OK, since time's a'wastin', here are some proposals for topics to be used for the on-line conference for adult clubbies in conjunction with the Ponsetti Institute's Club Foot Week. Critique welcome and encouraged, but I've got to meet a deadline, so here goes:
. What kinds of things have you done to deal with your chronic pain? Medications, therapies, mechanical solutions (shoe modifications, orthotics, etc.), massage, etc.
. What have doctors done for you that worked, and what has not worked? How have you come to define "worked" as it regards your feet? Immediate relief, temporary relief, long-term relief?
. How have you managed the emotional aspects of your CF?
. Share resources in your area (country, state, province, etc.) – for orthotics; for footwear; for footwear modifications.
. Who have you gotten the best results with – chiropractor, podiatrist/chiropodist, orthopedist, physical therapist, massage therapist, alternative medicines/therapies? Why do you feel that has given you the best results?
.If you have had a fusion, how long have you had it/them, and at what age were they done? What has been your experience? Are you experiencing good/neutral/poor results? Are any of your other joints causing you issues?
.What activities have you been able to continue in as you’ve gotten older with PCF? What have you had to give up? Have you learned to continue those activities in a modified manner?
. How does/has your partner, children, relatives, friends, co-workers, employers respond to your limitations? Have those limitations ever interfered with your ability to find a job? What have you done to respond to those issues?
. What is your self-image?
. How have you tried to deny/ignore/avoid your handicap? How have you been able to embrace it? Who has encouraged you in dealing with your limitations? How have/do they show that?
. What was your worst childhood experience connected to your CF? What was the best? How has that experience shaped you?
. Multiple surgeries as an adult - what was done, and how was it explained that you needed a particular procedure?
So, we need to get this down to no more than five topics, so as to be manageable for the time limitations. Please, again, get back to me asap with your thoughts, different ideas, etc.
Remember - this is for you and all the other clubbies out there who have felt isolated, frustrated, and forgotten by the medical establishment. This is your chance to increase the visibility of people who deal daily with post-club feet. Please get involved!
Hi!
ReplyDeleteI have been reading your blog, but have never commented before. I will also comment in the My Story, Your Story section- and will keep on topic here.
In my life, the major issues I contend are:
1) The emotional and social impact ClubFeet has had on my life- how I cope, and how others cope with my disability given (wearing pants) I "Look" normal.
2) Treatments: What works for me now, what worked when I was younger (symptoms getting worse with age). I would love to hear what has helped others.
3)Physical/Anatomical complications: I have an appt to be re-evaluated in terms of my foot structure, pain, calves, etc... but am unaware of the full breadth of complications that can arise in adults who were surgically treated for ClubFeet/Foot.
I hope that this helps! If you need clarification or have questions, I am Elizabeth on the FB Adult ClubFoot forum and feel free to write!
Elizabeth,
ReplyDeleteThanks so much for your input! I especially like #3. Tell me, where are you located (country/state?)I would like to understand better what your re-evaluation looks like. As you read the blog, you will no doubt see I am a sceptic re: most surgery, except when very carefully considered, and even more carefully carried out. I know all too well how the promise of less pain can cause us to take what a doctor tells us as exactly what we wanted to hear, because anything that promises relief must work. But I always caution for 2nd and sometimes 3rd opinions. A bunionectomy is one thing; a tendon transplant, a fusion, a fasciotomy - those are something else all together, especially when applied to feet already "altered."
But that's just me.
Hi,
ReplyDeleteI am from Chicago- Was treated as Children's Hospital there. But now I live in Colorado. Since I was "cured" hah, I have not seen anyone about my feet in 10 years. I have more pressing and acute back problems and have been busy getting those sorted out. (Spinal Stenosis & Anterior Spondylolisthesis- with potential risk of severing my spinal cord if the slippage become mobile).
Back on Topic: I am just going to get x-rays, and possibly an MRI to see what we see... lol. There is no expectation- I have been told by a few doctors to amputate because "it will allow me to participate in activities I otherwise could not." I also know many personally that had horrible long term outcomes from the Fusion and Fasciotomy.
I have never heard hopeful words from doctors- they were always pretty straight with me and told me I will always be in pain, and other than temporary surgical relif- there is nothing they can do (short of amputation). But, I will let you know what we find out. Also- getting my wheelchair this week! Cannot wait to get some independence back- first trip is too the botanical gardens!
I am curious, Elizabeth, and if this is prying too much, please slap me silly. But I have often had the experience of finding people (back when I still made footwear) quite some time after they were done being hammered by surgeons. Have you ever been seriously evaluated by someone with the proper credentials for a leg length discrepency? And have you ever considered getting custom footwear, made specifically for you? I would not presume to say how that would turn out for you, but I have seen some pretty messed up bodies find at least moderate improvement, at the least, going that route. I realize its not easy to find the right kind of shoemaker, but if that is something you want to give a shot, I would be happy to try and find someone that has the right skills. They may not be in Colorado, but I know where a few of them are. But I am only willing to do so if you feel it is something you'd like to consider. An amputation is forever, and presents its own set of issues. It might not hurt to exhaust all the other avenues before taking such a severe step.
ReplyDeletelet me know.
Hi!
ReplyDeleteYou are not prying at all- this is for sharing right?
Yes, I have been evaluated and treated, but would also be interested. I have had orthotics since I got out of the AFOs, some good and some bad- and currently have a great orthotist who does all sorts of examinations, plasters, foaming, casting- way overboard but the most amazing ones I have ever had.
I recently got a name for someone who makes shoes, but have yet to look into it. As I had said, my back has taken the center stage in the last two years. I would love a good name/reference for a shoemaker.
Also, while they all recommended amputation, I admit I think about when the pain is really bad or I cannot walk at all, BUT- not something I will go through with unless I am at some point permanently in a wheelchair and it is my only chance/last resort. I have a lot of fight in me, and know that road would be tough- but BRING IT ON! :) if it would mean for me that through prosthesis I could walk again.... Will cross that bridge if/when I get there.
OK, where in Colorado do you live? That would give me a starting point. But I can tell you right off - there are very few experienced shoemakers with a track record of working with PCF, let alone many other foot deformities, so you may have to be willing to travel. Back when I still made shoes, it was not unusual for people to come from across the country - I even had one client from London! But lets see what I can find, OK?
ReplyDeleteNo problem travelling, will make a vacation out of it! I am from Chicago, IL originally- and travel back there frequently so near the midwest of the U.S. is convenient too. Right Now, however, I am just 35 miles southwest of Denver in the mountains.
ReplyDeleteOK, first search brought up this place in Aurora, but the web site is too vague for me to say anything about their offerings. You might want to take a look, but I'll keep looking.
ReplyDeletehttp://comfortshoesdenver.com/
Hi,
ReplyDeleteThanks, I will look into them right away. I will also pass their name by orthotist to see if he has heard anything about them.
I had my re-eval today: Mostly the same as before, but a few new things were learned. The reappearance of my Right foot looking more and more clubbed, is most likely related to the back problems I am experiencing and a lifetime of gait disturbance and traumatized muscles, ligaments, etc...
3 things: Going for a CT, haven't had one of those in a long time. Next, some brief talk about a Subtalar Fusion (I am missing the Navicular bone, hence a Triple Arthro is impossible due to its inexistence). Third, Ankle braces- back to childhood! After CT going to talk more about why she was recommending Subtalar Fusion, and will then probably seek a second opinion. If the treatment plan appears short sighted in terms of potential relief then I refuse. Who wants more surgery after already have 9? What more, really, can be done?
.... not sure if I feel let down or hopeful, or even if I feel anything at all --
Elizabeth,
ReplyDeleteWell, I just finished a very long response to your post, and when I went to post it, blogger lost it completely. I feel so strongly about your last comment that I am going to do a formal post, so hopefully I can recall enough of what I had already written.
But for now, I hear your frustration and anger loud and clear. What is it with these doctors so unwilling or unable to try looking at the problem differently, and just maybe come up with better solutions? GGGrrrrrrr!
Hi No. Clementia here. I havent been examined for my right club foot. I had one surgery when I was about 7 and it sucked and I can't see how anybody ever would go thru more than one of those surgeries. I've often dreamed of having a shoe that would allow me to walk normally. My right leg is shorter, my right foot is shorter, all the usual things. My God, are some people really considering having their foot cut off? Yikes! I thought I had it bad. My foot looks , as far as I can tell, like classic club foot. Yep, I have pain. So, if you know of a specialized shoe maker in Virginia or, I travel to Indianapolis a couple of times a year and might even move back there. ........the one time I thought of having surgery as an adult, the doctor that I went to actually looked stupid and told me that my foot after surgery would be pointed up instead of pointed down like now. I never went back. Every doctor I have seen since hasn't been able to say one single word about what I could or should do. I truly believe there just isn't anything to be done.
ReplyDeleteI really admire you for your work on this blog. I truly do. Clementia
Yeah, I hear you loud and clear. I think its time we clubbies got together and told the doctors what's what. That's why I am doing this forum.
ReplyDeleteI am Tim from Dallas, Texas. I have a right surgically correct club foot. I am excited about reading other peoples real situations about their club feet. I alway thought I should never complain or talk about the pain in my foot to anyone. Normal people (even my parents) seem to never want to hear about the pain I experience. My parents thought they spent the money to correct it and that solved the problem (period). Therefore, I never complained to anyone. I am now 62 years old and became totally disabled when my left knee cartillage wore through. CF is on the right. I know the instant the cartillage wore through. The pressure on the club foot changed positions leaving me with a lot of extreme pain in the foot. I have had a left knee replacement last year, but the pressure change is still very evident. I would like to hear from anyone with a club foot at tkrusk@sbcglobal.net.
ReplyDeleteTim,
ReplyDeleteYou are NOT alone with your Post-club foot issues, and there is a Facebook group where you can meet many more of us clubbies, at adults/teens with club feet - just request membership - Werner always grants it to fellow clubbies, and they are a truly great bunch of folks from all over the world! And come back here often - there is a lot of good info and resources here, much to explore.
Glad you found us!!
Notumbo
Nutumbo, Tim in Dallas, thanks for all your information. You are an exceptional person, mainly because of your experiences. I have read a lot of your blog. From a baby to a seventeen year old you have dealt with a lot of hard bulling issues. I have a lot to say but I dare not say them because I may offend someone. I hurt 90 percent of the time now (age 62) at this point in my life due to the change in my club foot pressure and the body stacked on top of that. Maybe I am not careful with my words, especially toward the younger generation. I have had a very good life. I have a lot to say but not to complain about, just statements of truth.
ReplyDeleteA note to youth with a club foot. I know it is hard to endure the bulling that results from being weaker than others or comes from not wanting to hurt your foot/feet, causing more pain in it than you have to deal with, from a fight. I have experienced it. People often bully to impress others that they can get away with it, or to just humiliate the receiver, or possibly to just show themselves and others they have power over you. To humiliate they accomplish, it is very humiliating to be bullied. Every experience in life, every time you accomplish getting past pain, be it emotional or physical is records in your mind that you can get through it. So as life grows you look back and think "Hey if I could get past that (what ever it was in the past) I can get past this next hurtle in my life". It is way of us growing as a person. Eventually, it will all just become part of the past, and a good life will become the present and future. Deal with life the way you have to, in order to endure life. Only you can know yourself and what it takes to give your ideas, goals and ambitions a chance to solidify.
Well, Tim, from Dallas, it's good to hear your perspective. But I want to say, you should have no fear of offending anyone on this blog especially. I also want to point the way for you to know more clubbies, especially a couple in the Dallas are, by joining the adults/teen club foot group on Facebook, more than 200 clubbies from around the world, sharing information, humor, troubles, and their lives. Please come by, Werner is the founder, and anyone with adult club feet is welcome. Please do drop by! And thanks - I can see you get it what its like to walk this pathway.
ReplyDeleteHello, my name is Linzi and I appreciate this blog. I have a left cf and accompanied problems. About a decade ago I had my ankle fused. At the same time, I had my heel, toes, and many bones of my foot repositioned and stapled into place. All this work has caused new problems, more pain, and much less mobility. I've had treatment since by a wound care specialist because of pressure wounds. The solution was a device called an Arizona boot. The boot helped in that I didn't develop sores, however, it was so extremely bulky and uncomfortable. It also caused pain in my shin that was excruciating. I was just trading pain for pain at considerable expense so I quit wearing it. Honestly, I'm not doing anything at this point since I've just become very dissolutioned(and was unemployed). I take naproxen and use soaks and massage for the pain. Suggestions are welcome for any ideas someone else may have for a good custom shoemaker, etc.
ReplyDeleteThe trouble with the Arizona boot is that it really needs a rocker sole to prevent that pain you spoke of. I had discussions many years ago with someone associated with the firm that designed them, but they were somewhat dismissive, so i never continued the dialog. As for the shoemaker - where do you live? I may be able to jhelp you on that front.
DeleteSorry, I just realized this was an old thread.
ReplyDelete