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Wednesday, July 20, 2011

Dr. Peter J. Jannetta and me.

To paraphrase Paul Harvey: here is a part of the rest of the story.

In an earlier post I wrote about what happened when Dr. Jannetta operated on me. He did what is called an MVD, a microvascular decompression procedure, more commonly known as the "Jannetta Procedure". This is why my parents and I trusted his word. The surgery was named after him. If not him, who would know more about the potential risks?

After the Martinez procedure there was concern about my eye because of the lack of feeling. As a result it was at risk of something getting in it without my knowing. I was told I needed to take extra care - to be aware of any changes in the eye in case there was something in it or another problem such as an infection.

Because the feeling was gone in my entire left face including inside the mouth I had trouble eating and drinking. I would sometimes miss my mouth when I tried to eat. I burned my chin a few times when I was unaware of how hot a food was. There was no way to tell when something was on my lip or mouth. Liquid spilled because I could not tell if my mouth was completely closed. I needed to use a straw to drink.

Within a few weeks I got better at drinking and eating. It was not great but food stayed in and I could drink directly from a glass. The effects of the Jannetta Procedure ruined all that.

My mouth did not close on the left side; food did not stay in my mouth, I could not tell if there was food in the left side of my mouth. It fell out every time I ate. I could only eat if I had a mirror and checked it each time I took a forkful of food. I was embarrassed to eat anywhere but in the privacy of my apartment. Anywhere else I pretended to eat and hoped my hunger could wait until I was somewhere alone.

The paralysis no longer allowed me to close my eye. It turned bright red and stayed that way. The ophthalmologist at Pittsburgh Presbyterian told me there was a chance the eye would not be able to sustain its health. Between the lack of feeling and now the paralysis it had lost all its protective abilities.

It dried out. I had to use artificial tears every hour. He did not hold out a lot of hope that it would be able to sustain itself for a long period of time.

He was right.

I returned to my parents home. The eye got redder and redder. I was out of the hospital for only a few days before it got so bad I had no choice but to have it seen. I went to Wills Eye Hospital. I was told to lubricate it as much as possible and come back the next day.

The following day I was sitting in the exam chair. Dr. Arentsen, the doctor who had seen me the day before, was standing behind the chair. Into the room walked another ophthalmologist. He stood at the door, many feet away from me. "Why didn't you do it yesterday?" he asked Dr. Arentsen. "It is so ugly. I did not want to do it to her." he replied, as though I was not in the room. He was talking about sewing it closed. It was devastating to hear. It was more devastating to see.

I was taken down to the O.R. as soon as a room was free. This was a true emergency. Using just an IV valium, they sewed the eye closed.

I was so upset that this had happened but I thought How bad, really, can it be?, it would look like I just had one eye closed, a permanent wink. No. It did not.

The eye was closed on the left and the right side of the lids. They did this by suturing shut top lid to bottom lid. Ultimately it would heal together like a cut. There was an opening in the middle so they could examine it when need be. It was disgusting. Mt stomach lurched when I saw myself the first time. It was made worse by the stroke-like appearance I now had as a result of the paralysis.

I thought I could write more but it is harder to write than I thought. Maybe this is the cathartic part.

7 comments:

  1. Oh Carol, you poor thing! How awful for you! Major hugs,
    Chelle

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  2. Thanks Chelle. I appreciate them and gentle hugs to you. Have a good night. Carol

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  3. My name is Karen and I just posted a comment for you on your other article, and now this! Major hugs to you, and even stronger prayers are going up for you. I am so sorry. I said this in my other comment, but after living in intolerable pain for 28 years, I was diagnosed with non hodgkins lymphoma on June 1st by an ENT who biopsied the gigantic node on my neck (which my PCP said was just a cyst), and I wouldn't even think of prolonging my life. It's been nearly 2 months and I haven't even seen an oncologist yet. It's sad that my pain has been so untreated (even though it is well-documented) that I don't want to prolong my life. My pain isn't visible to the naked eye, therefore it isn't "real" to the world. But this diagnosis is actually an answer to prayer that there was an end in sight. But even now, after suffering suicidal level pain for 28 years, people think I'm being a ninny and not brave like others for not undergoing chemo or radiation. You can't win with people. I don't even try anymore. I think the constant frustration of having people judge me for pain they couldn't see drove me just as crazy as the pain I've lived with. As I said in my first comment that just got posted a few minutes ago, I told one doctor recently that it's better to suffer physical pain than to add psychological abuse to it too by asking for help. I'm so sorry that you have this additional trial now though. It is helping me to know that I am not alone in my 28 year journey. I thought it was just me (negative Narcissism--I laughed at that. I NEED to laugh. It gets those endorphins going). I'll keep checking on your posts. And again, I'm so very sorry for your continuing suffering.

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  4. Hi Karen,
    That i one of the biggest problems for many of us, the invisibility. People tend to not trust what they can't see and they don;t want to believe that pain can actually last and last and last.
    Glad you got a laugh. Hope to do another happier one soon, trying to decide if I should do another intermission or just get to the end of the med mal story.
    Ill be looking for you. ((*_*)) and thank you. It does help to know others are in the same boat.
    gentle hugs again
    Carol

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  6. Pain Management Drs... Thank you for taking the time to read and comment. Carol

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