1 yr Post Op

[BRS89]

I know that when I first was diagnosed, I wanted to know how people felt post op along the way.

Today is my one year anniversary from a retro 2.5cm on the right side by Thomas Ellis MD in Fort Worth.

So, if you were like me, you are wondering, what's it like now?

Well, I had my 1 yr MRI, no regrowth. That's obviously a big relief. I went back to work full time at 3 months, and I'm not going to fib and say it was even a little easy. It wasn't. I use my brain for 100% of my job, and I fatigued quite easily. It has improved over time. But in inches, not leaps.

At 6 months, I coached my sons football team in the hot Texas summer. I was not as sharp as previous years, I could tell. Usually, I was much sharper on quick thinking and reacting to play calls, and I just felt foggy. But, managed to make it through but frustrated with hearing on one side when trying to take everything in.

I notice that everyone has different things they have to overcome. Many here have partial paralysis to overcome. I had the following.

SSD - this has been difficult in areas where many people are located and talking. Lunchrooms, eating places, conference rooms, church, has been a real challenge, and I have not adapted. I am looking into SoundBite now.

Finger numbness - My ulna nerve on my left hand (writing hand) was damaged during surgery from the A line. The little finger and ring finger was completely numb. Now, after 1 year, it has just now got back to about 90% from before. A slight numbness but much better.

Taste buds - 3 months of everything tasting bad, even water. They have returned now and everything is normal.

Balance - I am still wonki-headed. I though this would long be gone by now, but I can walk down a long hallway and need to skim my fingers along the wall to keep from wobbling. For an athletic guy this has been annoying. Dr said it could be 18 months before I am better. We'll see.

Neck - This has been my biggest surprise because I didn't read much here about it. But, the Dr. cut deep into my shoulder muscle to get at the tumor, and my neck has been incredibly painful. I get the worst neck pains, and ibuprofin, neck pillows, and massages are the only relief. I do neck exercises all the time, and I can hear the scar tissue when you move my neck back and forth. I would say, this has been more bothersome than the hearing loss.

Tinnitus - Had it before. Have it still. Raw deal.

Everything else has been ok. No constant headahces or inability to play outside with my son, if I don't weeble wobble over.

Has this been what I hoped for? No, in many ways I was hoping most of these issues would be gone at one year, but the biggest truth I have been told is this. "Everybody heals differently, and it WILL take time to do so." Using willpower alone didn't work. (At 3 months, I drove to Galveston and back (6 hours one way)  to push my stamina and recovery.

Even with all these things, I am very happy to be recovering, and given a chance to do so. Good luck to everyone just starting the journey.

[jaylogs]

Hey, congrats on the one year!  Thank you for sharing your journey with us. It's always nice to have another perspective and sharing this info for those who are just now starting their own journey.  About your wonky head...I am over 4 years and once in a while I still have issues.  Not nearly like I used to, but still do. It's never in my conscience anymore, but like I said, there are times when I have to catch myself.  Take care and continue with the good progress!
Jay

[Jim Scott]

BRS ~

Thanks for your one-year update. 

As you noted, every AN surgery patient has different post-op issues and recovery is highly individualized.  I had a great recovery but always caution that this may not be the same for every AN patient.  However, your experience indicates that, as we like to say; 'time is on our side' because most post-op issues resolve in time.  Perhaps not 100% but to a point where our quality of life is not seriously affected.  Of course, during recovery, some adjustments must be made.  Those tend to be relatively minor and natural.  Fortunately, being SSD can at least be alleviated with a BAHA or other device. 

As for 'willpower', of course simply 'willing' yourself to recover is not realistic but I found that my intense desire to resume my normal life was a great motivator and kept me doing things such as boring balance exercises to help me gain my balance and be able to function normally.  My neurosurgeon gave me permission to drive two weeks after my hospital discharge.  I never told him I had been driving for almost a week with no problem because I wanted my mobile independence back.  So, while I don't attribute 'willpower' to a good recovery, I do credit motivation.  I've read many posts over the years that relate how an AN surgery patient was doing a lot of daunting 'physical' activities within months of their surgery.  Those folks may have been fortunate in their recovery but I suspect many of them also were very determined to do as much as their bodies and stamina would allow as they 'got their life back'. 

Your account is both informative and encouraging.  Thank you for posting it - and may your recovery continue apace.

Jim 

[TexasSprinter]

BRS89--thanks for the update.  I'm in Texas, too, and it sounds like our recoveries have been similar.  I'm one-year post-op from first AN surgery, and I'm still not used to SSD.  I looked into Soundbite, Phonak Cros, and BAHA.  I settled on the Cros but all three are reasonable options depending on your preference.  The Phonak Cros is nowhere near as good as having my hearing back but is helpful in many situations. Kind of nice to have my kids whisper in my deaf ear and I can hear on the other side.  Good luck with the Soundbite testing and keep us posted.

[joewhitmore]

Thanks for this post. I am 20 days post-op for translab removal of a 2.5 CM tumor on my right side as well. Right now I'm struggling with:

-Facial paralysis on rt side. (Dr's say the nerve is in tact and responded to very low-level stimulation during surgery so they say I should regain function). No improvement so far.
-Fatigue. getting better but I can't believe how weak I am.
-Vertigo. Walking without a cane now but requires a lot of focus & energy.
-Taste. Sweet/Metalic taste on right side
-Insomnia. Always tired but only sleeping 3 hours per day.
-Numbness in my feet.
-Hearing. I knew I would be SSD but I didn't expect my hearing to be distorted. It sounds like people are talking in a tunnel and music sounds jumbled.

I guess I really didn't expect this to be this difficult. I've been wondering about my future/recovery and wondering how to start rehabilitating myself so I appreciate you sharing your experience.

[BRS89]

Joe,

Just about everything you are going through, I did as well. My biggest issue though, was impatience. I was wanting things to improve on MY timeline. And when it didn't it was easy to get down and depressed a little.

The thing I had to do, and I am still doing, is learn the new me. How to hear and maneuver in public, how to walk without feeling like a bobblehead, how to go through half a day and not be exhausted, how to focus my brain where I don't feel foggy, how to get past no taste and slowly get back to normal, ect. ect.

I deal with a new me, and I have to make peace with the fact, I'm not the guy I was before. But, the body is a magical thing. It can adapt in the oddest of ways, and at some point, I won't think about things being different, and just focus on what they are.

I just remember the kid in the room next to me when I got my diagnosis was awaiting his. I got a benign tumor, and he got terminal tumors down his spine. While it doesn't discount our quality of life issues, it sure beats the alternative. I take comfort in the opportunity to get better. 

[joewhitmore]

BRS,

Well said. I must say this whole thing has re-focused my priorities. I'm thankful for the healing and recovery I've already experienced and I'm optimistic about the future. Thanks again for sharing.