Most patients who have moderate to severe CMT disease can be helped with surgery. Clawed toes can be straightened, high arched feet can be flattened, and unstable ankles can be tightened. Many patients are wary of having surgery because of misconceptions of what is involved. Historically, the only surgery that was offered to a person with CMT was a fusion of one or more joints in the foot. We have made great strides over the past decade, and now, even a fusion of one joint is rarely required. Instead, early intervention (with osteotomies to correct boney malalignment, tendon transfers to balance the foot, and ligament reconstruction to stabilize the ankle), provide marked improvement in function and often prevent further deformity.
CMT Surgery Focuses on Forefoot Deformity, Cavus Foot, Ankle Laxity, and Tendon Imbalance
In the forefoot, as the intrinsic muscles in the foot and the Tibialis Anterior muscle in the leg weaken, the toes begin to claw. The metatarsal-phalangeal joints hyperextend and the small joints of the toes flex. Metatarsalgia, pain on the ball of the foot, develops as the deformity places downward pressure on the heads of the metatarsals and the protective fat pad beneath them is pulled distally by the upturning toes. Walking becomes painful and wearing shoes becomes difficult. Cushioned orthotics, shoe modification with a rocker bottom sole and an extra-depth toe box can help alleviate early symptoms. Over time, the deformity becomes fixed and conservative treatment no longer helps. Surgery can correct the deformity and markedly diminish symptoms. We transfer the extensor tendons of the toes to the midfoot, so that their pull is no longer a deforming force and adds power to dorsiflexion of the ankle. Release of soft tissue contractures straightens the metatarsal-phalangeal joints and the toes. Three weeks postoperatively patients start their return to pain-free walking and normal shoe wear.
Correcting a High Arch
The cavus, high arched foot of CMT, causes an unstable gait, plantar foot pain and a predisposition to ankle sprains. Surgery for this problem is very rewarding in that it flattens the foot, distributes the stress more evenly across the plantar aspect of the foot, and repositions the heel beneath the weight bearing axis of the leg. Typically, the orthopaedic surgeon elevates the first metatarsal with an osteotomy at its base, divides the plantar fascia to allow the high arch to settle into a flatter position, and straightens the in-turned varus heel by removing a small pie shaped wedge laterally. If the ankle ligaments are lax, as a result of the multiple sprains and years of uneven gait, they can easily be tightened during the same surgery. The results are uniformly excellent, as patients experience a significant decrease in pain and an increase in endurance and stability of gait. A return to normal shoe wear is an additional benefit.
The Benefits of Tendon Transfers
Tendon transfers are a salient component of CMT surgery. If performed during the early phases of the disease process, progression of the deformity can often be minimized. The most typical transfer is the Peroneus Longus to the Peroneus Brevis tendon. In patients with CMT, the Longus often maintains its strength while the Brevis weakens, creating a deforming force on the medial midfoot. Transfer of the tendon to the lateral side of the foot at the Brevis insertion eradicates the deformation and increases stability during standing and gait. Even patients with a flaccid paralysis of most muscle groups in the leg can benefit from a tendon transfer. A transfer of the Posterior Tibial tendon, for example, can increase ankle strength and often negate the use of a drop foot brace.
All of these operations can be performed as an outpatient under regional anesthesia, which is preferable to most patients. They have complete pain relief for 24 – 72 hours postoperatively from the block, and easily control their residual symptoms with a combination of short- and long-acting narcotics. By three to six weeks after surgery, an over-the-counter walking shoe can be used.
Twenty years ago I operated on my first patient with CMT. She was 25 years old and had pain with every step. She used a cane. I recently received a letter from her. “My new foot felt like a miracle,” she wrote, “I was able to walk barefoot for the first time since I was 16 years old. I was no longer embarrassed to let others look at my feet and I am finally wearing normal shoes, even a small heel. Thank you for giving me back my feet.”
Glenn B. Pfeffer, MD, is an Orthopaedic Foot and Ankle specialist, Director of Cedars-Sinai CMT/Hereditary Neuropathy Center, and Past-President of the American Orthopaedic Foot and Ankle Society
My husband has cmt. He’s 41. He had bone fusions and tendon transfers 20-25 years ago and they are starting to fail. Would he be a candidate for additional surgery?
He says he’s too old for surgery, yet hasn’t spoken to a doctor about it in the 11 years I’ve known him.
Is there any surgery options for hands?
I appreciate this information. Is there anyone in Toledo, Ohio who can assess my feet and perform such surgeries if needed? I believe I have CMT, but unable to be tested as insurance will not pay for it. My Father’s mother and sisters all have weak and skinny ankles with high arches, but none have been informed that their problems could be related to CMT, My mother also had foot problems. Isn’t this enough for insurance to approve CMT testing?
Hi! I’m from Slovenia (Europe) i have CMT 2 ( although the doctor didn’t seem to be sure about it, because of my first diagnose- muscular dystrophy which clearly wasn’t- the state remain the same, no changes) well I’m 22 and I would really wanna know if there is any doctor-surgent in Slovenia (or at least in Europe) to cure this disease? And how much would cost me this surgery?
I see now that’s posibile to change this life that i have, and I would be very grateful for any information.
Thank you.
I was born into Charcot Marie Tooth CMT and have a serious issues on both feet and ankles but especially the right foot. Found out what CMT was about only when I turned 53 years of age. I am now 60 and seriously considering lateral fusion and resetting of the right foot/ankle joint. I’d really like to hear of success stories versus future complications. Right now my outer right-most metatarsal head gets way to much weight and punishment so I’d like too change that chronic pain.
I was diagnosed with CMT in 2016 and I am 23 years old now. My condition is worsening as I get older. I am too young to be feeling this way. Can you please inform me about this surgery because I’d like to know more about it and also is there any surgeons in the New England States specifically the Connecticut/New York area.
Any surgeon in Northern California?
Did you search the HCP Directory? https://www.hnf-cure.org/provider-directory/
Hi! i’m from Slovenia i have CMT 2 or HMSN my doctor didn’t gave much effort in it so i don’t know either what i have, i’m 22 (signs: drop foot, cavus foot-high arch, occasionally pain in the foot, lack of balance) i’m asking if there is a doctor to perform surgery if it’s possible to correct any of it to make it easier for me?
Hi! I live in Ohio and I was diagnosed with CMT in 2007 and I have it worse in the left foot with hammertoes and a high arch foot. And I was wanting to know who is the best surgeons who treat this kind of surgery in my area
Hi. I’m 19 years old and have already had 2 foot operations to lengthen my achilles and drop the arch of my foot. I was at my orthopedic surgeon yesterday to do a checkup on my CMT. He told me that he wants to perform a tendon transfer on my ankles, since I twist my ankles about average twice a week, maybe once a week. My question is, is the disadvantages of this surgery really worth it? And since I am still able to wear normal shoes (like wedges, but not high heels), should I rather wait until my CMT ‘gets worse’? And is surgery the only way to tighten my ankle ligaments? Is there not exercises and alternative ways to ‘fix’ my ankles?
No… surgery is the ONLY option to correct it
my sister is 54 years of age and struggled with CMT and mobility for many years. She is due to have ankle fusion and mid and hind foot reconstruction and is extremley anxious about pain afterwards and the recovery in terms of her mobility afterwards.
I live in Australia (not sure if this is an Australian site). I’m 18 and its already quite bad. My ankles will not stay upright even in orthotics and it hurts to walk all the time. My balance is shot and its just horrible. How much is the corrective surgery and how do you organize it?
I’m an aussie 32 married with kids and had both feet done in 2007 by Andrewhat Ellis in Sydney. Don’t go past him. He was trained by Grace Warren a pioneer in Tendon surgery.
I have type 1a CMT. Best thing I ever had done.
Thanks L.R! I am highly interested in having a similar surgery and will look into Dr Andrew Ellis. I know you had yours 10 years ago so I assume costs may be very different, but what is a ballpark/average cost I can expect to pay?
How much was the surgery?
Hi! do you know if there is a surgery for CMT 2 too or something similar?
I have CMT 1 foot is worse than the other, currently my options are fusion and custom shoes but they are difficult at best, really hard to walk in.
I am interested into looking for a doctor to see. I live in New Hampshire. Is there any doctor from Boston or Dartmouth Hitchcock in Lebanon that you could recommend. Thank you.
Visit HNF’s HCP Directory https://www.hnf-cure.org/provider-directory/. We are adding new doctors weekly.
I had reconstructive surgery on both feet in 2000 and all of the above tendon tranfer and muscle transfer surgery. I have suffered from cmt and had the surgery aged 32. Dr Andrew Ellis and Dr Grace Warren performed my surgery at Royal North Shore Hospital Sydney Australia. Dr Ellis specialiazes in these procedures and both these surgeons have changed my quality of life immensely in the 20 years since surgery. They were both incredibly gifted surgeons in this field .
All the bones in my foot have slid sideways is this surgery possible for someone like me to have my foot corrected
Cheryl, Did you ever find a local doctor? I am also in search.
I desperately need/want to find a surgeon (s) in NW Florida area (destin, pensacola, Fort Walton beach) that has the experience and know how to handle these types of procedures on me . Cmt problems ever since I can remember. I haven’t had much luck finding one.
You can visit HNF’s HCP Directory where you can find a doctor in your area. New doctors are added weekly. https://www.hnf-cure.org/provider-directory/
None within 200 miles. That hurts. 😕
I don’t know if you’ve had any surgery yet, but I had surgery on July 20th 2017 to reconstruct my ankle. It was destroyed by CMT. I was diagnosed 12/06/2016 , I’m still recovering. But doing well. So check out Dr. J Dean Cole in Orlando, Fl.
Joe….wondering what drs you use in the Orlando area
Looking for a neurologist there
Hey Steve I know it’s been awhile since you posted this but did you happen to find a doctor in the NW Florida area? I am in Pensacola and have been looking into this.
Alabama Orthopedic Center in Mobile Alabama. Dr Rodriguez. Both my granddaughters have CMT1A and one has Elhers Danos as well. Both have had surgeries at AOC in Mobile. It took years to find out the diagnosis and numerous neurologist. AOC diagnosed it and the surgery is a miracle.
Dr McAndrews in Mobile Alabama or Dr Rodriguez at Alabama Orthopedic Clinic. Dr McAndrews has retired this year to referral only. Dr Rodriguez is who he recommends. Have used Dr McAndrews for my family with CMT and Elhers Danos. Great results after years of drs who didn’t have a clue.
Dr McAndrews at the Alabama Orthopedic Clinic is excellent in correction of CMT feet. He has done two of my family members. My granddaughter age 12 last year had right foot done with great success and it was very deformed from CMT. Last week had left done. Other family member had foot correction 7 years ago by him. Very highly recommend.
Dr McAndrews Alabama Orthopedic Clinic in Mobile, Alabama. Excellent foot surgeon.
Alabama Orthopedic Center in Mobile Alabama. Dr Rodriguez.
Amazing!
I live in central west Virginia and would like to know if there our any surgeons who work in this area. I am 56 years old and was diagnosed in 2003 with having cmt. I also have a son that is 30 yrs. old who was diagnosed in2006. he has the hammertoe and the high arch. My other son is 24 and was born with the mylient nerve fiber wrapped around the optical nerve in his eye. he also shows signs in the feet and weakness of legs.
Dr. Chandler at Carilion Roanoke Memorial Hospital. 540.981.7000
He did my feet last year correcting the cavovarus deformity & removing my torn tendons…Feb 9th he will do the tendon transfer on my right leg …left leg later in the year… he is highly recommended
Duane, how highly would you recommend Dr. Chandler? I want to have this surgery done also but I want to make sure that this is a doctor with experience and a high success rate.
I was wondering how long is recovery?
6-8 weeks. I had this done when I was 12.
Karen can you give me an idea of Doctor Chandler success rate as it has to do with CMT surgeries.
Im in Virginia bordering West Virginia. I am only 36 years old with CMT. I have had no luck finding any help other than one specialist in Roanoke, VA.
Amazing! Please tell me if you know of surgeons in England who can perform this? I am 43 and want to walk as long as I can. I look forward to hearing from you soon. Thank you.
Hi
Just saw your post as I’m starting CMT operations here in the UK. I’m 50 and pretty active but have CMT. I’ve just had my right forefoot done by Ali Abbasain in London. He’s going to correct the heal and tendons once I’ve had some valgus corrected by a knee surgeon (Professor Adrian Wilson). Then we’ll do the left leg. It’s all on private by the way, but at last I seem to have found people that can do stuff……a very good hip surgeon is being sought at the moment as well.
Hope all has gone well with you already, if not, hope this helps
Andy
I need a surgeon desperately in Boston MA area
I am 55 and was diagnosed with moderate CMT six years ago. I since had surgery on one foot two years ago and more recently on the other splitting it up to make it
More manageable. It’s been really successful and helpful with less discomfort in shoes, safer on feet and much better in appearance. I had surgery done privately through healthcare plan in London with Stefan Weitzel