Charcot Marie Tooth Disease [Best Foot Treatment!]
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- Опубліковано 6 сер 2024
- Charcot Marie Tooth Disease (CMT disease or syndrome) is a very rare neuropathic disease. Charcot Marie Tooth Syndrome can lead to peripheral neuropathy with a cavus foot and foot drop.
Dr. Tom Biernacki goes over the absolute best Charcot Marie Tooth disease treatments, the causes & the symptoms. It is possible to live a normal life span with Charcot Marie Tooth Disease, to avoid foot drop and to prevent ulcers. Charcot Marie Tooth can lead to abnormal gait, but we will show you exercises and braces to make it better!
If left untreated, Charcot Marie Tooth Disease can lead to peripheral neuropathy, it can lead foot ulcers, the champagne sign and foot drop. Don't let this happen to you! Follow these Charcot Marie Tooth Exercises!
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If you are are having heel pain with your high arch foot: ua-cam.com/video/PZVD8Pl4IFA/v-deo.html
Also let us know if the disclaimer edit is annoying or makes the disclaimer less painful?
1) Do you have any opinions/helpful info on the drug PXT3003-03 that's been advertised for CMT? 2) Is massage therapy helpful to lengthen/strengthen the affected muscles? My husband has CMT and trying to learn about it...
Unfortunately you would have to check with a specialist in person, we have to keep the advice general and education, hope you find some help!
I wish I could find a dr that understood this disease.
I was born with CMT, I inherited it from my father, my sister has it, & my son has it. This video was informative, but you only touched the surface of this deteriorating, debilitating & progressive disease.
I wish this disease on NO ONE!
The best thing I ever did was go to a Podiatrist (whom I have to see once a week for callous debriding to prevent pressure ulcers), so this portion of your video was excellent advice!
However, not all CMT’ers have success with orthotics or AFO’s, and anyone with CMT who says they can wear a shoe with any kind of heel… is telling fibs. What you left out is that CMT ALSO affects the hands, not just the feet and each person with CMT is affected differently… in fact CMT has many, many sub type’s that is to say CMT affects the motor nerves, the muscles, and the bones to the point that you can have no balance, no reflexes, constant pins & needles, muscle atrophy & wasting away of muscle, and the chronic pain from the deformities is immense! You can also injure yourself and not even know you did until you’ve done serious damage to your feet/toes/knees/arms/fingers/hands.
From a foot perspective only, all great information from this video, but I felt like you depicted having this disease as walk in the park, especially if you do these specific things. CMT is an awful and life changing disease that worsens with age.
I agree Hoka & New Balance brand shoes are best for wearing offloading orthotics, great for fused toes & foot bones & wide widths.
I have had no success with ankle surgeries (soft tissue or bone) for me. Currently waiting on an ankle fusion, and I’m not looking forward to it.
A very good and informative video, better than others I have seen, I wish 10 years ago I had access to podiatrist’s, quality foot ware & orthotics/afo’s - maybe my feet would be less affected and I’d still be able to work. By the way, NONE of these services are “covered” unless you have great medical benefits, or you are in a financially “good position”. And no, government benefits will not cover total costs of these services or products (only a portion of them are covered partially & they come with a yearly cap). This is not a disease for the financially challenged.
Kes 🖖🏽
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I found this informative video I have 0 balance and have been falling way to often so I'm glad I came across this video hopefully some of the things he talks about will help me. I agree with your statement but he is a foot specialist so at least he touched on this will be extremely helpful when I go see my doctor who has no idea.
@@seyfeddindemirsalam sizinlə necə əlaqə saxlaya bilərəm çox çox xaiş edirəm mənə cavab verin mənim oğlumda belədi sizinlə danışmaq istəyirəm
My husband is 81, has CMT and can only walk about 6 steps, but he has no pain thankfully, he was able to drive until 3 years ago. now he is dying withered up with this nasty disease, but until 6 yrs ago he was playing shuffle board and lawn bowling (we live in a senior community) so there is hope for people to live up in their 70s and have a life, he had worn braces for about 20 yrs. His sister had this disease too and she passed in her early 70s, was in a wheel chair at end of life, but she was a chain smoker, so that made a difference too that she passed before her brother and was 5 yrs younger...stay strong out there...we need a cure for this.
I’ve had it since birth, I’m 57 and I refuse to let it beat me. There’s plenty I could tell you but it affects each person differently.
Can you tell me the medicine name you are taking. I am too young and i got affected by it.
@@Sudipgajurel10 I don’t take any medication for it, I do stretching exercises twice daily to keep my calf muscles from drawing up.
Thank you so much for all your tips and advice Dr. Biernacki.
Great info and so helpful. I've had CMT for years and didn't know some of this. Having that visual foot piece really helps in understanding too. Thank you!
This is great information I needed to understand a patient on a MH Ward I work on. As a HCA I had honestly never heard of this condition. Many thanks 🙏
I had tendon transfer surgery on both feet about 25 years ago. Reduced the amount I was falling.
Informative and easy to understand this complex disease. Thanks for creating this 🙏
Wow thank you so much for you amazing feedback and help growing our channel. Great fans like you are really what keeps us working hard and motivated to make better videos!
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My grandfather had this, one of his 6 children had it also. I'm also Canadian 😊 great video
Tanks for your great information 👍
I'm from Iran .
I have this problem
Thank you very much for this video! I hit the subscribe button for you.
It's the first time I do take care of my disease with 29 years. I do have some little issues you described. Now I will go to the doctor here in Germany.
Funny fact..I lived in Michigan (Lansing) for a year.
Wish you all the best!
Great info. Great delivery. Thanks
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Always good and helpful foot information. Thanks
We are trying to step up our game, thanks!
BEST explanation ever regarding the high arch and hammer toes I have had for most of my life! Having worked on concrete floors for the last 30 years, I learned to cut out the toes and heel out of my over the counter orthotics. 😅
Wow, we appreciate the kind words and your watching Chicken Master, we hope you get some great relief!
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Outstanding video thank you so much
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We are working hard every day to make better and more meaningful content! This is what keeps us going for sure.
Very very good video thank you Doc⚕️
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Very informative. Never heard talk of soft tissue surgery being done though I’ve thought it could be helpful. Thanks
Wow thank you so much for you amazing feedback and help growing our channel. Great fans like you are really what keeps us working hard and motivated to make better videos! We hope you feel better and find some relief.
If possible we would really appreciated a review from a great fan like you!
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Good vid Dr!
Thanks for being such as great fan! we really really appreciate you watching and giving us such great feedback.
If possible we would really appreciated a review from a great fan like you!
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We are working hard every day to make better and more meaningful content! This is what keeps us going for sure.
Nice video, i dont have CMT but a relative does so im trying to learn about it
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All the best to you and your relative!
I really enjoyed your little video ! Kudos on that. I've had Charcot Marie tooth since probably early 2000 -(I was diagnosed in 1992 with fibromyalgia )but what really brought it to the light was my bunions and the buni surgeries. I have had at least 9 to 10 surgeries so far and 😊podiatrist Mickey Stapp I just want to cut my feet off put them on the dresser at night and thein the morning put them back on so I can work so this disorder /disease can be crippling emotionally physically spiritually but you have to just keep pushing yourself doing the right thing pampering your feet so your "tires "as I call them work for you. At 59 I still have many roads to travel c🤓 we are a young family ! I have five ch ildren, boyspositioned oldest-and the youngest and three girls in the middle so from the ages of 38 to 24 plus we only have three grandkids And that's just a smidgen I want more grandchildren.
As I wait on the rest of the clan. I like to play the song I'm every😊woman by Chaka Khan every morning when I get up . Women really are"the thing that makes the world go round". Plus A little Irish Greek always helps.!
Peace 🙂 Yiayia in Georgia
Many thanks!!!!!!! 😘
Haha absolutely, it's a very relevant and great topic!
Keep the good ideas coming when you need them!
Hola soy de Honduras quisiera una recomendacion mi esposo tiene pie de charcot quisiera ayuda para colocarle la bota para su tratamiento
Thank you I have cmt it helps
We hope you can find some relief and feel better!
That was greaaat, greetings from Morocco 🇲🇦
You are a great fan and we really appreciate you!
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Great fans like you are really what keeps us working hard and motivated to make better videos!
If possible we would really appreciated a review from a great fan like you!
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♥️♥️
I have CMT 1a, please move to North Carolina! 😝😫😁 I wear AFOs, but my podiatrist won't treat my calluses anymore. It's not covered by insurance!
Thanks biddy I'm suffering
Feel better!
I find HOKAs to be too thick in the sole to work with foot drop. Altras are pretty good.
I am going EMS Fltness is it good for me ? I have CMT and i use dynamic walk afo
Please tell about the risks of doing only „Soft“ tissue surgery… high recurrens Rate and only possible If the foot is still flexible enough… often no help for supination/ drop foot problems!
Doctor, I have just been diagnosed with CMT.I don't know what level. I am going to another doctor in the practice to get extensive EMG done on both feet. I was born with high arched feet. I have drop foot on right foot. I wear a Saebo brace and have clubbed toes. I have pain in the insteps of both feet. I don't what can be done to resolve this. I don't get the EMG until April 2nd. Thanks.
My niece's daughter has this and is having surgery tomorrow .
Very informative. You mentioend Shoes brands, but what kind? Neutral, Stability, Motion Control, etc?? (This is how they are displayed and sold). Maybe 1 or 2 example models from each would be helpful. Main issue I find is size/width in particular with orthotics. For example liked Hoka, but with orthotics, my foot would slip out. So, you need deep heel cup and big toe box to accomedate I find, and not many to find that will match all those categories.
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I am excited for my awaiting disability
THANKS.
We appreciate you watching, I hope you are having an amazing start to the new year! 😊🙏❤
If possible, we would appreciate a quick rating (hopefully good), as it makes a HUGE difference!
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We are working hard every day to make better and more meaningful content! This is what keeps us going, for sure.
How can I find a cmt doctor. My doc knows nothing about my disease
That shark is so cute!
Haha ya we looked at many sharks 🦈, only that one made the cut! 😂
i use tactical boots, no AFOs
I have cmt but I can’t wear low tops I can only wear basketball high tops
I am watching this video and accidentally i am diagnosed a cmt within this week i am not seriously taking this case cause i thought its a polio deceased and yet its cmt .hoping to recognized me doc im from Philippines.
What about flat foot? My dad was diagnosed with this and he had very severe flat feet.
This problem with me please sir help me
Thank you for this helpfull Video (Shark lol)👍
Another Problem are the Opioids you get gainst the Pain ,that feeling like you would stand barefoot and up to you're knees in the Snow. And of course the feeling of 🔌up to and into the pelvis and the Hands.
This doubles the patient's problems ,
CMT & Opioid Addiction.
PS: what do you think bout really heavy hiking boots ,makes "walking" feels more safe.
Thanks we appreciate it!
The taller the boot the more it will help with balance and "sensation" as the more proximal the boot goes the more sensation cmt patients tend to have.
Mon nom est François j'ai 58 ans comment faire de savoir si je suis atteint de Marie tôt ou Charcot tout simplement
Do you provide online support service?
I am from outside the United States and I need advice online
Sorry but there are legal hurdles and we can't give specific advice! We hope you can find someone there to help you!
Can’t wear the insole with a brace
Interesting, what would you advise for patient suffering from HSAN4- no pain, no sweating, no control of temperature
We know you want a more detailed response, and believe us if allowed we would love to give more specific information.
Unfortunately we have to let you know how important it is to see your podiatrist in person to get a more detailed response.
There are just so many variables and risks for giving information without a proper physical exam in person.
Good luck and we hope you feel better soon. We really appreciate you as a fan.
If in the Michigan area consider coming to see us! www.michiganfootdoctors.com/
Je suis très inquiète à propos de cela car je sais que les symptômes sont cellulaire
@DrTomBiernacki, the advice / information around what is a good shoe goes completely counter to what is a good shoe from those speaking about barefoot shoes.
It would be interesting to hear that being addressed, because generally a lot of the shoes on the market does not seem to promote good foot health for people without CMT. Whereas, a lot of arguments made by people speaking about barefoot shoes does seem to make sense for people that have healthy feet to begin with.
You are 100% correcr, it is confusing! This is my most updated video on this, tell me what you think! 😁
ua-cam.com/video/3elMryUe4a4/v-deo.html
@@DrTomBiernacki Thank you for the link! I felt like that video felt more nuanced than the video you had here. You are right that there is seldom a one-stop solution for everybody.
I had surgery in the 70's which cut and retied the tendons on the top of the foot tighter (8 hr surgery each and months of recovery in a cast then half cast), it seemed like no time at all and my feet dropped just as much as if the surgery had never happened.
Thanx for Sharing. Thats why only soft tissue surgery is Not for everybody!! I think you should always get an second opinion in a Foot and Ankle Center where all options are discussed!!
My great niece is having surgery tomorrow she is only 8 and next month she will be 9.
I have heard that it can affects the hand or hands. And it makes them look. Like a claw is this true? Thank you❣️🙃🙃😊
Hi... It's not so much the hands but the fingertips are numb so affect the use in trying to fasten buttons... Picking up small items... Also dropping things... Hope this helps 😊
Boy did I hate the shark jokes
I have insanely high arches but I'm not sure of I have this disease. I have never seen someone with arches even close to mine but I still run very fast and have no issues. I just use arch supports sometimes.
ua-cam.com/video/dLWj0R_DaEA/v-deo.html This may help!
Thanks for the great response!
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Eu estou com polineuropatia periférica,axonal,sensitiva e motora,do tipo 2.Não tenho força e equilíbrio.Não consigo ficar na ponta dos pés.Meu joelho,n dobra,por isso caio muito.Que tipo de exercícios vc me aconselharia? Sou aqui do Brasil,e essa doênça aqui,está em estudos.
Meu pai tinha e hj meu filho d 14 anos tem tbm 🥺. Meu pai fez inúmeras cirurgias colocou platina , parafusos etc nos pés , mas não adiantou nada .
Em uma procura na internet vi q suplementar Vit D 3 .000 uis , Vit E , zinco , e magnésio ajuda muito . É como se parasse d evoluir . Hj faço exercícios com meu filho, tem q alongar bem os pés ao acordar , não esquecer das mãos, infelizmente com 60 anos já dá indícios d q tem algo errado . Obs minha vó tem , e como pode ser hereditário passou p meu pai q passou p meu filho . Meu filho tem vida normal , anda normal e tal. Masssss tm uma dificuldade para correr .
Aaa suplementar Vit do complexo B tbm seria muitooo bom
I have flat feet though
I suffer from this disease
Can you wear the insert inside braces?
These depend on the braces, there are specifically made braces with a built in custom insert and there are some braces with that can fit an insert. The standard old school hard plastic AFO can be the toughest to fit into.
My wife has it and Im determined to find something that helps her
My grandson is 21 and just had surgery on one foot. He had like 6 incisions. He has 2 screws in his heel, and some metal at the base of his big toe where they cut a wedge out. They also took a wedge out of his heal. And did some work with some tendons. His foot actually looks normal now. He should be able to start walking on it next week. They will do the second foot in September.
what new balance shoes would you recommend for cmt
Personally it's not the specific shoe but pairing it with a soft orthotic device like a diabetic orthotic to take pressure off of prominent areas of the foot combined with low friction surface to decrease rubbing. A podiatrist can help with that evaluation and fitting.
@@DrTomBiernacki like a dr. scholl's insert in a new balance shoe?
I know i have CMT. My mother has been diagnosed with it and is on disability after 25 years of working a medical front desk. Shes legit and i see her fingers and toes and mine are doing the same thing. My toes are curling and rubbing each other with every tiny foot movement. I was just thinking yesterday that my pinky toe is hurting so bad that i think it would be better to cut the damn thing off. Something rubbing in my boot and it feels like it gonna start a fire its rubbing raw. So much. I cant feel the ground but in some ways i can and it feels like its bone tp ground like i got no meat in the middle. . idk how to explain it besides my feet hurt idk know where the exact spot is but my feet hurt. . fingers are bending as well. I know ive got it but im scared to death to go through all the tests she had to do . im not into needles and blood and doctors poking holes in me or shocking me to test feeling in ny feet . straight up im scared of that part i seen her go through it . but i need it to get insurance to pay for them shoes and those insoles. . its messed up but its real talk man my shit hurts. I aint gonna be able to work if this keeps up
This loss of Myelin sheath (fatty layer around each nerve) is like MS / Multiple Sclerosis. Could you please explain where the name “TOOTH” comes from?!!
The only thing that keeps my FLAT FEET hammer toes that were forming because of the lateral deviation of my big toe bunion, was from finding a pad for the FRONT ARCH just behind my toes. You never show these! Nor does any other video! These are the only thing that relieves the pain! I also massaged foot daily and stretched hammer toes until they got better and actually stopped contracting into claws. I’ve straightened them out myself! Could you please speak to this pad for front arch? The CUT OUT orthotic you show allows the arch behind toes to DROP!! As I understand there are 3 arches in the foot! Not one dr shows the use and benefit from this front arch pad! I used it successfully to straighten out hammer toes and relieve the pain by providing an arch that was caving in!Much thanks for helping people better understand their own anatomy and physiology. Thanks also for actual human surgical photos. I used to be a veterinary surgeon and it helps understanding better! ♥️
Very nice! Thanks, I believe charcot, Marie and tooth were 3 doctors that names the disease or studied it.
As hammertoes and bunions form, studies do show that the fat pads migrate away from where they are needed and this causes pressure.
Help! I am on the brink of finally being diagnosed with CMT. Had to switch doctors 4 times. I have seen numerous specialists. I walk too well to walk with a walker and I walk too bad not to walk with one. I was always an athlete. I don’t look sick at all. Husband is planning a vacation to mountain climb and go on a boat. I have no balance. My passport expired and a new one has been purchased but has not come in yet. I am so upset that it it shows up to day, I’m probably going to burn it. I feel I’m living a lie. If I show him how sick I am he may leave. I don’t tell anyone how much fall I have or why I had the latest accident. I have helped everyone around me who has had any form of any illness or injury. I have a degree and if I would be able to work I could be working in a hospital. Doctors question me why I did not become a doctor. What it boils down to is if I’m interested in something I learned it better than anyone and if I’m not interested I do not. I have broken my foot and toes three times in 16 months. This is not counting all the other injuries I have sustained. I have lost probably 90% of the feeling in my feet and probably 50% in my hands. I am losing sensation in my hands right now faster than I am in my feet. It appears my feet have plateaued and my hands have progressed. I also have several things wrong with my heart and have a peacemaker. I have only been to any form of any store four times in over a year’s time. And I only went because of necessity. This is not how I expected to be. As an extreme athlete I thought I was going to run with my grandkids and possibly even great grandkids one day. Up until recently I was still able to do gymnastics, skate, run, walk long distances. I no longer drive because I have optic neuritis or at least that is what I have been diagnosed with. I had a library with thousands of books. And now it is hard to read. I get headaches quite often. My vision is double vision and blurred vision and sometimes billboards are too small for me to make out what it says. I stopped driving. And I am being harassed by family members. Because everyone seems to think I could drive as well as they can. they do not want to bring me to doctors appointments. Maybe I will not get any good suggestions on how to remedy my problems. But maybe someone on here has a family member that is experiencing the same problems I am. Maybe the family members will be more understanding. I was super independent. And I am losing my faculties. I feel very alone in my problems. And to explain exactly how alone I feel I drove myself to and from the hospital after having heart surgery.
We're really sorry to hear everything you are going through, these are terrible diseases. We wish we could help more but unfortunately we are limited by what would could do online, keep following with specialists, there is help out there and people that mean to do well!
I have this as a 13 year old it really sucks
Omg me too! I’ve never met another kid my age with cmt and i feel really insecure when i go to school.. :(
@@urlocalpasion8870 yeh I hate going to school with it
@@urlocalpasion8870 depending on how many kids you meet your age or around your age, you may be wrong that you havent met anyone with it!
35 M, CMT.
CMT isn't straightforward in how HARD it hits and when. It hit my grandfather when he was way, way older, hit me in my teens. I grew up in the era of Frankenstein Forrest Gump-ass leg braces and that sucked. Lotta folks dont even know they have it cuz when they get old they lose sensation anyways.
My son is 16 and i wish he some friends that were like him to share with.
Anyone else have a breakdown half way through the vid bc having this disease is just too much. Idk I’m 21 and I can’t get over this. Especially being a guy, and having cmt. How tf am I supposed to get over this.
35, M, CMT self: what a lot of short, focused videos like this dont cover are things like many CMT-folk have intermittent progression. Mine hit me as a late teen through my early 20s and stopped progressing and probably wont pick up again until I'm in my 60's.
Protip from an exercise standpoint, specifically cardio, I've found the elliptical to be by far the best- foot drop isn't an issue if your feet are essentially locked in. I miss the gym and gained like 50 lbs during 2020 that I'm really looking forward to not having anymore.
This is a limited space to gauge reply impact, and I'm going off a limited comment, but, there's still lots that CMT doesnt touch. Yes, it kept me from the military, but I still work with aircraft and have met people in the same shop with the same CMT who are old as dust.
I’m 56 and have cmt I tried to hide it from everyone by going to the gym 5 days a week and bought a stationary bike that I rode 30 minutes every day but as I got older there was no hiding it and I had physical jobs which I can’t do anymore the thing I wish I did was to accept that I had a disability .
Not enough Podiatrists that specialize in CMT. My current Podiatrist wants to Fuse my joints in my ankle!!! I'm like no sirree Bob... I even requested an outside referral to see a Podiatrist who does specialize in CMT, and got denied. Now they are referring me to a Podiatrist at Stanford... who just happens to know nothing about CMT. Go figure.
Ya I feel the same way... things should be better. I hope these updated videos can help:
CMT Treatment: ua-cam.com/video/C4g8Rn6Gaco/v-deo.html
CMT diagnosis: ua-cam.com/video/HOebXZIZT4Y/v-deo.html
Why not do something about inducing medicine to strengthen the #17 chromosome that you mentioned
Guess he forgot to mention all the types of CMT there is its not just 1
The goal was not to make this a comprehensive video about every detail of CMT, we were trying to focus more on the foot problems. We will try to be more specific in future videos.
theres actually over 100 genes that cause it- chromosome 17 is the most common cause for the most common type of cmt
Thanks for the input!
I have too cmt 1a its a fuking Diseases
It is a tough one for sure
Fun? You're out!
?
@@DrTomBiernacki
Sorry for my stupid comment .
Excuse me I was in a really bad mood.
I just added another Comment .
And again 🤦♂️😔
And thank you for you're helpfull informations.
really falls flat making the shark joke. horrendous disease and my friend recently watched his sister die from it.
You are 100% correct, I have stopped these types of things and apologize if it seems insensitive
I am the best cmt I have more talent than the rest of them
Can your back break from any if the cmt BC I'm having bad back pain and in scared
One must be educated in CMT…as the Dr. first explained, it’s genetic.
It can only be passed from the mothers side of the family, to
the child, and therefore all the way down the family tree.
A gene test must first be done.I had one,and tested positive.
It did not show up until my fifties.
Charcot foot is something completely different.
I’ve learned through this journey, to my disbelief, how many
physician’s , orthopedists, and others in the health field,
who have never heard of this disease.
There is much that can be done now. Even support groups.
Fortunately, I had the means of finding the best Doctors.
Don’t give up. Walk out of the office as fast as you can, if
you happen to go to a physician that is uninformed , Don’t
waste your time !
Just self diagnosed Charcot confirmed with xrays and mri will try to reach out you have an email or phone