Hammertoe Surgery and Neuropathy

Ed - Thanks for the well wishes. Nobody in my family shares anything that ails me. Not one single thing. While I am overjoyed for them, I keep wondering if I could be adopted because I seem to be the only one with anything 😐 ( it’s confirmed I’m not adopted) I am doing Genetic testing in January though, my PCP thinks it couldn’t hurt to test markers for CMT, and I figure it wouldn’t hurt to see if I have anything that could be hereditary. This same doctor was a long distance runner who now has toe problems so she wonders if my running past may have contributed. Probably like PN, we might not ever know the why, but figure out how to best manage it I suppose.

Deb....I was tested for CMT...clear. I had small markers way out on the side lines but not near center with an arch indicating possibility. The neuro doc tested me because of my symptoms and my grandmother had hammer toes on both feet, she did not have PN that I can recall. She died in her mid 60's from heart failure. Recently found out a second cousin has PN, pain, numbness, non-diabetic. He has not been tested for CMT. Glad you're being tested. Never know.

Hi Deb, I was just wondering if you had recovered well from the surgery? I have neuropathy in both feet and hammer toes on just one side (probably due to my adaptive walking!) and are faced with the same impossible dilemma that you faced. You were very brave to go ahead with surgery and I wondered how your recovery was going? x

Hi Paula -
Surgery went well, thanks for asking. It has been almost 3 months, and I am glad to report that at this time I have no regrets! I had my left foot done, so once off narcotics, I was able to drive in the shoe I had to wear for 3 weeks. I am not keen on any pills that increase my risk of losing balance and falling, but only took 2 doses of the oxycodone during the 1st 24 hours, and then only took Ibuprofen for a day, and that was it, so I'd say the discomfort was very tolerable. It wasn't a constant pain, it only hurt to walk for a couple of days, but since the toes (4 of them) were the area affected, I could at least walk more on my heel until it got easier on the toes. I had my first peek of my foot when my bandage was changed after 10 days and was surprised that it looked worse than it felt, but the doctor was pleased then, and at the 3 week mark when the rods and stitches were pulled.

The toes look and feel better. They fill my shoe properly and my gait seems to be better as I can roll off my toes a little when I step vs having one foot gripping like a claw when walking. I think the most difficult part of the recovery was walking with one foot in the surgical shoe for 3 weeks. It was like a 1" thick brick, and I didn't have any street shoe or slipper I could wear to match it, so I was lopsided for 3 weeks, and I was certainly feeling it in my knees and hips. I told my surgeon that in hindsight, maybe I should have bought 2 of the shoes so I would have been more balanced. After the boot was gone, I was able to wear my regular shoes again.

I do not need my right foot done at this point, but if they started curling, I wouldn't hesitate to do it. Though they say you can drive with your right foot with the shoe, but I'm hoping I won't have too. I want to observe how my left toes adjust over time. Nobody said that PN caused my hammertoe development, they say it happens to people of all kinds. But if my toes disappoint and start reverting back to the pre-surgery position, then I'd have to wonder. The good news is that my surgeon says that is unlikely to happen!

Good luck with your decision. I know there are so many factors to consider. Our bodies have already been through so much and we get tired. I think what motivated me was worrying that it wouldn't get easier the longer I waited and hemmed and hawed about it, and I did that for 2 years. I talked to my PCP who thought it had a good chance of improving my current state, which would help my future state. We also discussed how aging and further degeneration of strength and ability could one day remove me from being a candidate for surgery. That was the reality check for me.

Deb, thank you so much for your reply and sharing your experiences. When we live with pain everyday its hard for others to understand that making these decisions is never an easy one and it is so hard when we start to overthink things and imagine all the possible outcomes if things don't quite go to plan and we end up with more pain that we started with!
I am so happy that it worked out well for you, I have surgery planned for early April and I will probably still be debating this on the day the surgery was planned 🙂
Thanks also for the recovery tips, the second boot is a great idea as my knees are also quite painful so I will definitely invest in these in advance if I decide to go ahead.
In terms of the timing, I think your motivation to be your best self and not wait for things to deteriorate is amazing x

Good luck! Please talk to your surgeon about the shoe idea for the other foot. While I loved my surgeon, he was an Orthopedic specialist, not a Neurologist, so they don’t always understand our gait issues and PN challenges and how the simplest changes can be a lot for our brains and muscles to adjust. I failed to mention that my surgeon required me to have a visit with a physical therapist in advance, which was to help make sure (or observe) that my legs and gait were strong enough going into the surgery. I think that was his way of having my PN reviewed by someone else. You’re absolutely right that it’s hard to not get consumed with “what ifs” for every single choice we make to help ourselves. What if I do? What if I don’t? That’s why this forum is so good - we get to collect experiences from others and weed through them to help make our decisions.

Hi,
I have worn a boot to the point it broke. On Amazon they sell a 'lift' that makes your other foot in a shoe/sneaker the same height. Yes, they work!
JFN

Very smart!! And my surgical shoe was given to me before surgery so it could be tried in advance for size. I would have had ample time to order one and try it out (who knows, maybe even a shoe store could have helped)

What they sell on Amazon, attaches to the bottom of your shoe to lift it to the same height as a special shoe, boot or cast.

I just happened on this discussion and have learned a lot about my own hammertoes. I didn't realize they were unusual until I read an after visit summary in my chart a few years ago. Because of my CIDP, I'm pretty picky about what shoes I wear, and the insoles I use.

Right now I'm wearing 2 walking boots. Can you imagine? I'm non weight bearing bilaterally because Levofloxacin caused both Achilles tendons to rupture. I have thick wedges in the boots, and I get to start bearing weight next week.

After my tendons ruptured I walked for a week before I saw the doctor. It was very clumsy and looked like I was drunk, says my wife. I've been both curious and anxious about what my gait will be.

When I first got the boots in the hospital one of my bent toes became red and broke the skin, so I've been attentive to them.

Thank you for sharing your story.

Jim