Author Topic: getting nervous, need advice  (Read 1781 times)

AngelaH.

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getting nervous, need advice
« on: May 01, 2017, 06:48:10 am »
My husband is 39 and about to have surgery to remove 4cm skull base AN.  He found out the beginning of April, has consulted with his surgeons (Neurosurgeon and Head and Neck surgeon).  This is all new, we don't know of anyone who has ever gone through this.  There are so many questions and concerns about possibly not being able to do the same job again (requires climbing ladders etc.), how long to ask off for short term disability, what will he need most from me and others (I also work full time) both initially and down the road....the closer it gets, the more anxious he gets and it is just very scary.  I want to be realistic because there are bound to be changes, he is now very active and being still while healing will be a challenge in and of itself.  Can some of you offer some experience and wisdom here about what to expect, I know everyone's story is a bit different, however, I would appreciate anything you can share...Thanks!

ANSydney

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Re: getting nervous, need advice
« Reply #1 on: May 01, 2017, 05:38:21 pm »
The question to ask your treating doctor can be found at https://www.anausa.org/pretreatment/questions-for-your-physician

If you are having surgery, the most important question to ask is how many AN surgeries have they done and how many do they now do per year. It takes about 60 AN surgeries to become proficient, so at least 100 surgeries and at least 10 per year would be a criteria. ANs are one surgery where experience has a large impact.

You've made no mention of the symptoms. One good thing about ANs is that they are typically slow growing so there's time to do your research and consult multiple doctors.

Tod

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Re: getting nervous, need advice
« Reply #2 on: May 03, 2017, 07:01:34 am »
So, I'm kind of a worst-case positive example. My highly unusual experience was a 32-hour surgery that led to two weeks in neuro ICU and then 10 weeks at home. My recovery was slowish and occasionally difficult. But like I say, it is kind of worst case.

The role of being caregiver is an act of balancing the doing/not doing. The more your husband does for himself during recovery, the happier he will likely be and the faster his recovery. Walking is key, so is resting. If his short-term disability insurance allows, I would suggest 12 weeks to allow him plenty of time. It will be hard to know what therapy and support he needs until he actually needs it.

The doctor can give an idea of what to expect based on his/her experience, but every case is different.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

AngelaH.

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Re: getting nervous, need advice
« Reply #3 on: May 04, 2017, 09:12:57 am »
Thanks.  His tumor was actually an incidental finding.  He went for MRI of C-spine for neck problems on the opposite side of where the tumor is located!  The radiologist saw a tail end of 'something' and called  him back in for brain MRI, this is how it was found.  It was surprising it was at this size (4cm) and no symptoms were noticeable, slightly diminished hearing...that is all.  So now he has talked to a neurosurgeon and the head and neck surgeon who teams with the dr.  The head and neck (otolaryngologist), seems to think in about two weeks he will be feeling pretty much back to himself.  This does not seem realistic, maybe he is just trying to be super optimistic.  One thing they do agree on is preservation of facial nerve is priority.  They have both mentioned two different ways of going into the head, one straight in from the side and the other at more of an angle from behind the ear.  They seem to have different views on this, apparently going straight in would shorten the surgery significantly, however, I just want him to get what is best for the most successful outcome.  He has a final consultation coming up and will take the list of questions along...esp the number of surgeries!  I agree with requesting the most possible time from short term disability.  Thanks for any additional tips/comments you may have...

Cityview

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Re: getting nervous, need advice
« Reply #4 on: May 04, 2017, 04:41:38 pm »
I would get at least three opinions from different surgeons.
I would look for a neurosurgeon who has done 800 or more acoustic neuroma surgeries in his/her career. For any kind of surgery high volume centers generally have the best results. High volume for acoustic neuroma seems to be around 75 or more per year. (Institutional)
Some institutions will state on their website how many acoustic neuroma surgeries they do per year. That's different than "caseload" or "treatment" because "treatment" could be radiation. Caseload can include watch and wait, surgery, and radiation combined.
With all kinds of surgery the more experienced doctors will get the best results.
Wishing your husband the best.
Small AN
Successful watch and wait for over 4 years!

 


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