THE RIGHT PEDIGREE – Marilyn Armstrong

PEDIGREE – NOT JUST FOR DOGS!

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.



Categories: #Health, Garry Armstrong, Hearing

Tags: , , , , , , ,

25 replies

  1. God works in very mysterious ways. Imagine. You posting this wonderful article and me reading it, right when I needed to. Yes. Doctors need a sterling pedigree. I’m going to be following in your footsteps in a way in the near future to try to solve my own quandry with health that the local MDs don’t seem to have a clue about, nor want to find out (obviously). I have been thinking a great deal about that fine line between proactive in one’s own health care and being a b*tch about it, because the latter is what the physicians ’round here seem to think of any woman (I don’t know about the men) who insists on knowing what’s going on with her care and wants answers dammit, not placebos and placation. Good luck to Mr. Garry with his coming surgery. I look forward to posts about what he thinks of the world at loud..

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    • I went online. I knew what I was looking for — in my case, a doctor who was skilled in repairing heart valves with minimally invasive surgery. It turned out it was maximally invasive and repair was impossible, but he saved my life. IF I had not sought him out, I would not be alive to right this.

      IF you have a major city with really good hospitals — REALLY good ones — that’s where to go. You need a top quality diagnostician and you don’t find them in our little towns. DON’T GIVE UP.

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  2. Sometimes I wonder where they got their degree or whose palm was greased because they are a joke in a suit or surgical mask. I’m so glad you thought to continue looking and didn’t take his word for it.

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    • I look up the actual resumes and background of every doctor who is going to do anything on me beyond treating a cold or sore throat. When I say I learned the hard way, I mean the HARD way. A bad surgery can end your life and if it doesn’t, make your life a real misery.

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  3. Good point there Marilyn, it does make a difference.
    Leslie

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  4. Finding the right doctor sounds like a nightmare. I’m glad you eventually found them. I hope Gary’s operation goes well.

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    • It’s easy — if you live in Boston. It’s out here in the boonies that’s a problem. Locally, we don’t have a great selection. Boston, though … they have everyone and then a bunch more beyond that and the best hospitals in the world. It’s a 75 mile drive and not an easy one, but sometimes, you gotta do what you gotta do.

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  5. I turned on the subtitles because a film was too dark to lipread the other day. I can still hear though, so no help there. The very best of luck to Garry with this.

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    • At least we are covered from an insurance point of view. It’s a long drive the MEEI, but they do have neighborhood groups so although we might want the surgery in the main hospital, he would likely be able to do followups locally. I’ve had some very unfortunate experiences going with “the most convenient” doctor rather than the best one. It’s not worth it. It seems reasonable at the time, but the price is higher than it appears. We’ll see. We are in touch and I’m hoping we can FINALLY move this along! It is taking forever and we don’t have forever.

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      • I’ll keep my fingers crossed for you both… this would be such a good thing. x

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        • I don’t even remember what it was like when Garry could hear. It has been a long time. At least 15 years since he could hear most of a conversation.

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          • I really hope this goes well for you both .

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            • Me too. I think he’ll feel a lot better about it knowing he has the best the country has to offer than out here in dinky medical land.

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              • It is bound to make a difference.

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                • As long as it works. Which it should.

                  You know, right now, it is a black as midnight and it isn’t even six o’clock. Literally, it’s black outside. I don’t think I’ve ever seen it this dark when it was not actually night. I think we are maybe looking at a tornado. I’m going to sign off. It looks kind of ugly out there.

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                • Well, the howling wind and full darkness passed and so did the lightning, so i think we are okay. We were right in the heart of a huge storm. Remember local storms? These days, ALL of our storms are trans-continental. This one goes from mid-Atlantic to almost California. The Earth is fighting back.

                  Assuming the surgery goes reasonably well, there’s no reason why it would NOT work. MY goal is to make sure he gets the best surgeons and the best version of the technology available. Mass Eye & Ear is THE best place in the world. They work closely with Harvard University and they have invented technology no one else has access to yet. AND the best surgeons for eyes and ears in the world. Although the main hospital is in Boston (we used to live directly next door to it — like wall to wall), they do have neighborhood practices so we might not have to go into Boston every time Garry needs an adjustment. There will be a lot of adjustments. This isn’t just surgery — it’s a process of retraining for Garry and constant re-tuning of the technology.

                  While a relatively simple surgery, the entire process is very complicated and I don’t fully understand the technology. I’m not sure anyone except the surgeons and technical guys at Harvard entirely understand it. We have a lot of learning to do and — a long way to go.

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                • Getting the best you can find is always so important… as is the learning about the process.I know this is major advance…it is something I have kept an eye on for years, and I know that with you behind him,Garry will get the best.

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