Yesterday’s setting was Garry’s first post-surgical checkup at UMass Memorial. Today’s setting is going to be (in an hour from now) our regular family guy to see if we can get his blood pressure a little lower
Doctor’s office in Douglas
Mostly, it’s good news.
We discovered that he has residual hearing in his right ear and more of it than we expected. This is a good thing because it will make getting “natural” sounds in his “implanted” ear easier. The device with his own hearing will give him better highs and lows.
He won’t get all his super-high-tech equipment until August 24th, but the doctor is pretty sure he’s going to have good hearing fast. Like maybe immediately.
A sunny day in the backyard while the temperature is almost 100.
No one can explain how in the world he got Blue-Tooth from my speaker without external equipment, but he did. My speaker also has a small transmitter and Garry was wearing powered headphones, so something happened. But regardless, once he has all the rest of the gear, it won’t happen without special equipment.
Definitely the right shirt for the season. Do you think the extreme heat may have something to do with being tired? It’s really hot out there!
The incision is healed and all the wires and magnets and coils are in the right places in his head. Neat and clean. I’m trying to get him to send me a photograph of it, but we haven’t figured out how to turn the x-ray into a photograph. Yet. But I’ll keep trying. It’s really interesting.
Garry is very tired. He thinks it’s because he’s a “right-side” sleeper and that’s the ear that had the surgery. He hasn’t been able to sleep in a comfortable position since the surgery, but he can at this point if he wants to since everything is nicely healed.
He also looks sleepy all the time. I think he’s still got a bit of hangover from the anesthesia. He also needs to get back to doing normal stuff, including exercise. Sitting around all the time isn’t his most healthy choice.
Now, we wait another 18 days and then — magic.
He’s ready to go now and I don’t blame him, but they won’t put the technology in place until everything is 100% healed, so they always let it go slightly over a full month. Just to be sure.
Meanwhile, to keep him sane, the Red Sox are winning and it keeps him from watching the news and getting completely crazy.
By the time you read this, we will be at the hospital and quite probably surgery will be underway or even finished. I guess it depends on what time zone you’re in.
This is exciting stuff. Nervous-making, too. It will be at least 5 weeks until he is out of bandages and fitted with all the technology.
Remi, Garry, Tom, and sunshine
After that, it will take a few more weeks while we wait for the magic to work. The technology doesn’t produce “natural” sound. It is essentially electronic, yet the brain converts it into “real” sound. Or, more to the point, makes it sound like whatever sound we recognize as “natural.”
How it does the brain do that? No one really knows for sure. It just does it. Why? That’s another thing we don’t know. It’s a little miracle in its own right.
What we know for sure is that it happens. At some point during the first few months, the brain converts those “electric” impulses into what it “knows” as “real” (normal) sound. For some people, it happens very quickly. For others, it takes a longer and there’s no predicting which way it will go. The important thing is understanding that it will occur and when it does, its magic time.
For Garry, it has been a lifetime waiting to hear. It’s also going to mean some big changes around here. For one thing, I’m going to have to stop muttering under my breath. For the first time in our lives together, he will be able to hear what I’m really saying.
Yesterday, I got a call from the Audiology Department of UMass. She said she wanted to give me the rest of Garry’s official audiological follow-up appointments — as opposed to the surgical follow-ups. I had already gotten the ones for pre-op and Surgery, plus surgical follow-up. Lucky for both of us, she didn’t expect to talk to Garry personally. This is the only medical place that realized he can’t talk on the phone.
As a deaf person, he can’t chat on the phone. That’s what the surgery is all about. Every other time I talk to a medical person other than our family guy, they insist on talking to Garry. I hand him the phone, shout “JUST SAY YES!” Which he does and the conversation can progress. They totally fail to have a grip on the “he can’t hear” issue. Either that or they think if they yell louder into the mouthpiece, that will fix it.
No more of these!
The cochlear implant is a surgical miracle and a lot of technological fine-tuning. Post surgery, he has a date for “turning on the equipment,” three more tune-ups, with a final official get-together after six months. If he needs more help or another type of help, like speech therapy, we can add those.
It’s just as well we aren’t trying to do this in Boston. We’d never survive the traffic.
The object of all of this? To bring Garry back into the world. To make him part of the conversation. To have him in it and not have to round it up and tell him about it later. To take him out of the enclosed space in which he now lives and bring him into the bigger world — the way he was. The way I remember him.
All those objects they will put in his ear and on them? These will change him. I have a feeling they will change him more than he expects. Maybe even more than I expect.
Garry’s getting a cochlear implant. Because this is a life-changing and unprecedented event for him, he volunteered to help UMass with their cochlear implant fundraising endeavors. Although Garry has been retired for a long time, a surprisingly large number of people recognize him and he is a very good speaker. On camera and live.
The cochlear implant groups want to make this technology more widely available and try to help people who need help for hearing problems. The doctor was particularly miffed that Medicare tells people to get hearing tests, but won’t help pay for hearing aids. It’s one of Medicare’s cruel jokes — along with no help for getting your teeth repaired or get eyeglasses or dentures.
That has always baffled me, too. Most of us can scrounge together a hundred bucks for a pair of glasses. On the other hand, $5 to $10,000 for hearing aids is not something most older — or for that matter, younger — people can afford.
So what’s the point of the hearing test? If you know you can’t hear, why bother to make it official when you can’t do anything about it?
That’s hopefully what raising funds will allow. Tomorrow the camera and crew will be here for an interview with Garry, who is totally (obviously) fine with being TV cameras. I get interviewed too because the effect of deafness on a partner is an important part of the project. Except I really am very uncomfortable when cameras roll. Oh well. Anything for a good cause. I think we need a good case with which to be involved. We need to do something good.
I think most people are unaware of how much and how profoundly deafness affects individuals and their relationships. It will be an interesting project.
Because of all this, we had to clean the house. If we are lucky, the weather will be fine and we can shoot outside. Maybe on the deck. Meanwhile, Owen cut the lawn. Garry cleaned the deck. We both cleaned the house. But if we have to shoot in the house, the hysterically barking dogs are likely to make the project kind of difficult.
It’s really Gibbs who is the hysterical barker. If anyone who isn’t Garry or me is in the house, he barks continuously. Endlessly. And very loudly. He looks like a small dog, but he sounds like Great Dane.
I sure do hope we get good weather! I’ve got terrible stage fright about TV cameras and a frenzied, barking dog in the background is not going to help.
“It’s a bit stuffy in here,” I said. “Maybe I should turn on the air conditioner?”
“What’s stuck in my ear?” Garry looked alarmed.
I collapsed and I just couldn’t stop laughing. I couldn’t even answer him. All I could do was howl. Tears were pouring down my cheeks. “I … ” and then I’d laugh some more. “I mean …” More hysterical laughter.
Eventually, I managed to tell him that the air conditioner was not stuck in his ear and what I’d said was “It’s a bit stuffy in here …”
And that is why he needs that cochlear implant.
The surgery is scheduled for July 20th with pre-op on July 9 and surgical followup August 6. With a lot of audiologist visits in between.
There was no air conditioner stuck in his ear. It’s too big.
When we talk about pedigree, it’s usually about dogs or horses … or even cows and goats. In this case, I want to spend time talking about doctors.
When it comes time to for surgery, you need the right doctor. Not just whatever or whoever happens to be the one your primary has in his circle, but one who has the kind of skills and background who will make you feel secure and safe — and most important, repaired.
The right medical insurance — a PPO which lets you go to any hospital and see any doctor.
When I went in with cancer in both breasts, I was already dubious about our local hospital in Milford. After a conversation with the surgeon, I knew that I would not use her under any circumstances. She told me that there was ONLY one way to deal with the surgery (wrong) and that it would be impossible to create implants. Wrong again.
With some help from a friend who was a doctor, I found the right hospital (Faulkner in Boston) and two doctors — the cancer specialist and a plastic surgeon — who told me full bilateral mastectomies were a better option than partials AND and they would give me implants so I would come out of surgery still looking like a woman. The two women worked together on me and when they were done, I had breasts.
Not “real ones.” No nipples. Lumpy, as post surgery implants tend to be, but I didn’t feel like an alien from another planet, either.
A few years later, it was my heart. My “local” cardio guy told me (on the phone — he never found the time to actually see me in person) — to not worry. When my heart began to fail, they’d deal with it. I didn’t like the doctor and how could he be diagnosing me when he never had time to see me? He sent me to his young practitioner who never really gave me the results of the tests (such as they were) and the doctor said he had no time to see me for at least six months.
Six months?
I went online and I found a brilliant heart surgeon at Beth Israel Deaconess in Boston. I went to him. He spent over an hour explaining options. That repair might be possible, but if it wasn’t, I had to be prepared for a full replacement. There were a lot more tests that needed to be run — none of which had been so much as suggested. We made a date.
The date got pushed back for months. Heart surgeons have a lot of emergencies. It comes with the territory … and then, I got pneumonia and had to wait until I could breathe again. It took probably 7 or 8 months to finally get me and the doctor in the same place (Beth Israel) at the same time. April 30, 2014.
I still had some serious tests to be done … almost a week of testing before surgery and when they did the surgery, it was much more complicated than it was supposed to be. It eventually involved two valves and a redesign of the left ventricle. Also an unexpected bypass including replacing of an artery (taken from my right leg). Finally, a permanent pacemaker since my heart has refused to restart without assistance.
If I had followed the instructions of the original heart surgeon, I would be long dead. Not merely was he wrong, but he was terribly, horribly wrong. I have had a hard time forgiving him for his callous disregard for me. He didn’t care and he made it obvious he didn’t care.
Mass Eye & Ear Hospital
Now, it’s Garry’s turn. He is up for a cochlear implant and the only hospital that does it in this area is UMass Memorial. Which, while I’m sure has perfectly fine surgeons, but it also has massive issues with communications and organization. Worse, it has a very limited facility for this work and limited ideas of how to do it.
Technology
Like many other surgeries, there are choices. One ear or both? Some do both, some only one and it depends on the patient. New techniques exist and these are only available at Mass Eye & Ear in Boston.
Cochlear Implant
Whether or not insurance will pay for new versions of the surgery is a different question, but at least there are choices. In the year since we started checking this out, Garry has spoken with the surgeons at UMass Memorial for a bare five minutes and he never got to ask a question.
We know nothing about them — not even their names. There are two of them, one as primary, the other his secondary. Garry is — understandably — nervous and worried about the process. Boston is a long drive from here. He will need to go for the surgery, then come and go from Uxbridge to Boston pretty regularly until they get the adjustments made and he can really hear as he should. Time is slipping away far too fast and we can’t keep just waiting.
The other day, Garry discovered he has a connection to Mass Eye and Ear and has been in touch with them. I think, despite the inconvenience, we will go with the place where they have the worldwide best reputation in the world for cochlear implants.
Although we are still in waiting mode, I hope we will have the chance for Garry to work with the doctors who have “best in show” pedigrees for his procedure. Because this is important and life changing.
Pedigree is important and not just for shaggy canine pals.
The right doctor is the difference between a successful procedure and something which never works quite right.
One of the most thoughtful pieces of writing on this subject and particularly relevant in this household. Few people really understand how much lack of hearing removes you from “real life.” Garry once commented that even if you are blind, you can still communicate, but when you are deaf — you lose the ability to communicate and that’s a massive personal loss.
I wear this thing on my head. Looking at it now in the photo, it strikes me as enormous, a contraption. I wonder why people don’t just stop in their tracks and ask me what it is. But they never do. It’s like seeing someone with an artificial leg and wanting to inquire about how it works but being compelled to ignore it. What artificial leg? I didn’t see an artificial leg, did you?
This is the receiver (behind my ear) that captures sound that travels through the wire to the round thing (which is actually a magnet) and transmits the signals through my skull to a twin round thing inside my head which then sends the signals along several wires to 22 electrodes hanging out in my cochlea. The electrodes recreate the function of the nerves in my cochlea, sending the sound signals to my brain to be made…
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He also looks sleepy all the time. I think he’s still got a bit of hangover from the anesthesia. He also needs to get back to doing normal stuff, including exercise. Sitting around all the time isn’t his most healthy choice.
