Pre-Operation of Index Finger

[megan1990]

I am a 31 year old female with 2 bubbly kids and an active lifestyle. I live for hobbies and learning new things. I have suffered with Arteriovenous Malformation (AVM) in my right index finger since birth. It causes a lot of pain and discomfort in my right hand which also happens to be my dominant hand. I have had some surgeries to try and stop the pain and save the finger, but I am out of options. My surgeon has referred me to a plastic surgeon and my journey to save my finger has ended and a new journey has begun to improve my quality of living. I am terrified of this operation but at this point it is my best chance to have a successful, pain-free life. Due to covid my appointments have been postponed, the thought of amputation weighs heavy on my mind and I feel really lost as to how to comfort myself through this. If anyone has anything they can suggest or comment to help me through this scary time I would be extremely appreciative. 

[stonecutter]

Hi Megan,

Welcome to the forum. I am a below-the-knee guy so I'm not sure that my advice applies directly to hand/finger folks. It's a totally different situation because as a below-the-knee amputee, our prosthetics are kind of like knee-stilts and (in my opinion) can be easier to adapt to compared to something that affects our hands, which we use thousands of times per day.

What I can tell you is that the human condition can be pretty impressive. We quickly adapt, as you will quickly adapt if you do end up having the amputation of the finger. The amputation won't be 100% painless but sounds like it will serve to eliminate the chronic pain you have been suffering for 31 years.

We do have some arm amputees who are regulars on the forum. Hang out, keep checking back. I'm sure at least one of them will be by to impart some of their sage advice.

Feel free to ask any question that you are curious about. This is a psychologically safe place where you can ask anything.

I hope you're having a good day.

Thanks,

[leftyeric]

Hi, Megan,

There are several people who participate on this forum who have
had amputations of hands, arms, or fingers, and experienced the aftermath, and I expect we
could offer you some reassurances! But first, can I ask: you mentioned being "terrified" by the operation.
Can you say a little more about your fears? What in particular terrifies you? Pain after
the operation? Living a life without your finger? Or simply going through the operation itself? What
most worries you?
Eric

[megan1990]

Thank you so much for your kind replies and sorry for the delay in response. Regarding the surgery, I’m really afraid of the pain that will follow as well as just the idea of being put under and giving someone the go ahead to remove part of my hand... I guess I’m also just stressed about how I’ll respond mentally to such a huge change physically, a change I’ve been avoiding my whole life. I have so many questions regarding the outcome of the surgery and have to wait to speak to my surgeon but the appointment keeps being pushed back due to Covid. It’s hard to keep busy and keep my mind off of everything especially because my hand is always acting up. The pain medication I am on is really strong too and I’m struggling to decide daily between being in pain or being “spaced-out” from the medication. Today has been a particularly rough day pain wise so I am more sure than ever I want to go through with it.

[leftyeric]

Megan, Here are a couple thoughts. Back in the 1960s, general anesthesia was a dangerous undertaking, with a real risk of serious complications or death. But they’ve gotten much better at it, to the point where these days it’s really completely safe. Because of various health problems I’ve had a general anesthesia many times, like almost ten, I think. Here’s an amusing fact – if you’ve had medical problems, you are aware of how boring it can all be – hours going to and from appointments, hanging out in waiting room, sitting on an exam table waiting for someone to show up, cooling your heels waiting while the not-so-stat “stat test” gets completed, messing around with the internet trying to get your records transferred. General anesthesia is the exception to all that. The two hours you spend in surgery will feel like ten seconds. The surgeon shows up in the room, nods at the anesthesia tech, and “click” all of a sudden you are lying in the recovery room, feeling a little woozy for a few minutes, but all done. So, surgery is the only unboring part of being a patient!
You mentioned being active and liking to learn new things and having hobbies. I think you are going to find all that MUCH easier with your super painful bad finger out of the way. Your thumb, middle and ring fingers will quickly learn to take over all the jobs of your index finger. For a few weeks you will be clumsy while eating, but that will pass soon.
I know you will find this difficult to believe when I tell you now, but you really do not need to worry about a big change in your physical appearance. It is amazing how many famous people, well-known actors, politicians, athletes, etc, are missing a finger, and no one even knows about it until you see the famous person's name on a list of people missing fingers. It’s not that people won’t see it if they look for it, it’s just that they probably won’t look for it and if they do, a missing finger is just not very weird looking, in the grand scheme of things If you are wearing a brightly colored scarf, they’ll remember that more than the missing finger. If it comes up in conversation, you’ll have a cool story to tell about your missing finger, or you can always make up several alternate even cooler stories. An important rule of being an amputee is you get to have fun with it!
Pain won’t necessarily be gone entirely – many amputees have “phantoms”, some pain where their missing part is. But you will have less pain than you have now, and you won’t have to worry about making phantom pain worse by catching your missing finger on something.
Good luck! Let us know about more questions and please come check back in with us after your surgery!
Eric

[leftyeric]

Forgot to add, whether they are 18 months or 18 years old, your kids are going to take their cues from you. First of all, they won't care much how many fingers you have, but beyond that, they will be proud that their bad-ass mom rocks her missing finger with a little swagger. None of their friends can brag about that!
Eric

[stonecutter]

Leftyeric has imparted some valuable wisdom. I totalled up my surgeries... I am at 7 related to my accident/amputation now with three that are unrelated. The description that leftyeric gave you of being put out is spot on. I found that the people in the OR to the recovery room nurses to be some of the most caring people I've ever dealt with. They know you are uneasy. But put it to you this way. I had to have a revision surgery on my residual limb (stump) in 2012. During all the preop meetings, I was offered the option of an epidural surgery where I'd be awake and alert during the surgery. Given that they anticipated whipping out the old bone saw and trimming my residual limb to improve the condition of my stump - it was no deal. I insisted on being put under for the surgery rather than be awake for it. The long story short - I was prone to infection that, as my doctor told me, would eventually be what kills me!

The recovery from amputation isn't pain-free. There's the obvious pain of recovering from being operated on - that's temporary and goes away in days. There's the phantom pain aspect - the best descriptor for this was given to me after my amputation by a ward nurse. When you are born, your brain has a map of the body. That map is carved in stone - it's unerasable. WHen you have an amputation of a body part, your brain can't remove it from a map. So there's times when your brain tries to figure out what's up with a body part that hasn't 'reported in' for a while and that's what phantom pains are! Some people have no, or mild phantom pains. Some people have them regularly and they command more of your attention by being a bit more intense.

There's a lot of theories about phantom pain - but not a lot is known about it. I have a theory that relates to what your brain knows about the amputated part prior to amputation. For me, I had a crushing injury, an infection that led to gangrene, and a full-thickness burn. I have a feeling (a theory) that when I suffer phantom pains, they are intense because that's the last information my brain has prior to the body part going AWOL.

But for the overwhelmingly most part - being an amputee is painless. I still feel my missing foot 24/7. It feels nice. To me, my missing foot feels like I have a snug boot on all the time. Which, by the way was what I was wearing when I got into my accident.

I hope this background helps. Please do keep checking in, asking questions and telling us how you're doing.

[megan1990]

Your replies have me in tears (happy tears). I saw the surgeon last week and the surgery is a go...the date is still tbd. Eric, your reminder of how quick the procedure will feel truly helped. I think I am most afraid of the aftermath to be honest. I will have to relearn how to do a lot of things, and I’m just afraid of the pain during the healing. I have to keep reminding myself that it is going to be better when the finger is gone. The pain of recovery will recede and then I might have a shot at a pain-free life (for the most part, we all have our aches and pains). I just have to say, thank you so much for making me feel not so alone in this. As much as my support system is here for me, they don’t know what I’m experiencing. Thank you for the knowledge, your time and especially your kindness <3

[leftyeric]

We all wish you the best, Megan!