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Husband with 4cm AN

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jntvarga:
Hi.  My name is Tina and my husband was diagnosed with an acoustic neuroma in January of 2015.  He and I went in for a simple eye exam for new glasses and the optometrist saw that his optic nerve was very swollen and sent him straight to a specialist the very next morning.  That is when our world fell apart.
After having more pictures taken from inside his eye he was immediately taken to the ER where they did an MRI and found the huge tumor.  I, myself, was quite shocked at the size.  We immediately were sent to the chief neurosurgeon of Methodist Hospital in the Houston, TX Medical Center and started the journey.  We had to sit and wait until March 4th for the surgery to take place.  My husband was put on steroids because he had a lot of pressure from hydrocephalis fluid that was build up.  The steroids helped a bit, but not too much.
On the day of surgery we went in at 6am and we were ready to be at the hospital all day since we were told the surgery would last a good 10-12 hours.  After 5 hours the surgeon came out and said he had to stop surgery after removing 50% because my husbands brain starting swelling quickly and it would have killed him to continue.  As I was waiting in the waiting area to see him, I got the call from the doctor that while in recovery my husband went from responding to instantly not breathing and had to have emergency intubation.  I finally was able to see him and it just broke my heart.  Over the course of that week he was non-responsive.  The only movement we would get was from the doctors inflicting pain by squeezing his nail which caused an involuntary extending motion of his extremeties.  The good thing was his pupils were quick to react each time, so we knew he wasn't brain dead (from what the surgeon kept reminding me).  The day after his initial surgery he had to go in for an emergency surgery to remove a portion of skull as well as remove a piece of his cerebellum because the swelling was continueing and not getting any better.  We thought that would help, but by day 3 the swelling was still so great that he had to have another emergency surgery to remove and even greater portion of his skull to allow for swelling without and kind of compression.
By week 2 he finally started to wake up and respond by squeezing hands, moving his feet, giving us a thumbs up, holding up two fingers, and even on some days, giving me a bit of a smile.  They removed his intubation tube around week two and did a tracheotomy.  He also had a PEG tube put in for his feedings and a shunt put in the same week, one day after the next.  It's nice to finally see him without all of these wires and tubes coming out of his head and face.
My husband has been having issues where his hear pauses for 3-4 seconds at a time, very spread out and random, and the cardiologist team is talking about a pace maker.  The nero surgeon says the heart pauses are caused from the swelling of the brain stem and said that it will stop on it's own as that heals, however, cardiology is watching closely.  He has also had issues with tremors on his left side, where the tumor was.  His arm, hand, and leg on the left side tends to shake everry now and then.  He has had multiple EEG's and there has never been any sign of seizures.
We started him recently on physical therapy to try and sit him up and have him swing his legs on the edge of the bed.  He has been motionless in bed for a good 15-16 days, so he is VERY weak and cannot hold himself up, or even his own head for that matter.
Doctors are already discussing sending him to a LTAC facility (Long Term Acute Care) where he will continue to heal, and then once the heart issues stop and the trach is removed, he can then go to a rehabilitation hospital.
After reading a lot of the forums and a lot of everyone's stories, I haven't noticed anyone having these kinds of issues after surgery.  I was wondering if anyone has ever heard of this happening?  Some people have suggested that something may have gone wrong during surgery and the surgeon isn't coming out with it, but that's something I will never know. 
We have 3 children and they miss their dad very much.  I am trying to stay positive for them and for my husband!  I just wanted to talk with people who have actually been through this.
Thank you for listening!
-Tina

CHD63:
Hi Tina .....

Oh my goodness, you and your husband have been through a worst case scenario, for sure.  So many thoughts and prayers for healing and peace as you move forward in the recovery.

So much depends on exactly where the tumor begins to grow and in which direction.  My guess is his began growing toward the brainstem and probably rather quickly.  I assume your husband is relatively young.  It seems like tumors in younger people are often larger before diagnosis, which means bigger issues.

Praying .....

Clarice

NYLady:
Hello Tina,

It is truly heartbreaking to read your story.  I know personally how tough it is to watch your husband go to a place in his illness where all you can do is watch, fear, pray and hope.  While I cannot speak to your particular issues, please be assured that you have the hopes and prayers of all of us here joining yours for his continued healing.  I wish you continued strength, peace and hope during his recovery.  I am certain you will be hearing from many of our members, so please continue to check in.

Best to you,

NYL

Smedina:
Tina-

3 years ago, I was almost exactly in your husband's situation.  I had 2 operations to remove the 4.5cm+ tumor, the 2nd of which went smoothly.  I was in the OR for over 12 hours for the first operation, which was halted because the brain-swelling and immense blood-loss would have killed me.  My neurosurgeon would later say that they were just happy to stabilize me enough to get off of the OR table.  He also volunteered that I was one of the 2 most difficult cases in his 30+ years of experience.  A distinction I could do without.

The second surgery was two weeks later.  I was in the hospital overall for 3 months, including inpatient rehab.  I spent much of the first 2 month confined to the bed,  going between ICU and stepdown.

The tumor and surgery affected my swallow, so I also had the PEG and lost 60+ lbs to boot. A shunt was contemplated in my case also, but with time, the pressure normalized so I ended up not needing one. In the days after surgery, I also developed tremors on the AN side.  These weren't caused by seizures, either, but by injury to the cerebellum (part of which was also resected because of the swelling).   I was left-handed going into surgery, but I've lost fine motor control on that hand, and still experience tremors on that side.   

I can't stress enough how slow a recovery this can be.  Things were touch and go for so long, I felt like I'd never get out of the hospital.  Once I got to the rehab facility, things definitely improved.  That brought its own challenges and frustrations, but at least the life-threatening part was over.

I've only come across a few other people here who’ve been through anything remotely similar.  Unfortunately, there doesn’t really seem to be a way to know what the surgeon’s will encounter once they go in.  I’ve spent plenty of time going over those scenarios in my head. 

3 years later, I’m obviously still living and coping with the after-effects of this insane detour, but I’ve gone from barely being able to stand, to getting around without any aids, driving without any real limitation, and eating again.  The PEG is now a distant memory.  There is no sign of the tumor that started this all. 

I hope that the worst of this is now behind you!  Best of luck!


-Sam

ANGuy:
He gives you a thumbsup in that condition, he has my admiration for sure.  He's one tough man.  He's in that kind of peril and all he thinks about is how to reassure you.

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