son diagnosed woth acoustic neuroma, , what kind of care will he need post surge

[mertzirose]

hi, everyone, my name is roseann and my son has been diagnosed with an acoustic neuroma about 4,5centimeter and we are awaiting his surgery, what id like to know is  after his surgery, will it be necessary for me to take a leave of absense from my job to take care of him, im worried about the dizziness and his balance and coordination , will he have to be lying down most of his recovery ,or will he be able to move about, im very worried about this and how long does the dizziness last my husband and other children want ot be able to help in his recovery any way we can so any advice would be greatly appreciated!! Thankyou so much!!!

[jaylogs]

Hi Roseann!! Welcome to you and your son to our little club...I'm sorry you had to be here but this place is great for info and support!! The first thing we tell everyone who come on for the first time is to breathe....keep calm...relax....repeat! This is an overwhelming process, both pre and post surgery.  How old is your son?  Another thing about these buggers and the person it affects is that EVERYONE is unique, so it's kind of hard to judge on how your son will do.  But I can tell you how I did, with a small tumor (mine was 8mm). After surgery they expect you to be up and about as soon as you can, especially if your balance is off.  The more you are on your feet, the better your balance system can start compensating. Plus its just plain healthier to be active. Of course, you don't want to overdo it...as brain surgery is major surgery.  So I was up and going days after.  I was out on medical leave for two months, and I could have used another month.  I had  a wonderful support system to help me, with my wife and inlaws and kids looking after me.  I was able to be by myself after about 3 weeks.  The  dizziness still exists today (after a year and a half) but the worse of it left me after 3 months.  But I wasn't ALWAYS dizzy 24/7, it's just was good having someone there to watch me.  Again, everyone is different...some people bounce right back.  So I hope this helps...others will chime in but please continue to ask questions...we're here to help! BTW, where are you going to get your surgery done and by whom? Good luck and keep us posted!
Jay

[Kennystiebs]

hi jay, thankyou for your input, my son has joined this forum his name is kenny,in fact you replied to his posts, he is twenty two,i think its great that he and i can have an outlet to go to when it comes to this subject.i feel so bad that he has to go through this at his young age, he will not be able to go back to school in september as he is almost ready to graduate from college, i know in time he will be ok,and as i said he has a great support system behind him, i just wish i could take this away from him, im showing my motherly concerns,but i cant help it, as i said ,we are awaiting a date for his surgery, right now our neurosurgeon is on vacation,so the waiting and anticipation of this is killing us and i know it is constantly on his mind, he doesnt show it but i know he has a lot of anxiety about it. The surgery will be done at the University of pennsylvania hospital in philadelphia,we have every confidence in our doctors we have done a lot of researdh on them and the hospital.Hopefully we will know by the end od next week, keeping my fingers crossed!!! Thans for replying back,jay, it feels good to know that there are good and caring people out here even though they dont know you!!!

[mk]

Hello Roseann and Kenny and welcome.

This is an overwhelming diagnosis at such a young age, and the AN is fairly large. I suppose you have discussed with your surgeons the possible outcomes and complications. I see you are quite worried about the balance and dizziness, so I will comment on those.
This sounds couter intuitive, but very often patients with large tumors recover more easily from surgery in terms of balance than patients with smaller tumors, because their other side has already compensated. Generally when diagnosed with a large AN, this means that it was growing undetected for years. In the process, most likely the vestibular nerve is already affected, and the other side has started to compensate. Has the doctor ordered a VNG (vestibular test?). This test can detect the degree of weakness on the affected side. I had an almost 3.5 cm AN, and my VNG test revealed that I had 90% weakness on the affected side. But the other side had compensated, therefore I didn't realize it. After surgery, I didn't have any dizziness or imbalance - I was able to walk without a walker by day three. After a week I was able to go for fairly long walks, after 10 days I even visited a mall.
Kenny is young, and assuming that he doesn't have any of the major complications (like CSF leaks, strokes etc), he should be able to get up and about in a few days. Actually doctors and therapists do want you to get up as soon as possible, because this is a crucial step in your recovery. Typically you shouldn't expect a bed ridden patient who constantly needs attention. On the other hand, he will need lots of naps, rest, walks and he must take it easy. It is wise not to go back to school in September, better to wait for a term until he feels up to it.
Don't hesitate to ask more questions, we are here to share our experiences and help as much as we can.

Marianna

[mertzirose]

thankyou,marianna,  i am feeling a litlle better after having heard from you, i know it wont be easy, but i will be there as will my whole family for kenand i will do anything to make this as easy on  him and us as possible!! Keep any advice you have to give coming, it will surely be most appreciated,will keep everyone posted as to when we find out the date of surgery!! Again thankyou so much!!!     Roseann

[Jim Scott]

Hi, Roseann - and welcome ~

You seem like a great mom to your son.  I note that previous posters have offered you excellent advice and information.  I too, presented with a 4.5 cm AN back in 2006.  The neurosurgeon I consulted offered me a plan that would involve more time and effort on my part but would increase my chances of a satisfactory, complication-free surgical outcome.  He offered to 'debulk' my large AN, effectively 'gutting' it down to a relatively thin membrane that would be amenable to later irradiation and, in the process, severing the tumor's blood supply.  This would , presumably, protect the facial nerve from being affected and still give me relief from my symptoms.  Then, following a 90 day 'rest period', I would undergo 26 FSR 'treatments' intended to destroy the remaining tumor's DNA and, in effect, 'kill' it.   

The 9-hour surgery went splendidly.  My pre-op symptoms (intermittent 'stabbing' pain at the AN site, dizziness, loss of the sense of taste, fatigue)  disappeared and I suffered no complications; no facial paralysis, headaches or even post-op nausea, My sense of balance improved daily and I was released from the hospital 5 days after my surgery.  My recovery was swift and uneventful.  I resumed driving (with my doctors permission)  two weeks post-op, and had no real problems doing so, including highway and night driving.  My stamina was compromised somewhat and that never quite returned at 100%.  However, I was 63 years old at the time of my surgery so I have to assume that my age was a factor.  The FSR treatments were easy and almost boring.  Approximately 45 minutes five day per week for six weeks (weekends off).  I drove myself on the daily, 60-mile round trip to the radiation center.  My neurosurgeon pronounced me in the 'top 5%' of his AN patients in terms of recovery.  Both doctor and patient were delighted with the outcome of my AN experience.  Five years hence, I'm doing great. 

With a positive attitude and family support, I'm sure Kenny will do well, too.  Remember, we're here to help and support you both.   

Jim

[Chances3]

Hi Roseann,

I'm sorry to hear about your son.  That's as negative as I'm going to get.  I have three grown sons, my youngest son had two surgeries, so as a parent I know your angst.  I had my AN removed last year, I'm 55 years old.  The first few days in recovery can be challenging with the room spinning.  But in time it goes away.  Walking and getting around is going to be helpful, but there is fatigue, rest and sleep is also very important in recovery.  After a few months I had to go for vestibular therapy, all of this was so new to me, but if he is having a difficult time with balance, your doctors might want him to have that therapy. 

This site is fantastic and it is filled with wonderful people who truly understand what we all have to go through.  As you can see, I'm a newbie here, but never hesitate to ask questions or to vent your frustrations, you will get a response from a caring individual.  So my parting advice, try and relax, it sounds like he is in very good hands.  Your son is young, he should bounce back in a short time. 

God Bless !

[mertzirose]

Hi, everyone,

I just wanted to say thank you to those who have responded to my post and answered some of my questions.  I am having a little less anxiety about what is to happen to Ken after reading your stories.  I know he will be in good hands and I have a lot of faith in the doctors that all will go well.  Anyway, we still are awaiting the day of his surgery and I will keep you all posted of when the time comes.  That day will be the hardest for me and the rest of the family, but till then, keeping positive thoughts!!

                                                                                         Thank you again for your concern,
                 
                                                                                                       Roseann

[mertzirose]

                    Hi Guys,
                      my son ,is planning to go on vacation with his friends in a couple of weeks, we still dont have a date yet for his surgery ,and we dont know when his doctor will be back from his vacation, do you think it would be alright to let him go with his friends, he will only be 2 hours  away from home and he  is not showing any sign of his conditioning worsening , i already called the doc office so that they know so they wont schedule the surgery  on his vacation week which is ithe first week in august. i was wondering if you guys thought it was ok for me to do that, i just think it would do him a world of good to get away and relax a bit before he has to be laid up for awhile.
                                                                    Thankyou for any advice ,
                                                                                      Roseann

[LisaP]

Hi,

I am not a doctor but I think it would be great for him to go away and relax as long as he feels up to it.  It probably would be good for him to have a good time and take him mind off his AN for a while.

LisaP

[CHD63]

Hi Roseann .....

Adding my welcome to this discussion forum of many supportive new friends, who have walked this journey.

A couple of things ..... if you have not already done so, send for the free ANA informational packet (see:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet ).  These materials contain a wealth of information and much reassurance.

As Jay already said, each of us is unique in our post-op situations, so it is difficult to say how Ken will do.  Much depends upon Ken's overall health going in to surgery, the size and specific place of his AN, whether it is a sticky tumor (making it more difficult to remove) or not, length of time needed for the surgery, and the skill of the surgeon(s).  If his surgery is on the shorter side (given the large size of his tumor) and he has no complications, he should do well in recovery.

My original tumor was 2.6 cm at removal three and a half years ago.  I was initially very disoriented and used a walker for the six days I was in the hospital.  Post-op it was determined I had no vestibular function on either side (extremely unusual) so I used a cane for several more weeks and had vestibular rehab for months.  Because my husband needed to return to work, for his peace of mind our daughter-in-law came to stay with me for a week after returning home (roughly the third week post-op).  I truly would have been all right by myself.  I quickly learned to stay close to furniture and/or walls when walking for security.

The big thing is avoiding falls and I know that is a major concern for you.  I also know that sometimes leaves from work have to be arranged for far in advance.  If I were you, I would arrange for a leave with the understanding I could cancel it if Ken is fine and you could safely leave him to go to work.  It is important to have Plans A, B, C, and D in mind depending upon how well he does.

As for the vacation time, in my mind, that would depend upon how he feels.  I certainly would want him close to a medical facility, but it sounds like he will not be far.  With a 4 to 5 cm tumor, if he notices any change in his symptoms, he should immediately contact his physician.

Just my thoughts.

Many prayers.

Clarice

[kim508]

Hi rosann and kenny...
I am 23 now and had my surgery when I was 21..it came to me as a big shock..iam an active person and spring break of my senior year was not like I planed after having a 12h sugery..mine was also a farly large size..almost 4cm..but the good and bad news is your young..thats what everyone tells me..so I actually starting runing again after 3months..very slowly but that was with some balance issues after surgery...my biggest problem was my eye because my left side of my face didnt move after surgery..soo I got a gold weight in it..sooo regarding balance..hopfally because ur young...healing well be quicker...i actually started up my classes about 5 weeks after surgery...only on classs at a time...most of my professor were cool and let me do the work at my pase and ended up graduating on time even tho I still planning my 3rd surgery to get my facial nerve back...goood luck..and I hope that being young works for u 

[mertzirose]

 hello,everyone,
               just again want to express my thanks for your thoughts and good wishes for my son ,ken. Kim, ken ,it looks like will have to postpone his last 3 classes at school probably till the spring semester, but that is ok, cause if all goes well, he will be able to graduate in may of 2012. Thanks for all your input, i sure hope he does bounce back fairly quickly but i and the rest of the family will be here to give him lots of tlc!!

                                                                              thankyou all,
                                                                                        Roseann

[Chances3]

Hi Roseann,

Let the young man go on vacation and have a good time.  None of this is easy, but it will all pay off.  How are you holding up mom?  Hang in there, don't let you imagination run wild, your son will be fine.

God Bless.

[mertzirose]

hi everyone,
              we got news yesterday of when kennys surgery will take place, it will be on wednesday, august 24th, im so relieved to at least know when it will be and we can start preparing for what is to come,one good thing is that he will be able to take a vacation in the pocono mountains with his friends, i think it will be a good thing for him to get away from the situation and just kick back and relax for a week. im sure the time will go by really fast. Thankyou all for your kind words,it means alot!!!


                                                               Roseann