3 Months After Surgery, the Healing Still Hurts

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by Jodi Enders |

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I don’t recoil at the sight of a scar left by a transsternal thymectomy — the surgical removal of my thymus gland — three months ago. I’d prefer it wasn’t there, of course, but I’m starting to embrace it. The scar reveals a little about who I am, like the tattoos on my skin.

But I’m still learning to be comfortable with the sensations and feelings I experience, including shooting pains, cramps, shocks across my chest, and constant aches — all symptoms related to nerve damage that feel like the opposite of healing.

My surgeon and pain management doctors say I’m likely experiencing post-thoracotomy discomfort, as my nerves appear to “remember” the surgery.

Surgeons do their best to protect the nerves, yet they can be tiny and difficult to see. Therefore, temporary nerve damage is typical after surgeries, especially for transsternal thymectomies, where nerves are vulnerable. Permanent nerve damage is less common and requires more intervention.

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There are options that can help ease pain associated with nerve damage. But many of these require movement or contact that felt too difficult for me, too early on.

Bringing down the scar has been hard

I still feel nauseous when I look at my scar, despite having no real objection to its appearance. So, to manage that feeling at the beginning of my recovery, I avoided touching the surgery area as much as possible.

The scar itself is exceptionally tender, but I was able to tolerate pouring a cup filled with soapy water over it. And around my apartment, I wore tops that avoided contact with the scar. Applying a lidocaine roller helped with my discomfort, but even that was a sensitive issue, and I initially needed my caregiver to do it.

Surgeons might recommend scar massages two weeks into recovery or once all the scabs have fallen off. These encourage flattening and softening, promote collagen regeneration, and help reduce itching and restore moisture. However, they require rubbing the scar and the surrounding tissue with the fingertips in all directions and applying enough pressure to be effective. And that has been painful for me.

Avoiding touching my new post-thymectomy body has prolonged my healing, though, and having to tend to it makes me feel physically ill. Wearing a shirt when I’m out still makes me uncomfortable, but because I live in Florida I’m trying to get used to shirts with a high neckline, as exposure to the sun can slow scar healing.

My surgeon said I could use silicone scar sheets to help flatten and lighten the scar 12 weeks after the surgery. I was looking forward to their benefits, although I wasn’t prepared for how painful it would be to remove the scar, even with the help of soapy water. It has felt like ripping off a Band-Aid, and I have been lightheaded, even feeling like I might pass out.

What I’m doing to feel better

I know I’m making some progress in dealing with my discomfort, though. I am taking time to lie down and massage my scar while I meditate to stay focused on my healing, rather than my sickness. And while I avoid tight-fitting clothes, I work at trying not to be overwhelmed by sensations when I come into contact with it.

And I work hard to accept that the surgery was needed, and that it will benefit me in the long run.

If we suffer from chronic pain and illness, we need to keep them from gaining control of the steering wheel. Myasthenia gravis forces us to pay attention to how much discomfort we can tolerate. We should be proud about how much we fight to experience life in the face of our illness, even when events like surgery affect our relationship with our bodies.

Healing is a process, and it can hurt, require constant effort, and force us to become reacquainted with our bodies.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Amy C Scole avatar

Amy C Scole

I hope the doctors told you this before they did the surgery. When I had a consult for my thymus they told me to take two to three weeks off from work. That seemed much too short of a time. I did not do the surgery anyway. But doctors tend to minimize the bad stuff and just tell you it’s your best chance of remission. You being so young I’m sure it will help you. And nerves will regenerate over time. But I think you have brought to light the things patients might not be told up front so I applaud your article for that. Thank you

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Peggy Hilbun avatar

Peggy Hilbun

I was diagnosed with the mg in 2014 I took my first i v i g of gamunex C January of 2014 and continue to take it monthly 3 days a week I would like to talk to someone that takes i v i g or what other medicines they take I am still able to walk without a walker do Niner house work take me to my own hygiene and still cook some this has been an ongoing thing but would like to talk with other people my neurologist says I'm doing great my major problem is in my head please respond with your comments

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