47/365 – Full thymectomy vs keyhole

I was asked a little while ago, by one of the women I interviewed for Rare Disease Day, about why I had gone for the full thymectomy. It seems fitting to write about it this week as it is my six month scar-iversary.

From my initial appointment with mr consultant, he stressed that I should start thinking about having a thymectomy. Feigning interest, internally I dismissed the suggestion. There was enough to process without having to factor in going under the knife and spending a week in hospital. I had work to consider and my job has always been a top priority. I had all the fitness challenges I had planned to get through. Then, on top of the inconvenience factor, there was the fear factor. The operation would have to wait until it fits for me, is what I thought before moving on.

However, like many things in life, I wasn’t really in control of this decision.

The more I palmed mr consultant off at our appointments, the more insistent he got that I needed this operation (and to put my health first more generally). I couldn’t help wondering whether he was putting my health first. It all felt a bit experimental – up this drug here, have this cut out there. And of course it is experimental because how can it be anything else when there is no proven cause for myasthenia.

The following picture, by Myaware, shows the location of the thymus.

IMG_3013

The charity also gives the following description on its website: ‘Hormones produced by the thymus gland are thought to affect the immune system and the neuromuscular transmission although the exact role in Myasthenia Gravis is not completely understood.’

Before I knew it, I was booked in with a surgeon to have a discussion. What’s the harm, I thought? It’ll probably take months for the appointment to happen and then there will be a waiting list the length of the country to actually have the surgery. Not so much. I went along to see the surgeon who told me I could have the operation the following Monday if I liked. I told him I would need to think about it. And didn’t until I was practically told I would never get better without it.

In the mean time, I went along to a Myaware Young Generation meeting and had a chat with one of the lovely ladies there. She had the full thymectomy in a rush because she had a thymoma, a tumor on the thymus gland. However, she said if I was actually going to go for it, I should consider keyhole. It was the first I had heard about the option of keyhole surgery for this operation – why after my consultant speaking about it many times, and seeing a surgeon, was this the first time I was hearing about a much less traumatic option?

I did my research and went back to my consultant prepared. However, his argument for the full operation made sense. He said that in some instances, the keyhole surgery can only remove part of the thymus and the patient then has to undergo the full operation anyway to remove the whole thing. This means putting your body through the added trauma of an extra operation. So it was a simple choice really.

Should it have been? Although the following is based on a small number of conversations I’ve had, it’s true to my observations thus far and I would be keen to know if you contradict/fit with what I’m about to say. From the people I have spoken to that are in remission, all have had keyhole surgery, whereas I’ve yet to meet someone who has gone into remission from the full thymectomy. A few people have told me they have gone into crisis mode or had a significant relapse after the full operation.
I’ve yet to hear the same about keyhole. This suggests to me that if more finance is spent on developing techniques to ensure the thymus can be taken out through keyhole, remission rates could increase. As I say, it’s not scientifically proven and I definitely want to be proven wrong (or right) with empirical evidence.

Anyway, I went for the full operation in the end (tonight’s picture shows nearly the full length of my scar) and prior to it there was a discussion about dissecting the thymus to see if it revealed anything. I got excited at the prospect of this ‘medical research’ into my personal condition and looked forward to feedback – the only information provided so far is that it had been a bit more active than it should have been. I’ve been discharged by the hospital, although I may have to go back due to my superhero powers.

But for now I’m left wondering if I made the wrong decision not pushing for keyhole – perhaps this is as fruitless as worrying about a cause for my MG. People who have had either type of thymectomy – please do post comments about your experiences.

8 thoughts on “47/365 – Full thymectomy vs keyhole”

  1. It’s probably a little too early to comment fully on three thymectomy as my happened only 2 weeks ago. I had to wait 13 months from diagnosis until I had the operation.

    My CT showed no thyoma, if it had things would undoubtedly have been in a different time frame. My neuro was adamant who was to do it. It was a long wait and I was consented for the full works if required. However keyhole was preferred all round due to recovery rate speed.

    I awoke to find that it had been done only through my right side. It is early days and could take 6 months even 3 years before we see any difference. I can’t take mention and the steroids have an endless list of side effects I would love to kick far, far away!

    Time will tell with us all how we react without the thymus. Let’s just hope a cure is found soon too.

  2. I had the op last May and was told by my surgeon that key hole was preferable due to speedy recovery. I had cancerous tumours on mine so at the time didn’t give it much thought about how they did it just wanted it over! I have 3 tiny scars and was out of hospital a day after the op. I still take mestinon and steroids and have ivig regularly but my symptoms aren’t as bad and flare ups less frequent infact only 2 since op. Remission is rare so I’m glad for the fact that I’m improving at least and still not a yr since op. Seems all consultants and surgeons have varying opinions on us mg ers!! Guess still not enough known? I’m sure the way they do the op prob has more or less same recovery rate just depends who you see.

    1. I had the keyhole surgery done in October of 2014 (last year) and I too have the three little scars. One under my right breast for the keyhole surgery and two on my left side for the chest tubes. The surgery was quick and the recovery time was really fast. I had the cancerous tumors as well and I can report that my flares are noticeably improved from before I had the surgery. However, Im still on the mestinon and the steroids, and my nuero doc has me on Imuran to someday replace the mestinon but that hasn’t proven to be successful. I do monthly IVIG and I’m not seeing much benefit to that at this point. I’m not sure if the keyhole is the best way, but today I’d say I was happy about the recovery differences between the two options. I’m a big baby!

      1. Thanks for sharing that Barbara – I hope you start to see the benefit of the thymectomy soon and glad the flares are better under control now. My consultant continually reminds me it can take up to 2 years.

  3. I had the full operation five years ago today to be exact. I had a thymoma and my surgeon also recommended I have the full surgery because he said the same thing as yours-that it’s hard to tell if they were able to get it all out with the keyhole surgery. Even though the recovery was painful and long I am so glad I had the full surgery. I wouldn’t say my myasthenia gravis has gone completely into remission but it improved a TON after the surgery. I have to take Mestinon every day 4-6 times a day but have never had to go on any steroids or do any other treatments besides the Mestinon since my surgery.

    Before the surgery I could hardly even eat, talk, swallow, chew, smile and could hardly do anything with my hands and arms. I now rarely have any trouble with those symptoms unless I’m super work out and have overdone it. My biggest weakness now is in my legs but is managed with the Mestinon and rest b

  4. I was diagnosed in 1993, had a full thymectomy in 1994 .. I had tissue that forked up into my throat area , I was told that the keyhole would not have gotten all of it . I would say be 2000 I was pretty much of mentinon , less and less episodes . I volunteered and went back to work part time . Now I pretty much feel completely in remission, at times I think back to the days of being so weak and feeling like it was a dream .. I’ve learned over the years to trust my instincts and listen to my body, and that its ok to say no , I can’t do that . But I truly feel my full thymectomy is what helped get me to this point of remission. Best of luck and be prepared for educating others “my heart is fine, I had a thymectomy not open heart surgery… Same cut different reason”…. And I work in a hospital ! Lol

    1. Thanks for sharing Yolanda and I’m delighted you have learned to cope so well with the MG. It’s always really inspiring to hear of people who have been able to stay in remission – sounds like you have it sussed. Good health to you and keep in touch 🙂

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