UPDATE AFTER 9 MONTHS OF ENDOSCOPIC SURGERY

[Arasha]

Hi Everyone,

I just want to share my recovery after  the endoscopic surgery :

1. My face is improving,  I can smile almost full smile, but I can not show all my teeth.
2. I can close my eye strongly, but I do not have tears yet. My vision is perfect!!!
3. My tinnitus is still there, as I read in this forum it will not leave me alone so, better I start acustomizing
4. I had tests about my hearing and the result is "O" in my AN side, but the right ear is excellent!!!
5. I had a test about the muscles of my face and all of them are working, the doctor said that my muscles are recovering 1 mm per month, but fortunatelly some day I will have my full smile back.
6. I had phisical theraphy(12 sesions), balance theraphy (12 sesions), etc etc....and acupuncture(8 sessions).
7. I got an MRI and the result is it that the tumor was resected completely (maybe it was too soon to do that but I feel very good!).
8. My balance...so far so good.  I run everyday, it is my passion , last sunday I run 1/2 marathon,with a time of 2h8min.

Well, I had a retrosigmoid surgery to keep my hearing but it didn't work , I don't blame to the doctor, my opinion is that he did his best. I was expecting to have my face back within the 7-9 months as the doctor said but still it will take time, I think  my face is 70% recovered, the 30% maybe will take 4 or 6 more months , uuffff  driving me crazy!!!!

Every morning when I wake up I go straight to the mirror to see my improvementes, sometimes I feel dissapointed but sometimes I feel happy when I can see another wrinkle in my AN side ( in other situation I could be grumpy, but now I want to see more !!! even that I am 37 years old!!)

Well, what it is really bothering me is my hearing, all of you can understand me, when the ambiance is so quite i can hear very well, but in a supermarket for example it is very difficult. I do not want more surgeries in my life, I dont want BAHA implant, ANY IDEAS?

Thanks in advance for your time. I wish a good recovery to all of you, only people who experienced this can understand us, nobody else!! not even the doctors!!!.
Gloria

[sgerrard]

Hi Gloria,

Nice update, with some definite bright spots in it, which is always good to hear. We don't get too many reports on endoscopic, so it is nice to have an example.

As far as I know, if you don't want a BAHA, then TransEar is the way to go for SSD. I suspect you will always find noisy supermarkets a bit of a problem, though, I know I do, with just a regular hearing aid. Your progress on regaining facial nerve function sounds good, even if it is slower than you would like.

You're comment about "not even doctors" understanding reminded me of a visit to my ENT before I had treatment. After lots of discussion, on my way out, I said to him "You've never had one of these, have you. Maybe you should try it sometime." He gave me a quizzical look, realizing that in fact he hadn't, then quickly shook his head, saying no, I don't think so. The doctors have basically read about symptoms, heard lectures about symptoms, and discussed symptoms, but for the most part, they have never actually experienced them. In one sense, they really don't know what they are talking about.

Take care,

Steve

[Arasha]

Hi Steve,

Thank you for your reply, I was searching online about Transear, so far I think it is the best option. I have not seen the doctor since my surgery because in Ecuador we dont have doctors specialized in AN topics.  Dr. Antonio de la Cruz from House Ear Clinic was visiting my country (Ecuador) for a seminary, I was planning to meet him but we missundertood the date of the appoitment and I missed him  .  I heard good comments about HEC, hopefully someday I can meet a doctor over there. I do really need an aid for my hearing.
Thank you for your support,
Chao,
Gloria

[Jim Scott]

Hi, Gloria:

Thanks for your informative post.  I'm pleased to learn that you're progressing on a variety of fronts and share your hope that you'll be back to normal, soon.  The TransEar is a very effective device.  I don't have one but I've read many glowing reports on these forums regarding them so I think you should look into this hearing device. 

I'm also pleased that you've found these forums helpful, which is their purpose.  Please keep us updated on your progress.

Jim

[Arasha]

Hi Jim,

Thanks for your time and support. I am starting to find out the way to have the TransEar. It would be very nice if I can test the aid before purchasing it, well I have no idea where to start to find it but I will figure out.  I am not very confident about having an excellent result with an Aid, I just want something to help me, it is horrible not to know where the noises or voices come from.  I know that nothing will be the same for the rest of my life.  When I went to the operating room my hearing was very well, I lost it few days after the operation, I don't know what happen.

Finding this site it has been a good way to find out a lot of topics, honestly I found here more information and replies to my questions than any doctors could give me.  Thanks to everybody.

Gracias,
Gloria

[Tumbleweed]

Thanks for the very informative post, Gloria.Yours is the first one I've read that details recovery after endoscopic surgery, so it's much appreciated.

May your recovery be speedy. 

Best wishes,
Tumbleweed

[Arasha]

Hi Tumbleweed,
Thanks for taking your time to read my post. I would like to know how other people who had endoscopic surgery are improving.

Cuidate mucho,
Gloria

[Esperanza]

Hi Gloria,
Was also interested to read of your experience.   Although I haven't had any treatment for my AN yet, I have experienced total SSD since January and can tell you that the supermarket experience WILL get better.  When I first shopped I felt so upset at this strange new world and all I could hear was the fridge units buzzing but I obviously spend far too much time shopping for food as now it seems, well kind of normalish!!
I do have to be more carefully where I sit when out with a crowd etc.  but generally I cope very well I think!

Hope you continue to steadily improve!

x

Oh and I will certainly be one of the first people in England to try a Transear - when they get here!

[Arasha]

Hi Esperanza,

I agree with you, I felt so upset also when I started to live in this new world, strong noises are still bothering me, even asking people many times REPEAT PLEASE!! bothers me !!!!. I haven't meet my friends, some of them don't know that I had this, I just has been hiding from them and giving them many excuses.  I know  maybe I am wrong but I always took care a lot about my face (cosmetologic at home every week, saloon every friday, massages etc etc), I just don't feel good going somewhere with this face.  The other day I saw a friend at the mall, my face it is not obvious now but I was very quick with the conversation, I felt horrible!!!!.  Well JUST A MATTER OF TIME!!!!

I will keep you posted when I get my TransEar.

Take care, as my husband says: EVERYTHING WILL BE FINE !!!!
Un abrazo,
Gloria

[jerseygirl]

Gloria,

Congratulations on all your improvements! There are more to come, I am sure. Keep us posted!

              Eve

[Arasha]

Hi Eve,

Please tell me when did you have your surgery and how is your recovery doing, did you meet again Dr. Shahinian? is everything according to your expectations? Do you have an Aid for your hearing? what kind, how does it work?, how is your balance, do you have tinnitus?, sorry if I ask you many questions.  You are the first person that I contact who had endoscopic surgery like me.
Take care,
Gloria

[jerseygirl]

Hi, Gloria,

I am doing just fine and I am absolutely thrilled that you are improving as well! I had lunch with a few other ANers in NY (so much fun!!!) and you can find my picture here: http://anausa.org/forum/index.php?topic=6667.90

I am really glad that I went to SBI.The surgery was fast and easy this time! I had a regrowth at the brainstem and a horrendous (almost barbaric) first surgery, so my anatomy was already altered coming into the second surgery. This is just to let you know that I started after surgery worse off than any newbie with the same size tumor. I am pleased that everything is resolving and I am getting back to normal functionally wise. My balance is still what I consider poor because I can fall off my feet when I am tired and have to look at the steps when I go down the stairs but that has to do with the first surgery (I won't bore you with horrible details). I did it once before and I will do it again: my balance will be good! I control tinnitus with Ginkgo Biloba; it works for me.

I purchased Transear in January this year and I am a happy user. It is very helpful but it is not a replacement for your ear; nothing currently on the market is. Transear is very helpful for hearing gossip and soft (mostly female) voices on the deaf side but it is not as helpful in noisy conditions. Apparently, after living with single sided deafness for over 20 years, my other ear became exquisitely sensitive and I can pick out the voice  I need in noisy environment and suppress the noise around me.

Take care you too!!!

                 Eve