 January 2018
For those of you who have read my other posts you may remember I had been referred to a hospital for an MRI around March last year and they rejected the referral stating it was ‘inappropriate’. Well, over the Christmas period I made time to go back the GP who referred me and to show her my scans and the diagnosis. She immediately sent the referral back asking them to review their triage process. My intention here wasn’t to make a complaint, after all, I only presented with bad taste which could have been the sinus. However, I did want them to be aware for future cases.
From this I received a call from the hospital who said that their ENT who specialised in vestibular assessment and rehab wanted to see me. They ran a few tests and asked some questions and concluded that my balance is slightly off on the side of the tumour but nothing to worry about it’s certainly nothing I notice! The ENT was lovely, she took her time with us and validated what surgeon ‘operate’ said regarding size and also that it is growing on an unusual angle and stated he was a highly skilled surgeon. She said the 3 surgeons I have chosen for opinions are all excellent and said that surgeon ‘watch’ is very smart and very experienced in this field. and as I am young, fit and positive I would rehabilitate well. As soon as i have made a decision she will start arranging a physio for me. After this appointment I was beginning to feel a bit better about surgeon ‘operate’ and left feeling very positive.
Monday 29 January 2018
A week later it is time to go and see surgeon ‘watch’. I was excited to meet this surgeon as he had responded to my initial email personally (not his medical administrator) and he had phoned me on a Saturday to reassure me and to invite me to make an appointment. Surgeon ‘watch’ is highly experienced and regarded in his field, retired from surgery last year (so I hear) and has 30 years’ experience of treating/studying Acoustic Neuroma Tumours. I knew from his reputation in the ‘AN’ community that he swayed on the side of a treatment known as ‘watch and wait’. Basically you have MRIs periodically and see if it grows. However, what surprised me was his very strong opinion regarding my tumour and that operating should not be the course of treatment for me. He said my tumour (in comparison to others) is very small. He was very detailed in explaining where mine sat in the ear canal and showed me how it had double the width of my ear canal and as it is made of bone and difficult to widen, this meant it had been there a very long time. His team have been conducting studies on Acoustic Neuromas for 20 years and he said of 500-600 patients he had advised against operating on, only around 100 of them saw any growth in their tumour. He stated if he operated on mine it would not be until it was another 1cm in size (unsure why) and it would be the translabyrinthine approach (the one that results in single sided deafness)
The next topic was facial paralysis, he said this was horrendous, really awful and that I did not want that. He said with Middle Fossa surgery (the approach surgeon ‘operate’ offered) had unacceptable levels of facial paralysis and is the reason he and his team stopped performing it 15 years ago. He said not only is it difficult to live with a facial disfigurement but also it is hard because sometimes your eye won’t close, your face is numb and you can be dribbling food and not know. He was highly against the advise I had already been given and stated that although it was small, it was too big for the middle Fossa surgery offered to me by surgeon ‘operate’. They tested my hearing again and it came out at 73% which validated the first hearing test I had.
If I were to go by instincts and trust it would be this surgeon, he had such a great way about him. Very confident but sincere with it. Unfortunately, it is not that simple as it is not just a surgeon we are choosing, it’s an approach as well. We left feeling very confused, conflicted, and quite upset.
To sum up how conflicted we are, here is a list of pros and cons for each surgeon:
No more tumour
|Brain surgery||No brain surgery||Only procedure available if it grows is the translabyrinthine approach which results in going deaf in that ear|
|Short waiting list||2% chance of permanent or 10% chance of temporary facial paralysis. Cannot validate these stats and heard conflicting reports around this||It may not grow (only 100 in 500-600 grew in this surgeon’s patients) National/global stats unknown||Living with a tumour, not knowing if it’s growing|
|70% chance of saving hearing||30% chance of going deaf in that ear||30 years’ experience||6 or 12 monthly MRIS – these require contrast which some studies show is bad for you, backed up by medical professionals not wanting them too often|
|Hospital close by||Balance retraining||Performed 1,000+ removals. Stopped Middle Fossa 15 years ago due to unacceptable rates of facial paralysis||By the time it grows 1cm bigger I could be 10 years older – I imagine I would recover quicker now|
|15 – 20 years experienced||4-6 weeks off work||Due to being on a temporary visa we do not know where we will be living in 2 years and will need to go through this all again|
|Performed 300 AN removals, 50 being Middle Fossa||Some risk of long term fatigue (this runs in my family so concern around this)|
On Thursday we have our third and final surgeon to see and we hope from there we will be able to make a decision.
Disclaimer: As always, I am NOT a medical professional. The above is based on mine and my husbands memory of appointments whereby we were both under emotional stress and therefore may not be 100% accurate. Do not use the above to make decisions on treatment for your own tumour.