Husband with 4cm AN

[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.

[Tod]

I'm so sorry that you have to face this challenge and I wish the best outcomes for you all. My case was not as severe, but instead of shorter surgery than expected, mine was much longer. My family had planned to wait out a 14-18 hour event that turned into 32 hours with some awful miscommunication at the end. I ended being intubated and strapped to a bed in neuroscience ICU for a week only after 10 days allowed to move about. I became horribly week. With physical therapy and increasing activity i got stronger rapidly.

In some ways, many ways, this was much worse for my family. I still get upset when I think about what they went through, especially my son in his first year of college, and observations of a friend about his appearance when she stopped by the hospital to see if there was anything she could do to help with the long, long wait.

If your husband can be positive now for you, that seems to me a really good sign. Recovery takes time, but with help and effort, strength returns relatively easily. Time and rest are also needed.

Hang in there. You are in a good place to talk about these things. Remember to take good care of yourself as that will make it much easier for you to remain positive and take care of everyone else.

-Tod

[MLB57]

Hello Tina,

I can only tell you that after reading your account of your husband's (and your) heart-wrenching AN journey you are certainly in my thoughts..  From my lay-person perspective I'd venture the size and location of the tumor made the surgery extremely difficult but as you know the AN had to be stopped..

Time will heal your spouse and he will gain much back.. slower than anyone would like.. The brain uses a large percentage of body energy for our body to function daily, so considering brain surgery is like a brain injury, albeit controlled, however, traumatic to the brain I think your spouse will also feel very fatigued for quite a while..That's part of the healing process..

Again, you are in my thoughts..Take care..

[TNMTMAMA]

Tina, my hubby is 6 days out from surgery, so your post really hit home. His AN is 3 cm and his symptoms have gone far beyond the "normal" ones. Yes, he had the hearing, swallowing, balancing, memory issues, but since 2013, he has experienced what I call seizures. The doctors want to argue with me, but I WAS THERE. For the record, I'll call them "episodes," because who cares about the proper terminology?

Hubby has had 3 "episodes" about 7 months apart where he blacks out (with eyes open and set) for 3-10 minutes and always throws up...always in the middle of the night...always with no warning.

Well, we were on vacation this week & yesterday (our LAST DAY, thank goodness), hubby had that 3rd "episode" at the hotel. This time, he did a face plant on the tile floor of the bathroom, came to, but when I got him to the bed, out he went again and threw up everywhere. (POOR STAFF! It looked like a crime scene.) With fourteen stitches in the forehead, we flew home last night. Of course, we were worked into the neurosurgeon's offices this morning to see if Hubby was still a surgery candidate. SUDDENLY, the doc insisted that Hubby's "latest" symptoms were not related to the AN and is sending us to a cardiologist tomorrow. I was not happy at this change in direction, but after reading your post, I'm happy to air on the side of caution. While I trust the doctor, I also believe that sometimes we know more about the patient because we live with them.

I feel so frustrated and helpless. I see Hubby getting worse by the day. I know in my heart that the tumor is responsible because he has passed numerous heart tests with flying colors. I fear for what will happen from the surgery...and I fear what will happen if we decide to deny the care and see what happens. Neither choice is good. Either way, it looks like we are in it for the long haul. We have adopted the attitude that...It IS what it IS...and we try to accept what comes our way and find humor in it.

Today, for the first time, I had a meltdown. It felt great! Smile. After a good cry and a great pizza, I feel better. Finding friends like you who understand is so important...because you can't explain this to anyone. Thanks for sharing your story and know that I'm sending you cyber hugs.

[ANGuy]

Tina, my hubby is 6 days out from surgery, so your post really hit home. His AN is 3 cm and his symptoms have gone far beyond the "normal" ones. Yes, he had the hearing, swallowing, balancing, memory issues, but since 2013, he has experienced what I call seizures. The doctors want to argue with me, but I WAS THERE. For the record, I'll call them "episodes," because who cares about the proper terminology?

Hubby has had 3 "episodes" about 7 months apart where he blacks out (with eyes open and set) for 3-10 minutes and always throws up...always in the middle of the night...always with no warning.

Well, we were on vacation this week & yesterday (our LAST DAY, thank goodness), hubby had that 3rd "episode" at the hotel. This time, he did a face plant on the tile floor of the bathroom, came to, but when I got him to the bed, out he went again and threw up everywhere. (POOR STAFF! It looked like a crime scene.) With fourteen stitches in the forehead, we flew home last night. Of course, we were worked into the neurosurgeon's offices this morning to see if Hubby was still a surgery candidate. SUDDENLY, the doc insisted that Hubby's "latest" symptoms were not related to the AN and is sending us to a cardiologist tomorrow. I was not happy at this change in direction, but after reading your post, I'm happy to air on the side of caution. While I trust the doctor, I also believe that sometimes we know more about the patient because we live with them.

I feel so frustrated and helpless. I see Hubby getting worse by the day. I know in my heart that the tumor is responsible because he has passed numerous heart tests with flying colors. I fear for what will happen from the surgery...and I fear what will happen if we decide to deny the care and see what happens. Neither choice is good. Either way, it looks like we are in it for the long haul. We have adopted the attitude that...It IS what it IS...and we try to accept what comes our way and find humor in it.

Today, for the first time, I had a meltdown. It felt great! Smile. After a good cry and a great pizza, I feel better. Finding friends like you who understand is so important...because you can't explain this to anyone. Thanks for sharing your story and know that I'm sending you cyber hugs.

Has your husband had an EEG?  If he is having seizures, he should have had an EEG, or more than one.  While EEG's don't always show everything, they are pretty standard for seizure disorders.

[alabamajane]

Hi TNMTMAMA,,,
I responded to one of your other posts that I too had several seizures before surgery. I had several EEGs all of which have shown nothing. During the test they will "try" to make him have one. If he doesn't have episode,, test won't tell Dr much. 

Not sure why neurosurgeon would send him to cardiologist if he does not have history of heart problems,,, a neurologist is the Dr who would routinely administer an EEG or diagnose a seizure disorder. I am on seizure med but personally think they were related to tumor.,, argue with my Neurologist every time I see him,,,Haven't had one since surgery and never had one before tumor found. My seizures were very similar to what you describe also.

Good luck ,,maybe cardio will refer to neurologist before your husband's health worsens. Those "episodes" are hard to watch( for you and my husband!)  and hard on his body!!  Let us know and prayers,, Jane

[ANGuy]

An EEG shortly after a seizure will almost always show signs of seizure activity.  The seizure leaves behind a trail, a history, of abnormal activity for a time afterwards.  Also, usually, not only is the history of the seizure evident, but the underlying cause can be determined as well.  While it is ideal from a diagnostic standpoint to have a seizure during the EEG, they can still glean a lot of data afterwards.

While you could very well have had "seizures", it is more likely, and your Drs' actions support this, that you had some type of syncope (fainting).  While there are many kinds of seizures, and some amount to basically syncope, syncope is usually fainting due to a sudden drop in blood pressure. 

There is an old saying "If you hear hoof beats, think horse, not zebra."  In this case, and due to their training and experience, your Drs are thinking "horse", the likely cause, not zebra, a long shot of seizure activity that shows nothing on an EEG.

Also, if you recover from the episode pretty quickly and feel basically normal, this does not support the seizure theory either.  Seizures are the result of all or part of your brain "firing" rapidly and repeatedly when it shouldn't.  The result of this is exhaustion upon recovering.  Nearly all seizure patients are flat out exhausted after a seizure for several hours or more.

[alabamajane]

At the risk of getting off topic,, I just want to say I know I have had seizures as does my Dr and husband. Period. I don't need an explanation of what they are nor how I feel and do afterward.

Tina,,
It's been several months since your post. I certainly hope your husband is much better and stronger by now with the help of his therapy. Our wishes for continued healing..please update us if you still come to the forum for support..

Jane

[ANGuy]

At the risk of getting off topic,, I just want to say I know I have had seizures as does my Dr and husband. Period. I don't need an explanation of what they are nor how I feel and do afterward.


Jane

Okay, it's not off-topic because seizures are an integral part of this particular discussion.  That aside, I am glad you have all of your seizure issues sorted out.  If you are not interested in discussing the issue, simply don't.  The info I was posting about EEG's and seizure disorders was not addressed to you specifically.  I don't know why you think this would be about YOU.

For others who are wondering about whether their episodes are seizures or some other condition, despite what has been posted in this thread to the contrary, EEG's accurately reflect seizure activity in 90% of patients.  It simply isn't true that EEG's are of no value if the patient doesn't seize during the examination. 

[MG]

Tina,
I am praying for your husband. I am so sorry for all that he has been through and you too. Sending positive thoughts and prayers for a good recovery.

MG

[Crazycat]

Hello Tina,

 I went through the mill as well. My surgeries were 10 years ago as of last month. I had to have a shunt installed before the tumor resection. I was in the hospital for close to five weeks altogether. As much as I went through, what your husband has endured is much worse.

This post is from last March. How is he holding up these days?