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Does anybody know a success story?

Posted by Peter F on 10/27/02 at 15:22 (098438)

Does anybody on this wonderful site know of people who have got better after 2-3 years and stayed ok.I just feel now that my PF must be chronic (a bit like somebody with a bad back that aches whenever they do too anything) I am only 36 and used to dream of walking in Tibet etc.

Please don't take this in the wrong way but I don't need anymore advice about inserts taping rest etc I really NEED to know of some success stories to help my rapidly failing morale.

Re: Does anybody know a success story?

Nancy N on 10/27/02 at 16:28 (098443)

Peter--

I can offer you a success story.

I had PF for about two years. It started over the summer of 1999, and since I had already had it in my left foot, and got over it pretty quickly, I thought I could handle it myself by just making sure that I wore my orthotics religiously. By the time I realized that my bright idea wasn't working, I was in some serious pain, and of course had to wait a few weeks before I could get an appointment with my pod.

I went in and he prescribed PT for me, and to keep wearing the orthotics. The insurance I had at the time would not cover orthotics, so we were hoping to get by with what I had until my plan changed, if necessary. So I went to PT. I am firmly convinced that PT made me worse--not because PT is a bad thing (it's done wonders for many people here) but because I was given a regimen which was almost guaranteed to aggravage the existing condition. Moral of the story: If it hurts, speak up! I didn't, thinking that PT wasn't supposed to feel good, and probably lengthened the duration of my PF in the process.

After doing PT for a few months, I went back to the doc and bit the bullet for the new custom orthotics. I got ice scrapers in return for my cash. That's all they'd ever be good for. They certainly didn't help my feet--at least, not for more than a day or so. Then I'd feel even worse than I did before. I also tried a night splint and a walking cast. All this while I was still doing the weightbearing stretches that I'd been given in PT, even though they hurt, too. I'd been told to do them anyway. Again, I think all these things that hurt my foot only made it harder to heal the PF.

A few weeks after I got done with the walking cast, I saw a post here about an FDA study for an ESWT device in the Bronx. I live in New Jersey, so this was not right next door but was pretty manageable, especially for a free treatment! So I went. Along with the treatment, I was given a prescription for Celebrex and told to keep stretching--this time, for ten minutes at a time! (I still find that one hard to believe, and wonder if I misheard the doc--but that's what I heard, so that's what I did, even though it hurt).

I finally got tired of spending ten straight minutes stretching, and the pain associated therewith, and got a device from this site that allowed me to do non-weightbearing stretches. (I don't think it's available anymore, the FootTrainer would be the closest to it that's still available here). What a difference it made! I could stretch almost any time, for any length of time, without further injuring myself, as I believe I had done for several months without realizing it. The new stretches, along with the Celebrex, made a big difference for me. By the time the study was over, and it turned out that I had indeed had the placebo treatment (as I suspected), I was feeling much better.

Right around that time, I found a CPed nearby and interviewed him in the hope that he'd be a good person to make me some new orthotics. I talked to Richard, one of our resident CPeds on heelspurs.com, and got a list of questions to ask before giving this guy the go-ahead. I went in to see him, and he passed with flying colors. I got new, non-ice-scraper orthotics from him a week or so later, and then I felt a really big difference. I was mostly better before, but the orthotics pushed me over the edge, and also helped to deal with some slight tendonitis that I think was starting to creep in.

I've been 99% pain-free since then--and that was around March of last year. I go on long walks through the city, on concrete, and feel no pain other than ordinary soreness from overuse. I don't worry about how long the line is at the grocery store anymore. In fact, I marvel that I can do all the things I once feared I would never do again. For as awful as PF is, once you conquer it, it does give you a new appreciation for previously mundane activities.

So... I know you said you don't want advice, but in case it helps (you can ignore this part if you like!), the stuff that worked for me was Celebrex (I'd tried just about every other NSAID in the book with no effect), stopping the weightbearing stretches, and new orthotics made by a CPed. If you haven't tried those, I'd suggest you do. But even if you have, there is still hope out there. I was close to the last resort, which was ESWT and then surgery only if I was truly desperate. A lot of people here have had great success with ESWT, so if you have insertional PF, you might want to consider that as well.

The cloud does have a silver lining!

(And, Scott R, if you're reading this, I am more and more convinced that we need a board just for success stories... just to remind people that there is hope!)

Re: Does anybody know a success story?

Peter F on 10/28/02 at 02:38 (098467)

Nancy-thanks for that AND the advice ! Can I just ask one thing-all orthotics have pressed right on the tender spot (as do all normal shoes)-I have been told that is expected (using spencos) and that the arch needs to be stretched back out of its contracted shape over time-did the orthotics that helped you hurt for a while?

Re: Does anybody know a success story?

Julie on 10/28/02 at 02:50 (098468)

Peter, there are lots of success stories, and we certainly need a dedicated board of them.

I'm one, but as I'm a bit short of time I won't tell you the whole story, just that I had fairly debilitating PF, got better after about 5 months. Things that helped were rest, icing, non-weight bearing exercise, taping and well-made custom orthotics). I was 95% pain-free for a year or so, between January 2001 and January 2002, and progressed to 99% in the next few months. I am now 100% pain free.

I'm sure nobody 'takes it wrong' that you don't want any more advice, but as I don't recall seeing many posts from you, I wonder if you really have pursued a comprehensive treatment plan to put you on the road to recovery? Success stories ARE encouraging, but I hope you've also got a good podiatrist, that you've informed yourself about treatments, and that you're actively engaged in getting yourself better, which usually includes giving up activities that make PF worse.

Let us know how you fare.

Re: Does anybody know a success story?

Peter F on 10/28/02 at 04:22 (098469)

Thanks Julie-I have given up everything apart from low gear cycling in good shoes with my friends-that keeps me sane-the only thing nobody can seem to answer is does cycling delay recovery (feet are a BIt worse 36 hrs later) ?

Re: Does anybody know a success story?

Nancy N on 10/28/02 at 05:30 (098470)

Peter--

You're quite welcome. As for the orthotics, the orthotics that helped did make me a little bit sore for a while, but were nothing like the ice scrapers. We're talking a very mild soreness here, not anything that would worry me. Well, at that stage, it did worry me :) , but I talked to the CPed and he told me that the orthotics would 'bruise' the area a bit at first but that the feeling should go away within a week or two--and that if it didn't, I should come back in for an adjustment.

The adjustments are a critical thing that I forgot to mention. If you get something that can't be adjusted, you are up a creek if they don't work, like I was with the ice scrapers, which were almost completely non-adjustable. You mention Spencos, which aren't custom orthotics and therefore may not be right for your feet--I'd say that if you're using OTC orthotics and they hurt, you should try something else. I know the docs here say that PowerSteps are the best OTC orthotics they know of, so you might want to look for those--I think they cost about $35 but I might not be right about that. My custom orthotics cost me just over $300 but they have been worth every penny. If you have more specific orthotics questions, I'd suggest you post on the Inserts/Orthotics board, because Richard and the other CPeds tend to hang out there and they're the real experts on the subject, since they make orthotics for a living.

I know you didn't ask me about the biking, but my personal opinion would be that if the biking seems to hurt your feet, you shouldn't do it until you're pain free. You could just be exacerbating the problem.

Let us know how it goes...

Re: Does anybody know a success story?

Julie on 10/28/02 at 06:46 (098471)

That's ok, Pete. I agree with Nancy. If cycling causes discomfort/pain 36 hours later it signifies that your feet are being re-injured. The best thing would be to stop until cycling no longer causes pain.

You didn't answer my question (you don't have to!). Have you seen a podiatrist and are you on the road to healing with a comprehensive treatment programme? Or are you just hoping for the best?

I didn't ask out of curiosity, but because I'd like to help.

Re: Does anybody know a success story?

john h on 10/28/02 at 11:54 (098485)

Peter I do not remember their names but their have been a number of people who have left the board but on occasion drop in to say they are doing well. I particularly remember Mohez because he had bi-lateral PF for many years and 11 ESWT treatments and last year dropped by to say he was cured.

Re: I hope not :-)

elliott on 10/28/02 at 13:38 (098491)

Ever the contrarian (but with reason), I say we should *not* have a board dedicated to success stories. While perhaps momentarily inspirational, all that does is give a distorted picture of what happened to work for the lucky ones (e.g. loads of posts raving about successful PF surgical releases)--what goes wrong is also important. A Success board also misses out on those who got better and disappeared without saying so.

What I say we *should* have is a History board, or Bio board--call it what you like--where we each post a history of our condition to date. The posts, only one per person, would be password-protected and revised by the author as necessary (and would include insightful success stories a la Nancy N's well-written piece).

Such a setup would be oh-so-useful both for newbies and regulars, patients and docs. It would obviate the need for constant rehash. I asked for just such a board a long time ago. I believe it is an idea whose time has come (assuming Scott R is willing and able).

[]

Re: I hope not :-)

Nancy N on 10/28/02 at 14:41 (098498)

Elliott--

Would you distinguish between success stories and horror stories, or just leave the posts as-is in the hope that wading through them would give readers a cross-section of histories/situations? I think it's good to highlight the success stories for those who need to read something positive, but I also agree that it's important to present the downside of surgery, etc.

Scott briefly had a Success/Horror stories board, but it went away a while ago. I don't remember why. I am getting kind of tired of typing up my story, though :) I don't mind sharing it--maybe I should keep it in a text file and paste it into new messages as necessary.

Re: Does anybody know a success story?

Peter F on 10/28/02 at 14:58 (098500)

Yes I have seen different podiatrists and have been told various things-their inserts all hurt so I didnt use them-I finally saw a Rheumatologist who prescribed spencos and told me they would hurt as they stretched the arch-I can now walk around in them with only an annoying fullness in the heel but no pain unless I stand in them for a few minutes.

I have had no shots no eswt (diff to get in UK) and no surgery-I once read that Dr Z says the average case of PF is 2 years which gives me hope-to be honest its only my little daughters that keep me going .

Thanks for all your help

Re: I hope not :-)

elliott on 10/28/02 at 15:15 (098503)

No, I wouldn't distinguish between success and horror, just leave it as is (sometimes success is qualified anyway). Not too much wading necessary if it's only 50 posts or so, as I suspect it would be. Maybe it can even be set up so all the histories can be read with one click, just like new posts on the other boards. Anyway, if someone asked for success stories, all you and others with happy endings would have to say is 'see my post on the History board'; no long re-typing necessary. But that board's merits go way beyond that: I'm sometimes kind of curious where everyone, especially the regulars, are holding, and bet others are too, but constant asking is unfair and re-hashing is tedious. Such a board would take care of that. And someone browsing that board may have a helpful suggestion to an individual after reading his/her story. Lots of good reasons.

Re: Peter - ESWT in UK

Julie on 10/28/02 at 16:48 (098505)

Peter, a guy called Carsten something posted a couple of days ago that he gives ESWT treatments in London (Cadogan Square) for about (if I remember rightly) 200 pounds a time.

It doesn't sound as though you've had much help from the podiatrists you've seen. I can recommend mine, if you're in or near London. Ron McCulloch works in lewisham and also out of Harley Street; he's head of podiatric medicine at Guy's and looks after the podiatric needs of two football teams (one is Charlton, I forget the other).

Here's the link to his website:

http://www.londonpodiatry.com/

Re: History board

Julie on 10/28/02 at 16:52 (098506)

It's a good idea, Elliott - it will be useful for all the reasons you give (it will be most useful if people update their entries occasionally). I hope Scott is listening.

Scott?

Re: I hope not :-)

wendyn on 10/28/02 at 17:17 (098508)

Elliott - the best idea I've heard in a long time. Scott turned of his email notification, I will drop him a note.

Re: History board

Julie on 10/29/02 at 02:01 (098525)

The more I think about this idea, the better it seems. The time is right for it. Heelspurs.com has been going for - how long? Three, four years? When I first found it, about two and a half years ago, there were very few people posting compared to now, and their histories were - relatively - short. Now there is a history, lots of the regulars are still around, and more to the point, a number of us have (more or less) 'completed' a history in the sense that we are better, but still around to tell the tale. It's no longer the case that those who resolve their foot problems disappear forever; there is now a community of folks who have been around for a long time and have amassed a good deal of knowledge but want to stay to help others, and to keep in touch with the friends they've made.

It would be good and useful if all this could be collected and given a permanent place on the board.

Re: Peter - ESWT in UK

Peter F on 10/29/02 at 02:28 (098527)

Thanks Julie-I live far north but may contact the Chap in London -I suppose it could be done in a day trip although are you allowed to simply walk to the train after a Rx of ESWT?

Re: Peter - ESWT in UK

Julie on 10/29/02 at 02:37 (098528)

Not having had ESWT myself I can't answer from personal experience, but I remember John H saying that he had no trouble after his treatment in New Jersey, got straight back into his hired car and drove to the airport and flew home to the Deep South.

It might depend on the type of machine that is used and the strength it is used at. You should probably talk to Carsten before making a decision. (He did say that he usually gives three treatments.)

Have you established that your PF is treatable by ESWT? Check the ESWT board. I believe the best indicator of success is when there is localised pain at the insertion point.

Re: I hope not :-)

john h on 10/29/02 at 08:44 (098539)

Call it what you want but we all need success stories which provide hope and positive reinforcement. PF is depressing enough without ever reading about someone who got well or much improved.

Re: Peter - ESWT in UK

john h on 10/29/02 at 09:04 (098542)

My treatments were with the Or--- with Dr. Z. In each case it was on both feet. The first treatment I had foot blocks but subsequent treatments no blocks were used. The Or-- is a fairly strong machine and as I recall Dr. Z was using 18Kv with somewhere arond 1500 shocks. Very little pain after the first 10 pulses and I had absolutely no pain after treatment and drove 100 miles to Baltimore/Washington and walked around through 2 large airports for several hours before arriving back in Little Rock. Some of the machines I read people post about in England were machines I had never heard of and have not idea of their power output or mode of operation (spark gap, hydraulic, etc). I would make sure I clearly understood what machine your practioner is using and the history of success with that type of equipment.

Re: I am going to take on making a success board

Mahatmelissama on 10/29/02 at 15:12 (098582)

I feel it needs to be done and I will do it wheather anyone likes it or not *wink*.

I just have to get some time to do it! I myself am NOT cured but better than I was.

I have Direct TV Dsl and hope to harness the space. I would also have to figure out a short profile for each person (photo? small story and then they could link to their own webpage if there is more).

I will put it out there that this will be up and running by Feb. 2003 (to give myself a date to get my act together).

Scott R will be encouraged very much by me to link to this webpage...but that is up to him.

I WILL NOT PUT UP ANY HORROR STORIES ON IT. Somebody else can take that on if they want it.

This board NEEDS TO BE DONE and if somebody else wants to do it, pls let us all know and I will gladly drop out. I just want to make sure this is done.

I need to set up a place for people to send their stories. For now,just reply to this message and I will get your response (it e-mails me).

We need this encouragement, all of us.

Re: Peter - ESWT in UK

Peter F on 10/30/02 at 03:15 (098646)

Thanks again Juile

The only factor which seems to have improved is that I have to press v hard now to find a medial tender spot and I have no morning pain now-BUT my heels ache diffusely on standing several minutes -I dont know if that is good news ie getting better or bad news because it is not localised-the problem I find is that there is no info about the normal resolution of PF -it would be nice to read somewhere that the initial tender point goes away but the foot aches for a few months and then gradually improves etc (I suppose we are all v different)

Re: I am going to take on making a success board

dave r on 10/30/02 at 07:38 (098652)

good idea

Re: Does anybody know a success story?

Peter F on 10/31/02 at 16:02 (098827)

thanks John-I've read his posts since you mentined the name

Re: I hope not :-)

scott r on 11/03/02 at 17:41 (099196)

The success/horror stories board went away because no one posted.

Re: I hope not :-)

nancy s. on 11/03/02 at 18:06 (099199)

that's not so, scott. i posted, and so did a few other people. i think people might have been turned off by your 'horror stories' addition to the original intent. seemed there were enough horror stories spread all over the boards -- it was the uplifting stories that were hard to find. they're still hard to find, even though a few of us post one every couple of months.

but what do you think of elliott's idea? i think it's good.

nancy
.

Re: I hope not :-)

Nancy N on 11/03/02 at 20:27 (099217)

Scott--

Do we really want a success stories board to become a huge discussion board? I see it more as a place where people can go to find success stories, maybe post a question or two, but otherwise, they should just be there as a place where people can see that there are people who have recovered. Maybe more like a moderated board--someone could send you their success story, you could post it, and then discussion could take place elsewhere--someone could post a question in response to a success story on the treatments or social board, for instance.

I wonder if it wouldn't be better that way just because otherwise, the stories themselves would be harder to find. The other setup would allow for a repository of stories that would be easy to locate.

Just my two cents.

Re: New board - Scott

Julie on 11/04/02 at 02:12 (099237)

I posted on the Success Stories board too, Scott, and as I recall there were at least eight posts on it before it was removed. That might have been enough to encourage new people - as Nancy N says, it doesn't have to be a big discussion board.

I too like Elliott's idea of a History board, which would serve all the purposes he cites in his post above. Newcomers could be guided to it and it would save much of the repetitive questioning and answering that goes on. Some of us - Nancy and Nancy, me, John, Wendy, Carole, Suzanne and others - have been saying the same things over and over again for many moons. A History board would make a lot of that unnecessary. It would be in the nature of a History board that it would contain at least some 'full histories', i.e. 'success stories', as well as ongoing ones.

If you decide to do it, would it be possible to have an editing facility, so that people who post their histories can bring them up to date as and when appropriate?

Re: Does anybody know a success story?

Nancy N on 10/27/02 at 16:28 (098443)

Peter--

I can offer you a success story.

I had PF for about two years. It started over the summer of 1999, and since I had already had it in my left foot, and got over it pretty quickly, I thought I could handle it myself by just making sure that I wore my orthotics religiously. By the time I realized that my bright idea wasn't working, I was in some serious pain, and of course had to wait a few weeks before I could get an appointment with my pod.

I went in and he prescribed PT for me, and to keep wearing the orthotics. The insurance I had at the time would not cover orthotics, so we were hoping to get by with what I had until my plan changed, if necessary. So I went to PT. I am firmly convinced that PT made me worse--not because PT is a bad thing (it's done wonders for many people here) but because I was given a regimen which was almost guaranteed to aggravage the existing condition. Moral of the story: If it hurts, speak up! I didn't, thinking that PT wasn't supposed to feel good, and probably lengthened the duration of my PF in the process.

After doing PT for a few months, I went back to the doc and bit the bullet for the new custom orthotics. I got ice scrapers in return for my cash. That's all they'd ever be good for. They certainly didn't help my feet--at least, not for more than a day or so. Then I'd feel even worse than I did before. I also tried a night splint and a walking cast. All this while I was still doing the weightbearing stretches that I'd been given in PT, even though they hurt, too. I'd been told to do them anyway. Again, I think all these things that hurt my foot only made it harder to heal the PF.

A few weeks after I got done with the walking cast, I saw a post here about an FDA study for an ESWT device in the Bronx. I live in New Jersey, so this was not right next door but was pretty manageable, especially for a free treatment! So I went. Along with the treatment, I was given a prescription for Celebrex and told to keep stretching--this time, for ten minutes at a time! (I still find that one hard to believe, and wonder if I misheard the doc--but that's what I heard, so that's what I did, even though it hurt).

I finally got tired of spending ten straight minutes stretching, and the pain associated therewith, and got a device from this site that allowed me to do non-weightbearing stretches. (I don't think it's available anymore, the FootTrainer would be the closest to it that's still available here). What a difference it made! I could stretch almost any time, for any length of time, without further injuring myself, as I believe I had done for several months without realizing it. The new stretches, along with the Celebrex, made a big difference for me. By the time the study was over, and it turned out that I had indeed had the placebo treatment (as I suspected), I was feeling much better.

Right around that time, I found a CPed nearby and interviewed him in the hope that he'd be a good person to make me some new orthotics. I talked to Richard, one of our resident CPeds on heelspurs.com, and got a list of questions to ask before giving this guy the go-ahead. I went in to see him, and he passed with flying colors. I got new, non-ice-scraper orthotics from him a week or so later, and then I felt a really big difference. I was mostly better before, but the orthotics pushed me over the edge, and also helped to deal with some slight tendonitis that I think was starting to creep in.

I've been 99% pain-free since then--and that was around March of last year. I go on long walks through the city, on concrete, and feel no pain other than ordinary soreness from overuse. I don't worry about how long the line is at the grocery store anymore. In fact, I marvel that I can do all the things I once feared I would never do again. For as awful as PF is, once you conquer it, it does give you a new appreciation for previously mundane activities.

So... I know you said you don't want advice, but in case it helps (you can ignore this part if you like!), the stuff that worked for me was Celebrex (I'd tried just about every other NSAID in the book with no effect), stopping the weightbearing stretches, and new orthotics made by a CPed. If you haven't tried those, I'd suggest you do. But even if you have, there is still hope out there. I was close to the last resort, which was ESWT and then surgery only if I was truly desperate. A lot of people here have had great success with ESWT, so if you have insertional PF, you might want to consider that as well.

The cloud does have a silver lining!

(And, Scott R, if you're reading this, I am more and more convinced that we need a board just for success stories... just to remind people that there is hope!)

Re: Does anybody know a success story?

Peter F on 10/28/02 at 02:38 (098467)

Nancy-thanks for that AND the advice ! Can I just ask one thing-all orthotics have pressed right on the tender spot (as do all normal shoes)-I have been told that is expected (using spencos) and that the arch needs to be stretched back out of its contracted shape over time-did the orthotics that helped you hurt for a while?

Re: Does anybody know a success story?

Julie on 10/28/02 at 02:50 (098468)

Peter, there are lots of success stories, and we certainly need a dedicated board of them.

I'm one, but as I'm a bit short of time I won't tell you the whole story, just that I had fairly debilitating PF, got better after about 5 months. Things that helped were rest, icing, non-weight bearing exercise, taping and well-made custom orthotics). I was 95% pain-free for a year or so, between January 2001 and January 2002, and progressed to 99% in the next few months. I am now 100% pain free.

I'm sure nobody 'takes it wrong' that you don't want any more advice, but as I don't recall seeing many posts from you, I wonder if you really have pursued a comprehensive treatment plan to put you on the road to recovery? Success stories ARE encouraging, but I hope you've also got a good podiatrist, that you've informed yourself about treatments, and that you're actively engaged in getting yourself better, which usually includes giving up activities that make PF worse.

Let us know how you fare.

Re: Does anybody know a success story?

Peter F on 10/28/02 at 04:22 (098469)

Thanks Julie-I have given up everything apart from low gear cycling in good shoes with my friends-that keeps me sane-the only thing nobody can seem to answer is does cycling delay recovery (feet are a BIt worse 36 hrs later) ?

Re: Does anybody know a success story?

Nancy N on 10/28/02 at 05:30 (098470)

Peter--

You're quite welcome. As for the orthotics, the orthotics that helped did make me a little bit sore for a while, but were nothing like the ice scrapers. We're talking a very mild soreness here, not anything that would worry me. Well, at that stage, it did worry me :) , but I talked to the CPed and he told me that the orthotics would 'bruise' the area a bit at first but that the feeling should go away within a week or two--and that if it didn't, I should come back in for an adjustment.

The adjustments are a critical thing that I forgot to mention. If you get something that can't be adjusted, you are up a creek if they don't work, like I was with the ice scrapers, which were almost completely non-adjustable. You mention Spencos, which aren't custom orthotics and therefore may not be right for your feet--I'd say that if you're using OTC orthotics and they hurt, you should try something else. I know the docs here say that PowerSteps are the best OTC orthotics they know of, so you might want to look for those--I think they cost about $35 but I might not be right about that. My custom orthotics cost me just over $300 but they have been worth every penny. If you have more specific orthotics questions, I'd suggest you post on the Inserts/Orthotics board, because Richard and the other CPeds tend to hang out there and they're the real experts on the subject, since they make orthotics for a living.

I know you didn't ask me about the biking, but my personal opinion would be that if the biking seems to hurt your feet, you shouldn't do it until you're pain free. You could just be exacerbating the problem.

Let us know how it goes...

Re: Does anybody know a success story?

Julie on 10/28/02 at 06:46 (098471)

That's ok, Pete. I agree with Nancy. If cycling causes discomfort/pain 36 hours later it signifies that your feet are being re-injured. The best thing would be to stop until cycling no longer causes pain.

You didn't answer my question (you don't have to!). Have you seen a podiatrist and are you on the road to healing with a comprehensive treatment programme? Or are you just hoping for the best?

I didn't ask out of curiosity, but because I'd like to help.

Re: Does anybody know a success story?

john h on 10/28/02 at 11:54 (098485)

Peter I do not remember their names but their have been a number of people who have left the board but on occasion drop in to say they are doing well. I particularly remember Mohez because he had bi-lateral PF for many years and 11 ESWT treatments and last year dropped by to say he was cured.

Re: I hope not :-)

elliott on 10/28/02 at 13:38 (098491)

Ever the contrarian (but with reason), I say we should *not* have a board dedicated to success stories. While perhaps momentarily inspirational, all that does is give a distorted picture of what happened to work for the lucky ones (e.g. loads of posts raving about successful PF surgical releases)--what goes wrong is also important. A Success board also misses out on those who got better and disappeared without saying so.

What I say we *should* have is a History board, or Bio board--call it what you like--where we each post a history of our condition to date. The posts, only one per person, would be password-protected and revised by the author as necessary (and would include insightful success stories a la Nancy N's well-written piece).

Such a setup would be oh-so-useful both for newbies and regulars, patients and docs. It would obviate the need for constant rehash. I asked for just such a board a long time ago. I believe it is an idea whose time has come (assuming Scott R is willing and able).

[]

Re: I hope not :-)

Nancy N on 10/28/02 at 14:41 (098498)

Elliott--

Would you distinguish between success stories and horror stories, or just leave the posts as-is in the hope that wading through them would give readers a cross-section of histories/situations? I think it's good to highlight the success stories for those who need to read something positive, but I also agree that it's important to present the downside of surgery, etc.

Scott briefly had a Success/Horror stories board, but it went away a while ago. I don't remember why. I am getting kind of tired of typing up my story, though :) I don't mind sharing it--maybe I should keep it in a text file and paste it into new messages as necessary.

Re: Does anybody know a success story?

Peter F on 10/28/02 at 14:58 (098500)

Yes I have seen different podiatrists and have been told various things-their inserts all hurt so I didnt use them-I finally saw a Rheumatologist who prescribed spencos and told me they would hurt as they stretched the arch-I can now walk around in them with only an annoying fullness in the heel but no pain unless I stand in them for a few minutes.

I have had no shots no eswt (diff to get in UK) and no surgery-I once read that Dr Z says the average case of PF is 2 years which gives me hope-to be honest its only my little daughters that keep me going .

Thanks for all your help

Re: I hope not :-)

elliott on 10/28/02 at 15:15 (098503)

No, I wouldn't distinguish between success and horror, just leave it as is (sometimes success is qualified anyway). Not too much wading necessary if it's only 50 posts or so, as I suspect it would be. Maybe it can even be set up so all the histories can be read with one click, just like new posts on the other boards. Anyway, if someone asked for success stories, all you and others with happy endings would have to say is 'see my post on the History board'; no long re-typing necessary. But that board's merits go way beyond that: I'm sometimes kind of curious where everyone, especially the regulars, are holding, and bet others are too, but constant asking is unfair and re-hashing is tedious. Such a board would take care of that. And someone browsing that board may have a helpful suggestion to an individual after reading his/her story. Lots of good reasons.

Re: Peter - ESWT in UK

Julie on 10/28/02 at 16:48 (098505)

Peter, a guy called Carsten something posted a couple of days ago that he gives ESWT treatments in London (Cadogan Square) for about (if I remember rightly) 200 pounds a time.

It doesn't sound as though you've had much help from the podiatrists you've seen. I can recommend mine, if you're in or near London. Ron McCulloch works in lewisham and also out of Harley Street; he's head of podiatric medicine at Guy's and looks after the podiatric needs of two football teams (one is Charlton, I forget the other).

Here's the link to his website:

http://www.londonpodiatry.com/

Re: History board

Julie on 10/28/02 at 16:52 (098506)

It's a good idea, Elliott - it will be useful for all the reasons you give (it will be most useful if people update their entries occasionally). I hope Scott is listening.

Scott?

Re: I hope not :-)

wendyn on 10/28/02 at 17:17 (098508)

Elliott - the best idea I've heard in a long time. Scott turned of his email notification, I will drop him a note.

Re: History board

Julie on 10/29/02 at 02:01 (098525)

The more I think about this idea, the better it seems. The time is right for it. Heelspurs.com has been going for - how long? Three, four years? When I first found it, about two and a half years ago, there were very few people posting compared to now, and their histories were - relatively - short. Now there is a history, lots of the regulars are still around, and more to the point, a number of us have (more or less) 'completed' a history in the sense that we are better, but still around to tell the tale. It's no longer the case that those who resolve their foot problems disappear forever; there is now a community of folks who have been around for a long time and have amassed a good deal of knowledge but want to stay to help others, and to keep in touch with the friends they've made.

It would be good and useful if all this could be collected and given a permanent place on the board.

Re: Peter - ESWT in UK

Peter F on 10/29/02 at 02:28 (098527)

Thanks Julie-I live far north but may contact the Chap in London -I suppose it could be done in a day trip although are you allowed to simply walk to the train after a Rx of ESWT?

Re: Peter - ESWT in UK

Julie on 10/29/02 at 02:37 (098528)

Not having had ESWT myself I can't answer from personal experience, but I remember John H saying that he had no trouble after his treatment in New Jersey, got straight back into his hired car and drove to the airport and flew home to the Deep South.

It might depend on the type of machine that is used and the strength it is used at. You should probably talk to Carsten before making a decision. (He did say that he usually gives three treatments.)

Have you established that your PF is treatable by ESWT? Check the ESWT board. I believe the best indicator of success is when there is localised pain at the insertion point.

Re: I hope not :-)

john h on 10/29/02 at 08:44 (098539)

Call it what you want but we all need success stories which provide hope and positive reinforcement. PF is depressing enough without ever reading about someone who got well or much improved.

Re: Peter - ESWT in UK

john h on 10/29/02 at 09:04 (098542)

My treatments were with the Or--- with Dr. Z. In each case it was on both feet. The first treatment I had foot blocks but subsequent treatments no blocks were used. The Or-- is a fairly strong machine and as I recall Dr. Z was using 18Kv with somewhere arond 1500 shocks. Very little pain after the first 10 pulses and I had absolutely no pain after treatment and drove 100 miles to Baltimore/Washington and walked around through 2 large airports for several hours before arriving back in Little Rock. Some of the machines I read people post about in England were machines I had never heard of and have not idea of their power output or mode of operation (spark gap, hydraulic, etc). I would make sure I clearly understood what machine your practioner is using and the history of success with that type of equipment.

Re: I am going to take on making a success board

Mahatmelissama on 10/29/02 at 15:12 (098582)

I feel it needs to be done and I will do it wheather anyone likes it or not *wink*.

I just have to get some time to do it! I myself am NOT cured but better than I was.

I have Direct TV Dsl and hope to harness the space. I would also have to figure out a short profile for each person (photo? small story and then they could link to their own webpage if there is more).

I will put it out there that this will be up and running by Feb. 2003 (to give myself a date to get my act together).

Scott R will be encouraged very much by me to link to this webpage...but that is up to him.

I WILL NOT PUT UP ANY HORROR STORIES ON IT. Somebody else can take that on if they want it.

This board NEEDS TO BE DONE and if somebody else wants to do it, pls let us all know and I will gladly drop out. I just want to make sure this is done.

I need to set up a place for people to send their stories. For now,just reply to this message and I will get your response (it e-mails me).

We need this encouragement, all of us.

Re: Peter - ESWT in UK

Peter F on 10/30/02 at 03:15 (098646)

Thanks again Juile

The only factor which seems to have improved is that I have to press v hard now to find a medial tender spot and I have no morning pain now-BUT my heels ache diffusely on standing several minutes -I dont know if that is good news ie getting better or bad news because it is not localised-the problem I find is that there is no info about the normal resolution of PF -it would be nice to read somewhere that the initial tender point goes away but the foot aches for a few months and then gradually improves etc (I suppose we are all v different)

Re: I am going to take on making a success board

dave r on 10/30/02 at 07:38 (098652)

good idea

Re: Does anybody know a success story?

Peter F on 10/31/02 at 16:02 (098827)

thanks John-I've read his posts since you mentined the name

Re: I hope not :-)

scott r on 11/03/02 at 17:41 (099196)

The success/horror stories board went away because no one posted.

Re: I hope not :-)

nancy s. on 11/03/02 at 18:06 (099199)

that's not so, scott. i posted, and so did a few other people. i think people might have been turned off by your 'horror stories' addition to the original intent. seemed there were enough horror stories spread all over the boards -- it was the uplifting stories that were hard to find. they're still hard to find, even though a few of us post one every couple of months.

but what do you think of elliott's idea? i think it's good.

nancy
.

Re: I hope not :-)

Nancy N on 11/03/02 at 20:27 (099217)

Scott--

Do we really want a success stories board to become a huge discussion board? I see it more as a place where people can go to find success stories, maybe post a question or two, but otherwise, they should just be there as a place where people can see that there are people who have recovered. Maybe more like a moderated board--someone could send you their success story, you could post it, and then discussion could take place elsewhere--someone could post a question in response to a success story on the treatments or social board, for instance.

I wonder if it wouldn't be better that way just because otherwise, the stories themselves would be harder to find. The other setup would allow for a repository of stories that would be easy to locate.

Just my two cents.

Re: New board - Scott

Julie on 11/04/02 at 02:12 (099237)

I posted on the Success Stories board too, Scott, and as I recall there were at least eight posts on it before it was removed. That might have been enough to encourage new people - as Nancy N says, it doesn't have to be a big discussion board.

I too like Elliott's idea of a History board, which would serve all the purposes he cites in his post above. Newcomers could be guided to it and it would save much of the repetitive questioning and answering that goes on. Some of us - Nancy and Nancy, me, John, Wendy, Carole, Suzanne and others - have been saying the same things over and over again for many moons. A History board would make a lot of that unnecessary. It would be in the nature of a History board that it would contain at least some 'full histories', i.e. 'success stories', as well as ongoing ones.

If you decide to do it, would it be possible to have an editing facility, so that people who post their histories can bring them up to date as and when appropriate?