New member - Husband had translab surgery yesterday

[AngeAus]

Hi all,

I have been quietly reading the various posts on this forum for 10 weeks now since the night my husband and father of our three little children was diagnosed with a 3cm AN. I remember clearly coming home from the doctor devastated and quickly hopping on the internet to try and find some encouraging information. This is such an unbelievable site and I am so glad I stumbled across it. Reading everyone's experiences definitely gave us some comfort that life can go on after been diagnosed with an AN. We live in Australia and large support groups such as these are not readily available here.

Anyway, I thought I might share our story thus far. My husband, Scott (34yrs), lost hearing in his left year in January this year. After various hearing tests he was eventually sent for an MRI which found a 3cm AN. We decided to have the surgery and as Scott's hearing was almost totally gone on the AN side we were advised that translab was the best option for him. Surgery was set for July 24 which gave us 8 weeks to go out of our minds stressing about it. Finally the big day came yesterday. Our team of doctors are well known in our state for doing AN surgery and our neurosurgeon (Frank Tomlinson) is very experienced and has spent a number of years at the Mayo Clinic so we were confident that we had the best doctors on the job.

We were told that the surgery can be a very long process but never did I imagine what a horrible day of waiting I had ahead of me yesterday. I left Scott at theatre at 8.30am yesterday morning. They said they would call me when it was finished or I could call them as well for updates. Well 5pm came, then 10pm came and went and I hadnt heard anything. Then by midnight I was totally beside myself. I had made numerous calls to the hospital but they just said it was still going. Finally the doctor called me at 1.50am this morning. Thank goodness it was all over. Scott had been under for 16 hours!! The doctor sounded very happy with the outcome although he said they have left a tiny piece of the AN behind in order to preserve his facial nerve. Apparently the tumour had an unusually good blood supply and they had trouble getting it out because of the bleeding...hence the 16 hours.

Feeling incredibly lucky and over the moon I raced into intensive care this morning to see Scott. I knew from this forum that he would be feeling awful but I didnt realise just how bad. Please tell me this is normal? He was wriggling around in pain and vomiting a lot. he couldnt really talk either. I'm not sure if that was because of the drugs or what? I nearly passed out myself I was so scared. The nurses told me to go home and come back tomorrow when he should be feeling a lot better. Did anyone else feel that terrible? Is it because the surgery was so long? I am praying that tomorrow the side effects of the anaesthetic will have started to ease.

I know that the posts on this forum are usually made by actual AN patients but being a loved one of a patient can be terrifying as well. I have no idea what he is going through, hence why this site is so unbelievably helpful.

I will let you know how he gets on in the coming weeks and thank you for providing such a wonderful support group. Fingers crossed Scott will impove in the next few days/weeks.
Angela

[Jim Scott]

Hi, Angela ~

I'm so sorry that your husband's AN surgery was so stressful for you but this is not entirely unusual with this kind of tumor.  As my neurosurgeon stated: "it's not the tumor (which is benign),"it's the location that makes the operation difficult".  It's very likely that 16 hours under relatively strong anesthesia is the cause of Scott's severe discomfort.  That should abate as the drugs pass out of his body.  However, he may still have some discomfort for awhile.  Hopefully, not long.

We often say here that the AN surgery patient has it 'easy' because they're asleep the whole time while loved ones agonize while waiting.  You apparently had a very scary time of it and the hospital could have been more helpful with communicating what was happening.  However, it's done and now the healing begins.  I trust that Scott will be better today and can begin to recover.  He'll need your support and you'll both need patience.  Eventually, life returns to (relative) normal.  I state this from experience.

Meanwhile, please avail yourself of the information and support the ANA discussion forums offer - and when he's able, suggest that Scott register and post, also.  We would like to welcome him.  Meanwhile, please try to take care of yourself and know that 'there is life after an acoustic neuroma'.

Jim

[It is what it is]

Welcome to this wonderful ANA family and thanks for posting.  What a scary experience you had!!!  I hope you have support for yourself?  Please let us know how you and your husband are doing as the days continue.  You will be in my thoughts.

Karen

[millie]

Dear Ange-Hi-I'm Millie and I was diagnosed with an AN in February and I am deciding on how to treat it because it has grown.
About your dear husband.  My husband too had surgery May 3rd.  It was sudden open heart surgery, totally unexpected, and he had a quadruple bypass and an aortic valve replaced.  We saw him at 6.a.m. on the day of surgery, and then at about 5:00 P.M.  post surgery.  The waiting was difficul of course, and then the recovery period can be exhauting for the family too. (I took a hotel room nearby which helped)
Tom  was very white and quiet, and then in cardiac intensive care for a week.  He was in the hospital for two weeks. 
There were times I wondered if Tom would ever be the same. (He also had an issue with heparin.)  I also worried when he came home if I could take care of him.
 Today he is terrific!  He is doing chores in the yard.  We are going to a local concert tonight to hear a blue grass group. Life is much better. Hopefully your husband will have a strong steady recovery.  One nurse told me each body recovers at his own pace; one cannot compare recoveries.

I am praying for you and your husband.

[jaylogs]

Hello Ange...thank you for posting your experience here on this forum! I think it is a good outlet for both patients AND their signficant others to let off steam and ask questions.  Vomiting is definitely a common thing. A lot of us wake up with the room spinning big time...when I woke up I could have sworn they had me half off the bed with my head upside down, I was that off balance.  Fortunately I wasn't feeling any sickness.  There will be some ups and downs as he continues to recover, but as we always say everyone is unique and your experience will vary!  Hang in there and keep us updated!
Jay

[MDemisay]

Welcome Angela,

You will find a family type atmosphere here. You can discuss anything with us. Now that he is through with the surgery portion, he is certain to be out of sorts for at least a few days. I can remember how out of sorts I felt as well when I had my AN surgery back in 2004 (I had a 3.1 cm AN) It took me 3 weeks to recover. Of course, I had other issues with which to deal with. It helps to check with your discharge coordinator. There is an Insurance portion on this site for you to make use of as well as other subcategories which you as you explore this site will discover for yourself.

 Fortunately for you, there are those of us here who can go over things to expect with you. Vomiting is one of them,  a feeling of dizzyness is another. It will take time for his body to get used to its "new normal" so be patient with him. Encourage him also to use this forum as well as his health allows, of course.

 My own family did not know what to expect with me as far as anger issues, it took a lot of patience on their part as I was used to doing most things on my own, be aware that it is helpful to ask "do you want help with that?"  Allow him to ease into independance again. Encourage that!

Once again, welcome to our ANA family!

Mike

[jenichol]

Hi Angela,

I am sorry to hear of your husband's AN and your ordeal in waiting.  I am just 1 month out of surgery for a 3+cm AN removed.  My surgery was 12 hrs and a retrosigmoid approach.  I was in ICU for one day and I can say it was rough.  I wasn't spinning, but had to sit at a 90 degree angle the whole time.  I was in a lot of pain, as my head and neck hurt.  The staff was wonderful and took great care of me.  They did let my husband stay and he was a tremendous help in consoling me and feeding me ice chips. I was in the hospital for 8 days.  I ended up needing two units of blood.  My BP was way low - 60/40, as I had lost a lot of blood in surgery.    I am doing pretty well now.  I still have trouble with my balance and I am walking with a cane.  It took me about 3 weeks to feel like I wanted to do more than sleep and take pain medication.  I have had a little set back with an orthopedic problem with my hip that has hindered my mobility, but overall I feel better every week.  As Jaylogs said when responding to one of my posts pre op, this is definately a life changing event.  I am still trying to find my new normal.   One thing I have learned about this group on ANA, is that they are very caring and supportive.  Everybody heals at a different pace.  Please keep us posted on how Scott is doing.  My husband was such a comfort and support to me, as I am sure you are being to Scott.  You folks are in my prayers. 

Peace to you both,

Jan

[It is what it is]

Simple Exercises Are an Easy and Cost-Effective Treatment for Persistent Dizziness
http://www.sciencedaily.com/releases/2012/07/120705133918.htm#.UBH6uzky5EY.email

Karen

[AngeAus]

Thank you for all the kind words. It really does help.

4 days post-op Scott is doing a lot better and is a new man compared to when I saw him in ICU. His post-op MRI showed a couple of complications which explain his slow progress. He had his first proper meal today and they have taken out his catheter and IV drip. His nausea has finally eased as has any pain. He is also able to sit up now and can focus on things for a little while. Another positive is that the buzzing or tinitus in his left ear appears to have gone. His main complication has been a blockage to a particular vein in the brain which is causing come 'back pressure'? anyway, this has given him some co-ordination problems with his left arm/leg hence the slow progress with becoming mobile again. He is able to walk a little with a frame but it has only been two days since he got up and he is already getting stronger. Yesterday he couldnt touch his nose with his left hand but today he can! The doctors keep telling me how amazing the brain is and that it will work itself out. I hope they are right.

I am very mindful that others contemplating or waiting for surgery read these posts so I hope I havent put anyone off. Scott is still very glad that he went through with the surgery. I guess he just wishes it had been a bit more straightforward but that cant be helped. Scott is a very determined and very fit person so I am confident if anyone can bounce back he will. At least he has the olympics to watch on TV now as he is a very keen sportsman!
Thanks again for the replies.
Angela

[Jim Scott]

Hi, Angela ~

Thanks so much for the wonderful update on your husband!  I'm delighted to learn that he is improving by leaps and bounds.  That is so encouraging!  You'll both need to draw on your reserves of patience in the days and weeks to come but know that things will keep improving and that your friends on the ANA discussion forums will be thinking of and praying for both of you.

Jim

[It is what it is]

It must be a comfort to you to see improvement.  That must have been so scary for you.  We are here. 

Karen

[jenichol]

Angela,

It is so good to hear that Scott is improving.  You are still in my prayers.  Hang in there, each day is better.  Enjoy the Olympics.

Jan

[millie]

Angela-Wonderful wonderful news!  Try to rest a little yourself.  Millie

[wwarr]

That is very positive news that he is improving.  Time will help.  I'm sorry that he had such a long ordeal with his surgery.  I remember waking up in the ICU to the room spinning so they told me to just keep my eyes closed.  Nausea and vomiting were apart of that but it soon passed within 24 hours.  It does get better.  I will say extra prayers for him tonight.  Also, as a caregiver, make sure that you are taking care of yourself and your needs too.  I know he appreciates all the love and support you are giving him.  It means the world to have a companion by your side supporting you through recovery. 
Sending you positive thoughts and prayers your way. 
Wendy