Husband's surgery May 6th

[srsly810]

Hello all!  I just recently found this website and am so thankful it is available.   As the caregiver and the one not going under the knife my stress level is over the moon.  I'm worried about not only the surgery going well but about the possible side effects.   I don't remember the exact measurements of Allan's AN but I know it's 3cm x something on the left side.

His surgery is May 6th at Duke with Dr's Friedman and Fukushima.  I've done research on both dr's and feel confident of their abilities.  I'm not feeling very confident in my abilities at the moment.  Every time I think of my sweet husband of 21 years having brain surgery I break down in tears.  He's cool as a cucumber about it, or at least that's what he is portraying to me.  Me on the other hand..I'm a bucket of anxiety. 

Again, I'm thankful this site is here and am looking forward to getting to know each of your as we travel this unknown path together.

[lori67]

Welcome!  I'm glad you found us!

Your situation sounds familiar - I was the one who was cool as a cucumber and my caregiver husband was the one who was a mess!  If your husband is like I was, he's just pretending on that cool part in an effort to not stress you out anymore.  It's normal to be scared in this situation, but there are lots of us here to tell you that you will both get through this.  Some things may be different, but he will still be the husband you have come to know over the years.  Who knows, maybe the surgery will make him even more wonderful - you know, like he'll remember to put his dirty clothes IN the hamper instead of next to it?   

I have heard many great success stories about Duke and both doctors you mention, so he will be in good hands.  The caregiver definitely has the harder job - the patient gets to sleep through the whole surgery and then gets waited on hand and foot for a while.  But before you know it, he'll be up and around and impressing you with how quickly we AN-er's bounce back.   

There's a whole category here on the forum about caregivers.  Take a look at that - I'm sure it will be helpful.  Also, if you haven't already, you can request some free imformational booklets from the ANA.

Take good care of yourself - you're going to be an important part of your husband's recovery.

Lori
p.s.  If you see Dr. Kaylie around Duke, give him a hug from me!  (he did my surgery and I just LOVE him!)

[CHD63]

Hi srsly810 .....

Hi and welcome!  So glad you found us and posted.  There are many people on this forum who can relate to the helplessness and frustration of the caregiver/bystander/spouse, etc.  The stress level is very high because you feel so out of control with what is happening to your loved one.

You are in good hands with Drs. Friedman and Fukushima so you can relax about the skill of his surgeons.  No one can tell you with absolute certainty what any possible side effects he might have ..... not even the surgeons until after they have entered the skull and know exactly what is there.  The MRIs only tell part of the story.

Dr. Fukushima removed my AN three years ago and I had no facial nerve involvement, no headaches, no CSF leaks, and no nausea.  I retained 20% of my hearing.  I did have significant balance issues and short-term, intermittent double vision (less than two weeks).  I was fully functioning and "on my own" three weeks after surgery.  Ongoing fatigue has continued, but if I had still been employed at the time, I feel confident I could have returned to work in less than six weeks post-op.  That is my story ..... but I would be remiss if I did not say that not everyone has the same outcome.

Much depends upon the patient's general health and attitude pre-op; the size, type (sticky or not), and specific location of the tumor; and the skill of the surgeons.

Try to focus on planning for any modifications in routine you may need to make for afterwards ...... and especially try to do fun, distracting things now as you await the surgery date and the time will go faster, with less stress.

Many thoughts and prayers for peace.

Clarice

[moe]

Hi and Welcome!
It is so true, you have the hard part, your husband has the easy part. Closing his eyes, and waking up is what it feels like for the patient.

If the doctors say to go away for awhile, it is okay. Go for a walk, go outside, bring a book and go read somewhere..... It is a long surgery. I know my husband actually went home for a quick nap.

Doing fun things is good advice before surgery. Have your hubby exercise, jog or whatever. It will help with recovery.
Keep posting, it will be OK, you'll see 
Maureen

[leapyrtwins]

Good luck to your husband.  I actually was cool as a cucumber - and I wasn't faking it.

I knew I wanted my AN removed and I wanted to get on with my life.  I also had great faith, trust, and confidence in my neurosurgeon and my neurotologist.

From what I've heard your husband's doctors are very good. 

Best wishes to him - and to you.  As Moe said, you have the hard part.  Your husband, on the other hand, will sleep through the surgery 

Jan

[mandy721]

Hi,

I am a traveler on the same road you are on, but 21 months out from my husband's surgery. The diagnosis was a shock.  Ken went to the ENT thinking he needed a hearing aid and ended up with brain surgery. His acoustic neuroma as 3cm on the right side.   Never in a zillion years did I imagine anything like that could happen.  From the time of diagnosis at the end of May until his surgery on August 4, life went on pretty much as normal, although there were a number of doctor's appointments as we consulted with different surgeons.  Ken worked up until the day of surgery.  That time was surprisingly calm; we had chosen a highly experienced team of surgeons at one of the top medical centers in the country, Ken was in very good physical condition and we both thought the surgery and recovery would be smooth sailing.

 I found the ANA and this discussion group prior to surgery and was able to gather much information and support.  We were well informed about the range of surgical outcomes, but really thought that the worse that could happened would be the single sided deafness and regaining stamina. I think we sort of blocked out the possibility of a more difficult outcome.  My husband has had a rough time of it.  My sense is that most patients recover from surgery and get back to their lives.  However there is a group who have various complications that can have profound effects on their lives.  This is brain surgery after all and the complex systems of the brain are a bit more complicated than other body parts.  

It sounds like you and your husband are well on the road, coming here for information and using a top team of doctors at an excellent medical center.  Try to keep your life as normal as possible and squeeze in as many fun and special things as you can.  Just like we should live out lives each day.  The hard part for us was after surgery.  My lifeline to sanity has been my Dad and close girlfriends who have been on the other end of the phone for countless hours over the last 21 months.  

Gather practical information now and maintain a strong link to friends who will be there for you. Connecting with the local ANA support group has been very helpful for both of us.  IHere is a link to the schedule of local support group meetings in the next few months - http://www.anausa.org/index.php?option=com_content&view=article&id=128&Itemid=128
There is a real sense of comradery  within these groups, people are very giving of their time and experience.

In truth, this experience is hard for both the patient, spouse and family.  I don't want to be a downer, but also I don't want to minimize the complexity of what brain surgery and recovery involves.  From a caregiver's perspective, both practically and emotionally, I have lots of experience.  Please feel free to get in touch.

Lots and lots of prayers and good thoughts for  a successful surgery.

Miranda

[Jim Scott]

srsly810 ~

I'm pleased to see you've received a warm ANA discussion forum welcome and lots of good advice and support from previous posters.  I'll concur with their confidence in your husband's doctors (Friedman and Fukushima) & facility (Duke) based on other AN patient's testimonials  You're obviously well aware of the risks involved in AN surgery but remember, they are risks, not guarantees.  Although your husband may emerge from the surgery with some complications, he well may not.  I didn't - and many other AN surgery patients had a similar experience.  Even when the AN surgery patient develops complications, they are often temporary or can be alleviated and/or dealt with via medications, therapy or, in some cases, minor surgery.  Still, the 'unknown' aspects of AN removal surgery are obviously daunting to the point that a loving spouse has a lot of pre-op anxiety.  My wife did, although she handled it as well as anyone could.  I was quite sanguine throughout the pre-op process although I did have my own stresses to deal with.  As previous posts demonstrate, all this pre-op angst is fairly typical.  I would urge you to try and maintain a positive outlook, without being unrealistic, and keep in mind that quite a few AN surgery patients have very satisfactory outcomes.  Having confidence in your husband's doctors is a very good way to bolster your spirits, knowing that he will be in 'good hands' and if you have a spiritual faith, now is the time to call on it for solace.  With or without spiritual help, simply be a rock of support for your husband (as my wife was for me).  In reality, at this point, that is all you really can do - but it's probably the best thing you can do for him.  I wish you both good luck as you approach The Big Day.

Jim

[Angel-1]

Hello,

I know your husband is in good hands, I had the same surgeons.  I was calm before my surgery as well, also felt like I had to be for my family.  My husband was in your shoes and was very nervous.  I think once the surgery was over and I was out of ICU, he started to calm down.  He still had lots to do, but he knew what we had to deal with and that made it easier.  The unknown is the hardest part.  I pray that you will have some peace leading up to his surgery. 

I go to a support group in Chapel Hill and this helped both me and my husband.  I live in Dallas, NC which is close to Charlotte and we even have a small group here that I also attend.  If you are interested in either group, I will get the information to you.  Caregivers attend with their spouses to both meetings.

If either of you have any questions about Duke or the surgeons, I would be glad to talk to you.

Good Luck,
Angela

[srsly810]

Thank you all for your warm welcome and your words of encouragement and advice.   

We live 3 hours from Duke and will be having my Mom come stay with our boys while Allan and I are at Duke.  We've heard 2 different versions of how long to expect to stay in the Raleigh area.  One version has us in the area for 3 weeks and Dr Friedman's nurse says Allan will be out of the hospital Sunday or Monday and we can come home Wed or Thurs.  That would be the 11 or 12 of May.  Less than a week after surgery.  Is that possible?  I'm trying to plan for how long I need my Mom here caring for my boys. 

Thank you again for your time and your open arms!

Star

[lori67]

Yup, it's possible!  You'd expect that after brain surgery you'd be in the hospital for a long time, but it's not like that anymore (thankfully!).

I had my surgery on a Tuesday and was home on Sunday.  There are others on the forum that were only in for a couple of days.  Everyone is different and the doctors won't send your husband home until they're sure he's ready.  I lived near the hospital so I didn't have the travel involved that you do, but as long as there's a local hospital near your home in case of an emergency (which is highly unlikely), he shouldn't need to see the doctor again until it's time to get the staples out.  And the doctors are always available by phone if you have any issues or questions that come up in the mean time.  But, in the end, it's up to you and what you feel comfortable with.  If you feel better spending a little extra time in Raleigh to give your husband a little extra time to heal, then it's worth it.  He might just want to get back home to his own bed and his own "stuff".

It's probably not a bad idea to prepare your mom for a 3 week stay. It's always better to be prepared than to be caught at the last minute needing some help.  And a little extra "grandma" time is good!   

Lori

[Angel-1]

Hey Star,

I had my surgery on a Thursday, was discharged the following Wednesday.  Dr. Friedman did have us stay two more days in the area.  I was discharged on Wednesday at lunch time and we stayed in Durham, Wednesday and Thursday night.  We left Friday morning and headed home.  

I'm three hours from the Durham area also.

Angela

[CHD63]

Hi Star .....

I had to be at Duke Raleigh the day before surgery for pre-op tests and interviews.  Then I was in the hospital for 6 days (some people are in less than that).  My sister lives in Cary so we stayed with her another three days and then my husband drove us home (a 5 1/2 hour drive from Cary).  Unless Dr. Fukushima has changed his technique, I did not have stitches (he used some type of surgical glue and steri-strips) so there was no "stitch removal" afterwards.  In my first retrosigmoid surgery in Pittsburgh I did have stitches, which were removed at 7-8 days post-op and we drove home 10 days post-op.

Both times I had the "best case scenario" so it would probably be the shorter end of time needed to stay in the area.  If I were you, I would count on being gone 10 days to two weeks and then you will be overjoyed if it is shorter than that.  As we frequently say, you should have multiple plans in mind for several different options if needed.

Best wishes and many prayers.

Clarice

[justducky]

Hi. I can sympathize with you about your husband's upcoming surgery. My husband had surgery for his right side AN on 2/9 in the Chicago area. They removed the tumor completely and he had no nerve damage! He had a little set back as he got an infection after he got home which affected a little his right facial side, but that seems to have settled down.

It's hard to stand by and watch someone you love go through this, but I'm sure he will be just fine.

My hubby is still recovering as it takes time to regain the balance back. That is his biggest opstacle. Every day is a step forward though. He now can walk further then before and his stamina is coming back. He still needs to rest after being active, but he seems to bounce back quicker and takes less naps. He's always walking faster than he did even a few weeks after his surgery. Yesterday we went to WalMart to get a few groceries and I had to walk quickly to keep up with him  He has noticed that turning his head side to side still makes him a little 'loopey' but recovers from that quickly.

His doctor may prescribe some physical therapy to help depending on how he does. Tom does a few exercises here at home. Wishiing and praying that all turns out well! Barb

[jaylogs]

Hey Star, and welcome to our little family!! As you have no doubt found out this is a great place to get information and also be able to just vent.  I will be saying my prayers as May 6th approaches.  Take care and please continue to let us know how you are doing!
Jay

[HeadCase2]

Hello srsly810,
  I'm another Duke patient.  Your husband will be in good hands.  Whenever my schedule allows, I go the the local AN support group in Durham.  I've found this forum and the support group to be very beneficial, and a great place to ask others about AN issues.  I would encourage you to see if there is a local ANA support group in your area.
  I'm going over th Duke tomorr0w for my 5 year post treatment AN checkup.  I'm expecting them to tell me not to come back for a while.  I only mention that to remind you that AN is treatable and things will get better.
Regards,
  Rob
PS.  Let me know if I can answer any questions about Duke.