I have been holding off on this latest update for several reasons. I really wanted to begin to feel better so that I could have a [finally] new perspective on post-operative life and I was really struggling about posting the pictures below.
When I started this blog almost 3 months ago, I knew for certain that I had the opportunity to catalogue the process and the progress I would make through this journey. I also knew that I wanted to use it as a vehicle that would cause me to become educated about IAS's but also drag the rest of you through that process as well. I also opined that the information would not only be for those who knew me, but perhaps for those that would pick up through the great world wide web their own need to learn about IAS treatment for their own needs.
That is what got me to the picture conundrum - is there importance in letting people know not only what to expect in terms of the physiological changes, but did it also make sense to know what it all looks like? I knew that viewing another person's incision pictures had helped me prior to my surgery, but would people judge that in some way that it was unnecessary to show the incision? And of course, for those of us of a certain age, there is that distant memory of Lyndon Baines Johnson not only pulling his Beagles by the ears, but the 'hey look at my Gall Bladder incision' as he ceremoniously raised his shirt for the press corps several weeks after his surgery.
Well, I have decided to post those pictures (not LBJ's - mine) because I think it is important to see how we heal - and quickly, too.
So here are - Monday, June 15th, 2009. Ironically this was taken at home the morning of the day we learned that I was to be kept prisoner for another 5 days in the hospital. This was exactly one week after surgery.
And here we are on Friday, July 10th, 2009. I don't know about you, but I am pretty impressed with how quickly the incision has healed. Now when people stare at me I know I should probably check to see if my fly is zipped before I assume that it's my head they're staring at.
You may ask, so the incision has healed so well, why aren't you out riding your unicycle or skydiving or rock climbing with one of your daughters? Well the answer my friends, is not only blowing in the wind, but it is written all over my face when you watch me walk - funny things happen to you when you have micro-surgery on your cranial nerves.
Let us start with the headaches. Yes, they are still here - certainly nothing as intense and nerve splitting as when I was hospitalized, but they are yet with me every day. I have learned that sometimes they show up for no particular reason, but my guess is it is part of the healing and knitting process going on internally. I have noticed that too much physical exertion can bring them on. I have noticed that if I bend down to do something (please do not tell Eileen that I do that!) it can bring one on. And plain old fatigue - which comes on quite regularly - can also be a trigger. My trusty Celebrex and I have become good friends and the twice daily dosage helps a great deal. And mostly I have learned to tolerate them to a great extent - when they get too intense, I just go lay down and try to get sleep to quiet them down.
Then there is this balance thing going on. I am asked if I feel dizzy and the answer is a definitive no. Am I able to walk unaided? - definitely, yes. Do I feel in control of complete balance? - no. I liken it to the bubble you attempt to get even on the horizon when you are using a level in carpentry. I just cannot seem to get it exactly even on the horizon. So for longer escapades I use a walking stick - for the traipses on familiar turf I am on my own. This part does not make me particularly happy at this point, but this is part of the non-linear line of recovery and I am finding new stores of patience every day to keep myself upbeat about what I can accomplish. I do walk every day - my daily walk is now almost a mile and a quarter - takes me about 50 minutes (so marathoners of the world fear not of me as a competitor seeking to take you on).
And then there is the issue of my hearing in the affected ear. You may remember that prior to my surgery, I had been measured at 64% hearing in my left ear. Well, for now I have little or none. I am scheduled for an auditory examination on the 21st of July, as well as progress examinations by both Drs. Golfinos and Roland. I am of course hoping that my current state is an immediate reaction to the surgery, the fluid that tends to build up and the healing process - and in time I will get some of it back.
I am so very grateful that I did not have any facial nerve injury at all and have not had a single moment of facial paralysis as very well could have been the case. Let's hear it for my amazing surgical team!! However, I am acutely aware of how the hearing has and could impact me on a social basis. Issues such as seating placement at a table, ambient noise in restaurants, waiters or waitresses that stand on the impaired side and tell me about specials or ask for my order while I have no idea what they have said. Here's a good one - answering the phone and spontaneously holding the phone on the wrong ear. While amusing on a limited basis, these are not things that make me smile. I had always prided myself on how acute my hearing ability was - whether it was music, conversation or the skill of hearing when a mechanical device just did not sound right and edging towards mechanical failure. I do not want to lose those abilities so we are gong to keep looking for a better outcome. In the meantime I am really trying not to let it get me down - but that is not always so easy.
The last annoyance at this point is traveling. I did take a wild adventure this past week and waddled off to the big city for a few hours - all by myself, no less. Through the miracles of mass transit, I took a train to mid-town Manhattan, went for a haircut (watch that snickering - that's really not nice) and visited my partners and staff for a few minutes. After a delicious lunch provided by my partner Gene, I headed back to the much quieter and slower moving suburbs. I am so glad I took the trip - I managed fine -slow to be sure - but I was able to assess for myself what I am up for and not. In case you're wondering - I am not up for rush hour or the fast movement of anything quite yet - this I know now for sure. But I definitely feel that the following day I felt stronger and more confident - and while our home is a perfectly lovely setting to recuperate, getting to change the venue was a real upper, for sure.
This weekend Ei and I have taken our first road trip with our dear friends Susan and Dick Hecht to the Berkshires. For a lifelong dedicated car traveler this 100 mile trip was long anticipated my me, but certainly was not a walk in the park. With the recommendation from my medical staff to recline for the trip I felt that my head would be less likely to bob around (this, folks, is not something you would normally notice at all - unless your brain was still getting used to reducing its spatial relationship with your skull. Ei and the Hechts have their agenda and I have mine. They got to take a House and Garden Tour sponsored by the Lenox Garden Club and I got to hang back at our inn and write this posting and begin to tackle my newly acquired edition of George Eliot's Middlemarch generously provided by our kind of, sort of, related by marriage, cousin, Elizabeth and husband Bob. Elizabeth, inspired by my earlier writing from Easthampton and reference to 19th century English countryside novels, offered up Middlemarch as her all time favorite and here I sit with the Brooke sisters and their uncle undertaking my first post-operative read.
Let us start with the headaches. Yes, they are still here - certainly nothing as intense and nerve splitting as when I was hospitalized, but they are yet with me every day. I have learned that sometimes they show up for no particular reason, but my guess is it is part of the healing and knitting process going on internally. I have noticed that too much physical exertion can bring them on. I have noticed that if I bend down to do something (please do not tell Eileen that I do that!) it can bring one on. And plain old fatigue - which comes on quite regularly - can also be a trigger. My trusty Celebrex and I have become good friends and the twice daily dosage helps a great deal. And mostly I have learned to tolerate them to a great extent - when they get too intense, I just go lay down and try to get sleep to quiet them down.
Then there is this balance thing going on. I am asked if I feel dizzy and the answer is a definitive no. Am I able to walk unaided? - definitely, yes. Do I feel in control of complete balance? - no. I liken it to the bubble you attempt to get even on the horizon when you are using a level in carpentry. I just cannot seem to get it exactly even on the horizon. So for longer escapades I use a walking stick - for the traipses on familiar turf I am on my own. This part does not make me particularly happy at this point, but this is part of the non-linear line of recovery and I am finding new stores of patience every day to keep myself upbeat about what I can accomplish. I do walk every day - my daily walk is now almost a mile and a quarter - takes me about 50 minutes (so marathoners of the world fear not of me as a competitor seeking to take you on).
And then there is the issue of my hearing in the affected ear. You may remember that prior to my surgery, I had been measured at 64% hearing in my left ear. Well, for now I have little or none. I am scheduled for an auditory examination on the 21st of July, as well as progress examinations by both Drs. Golfinos and Roland. I am of course hoping that my current state is an immediate reaction to the surgery, the fluid that tends to build up and the healing process - and in time I will get some of it back.
I am so very grateful that I did not have any facial nerve injury at all and have not had a single moment of facial paralysis as very well could have been the case. Let's hear it for my amazing surgical team!! However, I am acutely aware of how the hearing has and could impact me on a social basis. Issues such as seating placement at a table, ambient noise in restaurants, waiters or waitresses that stand on the impaired side and tell me about specials or ask for my order while I have no idea what they have said. Here's a good one - answering the phone and spontaneously holding the phone on the wrong ear. While amusing on a limited basis, these are not things that make me smile. I had always prided myself on how acute my hearing ability was - whether it was music, conversation or the skill of hearing when a mechanical device just did not sound right and edging towards mechanical failure. I do not want to lose those abilities so we are gong to keep looking for a better outcome. In the meantime I am really trying not to let it get me down - but that is not always so easy.
The last annoyance at this point is traveling. I did take a wild adventure this past week and waddled off to the big city for a few hours - all by myself, no less. Through the miracles of mass transit, I took a train to mid-town Manhattan, went for a haircut (watch that snickering - that's really not nice) and visited my partners and staff for a few minutes. After a delicious lunch provided by my partner Gene, I headed back to the much quieter and slower moving suburbs. I am so glad I took the trip - I managed fine -slow to be sure - but I was able to assess for myself what I am up for and not. In case you're wondering - I am not up for rush hour or the fast movement of anything quite yet - this I know now for sure. But I definitely feel that the following day I felt stronger and more confident - and while our home is a perfectly lovely setting to recuperate, getting to change the venue was a real upper, for sure.
This weekend Ei and I have taken our first road trip with our dear friends Susan and Dick Hecht to the Berkshires. For a lifelong dedicated car traveler this 100 mile trip was long anticipated my me, but certainly was not a walk in the park. With the recommendation from my medical staff to recline for the trip I felt that my head would be less likely to bob around (this, folks, is not something you would normally notice at all - unless your brain was still getting used to reducing its spatial relationship with your skull. Ei and the Hechts have their agenda and I have mine. They got to take a House and Garden Tour sponsored by the Lenox Garden Club and I got to hang back at our inn and write this posting and begin to tackle my newly acquired edition of George Eliot's Middlemarch generously provided by our kind of, sort of, related by marriage, cousin, Elizabeth and husband Bob. Elizabeth, inspired by my earlier writing from Easthampton and reference to 19th century English countryside novels, offered up Middlemarch as her all time favorite and here I sit with the Brooke sisters and their uncle undertaking my first post-operative read.
Tomorrow we are off to a Tanglewood concert to see Joshua Bell perform with the Boston Symphony Orchestra. I am very excited about this outing and am looking forward to being back at Tanglewood. Ei and I have been coming here on and off for over 35 years and this part of the country continues to amaze us both with the richness and diversity of its Summertime cultural offerings of theater, dance, music and interpretive arts as well as the scenic beauty of the region. It is indeed a very special part of the country, let alone the world as a whole. And so another test of my energy and focus await me and I look forward to takng it on.
Maybe Ei will agree to let me buy a new hat while we are at the concert. I hope so. (If you don't know about me and hats this is not nearly as funny for you as it is for those who do get it - right SGF?)
Hi Ronnie,
ReplyDeleteGlad to read a great blog. Thanks. By the way some would say that the pictures you included were your best side !! Keep on laughing. Continue to get better. Alan
Dear Ron,
ReplyDeleteI definitely think that you deserve a new hat and don't let Ei talk you out of it! One can never have too many hats. Love, Sher
Your writing is inspired. You give even us non-IAS'ers a perspective on how to deal with the vagaries of life. i'm going to get a copy of Middlemarch so that we have something to discuss other than politics. Jim says hats rule. Stetson, Tilley, Kangol; all good.
ReplyDeleteAs Dave has the same hairline, or lack thereof, as you, Ron, I know that his vote is for you to get a new hat...something soft and not too tight for around your head and to protect your head from sunburn. I'm still looking for that perfect du-rag, you know, with a long end that will cover your neck so as not to get sunburned while riding your cycle. Middlemarch may become an Oleet bestseller as many of us go in search for a book to read during the lazy summer months. Keep up the good work and attitude.
ReplyDeleteAlice