- February 9, 2018 at 1:26 am
I was diagnosed with acral lentiginous melanoma in December 2017 located under my big toe nail on my right foot. On the 9th of Januray 2018, I underwent surgery where the big toe was amputated halfway in the second phalanx and two sentinel lymph nodes were removed in the groin region.
Hopefully I will get pathology results soon and understand what the status. In the mean time, I am looking for people who have had a similar experience with losing the big toe.
How have you adapted to walking, are you able to run… I have a lot of questions in this regard and it would be great to share experiences.
- February 10, 2018 at 12:41 pm
I also started a blog to share my experience with others going through this
sister of patientParticipant
- February 10, 2018 at 9:49 pm
Hi Introspection – There are several people on the board dealing with or having dealt with this type of mel. Hopefully, they'll see this post and answer themselves but, to get you started, there was a post in November that may help – here's the link:
Wishing you the best outcomes!!
- February 12, 2018 at 12:58 pm
I was diagnosed with Acral Lentiginous Melanoma in 2010 (Stage 2A), but not on a toe. My melanoma was on the heel of my foot. I wound up with a baseball-sized excision on my heel, extending onto the sole of my foot. I was very concerned how I would be impacted by the loss of that skin…all the way down to the bone. The full-thickness skin graft that I was given had no feeling or sensation, so I wondered how that would impact my ability to stand, walk, run, ski, etc.
In the end, the body is incredibly adaptable. The first time I stood on that foot, after about a month in a wheelchair, it felt so strange…like I was standing on a brick. I could not sense the pressure on my heel and would occasionally stumble. But pretty quickly I began to realize that I could actually feel pressure on my heel, just not in the same way as before. The bone, cartilage, and tissues below my graft still had feeling and my body learned how to make use of that new information in order to stablize my stance and manage my gait.
I believe the same will be true for you. Those things your body learned when you were 1 year of age, as you progressed from crawling to walking, will need to be re-learned. Your muscle memory will be challenged and revised quickly…almost without your conscious knowlege. The body and brain are miraculous in how they make the seemingly impossible so completely commonplace that you will eventually not even give it a second thought.
Best of luck with you lab results and with your recovery!
- May 27, 2018 at 1:46 pm
Thanks for the reply Mark and sharing your experience with me. I agree with you, that our body does have an incredible capacity to adjust and relearn. I myself found that I adapted pretty quickly and was limping after surgery, but after a while was walking quite normaly and you wouldn´t guess I had lost the big toe (hallux). However recently, I have had more pain in my foot, walking has been incfedible difficult and I tire very quickly.
I haven´t found anyone yet that has lost their hallux through amputation caused by cancer. There are quite a few people who have lost it for being diabetic and I haven´t been able to get much information in terms of what its like to live without your toe on the long run. I use to love to run and even though surgery was in January, it is something I don´t see mysef doing in the short distant future.
At the time I posted, I hadn´t received my pathology results, but all came out clear. No cancer cells were detected in the removed lymph nodes so basically I am cancer free!
- July 30, 2018 at 11:26 am
I was just looking through some old messages and found your follow-up message. I am glad to hear you were able to adapt to walking. I am not sure about the pain you were experiencing….though my first thought was that it might just part of the body's adaptation process. I hope you mentioned it to your doctors though….to be safe.
I sure hope you are able to get back to running. Perhaps there is a prosthetic that could help.
Keep us posted on your progress.
- February 19, 2019 at 10:57 am
Thanks for the reply and sorry for this delayed response but I don´t seem to get an alert when someone posts something here. When the surgeon mentioned I would lose my big toe, I didn´t think much of it, but a year later I have noticed it has made a huge difference. A few months after surgery I had accute pain in my foot which I imagine was from my body readjsuting to the loss of the toe. This got better with 3 months of physiotherapy. A year later, I am getting pain on my inner knee of the leg that lost the toe, and pain in the hips along with muscular pain in the upper leg. I am still surprised how a small part of your body that goes missing makes such a difference.
You mentioned a prosthesis. I use one that has a toe filler, but doesn´t do much in terms of compensating for the loss of gait. I imagine a carbon fibre foot plate could work, but I haven´t found anything specific for hallux amputation.
Just yesterday I went for a long walk and towards the end started feeling the pains in my leg reapear.
Thanks for the reply
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