Hi,
Brenda wrote
“Like Phyl and Jan have said, don't second guess yourself. It will dry you crazy!� I don’t know I agree. I would like others to learn from my mistakes –not repeat them.
As I am at almost at the 6 month mark and dealing with synkinesis (which I would like to say is
not walk in the park) I am beginning to think I did
not make the best choice. Because there was an element of doubt that my tumor was not an AN tumor but a meningioma- I chose the retrosigmoid. The rationale I used was that if we pulled out a meningioma through the translab and sacrificed my hearing (directional included) for nothing -I would be kicking myself later. If I had known for sure it was a AN tumor- than I would have chosen the translab.
HEI had once advised me of this and that I go for the Baha implant simultaneously with the translab surgery (i.e. do it all at once). Other private institutions also suggested I go with the translab. The universities tried to get me to question this and were apparently successful at having me do so. (We do need to ask questions- this is how we learn)
In
Daisy-Head Mayzie story by Dr Suess…
… there is a happy ending as Daisy gets to go back to her classroom … I don’t see going back to my classroom any time soon…
Currently I feel like I was university experiment…
Now I am consumed with more research on facial therapy and also trying to decide what sort of hearing aid I should use (transear, cochlea implant, baha etc) to which none will replace the directional sound I have lost… At this point I would just like to move forward in my life outside of the acoustic neuroma- but I can’t just yet.
My ‘gut instinct’ was to have the translab with the old guru and have the translab and the baha screw implanted at the same time. Somehow I turned in my tracks and decision making process. I am beginning to think that my surgeons would have had better visibility of my facial nerve with the translab approach … and I probably would have had a shorter length surgery than the 11+ hours – as I am thinking the retrosigmoid made it more tricky an access point to both the tumor and the facial nerve it incased. (They
did need my autologous blood, ie self donation, for transfusion -after all) I was told there was a marginal 2 % higher risk of facial nerve damage. Now it appears I came in at that 2%. I do have my smile back and “my life�- to my surgeons I am most grateful for this. (I still have the utmost respect for them and they did an excellent job of dissecting a very adhesive tumor from a tricky angel point.) The synkinesis is the result of a stretched facial nerve (maybe this would have happened with the translab too.
I do not know.) The new growth nerve branches are attaching to the wrong muscle. (i.e. there is nerve cross-wiring). I made a choice – and that I will have to live with for the rest of my life.
"If" the synkinesis goes away and I can eventually raise my eyebrow, move my bottom lip and flare my nostrils… then I
will change my tune here. Currently what I am reading, and the lack of answerers I am getting from physicians in my region, – I am guessing that the nerves will continue to grow down the wrong channels and what is happening now is irreversible. Once the damage has happened I am questioning now how much normalcy will return to the facial movement.
We do need to reflect on our choice. I can’t say “
would-a, could-a, should-a� etc as this will be counterproductive to my recovery (especially mentally and spiritually) but I think it is important to share not just our successes
but also our mistakes (and falls). I don NOT want others to repeat my mistakes… I want them to learn from them (perhaps this is why I was a teacher) and to keep moving forward.
Denise,
If I had had the size of tumor that qualified for radiation I would have made an appointment to discuss this option with a surgeon, who is highly reputable, in that treatment option specifically … but that door was closed to me due to my large tumor and the brainstem involvement.
I think if that door is open to you then look inside and see what you think and how it compares. Some of us wish we did have that option. Many of us will admit that the loss of directional sound IS a big deal.
Look at ALL options and make an informed decision.
I want Denise’s outcome to be better than mine. I also want all outcomes to improve with time as all patients, surgeon and physiotherapists
honestly share their experiences for the common good. I truly hope in the next decade (and the next generation) of people- will truly understand much more about Acoustic Neuroma and the options to treating these.
I also hope that in future cases (and generations) there will be enough sharing of information so that we will eventually know the real ‘cause’ of AN… Currently, as the ANA, we are focusing on ‘treatment education’. Once “a cause� is know than hopefully there will be more focus on ‘prevention education’… but we are
not there yet. The definitive cause has not yet been discovered.
I think it is important to share our successes
and mistakes of our decision making process- so future patients, surgeons and therapists can learn from
both aspects.
I will continue to keep you in my thoughts and prayers
Peace,
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