Day 2 of Recovery - Still in ICU

[jays]

Hello all, it's Brent again.

Well he's feeling a little better today.  His doctor will hopefully release him from the ICU into a hospital room where he can have visitors all the time and where he'll have his own room.  He was actually able to open his eyes this morning when I went to visit him.  He said it finally feels like the floor is below him rather than on the side of him.  Now he said it just feels like he's on the worlds craziest roller coaster all the time.
 
It's been very hard for me to watch because Jay's #1 concern going into this was saving his hearing in that ear.  Unfortunately, with this type of tumor the hearing comes last because the doctors first concern is saving the facial nerve so he has no facial distortion or muscle weakness and then they focus on removing the whole tumor.  Saving the hearing is more like icing on the cake Dr. Steffan said.  And since Jay is slowly becoming more aware of what's going on around him, he's starting to realize that he can't hear out of that ear and it's very upsetting to watch.  But they won't know anything for sure about the hearing until they do testing and whatnot once he becomes more stable.
 
I still look at the surgery as being a success because the doctors accomplished their 2 main objectives and saved the facial nerve and removed the tumor completely.  Since I fly back to Minneapolis today, his brother Terry will probably be posting on here.


Thanks for all your support everyone!

Brent Worwa

[Jim Scott]

Brent ~

Let me offer our appreciation for your diligence in posting Jay's updates.  It seems as if his recovery is continuing normally.  Being released from the ICU is always a positive sign.   The reality of losing hearing in one ear is daunting and it's understandable for Jay to be upset dealing when facing with that reality.  However, dealing with the complications that ensue when facial nerves are damaged would be even harder.  If the surgeons were able to remove the tumor, as you stated, that is a successful surgery.  Thanks again for your postings and have a safe trip back to Minnesota. 

Jim

[epc1970]

Hi Brent and Jay
I remember that feeling at 2nd day post op and becomming more aware of what was going on-it was tough as I took inventory of what was and was not functioning as it had been. I know what is was like to go thru it but it must be awfully hard watching someone you love go thru it.  It sounds like Jay is recovering well so far and that the surgery was successful as far as tumor removal and the saving of the all important facial nerve. I will be keeping Jay in my thoughts that he has reatained some or all of his hearing since that was one of his primary concerns. Thank you for the updates....it's good to know he has caring people watching out for him during this.
Erin

[mellowrama]

Hi Brent and Jay,

I was thinking Jay might have a really difficult time with the balance, as the tumor was small and it didn't sound likely that his other balance nerve had an opportunity to start compensating.  I'm sorry to hear this, he must be very uncomfortable.  Day 1-4 I couldn't tell if I lost my hearing or not, with the bandages and all the ringing in my head...I had translab so they don't even try for to save the hearing but nor did they test it afterwards.

Getting the tumor out and saving the facial nerve is the main objective -that's what I  keep reminding myself as I'm learning to cope with SSD. Thanks for keeping us posted and I hope the dizziness get better soon!
melinda

[Lilan]

Thrilled to hear Jay is doing well, but sad that he is so upset about the hearing.

I just had my surgery in July and must say it was a lot easier to adjust to SSD than I expected. Also, his hearing in the other ear may be a bit distorted at first, so there may be some improvement to look forward to. I noticed that female voices in particular sounded like chipmunks to me for about three weeks after surgery and thought it might be permanent. Nancy (NL) told me hers went right back to normal, and so did mine.

[leapyrtwins]

Brent -

it if does turn out that Jay is SSD, please ask him to PM or email me when he's feeling up to it.  If he'd rather talk, my phone number is on the ANA's WTT (willing to talk) list - or I can send it to him. 

I'd be more than happy to discuss the BAHA with him.  I was quite depressed when my AN left me SSD - I was also miserable.  The BAHA was a tremendous solution for me and chances are very good it will be a tremendous solution for Jay also - if he chooses to go that route.

Jan (Benjamin)

[another NY postie]

Hi Brett and Jay,
Just chiming in to send my thoughts and prayers to Jay as he makes his recovery.  I am glad they saved his facial nerve.  I too am gambling shortly for hearing preservation but I know in my heart that the most important thing is the facial nerve.  So that is good news...take care...
Cheryl

[anissa]

Hey guys, so glad to hear that Jay is finding his balance, that is a good sign!  I was reading the post-op post about the side incision, I have to say that mine was very painful.  I joked that it hurt worse than my head for the first day or two.  I was in a university hospital and apparently my belly incision was done by a student but I digress...  Best wishes to Jay as he recovers and prayers that his hearing in saved.
Anissa

[alicia]

I hope Jay is feeling better everyday.  I had translab with House in May.  If Jay loses his hearing on that side, it is annoying, but manageable.  Hang in there guys.  It does get better.  Alicia

[Vivian B.]

Hi Jay and Brent,

Just wanted to wish you well on your recovery. Just remember one day at a time!

Vivian

[sreda]

chiming in here to wish best of progress on recovery and to say that my own balance issues after surgery were pronounced, also. It was like the floor itself was moving or something for several days after i was checked out of ICU and sent to my own room, and then Seton Hall (at House in Los Angeles). I had to at least touch a wall while walking for almost a week in order to stay steady and upright. Somehow i managed, only one week after surgery, to navigate LAX airport and the flight x-country by myself because my husband got sick back in SC and I had to leave Los Angeles before I had planned. 
Back to your topic...balance issues are to be expected, and they get better and better each week. No one here will discount that you may be disappointed if your hearing in one ear is affected - or gone - because that is a valid concern, but many of us also know how important good facial and eye functions are, so I am glad for you that these key things went really well, surgery wise, and the tumor is gone.   

[4cm in Pacific Northwest]

Brent,

Know for me grieving facial muscle control has been far harder than grieving hearing loss for me. It may be hard for him to understand this ... nevertheless he will still need to grieve the loss of hearing and be supported.

The fact that his facial nerve was preserved is actually very good news. Hopefully he will realize this when eventually he feels like smiling.

If he does cry with grief, over the hearing loss, and there are tears in BOTH eyes know this is also good news ... many of us never get tears from emotion (or even chopping onions) in the AN side eye after surgery. Try to remind him of his blessings and the positive outcome.

As the caregiver- be sure to speak to others and don't do this alone (as my husband, my caregiver, had too). I am not sure if you are staying at Seton Hall- but in the basic kitchen (no stove if I remember)- there is a great place to meet other caregivers who are also supporting their special acoustic neuroma patients… while popping into microwave, for them, something to eat.

We have 2 other ANA members at House right now- one in their own room now (doing well) the other still in ICU (had surgery a day later). My hope is when they get to Seton- new friendships will form there.

Know that it does get better.

Hang in there. We are here for you (the caregiver) and Jay (the guy who feels he has been hit by a MACK truck right now!!!   ) at the end of a post… on line here.

DHM