Had surgery in 7th May

[DraganMihai]

Hy guy's, I am know tired and also scared of my new life....so if I am incoeherent, if I make spelling mistakes or if I repeat other topics I;m really sorry in advance, please understand me....To make my story short. I'm a 25 years old male from Romania who just had surgery on 7th May so this is my 4th day after surgery....I discovered my Neurinom accoustic on a RMI(3cm/3cm) this year after I observed big hearing difference between my left and right year and a continuos noise in my left ear. I will try and describe as short as possible my experience....the operation took place in Bucharest(Romania) and for me it was like...it never was...it went so fast...I arrived Sunday night in Bucharest, went to sleep, the next day the doctors woke me up at 7am...all I remember is that I took some kind of long soccer socks and followed a doctor in a room where I layed on a table and...I woke up after 12 hours with my mind trying to figure out what just happened and how many needles and other stuff I had on my body...so this was it...7th May surgey day- 11hours...I stayed 2 days in hospital for investigations and perfusions and thursday I went home..now 4 days post surgery....i feel strange...I cant cry with my left eye, my left face is a little numb and my left hearing is...I dont know...much worser than before surgery...My questions are: 1. Are these symptoms normal for my situation 4 days post op.? 2. Are there chances that my left hearing can improve itself or will I be deft from left ear or it is to soon to say? 3. What should I do in these month off? I stay like all day on pc and tv...which I know is not good...so If you have any advices regarding the recovery period and if I can trick my hearing somewhow to regain it? forceeing my left ear more maybe? Any advice is apreciated...I'm so glad I found you guys, and know I'm not alone with these problems

[LakeErie]

I believe the best advice for you now is to realize that your recovery is just beginning.  Four days is not sufficient time to evaluate your condition or any complications from the surgery. Many complications immediately following surgery are temporary and can gradually improve. It's best to take one day at a time and appreciate any small changes as they occur. As others here will tell you,
everybody heals differently and often at his/her own pace. That said, any problems that may arise for you will be familiar to someone on this forum who can share his/her story with you. I believe you will realize with time that your complications either improve or you learn to live with them easily. I can assure you that I myself have found that to be true with my complications. I understand the desire to be better all at once, but easy does it, especially at first, is a better approach. Your questions will be responded to eventually. so stick around and keep asking them. Good luck

[Tod]

Welcome to the far side of surgery!

Most important things you can do are:

1) Follow doctor's orders.
2) Rest.
3) Walk.
4) See doctor's as required.
Repeat as needed.

Be easy on yourself as healing takes time. However, walking is a fundamental activity that has great healing benefits beyond strength - improving your balance, for example. I was home for three months following a 32-hour surgery and the more I walked, within reason, the better I felt.

Good luck to you and keep us posted,

Tod

[Cheryl R]

The first couple weeks after surgery one can feel very tired and not good at all.     Then it slowly starts getting better but can take longer than you think it should to feel more normal.    Don't over push yourself as it will get better.   Try to get out and walk when you can and take lots of naps.     It can get boring because one isn't up to alot of activity.             It is hard to say about your hearing but one gets more used to the loss of it in time.   Make sure your are putting a heavy type eye drop in your eye if it is dry as sounds like there might be some.                    Keep us posted in how it is going and we can be of help for any questions.           It's not an easy time and I wish you well!             Cheryl R

[leapyrtwins]

The first few days and weeks post op are the hardest.  Most people progress as time goes on.

Hang in there and be patient (I know that's hard to do).

Best,

Jan

[DraganMihai]

Thank you very much for your responses, it really helps as I kept it a secret, only my family knows my situation and it is very hard for me sometimes to 'suffer' alone so to say. I will try and keep you informed about what I observe as time goes by. Today is exactly one week after surgery and things begin to feel much better, both phisycal and mental. My taste was very sour, even candy's felt sour, now is slowly beginning to come to normal. I couldn.t feel my right ribs at all and now I have pain where I didn't feel anything for 1 week, which is great. When I touch my left face it hurts like Mike Tyson knocked me out, which is also great:)....I don't know, I think we humans get used to our situation slowly, whatever it is because normal is what you are used to...I'll write more about my situation, because there's more to observe but I'm just to tired now...I wish you all well untill next time...

[Jim Scott]

My questions are:

1. Are these symptoms normal for my situation 4 days post op.?

Yes.

2.  Are there chances that my left hearing can improve itself or will I be deaf from left ear - or it is to soon to say?

Too soon to say but keep your expectations (for regaining hearing) low.

3. What should I do in these month off? I stay like all day on pc and tv...which I know is not good...so If you have any advices regarding the recovery period and if I can trick my hearing somehow to regain it? forcing my left ear more maybe?

Walk as much as you can, rest as much as you need,  You cannot 'trick' your hearing nerve to function. Hearing will improve or (likely) not.   

As previous posters have stated, have patience and know that things will improve with time.  Contact your doctor if anything seems wrong.

We're not doctors but we've all been through some type of AN experience and want to help you as much as possible.  Please try to stay connected here and keep us updated if you can.  Thanks.

Jim

[Suu]

G'day DragonMahai

The others (especially Jim  ) have given great advice to you.
Come here as often as you can to get some answers and ask your doctors for the answers that you can't find here.

We all behave in different ways and reactions vary widely to how we handle the post operation time.  I'd love to hear from you again soon to tell us how you're going please?

Hugs and best wishes to you

Suu xxoo

[DraganMihai]

Hello again,

I will post more about my simptoms but for now I have only one question that keeps my mind busy and from what I see you are extraordinary people with allot of wisdom, so please who can give me an answer...your personal oppinion is enough.

I asked the doctor  "Ok I have these acoustic neuroma, I accept it because I can't do anything to change that I have it, but why me? I want to understand what I did to create this neuroma? Or was I born with it? Was I from beginning more susceptibil to making this neuroma?" ....the doctor told me something general that "this neuroma just appears, it could be from birth or it could appear anytime in our lifespam" which I understand that is the general medical answer but I need to understand...WHY? The doctor told me that" in general the neuroma grows 2-3 mm a year so maybe I have it for 10 years now but it is not a rule" so I had something, maybe 10 years?

SELF MADE
Could computer radiation create this, if you work like 10 hours everyday on the pc for like 5 years? I had a first part of my life very healthy, played soccer 12 years(2hours everyday training) combined with 7 hours of school a day didn't have time or energy for anything else that could damage my health(pc, tv, alcohol, cigarets, bars and stuff like that) but after 19 years old went to colleague and untill now I think ,I worked, played etc. on the pc like 10 hours a day for like 5 years but did almost everyday sport so it was something like 10 hours- pc and 1 hour- sport everyday, which I think is not so bad looking at other peoples everyday program...I don't drink alcohol, I don't smoke, I was always healthy and fit....so what did I do wrong?

GENETICALLY MADE
I remember always beeing more sensitive at loud noises from a young age:
- felt strange in club's were the music is so loud and everybody else was just fine, so didn't go so often
- was with my family at a formula 1 grand prix in Budapest(aged 16) and remember that I couldn't stand that loud noise at all, it was like a nightmare for me but everybody else was cool about the noise and looked at me strangely
- 2 hours a week for one year I was soccer referee(and still am), and I had a whistle which I had to blow it very hard, very often...it hurt my ear everytime i blow the whistle untill it got used to it but after the soccer game was over I was feeling strange(heard noises in my ears much time after), but thought it is normal untill i complained to my colleague referees and they all told me that they are ok after the game is over. My symptoms were much stronger in comparison to them


Sorry for writing such personal things, I know everybody has enough personal problems but I would appreciate a thought, oppinion because I want to know what caused my neuroma....if it is more genetically I can deal with it and fight with life as it is, but if it is selfmade I would be angry at myself and change my lifestyle...

[Jim Scott]

DraganMihai ~

Most every AN patient has similar questions that come down to: how did this happen to me?  It's normal to question how & why the sheathing on their 8th cranial nerve grew into a (benign) tumor that impacted their health and necessitated surgery and/or radiation.  Unfortunately, science doesn't have an inclusive answer.  There is a some consensus in the medical community that the AN patient lacks a suppressor gene that allows the Schwann cells to grow beyond what is normal growth.  Why is the gene lacking?  They don't know.

The 'trigger' for AN growth is also unknown.  Many AN patients were otherwise very healthy (I was and still am) and many never used cell phones, attended very loud rock concerts, sat in front of a computer all day or any of the many reasons some believe the AN manifested itself, so there really is no consensus on that issue.  Frankly, we may never know, at least in our lifetime.  Well, mine, anyway (I'm ancient). 

I don't think it is useful to seek out some unprovable reason for developing an acoustic neuroma - so I don't.  Most human beings have some sort of medical issue to deal with at some time in their lives.  Some have these health issues for many years.  Some prove fatal.  An acoustic neuroma is problematic for many AN patients but the problem is open to being remedied and one recovers, albeit never as quickly as we might prefer.  I would suggest that while research can be helpful, at some point one has to chalk up developing an acoustic neuroma to 'fate' and simply deal with it as best you can.  Remain as healthy as possible and be grateful that the tumor was benign and operable.

Jim

   

[mk]

Hello Dragan,

Jim has covered pretty much your questions. Most of the times these tumors are spontaneous and there is no explanation as to whether someone can get them. There is a genetic condition, called NF2, which results in the appearance of multiple tumors. This is a rare condition.
 
As your doctor pointed out, these tumors are very slow growing and you likely had it for years. Given that you are 25 now, it is not unlikely that it started to grow 10 years ago, since you were 15. This could explain the hearing sensitivity that you described.
I was also diagnosed with a 3 cm tumor when I was 38. I was totally asymptomatic, but after being diagnosed, and thinking about it, I think I can tell that it first started to grow about 12 years before - back then I was experiencing unexplained fatigue, that my doctor had attributed to an iron deficiency. My husband had also noticed that I couldn't tolerate loud noises. So now I am convinced that this was the reason.

It seems to me that you have done really well given the size of the tumor and the difficulty of this surgery. The most important thing is that you are not experiencing any severe facial weakness. Lots of us have dry eye, it is a result of injury to the facial nerve, but it can be dealt with eye drops. Hearing is very difficult to preserve - give it some time to see if there is any left. If not, there is really nothing that can be done, but most people adjust to SSD (single side deafness) quite well.
My advice is to take it easy, rest a lot, and walk as much as you can to help your body adjust. Feel free to ask any questions.

Marianna

[Suu]

Hi again DraganMihai

"Ok I have these acoustic neuroma, I accept it because I can't do anything to change that I have it, but why me? I want to understand what I did to create this neuroma?

IMO - nothing.  It's that simple.  Some people get pimples and others don't. Some people get cancer who don't smoke while others who do smoke, don't get cancer.  Some people have blue eyes even though everyone in their family have brown eyes. Some people get hit by a truck and others don't.

As Forest Gump said poo Happens.  It happens to nice people like us and it also happens to horrid people.

It isn't the fact that we got an AN - it's how we react to having it.  We can choose to wallow or we can choose to come here, and to other sites, to help people understand how to handle the outcome of getting one. You are doing this now with your posts and I want to thank you for helping others by asking questions and giving us your story about your AN journey.

We are the lucky ones.  We got diagnosed in time and we get to live. What a gift we are given!

Lovenhugs,
Suu xxoo

(Suu, had to slightly clean the asterik word.   Thanks for understanding! Phyl)

[kixit]

Hi again DraganMihai

"Ok I have these acoustic neuroma, I accept it because I can't do anything to change that I have it, but why me? I want to understand what I did to create this neuroma?

IMO - nothing.  It's that simple.  Some people get pimples and others don't. Some people get cancer who don't smoke while others who do smoke, don't get cancer.  Some people have blue eyes even though everyone in their family have brown eyes. Some people get hit by a truck and others don't.

As Forest Gump said poo Happens.  It happens to nice people like us and it also happens to horrid people.

It isn't the fact that we got an AN - it's how we react to having it.  We can choose to wallow or we can choose to come here, and to other sites, to help people understand how to handle the outcome of getting one. You are doing this now with your posts and I want to thank you for helping others by asking questions and giving us your story about your AN journey.

We are the lucky ones.  We got diagnosed in time and we get to live. What a gift we are given!

Lovenhugs,
Suu xxoo

(Suu, had to slightly clean the asterik word.   Thanks for understanding! Phyl)

Love this!! It's all in attitude 

[DraganMihai]

Hello dear colleagues,

I am back with you after almost 4 years, I am sorry for the long absence but this is life, sometimes you don't have time for anything.

I just read the whole topic again and want to thank you all for your answers.

What can I say about my life in the last 4 years since I last visited you. Long story short, I don't want to brag because some people are in real suffering and I don't want them to envy me or some sort.

WORK, CAREER, MONEY....

    Since AN in 2012 I worked for Genpact(multinational worldwide outsourcing company) as an accounts receivable with german language untill may 2013.
    I resigned than and took the whole year off, untill 2014.
    From march 2014 to february 2016 I worked for Emerson(a very big worldwide company) as an Order Handler with german language.
    From february 2016 until present, I work for my fathers company, moved back to my hometown, Bistrita(70.000 population), from Cluj-Napoca(400.000) a much bigger city.

PERSONAL LIFE

   My girlfriend since december 2005, became in october 2015 my wife and is now pregnant in 2 months and if everything goes according to schedule in september I should be a father:)

So alot of good things happened to me in the course of these almost 4 years.

I will come back with further informations if somebody is interested, but I don't have the necessary time right now.
If somebody is interested how I feel about AN, what symptoms I still have, and how it changed my life, how I see things, don't hesitate and write a reply so that I know somebody is interested in my personal story/opinion.

Thank you,
Mihai