Husband recently diagnosed

[Emcee]

Hello everyone!  My husband had been experiencing right side facial numbness since last fall.  After a series of tests, including a MRI we found out on June 9 that he has 4 cm AN.   We were very worried up until the diagnosis, but somewhat relieved that the tumour was not cancerous and treatable.  We found this forum immediatedly after diagnosis and we felt well equipped to ask intelligent questions at yesterday's meeting with the neurosurgeon.  My husband is meeting with his neurosurgeon and an ear nose & throat surgeon on July 21.  A surgery date will be set then, most likely in the fall.  The surgeon will be debulking the tumour.

The neurosurgeon mentioned that base on the size of the AN, he can expect to be off work for 3-6 months.  His is wondering how he will keep busy!   Is the Dr. givingus the worse case scenario - or is this the usual recovery time?  We would love to hear from you.  This is a great forum.  I will keep you updated.

[Debbi]

Hi Emcee-

Glad you found us - but sorry you had to!

Three to six months seems kind of long, but it may be that the surgeon is being cautious  Do you know what kind of surgical approach they will use to debulk the tumor?  Is your husband having radiation after the debulking? 

I went back to very light work about 2 weeks after surgery (I had translab), but I work from home which makes it much easier. I did have some post surgical complications, which have slowed down my recovery, so at 8 weeks post op, I am only working half or three quarter days still.  Fatigue is an issue for most of us, which is why working part time is very helpful - it allows time for naps and resting.

What part of the world/country do you live in?

Debbi

[fbarbera]

You might want to ask your husband's surgeon directly how many ANs (specifically, not just brain tumors generally) s/he has operated on and what the results were of the surgeries.  I believe they are required to maintain and provide that information.   Just want to be sure your husband is in the most experienced and capable hands possible.  You want the doctor who treats many of these things all year round, not the general neurosurgeon who treats 5 - 10 ANs a year if they happen to pop up.

I can't speak to recovery from surgery since I was treated with radiation, but I'm sure you will receive plenty of feedback soon.  I imagine how quickly your husband returns to work will depend not only on the results of his particular surgery but also the nature of your husband's job, i.e., how physically and mentally demanding it is.  You might get more specific responses on this forum if you post a few more specifics about the nature of his work (e.g., desk job, lots of travel, manual labor, etc.).   

[Emcee]

Thanks for the responses so far.  We live in Canada.  The surgeon has performed 500-600 AN surgeries over his career.  He deals with them on a regular basis, 15-16 a year.  So we are confident in his abilities.   After the debulk, he will have MRIs at 3-6 months and once a year until 5 years after surgery.  He works in the computer field - desk job. 

[leapyrtwins]

Emcee -

post op recovery generally takes 6 weeks, but results vary.  A lot will depend on the side-effects your husband experiences from surgery.

Your husband's AN is larger than mine, but I was back to work (desk job) part-time in 2 1/2 weeks and full time in 6 weeks.  But I didn't have any big side effects and my AN was completely removed surgically - no followup radiation was necessary.

IMO 3-6 months is more the range of time that it takes to get back to "normal" - that is, feeling like "yourself" again.

Jan

[Jim Scott]

Hi, Emcee:

Welcome to the forum, which I'm pleased to learn you've found useful. 

Your husband's AN falls into the 'large' category so surgery would normally be indicated.  I'm rather surprised that follow-up radiation is not being planned because 'debulking' simply reduces the tumor mass and cuts off it's blood supply.  The usual procedure, as I understand it, is to then use radiation to kill the remaining tumor cells, preventing any future growth.  This is what I experienced with my 4.5 cm AN (see my signature at the bottom of the post).  I'm happy to report that it worked out quite successfully.   However, I'm sure your husband's doctors are doing what they deem best in his case and I certainly have no intention of questioning them.

As previously noted, 3 to 6 months is a fairly protracted timeframe for AN surgery recovery but I would guess that the doctor is simply giving you the most conservative estimate, as a precaution.  Better to expect to be 6 months in recovery and only need a month or two than to expect to be recovered in a month and need five or six.  Actually,'recovery' can be a relative term with AN's.  Many of us were well enough to resume our normal activities with a few weeks of having surgery but in reality, full recovery takes a fairly long time.  I recovered very quickly (resumed driving within 2 weeks of surgery - with my surgeon's permission) and thought I was pretty much fully recovered.  But now, two years post-op, I still have a few very minor residual effects from the AN that may not ever entirely disappear but I feel far closer to 'normal' than I did a few weeks after my surgery.  However, as we often say around here (because its true) 'every AN patient is different' and one person's experience, good or not-so-good, doesn't reliably predict what another AN patient will experience, especially when we're discussing recovery timeframes.   Still, I would expect more like 3 to 6 weeks for recovery rather than 3 to 6 months.  I hope I'm right. 

Thanks for posting and I hope this forum (and others) will continue to be a resource for you and your husband as you travel on your 'AN Journey'.  I wish you both the very best.

Jim

[Nicole222]

Hi!
Sorry to hear of your husband's diagnosis.  I had surgery (retrosigmoid) on May 9th to remove a 3.5 cm AN and was cleared for work or normal activity in 3 weeks.  I would ask for clarification on that;  Best of Luck to you and your husband.
Nicole

[Kaybo]

Emcee~
I had a really rough go of it and I was back at work in 3 months - no one can predict how each individual outcome is going to be.  I had "stroke-like" symptoms and was on the table for 14 hours - I think that increased my recovery time.  That was 12 years ago, I think that most surgeries & recoveries are much shorter and they have better outcomes now!  Thank goodness!   

Please let me know if I can be of any help to you or your husband.  If you would like, you can check out my blog (address at bottom) and see what a great life I have now - 12 years after.

K

[Joef]

my .03$ 

 I was in the middle of most recovery times... not the best... and not the worst ... was back to work at 2 months... but really did not feel like myself until after 6 months and then started to feel better than before surgery.. the tumor no longer was saping strength from me!

[Tamara]

I was told 6 weeks to return to work, but that some patients do it in 4 and some take 8.  I expect it depends on what you do for a living. I am 4 weeks post-op, and have returned to a few hours of work/day, but only work part time to begin with.  I am very thankful that I am not a professional dancer or orchestra conductor.  I do some microscopic work, which I thought might be challenging because I have eye issues and have blurry vision, but I see better with the scope.  Go figure.  BUT, my AN was much smaller, though, it turns out, unusually sticky because it was an unusual kind.  Maybe you are being given longer because yours is larger.  I would ask about follow-up radiation, though...

best wishes,
Tammy