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The CMT Pes Cavus Blog
Do you have high arched feet (also known as pes cavus) and don't know why? You may have CMT (Charcot Marie Tooth), and there is help available.
The CMT Pes Cavus Blog 
November 29, 2012 at 8:57 am
Hi there! I hope your doing well. Im Aya im a new resident in sydney been here for 2 months now. Like you I have pes cavus too and the reason I went here is that I read in google if yer a resident you get medical benefits. I am interested to get surgery for my pes cavus feet im 30 now female, and its hard for me to walk also. We have the same feet high arched w curled toes. I never wear flip flops outside cuz im embarassed to show my feet cuz it looks weird. I wanna get surgery to correct it and also so my feet not painful whenever I walk. I hope you can share me more of your experience and which doctor you went I would really appreciate it. For years I went also to other ortho doctors and they told me they cant cure my feet but now i read also on the internet it can be cured and ow I have hope. It will be one of the biggest dream of my life If my feet can be corrected. I hope you can reply to me on my email cuz I have many question! Have a good day to you!
December 1, 2012 at 11:47 pm
Hello Aya,
Thanks for your note on my blog. I’m happy to give you any info that helps to make your decision.
I very much relate to your comment that you have been told nothing could be done for your feet. I’m also a new resident to Sydney – 8 months now – and this is the first time I have heard ‘Yes, something can be done.’ If you read my blog, you will see that it is Dr Andrew Ellis and Dr Grace Warren who specialise in correcting pes cavus/high arches. In fact, from my research, they are the only specialists in the world who combine the corrective foot surgery with transferring tendons to make the foot stronger. In this process, I discovered I have a genetic condition that has made my feet this way. Dr Ellis referred me to a geneticist, Dr Garth Nicholson. All of these specialists are based on the North Shore.
If you’re serious about going forward, here’s the route I took. I went to my GP and asked for a referral to Dr Ellis in St Leonards. I then met with Dr Ellis for an assessment. He confirmed I was a candidate for surgery. He also suspected I had Charcot Marie Tooth’s disease so he referred me to Dr Nicholson. Through genetic testing (by blood test), he confirmed I had CMT. That didn’t alter the surgery, but now the underlying condition had been confirmed.
Once you are connected with Dr Ellis – and if he confirms you would benefit from a surgical procedure – he and Dr Warren host CMT clinics once a month for those people who are considering surgery, and those who have been through it.
Hope that helps – and best wishes for your journey!
Christa
December 2, 2012 at 1:20 am
Hi Christa
Happy to recieve a response from you. Thats greay you just moved here also then your feet got cured very nice start hehe. Ive been here 2 months now but if possible im planning to do the surgery on winter maybe june since i hate cold weather I came from Singapore so im very used to humid weather.
Yes I think I really need surgery cuz my arch on the right feet is becoming painful more and more. Can I just ask if you dont mind sharing how much did you spend for the surgery? Or did you not spend since we do have medicare here. I was thinking also if medicare covers surgeries like that. Last thing how do I communicate with Dr Ellis? Does he have an email? Or should I see him in person. Thanks so much for your help its a great help for me since for years I wanted also to have normal feet and just have normal feet like everyone else since my problem also is im very conscious about how I look so my feet makes me so conscious I wear sneakers most of the time to hide them. I am very determined to undergo the surgery soon it will definitely change my life!
Kind Regards,
Aya
April 5, 2015 at 11:38 pm
Hello Christa,
Im 19 years old from Dublin, Ireland and I also have the same class of CMT which you have. Fortunately, my family was able to get me the best foot & ankle surgeon in Ireland, and get me on my way to overcoming this problem ( atleast where my legs are involved ). So far Ive only had one foot corrected, and the second foot is being corrected on 11MAY2015. I had to have aggressive surgery in order to get permanent lasting results. I had :
Achilles lengthened
Arche lowered
Tendons transfered ( I can now point my foot upwards )
Ankle re-aligned
All in all, I basically had my whole foot reconstructed. The surgery was a tremendous success and my balance / stability is very good, in the left foot atleast.
I had the surgery on 13AUG2014, and im now 7months post surgery. My recovery rate has been very fast; my surgeon says im a quick healer. Although, sensation is still hit and miss in some parts of my foot ie underneath I cannot feet anything, and on the inside of my ankle, and toes I can also not feel anything fully. I brought this to my physio’s attention and he told me ( like yours told you ) it will take a whole year to fully recover.
My question to you is : When you were 6 – 7 months post op did you have issues regarding sensation in parts of your foot ? Im paranoid now , thinking, what if my sensation never comes back ?!
Anyways, Im really glad to hear about your progress. It was your blog that got me to research, and ultimately get this surgery done; so for that I am forever grateful. If you could possibly give me some feedback in regards to my worry, I would greatly appreciate it
Thankyou so much,
Lorcán
November 9, 2017 at 10:21 pm
Dear Lorcan,
Apologies that it’s taking me a ridiculously long time to respond to your question.
I don’t remember having less sensation in my feet and toes post surgery. In fact, the sensation in my feet and toes was improved right after surgery, if I remember correctly. But it’s been ages since you wrote to tell me about your complaint. Did the sensation in your feet and toes improve with time? Did the exercises from your physiotherapist help?
I’m so, so happy that finding my blog helped you to get the necessary surgery! It makes all the difference that I took the time to write the blog that you were helped.
If you have a moment, please do write to me to tell me how your progress is going. I’m going to write a new blog posting shortly and plan to answer questions promptly in the future!
Best wishes,
Christa
November 21, 2015 at 12:59 am
Hi Christa
Its me again hows your recovery so far I hope your doing well. Its been a while. I have seen Dr Ellis and i have done testings and they have diagnosed me with slight polio not cmt. I will see Dr. Ellis again soon 2nd week of December to discuss about the surgical procedure that cn be done to me.
i just want to ask you how much did you spend for all the cost in the surgery and whats the best private insurance to use for this surgery? I am very sorry to bother you but yu are the only person I can ask about the details of the surgery. I am saving up for the surgery but I wish I will not be shocked with the cost of the surgery so I am preparing myself ahead.
can you please email e a response my email is ayaclarete@yahoo.com. Or you can reply on my post here.
Thank you very much and have a great weekend!
November 22, 2015 at 10:53 pm
Hello Ava, Thanks so much for your note. I hope my reply finds you well. A diagnosis of slight polio seems far better than CMT. CMT has caused wastage in my muscles, which makes walking challenging, even with the surgery. So that’s good news for you, I hope. That’s also great that Dr Ellis can probably help you. In my experience, he’s a good surgeon. As to the amount I paid, it was around $20,000, plus an additional few thousand (maybe 3K) to re-correct my second and third toes on both feet, which was a second operation. Most of the 20K for the main reconstructive surgery went to pay for my hospital stay versus Dr Ellis’ fee. I don’t know about insurance providers – I moved from Australia over 2 years ago and live in Canada. But if you are covered by an insurance provider, this will cut down your fee quite substantially, I would imagine. Very best wishes for your surgery, Ava. I hope it goes really well. If you have any other questions, please feel free to write again. And let me know how the surgery goes (if you decide to go ahead with it, of course)! Christa Date: Sat, 21 Nov 2015 00:59:51 +0000 To: cjmcdiarmid@hotmail.com
November 28, 2015 at 7:49 am
Hi Christa
Thank you for taking your time to write me back a response I appreciate it. Hope you are doing well. Im so happy to talk to someone out there who knows how i feel having a high arch feet Ive always thought im the only person with this condition.
I will be meeting Dr. Ellis soon 2 weeks from now to discuss about the surgery and I am very excited. I just have a few more questions if you dont mind cuz I want to know how does the surgery goes and the other stuff about it. Sorry for my english im from the Philippines so english is only my second language I hope you can bear with me hehe.
I have listed some of my questions below i hope you can reply:
1. When you found out that Dr Ellis can perform surgery to your feet, how long did you wait for the surgery? did it take you months or years to actually get the surgery?
2. Did your insurance cover your bill or did you have to pay all from your pocket the cost? Or medicare can cover part of the surgery as well?
I am a permanent resident in australia and I just bought a private health insurance 2 months ago but I think there is a waiting time of 1 year before you can fully use the insurance for having a surgery which is fine with me as I am wishing I can do the surgery late next year. His PA has told me as well if I have a private insurance it will cut down the cost of the procedure
3. Was it very painful after the surgery? How many weeks did it took before you can start walking again?
4. Did you have very visible scars on your feet? Did they made the incision under your arch of the feet or on the side or on top?
I will let you know how my appointment goes and I really hope I can get the surgery by next year. Having this feet is actually difficult its hard to buy shoes and I miss a lot of events usually if there are formal gatherings I skip it cuz I cant wear any heels or nice shoes or if I really need to go I wear strappy sandals and maxi dress to hide my feet.
Thank you very much in advance! xo
Aya
December 6, 2015 at 10:31 pm
Hello Aya, Congratulations on your upcoming operation. I hope it’s a great success. I have replied to your questions below in the text of your message. I hope they are helpful. Cheers, Christa
Date: Sat, 28 Nov 2015 07:49:51 +0000 To: cjmcdiarmid@hotmail.com
December 7, 2015 at 12:00 am
Hi Christa
Sorry I cant see your reply?! could you please repost it again? thank you very much!
Aya
March 30, 2016 at 3:16 am
Hi there! I teared up reading your entries! I don’t know anyone or have I met anyone with this condition before.
I am sitting at work and all I think about from day to day is how to live with high arched feet which seems so superficial of me – I just want to walk with confidence and not worry about how I look in shoes!
I have so many questions to ask!
Kim
November 9, 2017 at 8:58 pm
Hi Kim!
Ask me anything! Most of my story is written in my blog post, but I would be happy to answer any specific questions from you.
I will be writing a new entry very shortly about my experience post operation, five years later.
In the meantime, I hope you’re managing with your condition.
Best wishes, Christa
April 1, 2016 at 5:13 am
Aya hi,
My name is Dr Scott Denton and i have CMT. I am wondering if you are a member of the CMTAA. Perhaps we could have a chat?
April 18, 2016 at 6:32 am
Hi Christa and Aya, reading your blogs and comments has really struck a nerve with me… I’m tearing up reading this. I’m 32, from Sydney and have been living with the anxiety and paranoia of this condition – masking it with a strong personality and always trying to find ways to camouflage and hide the deformity. Finding shoes that would accomodate the awkward shape of my feet. Similar to yours along with the hammer toe and curled feet. I think about it everyday – thinking of ways to walk down a street and hoping people won’t notice (majority don’t) but there is that Occassion where your friends or people you know may notice your feet are either wider than usual or the arch is fairly higher than normal. Even showing them to a partner for me can take years because I’m so embarassed..It’s just awful and hard to live with. I can’t wear most of the shoes out there. If I find a nice pair I’ll buy a couple so that I don’t have issues finding shoes that can fit my feet comfortably and look ‘decent and normal’ I never show my feet – always find a way to hide if I go to the beach or find a situation where I need to expose them.
Never knew what this condition was until I googled deformities with feet and CMT – I don’t have pains which is what a lot of people experience. I thought I was the only one with this deformity. Always dreamt of having surgery without knowing if it was possible… I would love to know more about your experiences and who you spoke to to get tests/advice? So curious! Tired of living like this, hating my feet and this condition…
November 9, 2017 at 8:55 pm
Hello Kimmy! Thanks for your comments and your questions. I’m sorry it’s taken me this long to come back to you!
I truly empathize with your situation with your feet. I also had years of hiding my feet and getting really stressed out about finding any shoes that would fit, let alone look nice on my feet. You are definitely not the only one! 😅
Back in 2012, I did some research online and found Dr. Andrew Ellis in Sydney, Australia. He sent me to Dr. Garth Nicholson at the University of Sydney to do the DNA test; this test confirmed that I indeed had the genetic condition, Charcot Marie Tooth.
I felt relieved to know what the issue was, and also to be approved by Dr Ellis for surgery. This was done about two months later. The rest of the story is on my blog postings!
Please drop me a line to let me know how things are going. I would love to hear how you’re doing.
Best wishes, Christa