Stop in and say Hi

Hey , I know you know me from another forum ..but wanted to say hi and hope Marty and Joyce are doing well...also love the forum ...Kathy

Hi Kathy,

Am going to try and get as much information as I can here. I am doing okay, I'm back in shoes still have limitations but beats the boot. Going to see The Doctor next week. Feel free to post and visit often.

Marty

Hi Marty, Theresa and Kathy from other forums.

Melanie here from Australia. I am still searching to find another person in Australia with Charcot's foot. Also still searching for the truth. I go to one orthpod who says "I've seen 1000's of Charcot's patients" then I go to a local hospital's diabetic clinic's podiatrist who claims to have never seen a charco'ts foot. Both guys are the same age. I've searched the internet forums on Diabetes for someone else - I can only think nobody much here is being told that they have Charcot's - they're just getting their leg amputated in ignorance of it all - so this Charcot's Foot Support Forum is very welcome. Thank you Marty and Theresa.

Melanie.

HEY, I STARTED WRITING LAST NIGHT AND STOPPED BECAUSE I WAS UPSET AND DID NOT WANT ANYONE TO FEEL SORRY FOR ME....I WAS UPSET BECAUSE MY RIGHT FOOT, THAT IS SEVERELY DEFORMED, WAS ACTING UP..IT IS GIVING ME SO MUCH PAIN I CAN HARDLY WALK ON IT...SO I DECIDED TO GO BACK TO MY PODIATRIST AND HAVE IT XRAYED.....PRAISE THE LORD IT IS SEVERE ARTHRITIS...I HAVE BILATERAL CHARCOT...LUCKY ME .RIGHT....THE RIGHT, AS I SAID, IS SEVERELY DEFORMED AND THE LEFT IS MID FOOT WITH DEFORMITY....I GET TIRED OF FEELING SORRY FOR MYSELF...I HAD A GOOD CAREER AS AN RN ..WORKED FOR THE SAME HOSPITAL FOR 28 YEARS AND HAD TO GIVE IT UP...LIKE EVERYONE WITH CHARCOT I WISH THERE WAS SOMETHING THEY COULD DO FOR ME....BUT I HAVE TIMES LIKE TODAY THAT I THANK GOD IT IS NOT CHARCOT AGAIN...AND I PRAY EVERY NIGHT PLEASE LET ME KEEP MY FEET......I ALSO WOULD LIKE TO SAY I HAVE A GREAT PODIATRIST....AFTER NUMEROUS ORTHO DRS NOT EVEN FINDING THE CHARCOT ...DR PADULA FOUND IT ON THE FIRST VISIT ...AND HE NEVER ACTS LIKE I DON'T KNOW WHAT I AM TALKING ABOUT WHEN I TALK TO HIM ABOUT THE CHARCOT...HAD THE ORTHO DRS KNOWN WHAT TO LOOK FOR MY FEET WOULD NOT BE AS DEFORMED.....I WILL QUITE COMPLAINING FOR NOW ..THANKS FOR LISTENING...KATHY .

Kathy,

We started this forum to help people readily find info on Charcot and to learn about the symptoms, care, and prevention....But we also wanted a place where people can gather to chat and not feel alone in this. Yes our numbers here are small now but if this forum in some way gets more information "out there" then our job is done.

Keep posting when and what you want. Post info you have found, vent, or share smiles but post. We certainly understand the bad days, the frustrations, and the feeling of being alone with this and searching for answers and not finding them. That's why we are here.

Hugs to you my love.

THANK YOU....I WILL....KATHY

Dear Kathy and Marty

No. 1: Kathy I'm sorry you are feeling so miserable right now with your Charcot's. Can you get pain killers at all?

I am interested that both you are Marty have pain with your Charcot's. In fact I have no pain, because of my Peripheral Neuropathy. Now this does wake me and keep me up (it's 2.30a.m. here now). But from everything I've read on Charcot's, it's caused by Diabetes, which leads to Peripheral Neuropathy, which then leads to lack of sensation while the bones break down from minor trauma (including just walking). So what's with the pain? How is that explained to you two? I have weird sensations inside of my feet and ankles that drive me crazy - alternating between numbness and tingling (absolutely constant) and also tightness of tendons - but never pain.

I am so sorry for both of you that you experience/d pain - is your pain gone now Marty, after the op?

Melanie

HEY, MY PAIN IN MY RIGHT FOOT IS DUE TO SEVERE ARTHRITIS THAT IS CAUSED FROM A TRAUMA I HAD THAT LED TO CHARCOT IN THAT FOOT...THE LEFT FOOT DOES NOT HAVE PAIN...IT IS DEFORMED BUT NO PAIN AT PRESENT TIME...I ALSO HAVE NEUROPATHY IN BOTH FEET...I AM A DM ALSO...I HAVE BEEN A DM FOR 12 YEARS......I READ ON ONE FORUM THAT A MAN HAD CHARCOT BUT HE WAS NOT A DM .....HE DID SMOKE AND RUN DAILY.....I HAVE MET 2 PEOPLE IN THE TOWN I AM LIVING IN WITH CHARCOT ....ONE WAS A GENTLE ABOUT 65 AND HE WAS IN MY PODIATRIST OFFICE AND I NOTICED HE HAD ON A FIBRIOGLASS BOOT JUST LIKE I HAD TO WEAR FOR 6 MTHS.....I TRIED MY BEST TO TALK WITH HIM BUT HE WAS SO ANGERY ABOUT THE CHARCOT THAT HE DID NOT WANT TO TALK ABOUT IT...THE OTHER IS A LADY ABOUT MY AGE (57) AND I HAVE NEVER SEEN HER BUT MY FAMILY DR TOLD ME ABOUT HOW HER ...HER MD TOLD HER THAT THEY WOULD HAVE TO AMPUTATE HER FOOT AND HE (MY MD) SENT HER TO AN MD AT UAB ( UNIVERSITY OF ALABAMA HOSPITAL) THIS IS A BIG HOSPITAL NEAR WHERE I LIVE AND THEY PUT HER IN THE SAME FIBROGLASS BOOT THAT I WORE .........I GUESS THAT IS THE THERAPY THAT IS BEST RIGHT NOW.......I WORE THE FIBROGLASS BOOT ( IT CAME UP TO MY KNEE AND WAS HEAVY) FOR 6MTHS AND THEN I WAS PUT INTO AN ARIZONE BRACE TO PROTECT MY FOOT......MY PODITRIAST ALSO HAD ME USING A BONE INHANCER ...BUT YOU HAVE TO BE OUT OF THE ACUTE STAGE TO USE THIS......I NOW CAN WALK ACROSS THE DRIVEWAY TO MY MOTHERS AND IF I WALK SLOW AND TAKE BREAKS I CAN WALK INTO A HIGH SCHOOL STADIUM TO WATCH FOOTBALL...I AM TRYING MY BEST TO ENJOY LIFE AS MUCH AS POSSIBLE... PLEASE TELL US MORE ABOUT YOURSELF...KATHY

Hi Kathy

Can you please stop shouting!!!! (Turn CAPSLOCK key off girl!) LOL

Anyway, your message brought something to mind that I said to someone at a party, which was "oh yes, I get so exhausted wearing this boot as it is 2kg heavy. When I was driving home I reflected on that and thought how stupid I was saying it because it's probably my 103kg of weight that I'm lugging around that is heavy and makes me exhausted. Reality bites!

Melanie

Well, did not mean to shout....about the boot maybe your right...lol

People have different levels nerve damage mine is about 20 percent which means I still have 80 percent feeling. This is another reason no plates, screws or bolts were left in my foot after surgery. They used donor bone to fill in the gaps and used the external fixator to keep it all in place until it healed.

Hi there . . . guess I will have to be "Kathy-2"!!

About 5 months ago, I was diagnosed with Charcot. Talk about my world coming to a complete stop! I had tickets already purchased for a three-week missions trip to Kenya and I thought my life was over!

But through the Podiatrist network, and "GrayHare", I've come to a better understanding of what I'm up against. But I am still so confused. I believe I have a great doctor, but after I read others' experiences, wondering if I'm not getting the entire picture. I'm learning that I need to make the best of it and live life as full as I can with the limitations.

I have been a diabetic for over 43 years. I have been very lucky and not had complications . . . until now. All during my growing up and getting older, I've heard of the heart disease issues, eye sight issues, etc., but NONE of the doctors ever told me about this! In fact, no one even told me I had neuropathy in my foot/feet! I have had several minor breaks over the past ten years, but usually a toe or something little like that. Then, about five years ago, I tripped in a restaurant and broke my foot. However, three doctors did x-rays, and never found the break! I walked around for over a year on a broken foot . . . even took my first trip to Kenya and did some heavy-duty walking. But no one diagnosed a break. There was a little swelling in my ankle, but not very unusual. Finally, the doctor I am seeing now found the break and treated the broken bone. The swelling was determined to just be scar tissue.

Then, five years later, this April, I woke up one morning with a swollen foot. It was very tender and hard to walk on. So I immediately went back to the doctor. He treated the break with a very strong Ace bandage and an almost knee high walking boot with crutches. He also prescribed a bone stimulating ultrasound machine twice a day. His goal was to get me to Kenya. I did get to go . . along with my new Arizona brace. Before I left, he told me most exercise would be out of the question except something like a stationary bike. When I got back, he told me I could "walk" as long as I had the brace on. Don't figure . . . which is it? I have since bought a regular bike and am now biking 10-15 miles several times a week. I still need to be outside as long as I can.

I still don't know how I got this last break, and as GrayHare and I have discussed, I'm scared every time I get a tiny twinge or ache in my foot. I am looking forward

Hi Kathy,
I have a bike that I will never be able to use again since the pedal would put pressure right where my fussion inonary my foot is. I do have a stationary bike I use. I understand how you feel I had pain in my right foot and it wqas charcot again then I had a sharp shooting pain in my left foot that wouldn't go away so I called my doctor who sent mt for an MRI it showed no sign of charcot in my left foot. Having nerve damage will cause twinges and pains that are nothing. I still sometimes get the sharp pain in my left foot but know it is nothing.


Life after charcot will never be the same as life before it all you can do is make your life as good as possible, There are no rules as we all react differently. It also depends on where your charcot is different places in the foot can cause different problems. There is nothing wrong with getting another doctors opinion of you are losing confidence in your current doctor. Feel free to ask any questions you want I will try and help any way I can. Marty

Thank you . . .I think this site will be a blessing and a help to me.

My next issue: how do I know "where" I have Charcot and are there "degrees" of it? I thought once you had it, you always had it. But several posts say "when I got Charcot again . . . " I thought it was a condition that is always there and an event triggers a response, i.e, casts, boots, etc. So far, I've been told as long as I keep the brace on (and it's implied "watch what I'm doing" . . . whatever that all entails) I should be okay. Does it get worse? I can't believe it gets "better". I know a lot of these questions need to go to my doctor ~ and they will. But now he has put me on at least a 3-mos. appt. basis. For the past couple of years, the shortest distance between appts. has been a little over a month. I took that as an encouraging sign. Am I wrong?

Thanks again . . talk to you (all) soon.

Kathy-2

Most people go through an acute stage of charcot. Usually how bad that is is measured by the difference in the temperature between the good foot and the bad foot. In my case the foot was to far gone after 3 months of walking on a broken foot. My foot would not cool down or leave the acute phase. So I had the surgery. My foot was fused and while in there he lengthened my achillies tendon so when I did get Charcot again there was not pressure on the bones and they did not break and healed after taking it easy and wearing the cam walker for 4 months. I have limitations caused by my fussion more than charcot. I have to wear special made shoes and inserts to protect my foot but the rest of my limitations are due to the fussion. Right now I am not suffering from charcot in any way. But it all depends on how you are treated and how bad your case is. If I hadn't had the surgery things would be different my foot may have never healed and I would always be in danger of breaking more bones.

That's just it . . . I don't remember my foot changing "temperature". It was a tiny bit red . . .pink really. . . but very tender and somewhat swollen. Because of the supposed scar tissue from the previous break five years previous, it was hard to see any swelling. It wasn't so bad that I couldn't get my shoes on. The main reason I even saw the doctor was because of the unusual tenderness. Which, as others have posted, is kind of ironic for someone who supposedly has neuropathy and less feeling!! I have had broken bones before so I know how painful they can be. That's why I was surprised at this latest diagnosis. Too bad they can't just take a blood test and tell you you have "Charcot" . . . and make this a less subjective, guestimate diagnosis! Right now, I am still very paranoid about anything with my feet. Because there was really no difinitive sign(s), every little ache or pain gets my blood pressure up, especially when I hear of all the surgeries (which because of the diabetes, all my doctors are avoiding like the plague) and see the pictures of all the deformities. Honestly, my foot looks better now, after the ultrasound, than it did before this all happened! I know it's probably unlikely that the ultrasound did something to the scar tissue, but I could swear my ankle looks skinnier and more like my other normal one than it has in the past five years. Don't figure . . . .!

I'll keep watching this site for more updates/stories/advice.

Kathy-2

I have been type 2 for 15 years I have been under great control and surgery caused no problems and healed very quickly. Not sure about blood tests but My doctor has actually started to find markers and clues in urine samples that show charcot. They can tell you have type 2 diabetes with a blood testbut then all they can do is treat the symptoms but not do anything about the cause. Did your doctor test your foot temperature at every visit? During the acute phase the foot deforming will be at a higher temperature. You may not feel that much of a difference but a thermometer will show it. I am not paranoid about my foot at all I take the precautions the doctor told me to and that's about it. I can't do any more than that. If I stop doing everything healing and surgery would be kind of pointless. Sure I want my old life back but that's not going to happen so I just have to do what I can, no I am not happy about it but no one ever said life was fair. Charcot is not an illness that fits in a nice neat box But the mental aspect of it can be controlled by you. If you choose to let is take over and worry about every twinge then that is your choice. If I get it again then I get it again but now that I know what to look for it doesn't worry me I got through my second episode of it with out to many issues Now it's time to get on with my life.

I totally agree . . . and it is amazing how far my "mental" attitude has come in the last several months. Probably more information about Charcot and the support I have received from sites like this is helping.

Now, when you say "when you get it again" . . . does that just mean having another flare-up or break another bone? Once you have Charcot, don't you always have Charcot, but just without incident???

It depends on how you are treated after surgery I did not have charcot. I had a flare up in another joint in the same foot but because of my achillies tendon lengthening and the fact that I new what it felt like and after a day of pain I called the doctor I did not have any broken bones. Just some deterioration in the joint. Only 1 in 4 charcot sufferers actually get it again. In alot of cases nothing is done, they just put a boot on and take the weight off of it and the problem never really heals. While surgery should be the last resort in my case it was the only chance to be able to use my foot at all again.

Hi Kathy 2,
I will be posting more about my charcot foot but your missions to Kenya caught my eye. You have been blessed to be able to go there. I am the mama kanisa (church mother) of 25 churches there but have never been able to visit. It is almost 5 years now. We started with 1 church and 25 people and now have 25 churches with over 2000 people. It has been a wonderful experience.
Joyce

HOW COOL! I would LOVE to have any information you have to share! Since my first trip four years ago, I have been in love with Kenya and its people. They are the most loving, warm, hospitable people on the earth. This last trip, I didn't want to come home because it was like returning to family. I could have stayed another 4 months ~ no problem.

I go with a group called Empowering Lives, International. They have facilities in Kenya, Tanzania, Sudan, and D.R. Congo. Their philosophy is to "empower" the nationals to become self-sufficient. This is where we started with the organization. We came in with an eye dr. to do eye care. We have now trained and sent for further education young man as their own eye dr. When we went back this summer, we found we had basically "worked ourselves out of a job" . . . which is what we wanted in the first place. It was amazing and wonderful.

Please feel free to contact me at any time you want to talk more about Kenya and "my family". I pray you will someday get to go there . . .especially with all of the work you appear to have done there.

Kathy "Jepkemboi"

Since this isn't concerning Charcot Foot, can we chat about this by email...my email address is joycefully@sasktel.net. Thanks

Joyce