[Sue M]

I was just diagnosed with Charcot Foot I am told I have several broken bones in my foot and right now wear a boot but will have a cast after the 23rd. I am afraid and don't know what to expect. I have questions. Will better control of blood sugar help. Will this ever go away? My doctor told me to retire. I am 55 and not ready to just sit and do nothing. I will have to apply for SS Disability. How is Charcot perceived by SS where disability is concerned.

[flosemae]

i am 55 and have been told yesterday i have charcot foot...afraid doesn't describe all i fell....i am an rn and know that this is serious...i have already broken my fight foot 2 years ago and it is deformed..but i am able to wear a shoe on it..and have worked with it since...but know i am really scared about the left foot ...it is deformed with a large born out of the inside of the middle left foot..I am to be casted on fri or mon when it is ready...cast for 6 weeks then maybe surgery...but who do you choose to do the surgery? who do you trust with your live and job...my md has also suggested disablity....what a horrible thing to consider...I know how you must feel...I don't want to do that...also i would lose alot ... my insurance and life insurance and all that ...plus you have to be out of work for 6 mths is what i am told before you can get disabilty....I would lose so much...I could not believe my dr said that to me..plus have they told you to stay off your foot until the cast? they but me on crutches until then and I don't really know how to use them...What have the drs told you ...I am afraid of it recurring also... Did you have an injury to your foot ? I had broken the Fibulia in my left leg last August and they told me this is what had caused this to happen... the ortho dr chose not to cast my leg last august and he should have...due to the neuropathy in my feet...now i have this to happen...please message back ...I am looking forward to your input and what you are going through...Thanks Flosemae is my nick name ...my brother called me that

[Sue M]

I typed an answer to your post and it suddenly vanished so here goes again. I have been wearing an orthoboot for the last 2 weeks. Tomorrow a cast is being put on my leg and foot. I can take off just to shower the rest of the time I am told it must be on. My retirement starts May 1st. The doctor told me I really have no choice. I cried for 2 days then just did what I had to do. I am a social service supervisor and have worked for the same agency for 28 years. I have been on very limited mobility the last two weeks. No driving as this is in my right foot. He said I probably cannot drive for months. He told me I may have to wear the cast for up to 9 months.

I went on-line and looked this up and it is disturbing to say the least. I searched for support groups or chat groups and there are very few and most are inactive. Money is going to be an issue and I will have to apply for SSD. I understand it takes time and they will not approve any one for 6 months. My doctor said Charcot's foot is very serious. It does not go into remission for everyone. He did say that when they see this diagnosis they tend to approve the people. I am able to keep my insurance but will pay dearly to do so. So money is going to be very tight.

I don't want to lose my foot and it is very frightening. The x-rays showed broken bones in the top of my foot. Only knew about it because I complained about my arch hurting and he decided to do the x-rays.

Where do you live? I am in West Virginia. I would like to keep in touch.

[flosemae]

I live in al. It is great to hear from you.I have worked for the same hospital for 21 years and if i go out for good i will not be able to keep my insurance , but i do have short and long term insurance...It is my understanding that you have to wait 2 years for medicare ... so that is bad also .. I know i will lose my life insurance and all that also...but i hate not nursing anymore...i know how you feel about worring about it all...you have to wear the boot for 9 mths...? I was hoping the cast will last for only 6 wks and he (my foot md) mentioned surgery...you are right about now return on any info on this...it really caught me by surprise...I am tring to get in touch with uab about this but the emails keep being a problem ...uab is a big learning hospital here..Do you trust your md? Mine is really nice but i don't know about his surgery experience...if it comes to that...The middle large bone in my left foot is broken and shifted to the inside of my foot and also 3 toes are involved...I did not realize what was the matter with my foot ,but my hips hurt really bad when i walk...and i don't walk right..by this i mean i don't have a normal gait when i walk... I am going to continue to research all of this and will tell you what i find...I hope and pray i will not have to leave nursing...i may have to the units to work, maybe.. .less walking there or home health...I wonder how many people this involves?one place i found said 1 in every 500 DM have this...have you seen any of the pictures on line of this...I know i am lucky just with what i have deformed...and i hope to find out what are the chances of this happening again...Maybe Oprah should do a show..haha...well i have talked you to death, but please stay in touch and i will do the same...Flosemae

[Sue M]

I have a lot of swelling and my broken bones are little small breaks in the top of my foot. I had no idea. The only pain was in my arch where I had a burning, stinging pain. I got the Crow Cast today. Have to wear 24/7 except when I shower. It is white fiberglass and snaps together then straps on. Very uncomfotable. Hurts the front of my leg when I walk. They adjusted it but guess it will take some geting used to. The foot part fits like a glove and is comfortable. This cast cost $1,400. My part of today's visit was $273.00. The cost of this illness is awful. Two weeks ago my visit was $174.00(my part). Not being able to drive because it is my right foot is a huge problem. I am getting rides to work and God Bless my sister-in-law who has graciously taken me to doctor's appointment. Not working is going to be such an adjustment. I have had some kind of job since I was 12 years old. Normally I am used to being super busy as my job with the state is high stress. Since it is so stressful it made my blood sugars pretty uncontrolable. They have already gotten lower since I know I am leaving. Hopefully my retirement income will hold us until I can get SSD. SS lets you apply as soon as you are off work. They will not start any benefits until you have been off 6 mos. I do trust my Dr. and he has not said anything about surgery.He did say he has never seen anyone with this diagnosis not approved by SS. I hope he is right. I have a phone interview with them May 1st. Wish me luck. Take Care

[flosemae]

please keep reporting on everything that goes on with you...I will do so myself...I have (with Luck and prayer) 24 weeks off from work and then i will be let go...with (thank God) long term and short term pay...it does me so good to read comments from everyone...please continue... thanks

[Sue M]

I will keep in touch. Take Care

[flosemae]

Hey, has anyone got their cast yet? Mine hopefully will be ready tomorrow..i wonder why it takes so long...i am suppose to be none wt bearing on that foot and i am scarred with every step i take with crutches...i still am trying to research this...i have , like most that have this, alot of questions...where is the info like, does it only happen to a foot once...after the cast and possible surgery is my walking limited? does any of the meds for neuropathy or DM effect this...with the cast do i still have to use crutches? lots of questions? will still try to resereach and will post what i find...I did read that this happens with 1 out of every 500 DM...if that is so ,why is there not more info out there..did your drs give you any info ,like pamplets...mine did not...still trying to get info from UAB hospital in Birmingham Al....will post what i find.....

[Sue M]

I got my cast Wednesday. It is called a Crowe Cast and made of hard fiberglass I think. You wear a long sock up to your knee under it. It had straps and I have to keep it on 24/7 except for a shower. It is uncomfortable and it is going to be a hard time with this I am afraid. I don't have to use crutches but cannot drive and walking is limited. I have spinal stenosis and it is causing it to hurt more. This has been a long weekend as I am pretty much stuck at home but trying to keep a positive attitude. The doctor gave a little infomation to read but it tell me mostly what I already found on line. He told me in his experience he has had people wear the casts from 2 months to 2 years before they could go without one. He also said after the cast I will have to have an orthopedic shoe and maybe a brace.

[flosemae]

well, glad you got your cast...i hate that you can't drive ...is it your right foot? I know it has to be hard with the cast,but I just want to get started with it...i am scarred to even be on crutches and no protection for my foot...mine is my left foot and he didn't say anything about not driving..i guess i am lucky in that way..just found out it may be a couple of more days for my cast...it is really hard having to stay at home...but i do have a sister that she and i go every where together and that helps alot...still no new info on this ...i did read that charcot foot has increased alot in the last 2 yrs...and it makes me angry that alot of ortho dr don't even ask if you are DM when you have a break..that is what happened to my foot this time...if he had cast a broken fibia i may not be in this shape..let me know how you get along on the cast...and i will do the same...didn't mean to talk your ears off,but guess i need to vent sometimes...if you need to i will listen ...thanks