Tod's six-month update.

[Tod]

Short report: all is good, if not great.

Long report below. Thanks everyone for the support here.
Tod

It has now been six months since that very long surgery that I slept through and my family has suffered through.

I’m told that I am doing remarkably well and that I look good. Even that I look normal. This is good, because I do feel normal. I feel good. I feel capable of most anything. Long days of work have pushed me to limits that are certainly much greater than they were three short months ago.

Admittedly, my physical strength is still significantly behind where it was. However, I also have not tried to push it. Going back to work was challenging enough. Trying add a serious fitness program to that would have been self-defeating. I was tired enough as it was, so I just tried to be as active as I could and be patient with the continued healing. Gradually my energy levels returned, accompanied by the feeling that I could do most anything, within limits of course.

I still have deficits. I’ve got about 80% or little more of facial movement by my own estimate. I need to spend time trying to isolate and raise my left eyebrow. My mouth generally looks pretty symmetrical for most movement. I can easily tell when I am tired by how the left side of face moves and stiffens.

Speech is still very challenging and really tires me out. Talking for any length continues to make me light-headed, especially when I am tired. I really try to restrain the impulse to create more volume, but after a lifetime of being loud, it is very difficult. Singing is still a silly exercise in frustration. I can whistle some what though. On the upside, I do listen far more than I talk.

Involuntary swallowing action and coughing are still problems. I really have not enjoyed six months of coughing fits. But that is really my only complaint. I can eat and drink basically normally, I simply have to continue to pay attention to what I am doing, and drink a lot with each meal. Like listening more than talking, this is hardly a bad thing.


My left eye is doing well. I use ointment at night and only occasionally do I need to use drops or gel during the day. I certainly don’t miss the $30-$40/week on eye care products. The double-vision is completely gone. Also gone is the over-sensitivity to sunlight, although I still wear sunglasses more often than before.

I’ve been back on my CPAP machine for a couple weeks now with a 40% reduction in airflow. It is still somewhat unpleasant and difficult because of the lack of saliva/dry mouth. But it does help.

In short, I feel pretty darn good. As I have said countless times before, I have been incredibly lucky. The support and prayers of so many people has been quite a blessing. The quality of the doctors, nurses, and all the medical teams and therapists that have been involved in my care has been terrific and made it possible to resume my life.

It has been a good six months. Thanks again to everyone. It is a good day.

[leapyrtwins]

Tod -

thanks for the update.

It sounds like for the most part you are back to being yourself.  Although you still have a few issues, I'm hopeful they will resolve themselves over time.

Six months often seems like a long time, but I honestly believe that it took me almost a year to feel "normal" again.

Best wishes for a continued recovery!

Jan

[Jim Scott]

Tod ~

Thanks for the positive six-month update!  Although you admittedly have a few issues to deal with, it seems as if you've managed to return to a fairly normal life and feel good about your recovery, as you should.  I felt great at six months but now, some 3+ years later, I can see that I improved a lot by a year post-op and probably reached my full recovery by approximately two years, when we vacationed at Disney World in August, 2008 and I went on numerous fairly wild rides that didn't faze me at all, walked what seemed like miles around the park in 90 degree Florida heat and felt fine after a good nights rest. Even my wife remarked on how well I did.  My adult son, then 28 and healthy as a horse, pooped out from all the walking and the heat. 

My point is simply that if you feel you're doing well now, at six months post-op, things will very likely just get better for you as the months roll on so I look forward to reading your one-year update! 

Jim 

[moe]

Tod,
Thanks for the great 6 month updates.
I'm continually amazed at how far you have come, and will always remember your lengthy surgery.

Are you still seeing a speech therapist for the coughing/swallowing issues? Hopefully that will get better in time. We don't want to hear that you are one of those guys at the restaurant who starts choking and needs the Heimlich!

Continue the great healing. Like Jan said, up to a YEAR. You're doing awesome
Maureen

[Tod]

Jim, Jan, Maureen, thank you for the ongoing support.

Everything I have read here points to patience in healing and so I have really worked on that. I fully believe I am not done healing by any stretch. I am amazed that I feel as well as I do.

Maureen, I am not doing speech therapy now as the therapist did not feel she could do enough beyond what was happening normally. Also, she, as well as all of my doctors, really feel that I have been through enough and simply does not want to push me into other difficulties. So, I have developed coping mechanisms: smaller bites, drinking a bit with as needed with each bite, no eating while driving, or really no "casual eating" at all. That means if I want a cookie, I need to sit down at the table with it an take my time...no walking and eating at the same time.And let's face it, this is hardly a bad way to live. The choking episodes are much reduced in number, and I have had to self-Heimlich only once. Most of the choking is actually caused by mucous or dry crumbs,

In February, the ENT taking care of my vocal cords and I will talk about next steps to try, if needed at that point. He's done two gelfoam injections and the second did not last long at all in terms of vocal affects. So, we'll wait it out. I see him on the 24th so he can scope and look for signs of movement.

December 1 we start the process of determining if I am a candidate for BAHA. Again, my neurotologist simply wants me have had plenty of time to heal before moving to the next step.

With all this support, such as the very frequent MRIs (I don't know how it is for everyone else, but my MRI is scheduled by my neurosurgeon's office with a followup appointment with him a little over an hour past the start of the MRI), how can I not be willing to be patient?


Life really is very good. And the real truth is that this has been a very positive experience for me.

[leapyrtwins]

Tod -

you definitely have the right attitude.

I, too, think my AN Journey was a very positive experience; it changed me in many ways - for the better.

It's my personal opinion that you'll like the BAHA.  I hope you're a candidate. 

Jan

[TR4guy]

Hey Tod,

I read your Journal tonight.
Hope I can be as positive a thinker as you seemed to be with all the "it's a good day" post.
I fear I'll be a total whinny butt.

I suppose I could go back and read to try and find the answer, but I thought I could also just ask here:

The vocal chord issues . . .  those aren't due to having the tube down your throat for so long are they?
Is it paralysis due to nerve damage due to the surgery?

[Tod]

Scott,

The vocal cord paralysis is a result of both the nerve trauma from the surgery and being intubated for six days. Whether it was more one than another, no one knows. I will say that I was told by all the docs I talked to that there was about 20% chance of speech and/or swallowing difficulty post-surgery, So, while I was very disappointed, as I was with the initial facial paralysis, I wasn't surprised.

I also look at this way: the beginning of January I was told I had to three to six months to get this taken care of or coma and death. Six months was July. Its now mid-August. So on that score it is easy to feel pretty good.

Your journey will be what it will be. Everyone here has had their own journey, but we all share similar experiences and an understanding of what they mean.

As far as it being a "good day"...well, it could be that have watched too much Star Trek and I am leaving off the "...day to die" bit.  But no, I do mean it, every day is indeed a good day. A coworker, a former Marine, would always say  "every day's a holiday, every meal's a banquet" and some of that rubbed off. It is a good outlook to have.

Jan, I am looking forward to the BAHA discussions. SSD can be a frustrating at official dinners.

-Tod

[Lizard]

Tod,
I admire you positive attitude as I had a hard time recovering and in my opinion still am, but attitude was something I struggled with.  I was very depressed over the winter and that's when I found the forum after being pushed by my husband to find some help.  This group has really changed my total outlook on life, and has turned a negative into a positive and I'm grateful, I've also learned many great things from the people here.  Especially that what I've been going through is totally normal...
Take care and I'm sure you will continue to see positive progression as your recovery continues.
Liz

[jaylogs]

Hey Tod, thanks for the great update report!! I am glad you have such a positive outlook on things! It sounds like you are doing very well.  Like it was said before, it can only get better as time goes by! I am a couple of month ahead of you, so I can relate to your journey as I am not too far off from it! Take care and keep getting better!
Jay

[Tod]

Hey Liz, if I had had headaches, I'm not sure I would have been so positive. I was so relieved when I realized they weren't occurring. I have known too many people, including my dear wife, who suffer from debilitating headaches to take the issue lightly. Quite honestly, it is easier to be positive when you are very lucky....or at least able to convince yourself you are lucky.

I certainly had my down times. But I am also very afraid of depression, so I found a way to convince myself to be positive.

As you know, none of this easy...and it does help to have a community of people who understand what you are living through.

Tod

[Lizard]

Hey Liz, if I had had headaches, I'm not sure I would have been so positive. I was so relieved when I realized they weren't occurring. I have known too many people, including my dear wife, who suffer from debilitating headaches to take the issue lightly. Quite honestly, it is easier to be positive when you are very lucky....or at least able to convince yourself you are lucky.

I certainly had my down times. But I am also very afraid of depression, so I found a way to convince myself to be positive.

As you know, none of this easy...and it does help to have a community of people who understand what you are living through.

Tod

Thanks Tod, and I did give myself a little room, because of my headaches, but at the same time I know that attitude is everything. Sometimes its just hard to see the positive in a situation is all.  Regardless of being lucky, this recovery is no joke and I had NO idea what I was in for.
Thank God for everyone on this forum, its like having a second family.
Take care,
Liz

[moe]

Thank God for everyone on this forum, its like having a second family.

Indeed it is like a second family Liz! 

And Tod,  your comment:

if I want a cookie, I need to sit down at the table with it an take my time...no walking and eating at the same time.And let's face it, this is hardly a bad way to live.

A true example of how you have to slow down... or else......The wonkyheadedness, balance issues, headaches, tinnitus, or WHATEVER we  are dealt with require us to just stop and SMELL THE ROSES. Which is a good thing, but also a frustrating thing, because I for one,WANT to do this and that, but know that I don't have the emotional energy to get through certain things. It's all about re-prioritizing, and getting used to the "new you".

I have taken up bird watching, and love to KAYAK and just sit. The simple joys of life stick out!

 Good thing my kids are older and I feel for all those who have to go through post AN life with little rugrats......

So continue your new slow way of eating, I bet you have lost some weight, hopefully not too much though.
Peaceful day to all,

Maureen

[Tod]

Maureen,

I've lost about 40lbs...in the first three months. I'm plateaued now, but once I start running and hiking again, I should lose some more. I can stand to lose a fair amount more.

Unfortunately, much of what I lost was muscle mass. So I've tried to be cautious about losing too much until I could make sure my body could handle it.

Understanding and re-setting priorities I think is key. My wife and I rediscovered our relationship during this period, especially as I became much more sensitive and understanding about her health/physical issues. In many ways I had been patient prior to this experience, now I am much more so, in more ways, and about more things. It has been very life-changing....maybe I was just a high-functioning mess beforehand.

I'm also glad that my youngest is in college and about to go back, and that my grandkids and their parents moved out the weekend I went back to work. The normal happy chaos of a houseful of people was a bit much to deal with at times.

I find it so much easier to simply enjoy sitting in the sun. I think that alone made a significant difference in my recovery and how I felt. It sure helped as I returned to work and folks said, "You look good, even tanned!"

-Tod