A board in trouble -- help needed, ScottRPosted by Ed Davis, DPM on 5/07/05 at 12:01 (174440)
Sorry folks, I just don't have enough time to help out at the Tarsal Tunnel Board. It looks like it is becoming the orphan board or this site.
Do we want to keep it as a conversation board or do we have enough doctors and/or educated personnel to go over there and lend a hand? Some of the threads are heading way out there, not maliciously, but just without adequate information. Scott does not have a lot of tarsal tunnel info. in the Heel Pain Book so we don't have that tool for help on that board.
Re: A board in trouble -- help needed, ScottREd Davis, DPM on 5/07/05 at 12:05 (174442)
ps. look at the conversation between Keven, Andrea and Darlene (for the docs) or anyone interested).
Re: A board in trouble -- help needed, ScottRJulie on 5/07/05 at 12:22 (174444)
You're right: it's a worry. I've just been there trying to help someone who was asking about surgery, but all I've got is my memory, which has stored a bit of what others have said over the years - no experience, no real knowledge.
The problem is that the people who know a lot about TTS and who used regularly to answer questions on that board, are no longer around as much as they were. All I can suggest is that we steer new posters to the 'Ask the Doctor' board, and to Steve Williamson's site and Wendy's FAQ, which are linked at the top of the TTS page.
My personal opinion of a conversation board is that the blind are talking to the blind on it. It's nice for people to know that others are suffering as they are, but TTS, especially when people are contemplating surgery, is such a serious subject - and bad advice can have such bad consequences - that if the doctors don't have the time to answer questions on it (understandable) it might be better not to have it.
Re: TTS boardwendyn on 5/07/05 at 14:20 (174447)
I'll admit that I stopped visitng that board a long time ago. The reason Scott started it is because we had so many people showing up here with TTS diagnosis rather than PF. That was back in the day when there was just one board - so it seemed like a logical category to add.
I had to stop going to that board because I felt my own personal opinions wouldn't be helpful or even welcome. After 6 years of my own experience having every doctor disagree with each diagnosis from the doctor before - I've pretty much lost complete faith in traditional medicine for chronic pain conditions like TTS. I recognize that as a 'syndrome' it's just a collection of symptoms that could be from many different things.
I think that surgery is often done with horrible results and that most patients have no idea that yes, in fact, they CAN be worse off. Too often the attitude is, 'What have I got to lose?' I think that too often there is an underlying cause that isn't corrected in any type of standard release and then the patient ends up with scar tissue and more problems.
If I were to return to that board my advice to those facing surgeons with knives aimed for their Tarsal Tunnels would be, 'Run or hobbble away as fast as you possibly can!'
I recognize that this isn't the advice most people want to hear. They want to hear that there's a relatively quick answer for their problems, and that the prognosis is good. Of course, I can't say any of that with a clear conscience and I'm obviously way too bias in my confidence of any possibility of positive surgical outcomes.
Re: TTS boardJulie on 5/08/05 at 02:54 (174462)
Wendy, you did your bit on the TTS board for a long, long time, and your FAQ is still the gold standard: it presents what you learned in own your search for help concisely and clearly. You've been a tremendous help to a lot of people, probably more than you know. I don't think you should feel any obligation to do more than you've done. And I completely understand and agree with your reasons for not wanting to post there any more.
Having said that, and having thought about this some more since yesterday, my opinion, for what it's worth, is that a TTS board without someone of Wendy's knowledge, experience, and intelligence regularly guiding and contributing to discussions on it, is worse than useless. I cannot see the point, or the benefit to anyone, of sufferers swapping their ignorance and basing crucial decisions such as whether to have surgery on the experience of people who know no more than they do. This isn't meant to offend anyone: after five years of reading about TTS I think we're ALL ignorant about it (with the possibl exception of our heelspurs doctors who don't have the time to participate on the TTS board.
As Wendy says, as a 'syndrome' TTS seems to be a collection of symptoms with a collection of causes, which doctors seem all too eager to get their knives on. There have been too many disaster tales for anyone to have any confidence in that approach, but those of us with no knowledge of the condition and how it can be dealt with can't go on saying forever 'do your research, surgery is a last resort', etc.
So what I think is that ScottR should consider closing down the TTS board (but maintain the links, perhaps on the home page, to Wendy's FAQ and Steve Williamson's site). People need information and guidance, and if that isn't available the board isn't doing its job and may be doing more harm than good. If there were no TTS board, people would ask their questions on the Doctor board. And for the support of fellow sufferers, there is the Social board.
I hope it's understood that I mean this constructively. What do others think?
Re: TTS boardJulie on 5/08/05 at 07:15 (174466)
I've just been going back over the TTS threads over the past month. While I was away there was a really good discussion about the reasons for the high incidence of failure of TTS surgeries, to which Elliott made some excellent contributions. In acknowledging and cheering Wendy's knowledge and experience of TTS, I didn't mean to ignore others, principally Elliott and Lara, who have also contributed much to the discussions on the TTS board. Their posts have always been informative and valuable. But unless they, or other knowledgeable people whom I may have neglected to mention, can commit themselves to posting regularly there, I think my diagnosis stands, and that new posters suffering with TTS would be better served by asking their questions on the Doctor board.
Re: TTS boardScott R on 5/08/05 at 08:47 (174470)
I strongly disagree with Julie. Just because answers on the TTS board are not as frequent or may not be as knowledgeable as on the other boards, I do not think that's a reason to close down a channel for TTS sufferer's to communicate. Just having a database of questions is important. The purpose of the boards is NOT meant to merely provide a forum for people to find good or professional answers to their questions. It's to allow people to communicate about the various topics even if everyone posting answers is ignorant (isn't that the gist of the claim against the TTS board - that no one 'intelligent enough' is answering questions?). It doesn't matter if there is advice that is given that is bad. As with everything on the internet and in the doctor's office, each individual has to fend for themselves and take all advice, professional or not, carefully. I don't see any reason to close it down. By the same reasoning, none of the boards would have been created in the first place.
Re: TTS boardJulie on 5/08/05 at 09:39 (174477)
I'm sorry you disagree, Scott (I probably shouldn't have used the word 'intelligent'.) I do think - I have always thought - that the provision of good information is more useful than 'communication' that doesn't lead people closer to good solutions to their problems, and I think Ed was right to point to the problem.
I don't think the last part of your post makes sense, though. All the other boards are lively, with the doctors or pedorthist(s) and others participating and contributing helpful information and advice. Only the TTS board does not. And the social board is a great channel of communication for sufferers of every kind to talk to and support each other.
But I'm not going to press it; as I said before, I meant my suggestion constructively and thought it would be for the good of posters with TTS, but it's your website, and of course I accept your decision.
Re: TTS board, ScottREd Davis. DPM on 5/08/05 at 11:52 (174485)
It is not a matter of having some one 'intelligent enough.' It is a matter of having someone 'informed enough.' Pauline, in her constructive mode, would have never allowed some of the disinformation currently on the board.
Yes, you want a repository of posts but the information contained in those posts need be contrstructive and 'correct' as possible, consistent with the level of posting on the other boards. Do you want one board hurting the credibility of other boards if posters post without adequate direction and correction of poor information?
Re: TTS board, ScottRScott R on 5/08/05 at 12:07 (174488)
'informed enough' is just another way of saying 'intelligent enough'. I would like to err on the side of freedom of speech and having a lack of intervention by a governing authority like myself. My intervention is limited to preventing mean and off-topic posts. I haven't extended that that intervention to 'stupid' posts or posts with 'misinformation'. I'm not going to decide what constitutes 'misinformation'. Many doctors claim web sites like this are iherently nothing but 'misinformation' because it doesn't have the stamp of approval from any association.
Re: TTS board, ScottREd Davis. DPM on 5/08/05 at 12:17 (174489)
I am hopefully intelligent and informed about tarsal tunnel but don't know anything about environmental engineering. If you had an environmental engineering site, I may approach it, hopefully, intelligently, but I could NOT give advice there.
As far as the doctors' who disturb you due to lack of 'officialdom,' I would maintain that official approval often is often a pathway to a form a censorship which you do not want here.
Re: To JulieEd Davis. DPM on 5/08/05 at 13:04 (174491)
Did you change your email? I still use (email removed) as my primary email but am migrating slowly over to a new webmail which is more secure and has spam and virus filters. My announcement of the new email included you but your address 'bounced' back to me. Please email me at my 'public' email at email@example.com so I can verify your email address and inform you of my new address which I will tend to keep somewhat restricted.
I believe you are using Mac so may not be aware how problematic spam,malware, phising, pharing...etc. has become via Internet Explorer and the Microsoft operating systems. I have to stick with webmail so a Mac would not help since I have to ''bounce' between 4 to 5 computers between office, home, hospitals...
Re: To JulieEd Davis. DPM on 5/08/05 at 13:05 (174492)
Sorry, the correct 'public' email is (email removed)
Re: TTS board, ScottRAmy on 5/08/05 at 13:47 (174496)
I have found the TTS board to be a place where sufferers can bounce ideas off of one another, commiserate about their injury, and basically find solace in the fact that others - be they few and far between - are having the same problem. There is nowhere else to find this on the internet or in my day to day life. If posters want doctors advice they can go to the ask the doctors board - I would hate to see the TTS board go....
As for misinformation, horror stories, etc., the savvy reader can weed through that and hopefully glean some useful advice from the posters on the TTS board. Just my two cents.
Re: TTS board, ScottRScott R on 5/08/05 at 14:05 (174497)
I didn't say anyone 'disturbs' me.
Yes, you would not feel justified in giving advice on an environmental engineering web site, but that doesn't mean you should not have the right to do it. By your reasoning no one here should answer anyone's questions except the doctors. Everyone should know by now that I'd ban doctors from answering questions before i'd banned patients from doing so.
Your last sentence is confusing because it sums up my position but you begin it with 'I maintain' which implies that the sentence is against my position. I also maintain that 'official approval often is often a pathway to a form a censorship' and that's exactly why I am not going to offically censor the TTS board because someone 'officially' disagrees with the information being posted.
I'm just really baffled by Julie and Dr. Ed. They seem to have decided that people in the TTS board should not be allowed to post because the posts are not up to their standards. Does that mean I should ban Dr. Ed and Julie if I don't agree with the information they post? That's like 2000% against everything these boards are supposed to be for.
Is this discussion occuring here in the SS board so that the TTS people won't know that they are being attacked?
Re: TTS board, ScottRelliott on 5/08/05 at 14:49 (174501)
I have to side with ScottR on this one. Just because the quality of answers on a particular board is currently not up to someone's standards is not a reason to pull it. It's a convenient place for such sufferers to get together and exchange ideas and sympathies. The quality of posts can change at any moment with the arrival or renewed participation of others--not that anyone has an obligation to spend time posting. This is the internet. You get what you get, and people must use their own judgment about the advice given. Every board anyway has its shortcomings. It could be said that the ESWT board is frequented by such pro-ESWT doctors that it does not give a balanced view of when to use it and realistic expectations about it. But that's what it is, and it's better than not having an ESWT board. To tell you the truth, I don't really see that much of a distinction between boards anyway. Anyone who sticks around begins uses the 'Messages Posted Since Your Last Visit' since it saves so much time over clicking on every individual post. I go to an individual board only when I seek additional clarity such as who was responding to whom or to reply at a later time. So if nothing else, it's a way to logically group TTS topics. Why ax it?
Re: TTS boardelliott on 5/08/05 at 15:22 (174502)
I think TTS surgery is getting too much of a bum rap here lately that I'd like to say a few positive words about it.
The first step in TTS surgery being successful is that the patient actually has TTS. TTS can have a more clearcut diagnosis when one feels nervy pain, such as numbness, burning, tingling, or electric shocks, at the inner ankle and especially when it radiates from there to certain toes, the heel, or up the calf. If one has that and a positive NCV to boot, there can be far more confidence in the diagnosis. If you're not sure it's nervy, if you have just some medial ankle pain but no clear nerviness and a negative NCV, or nerviness whose location does not match the course of the TTS nerve and branches, then it pays to be real careful. Regarding that line about your chances of success being better if there's an identifiable mass in the tarsal tunnel to remove, that may be true, but it's often not identifiable until they open you up. I've had bilateral TTS releases, and the engorged veins pressing on my nerves did not show up on the high-resolution MRIs despite their size astounding the doctors. Both surgeries were successful, which is not to say either recovery was smooth, easy, or fast. Yes, even for a clearcut diagnosis, the cause of the TTS can be harder to ascertain and deserves more thought than it gets. In my own case, it probably was flatfoot that caused it and which led eventually to the foot reconstruction I just had. But the TTS releases gave me my life back, and it was worth the risk given I didn't have much of a life being in such pain, there was confidecce in the diagnosis, and (at least with my second TTS release) the surgeon was very skilled in that area. Meet those three criteria and the wisdom of opting for surgery and your chances of success are far better than the impressions left on these boards.
Re: TTS boardDr. Z on 5/08/05 at 15:59 (174503)
Elliott makes a very important point in that the CAUSE of the TTS should be determined in order to help determine the success of the procedure.
Was the cause trauma, ankle sprain, foot structure, systemic disease etc has to be ruled out. What are the changes to resume activities such as running or any high impact sports needs to discussed before the surgery. Post TTS release seems to be another area of confusion. I will be back in three days or three weeks just isn't typical of any type of ankle surgery such as TTS release.
I believe all of these discussions and comments are in the search threads already
Re: TTS board, ScottRJulie on 5/08/05 at 16:22 (174504)
Scott, please: hang on. You've misunderstood me, and are now misinterpreting what I said. I gave the matter a great deal of thought, and made my suggestion in the interests of posters with TTS who are seeking help and aren't getting much of it these days on the TTS board. If you don't agree, that's fine with me. I wasn't attacking anybody, or suggesting official control, or 'not allowing people to post'. I've given you no reason to think so, and I'm very sorry you do.
My point was, and is, that people need information. The fact that they aren't getting it on the TTS board seems to me to be a problem, but if you don't think it is, it's your website, and your decision. I certainly understand the arguments in favour of keeping the board, and withdraw my suggestion. It's not one I'd have made if the people who know something about TTS were spending more time there trying to help people.
Re: TTS boardJulie on 5/08/05 at 16:28 (174505)
But Dr Z, new people may not even know there is a search facility, or how to use it.
Could you spend some time on the TTS board explaining the importance of a correct diagnosis before a procedure is decided upon, and other issues that arise?
Re: TTS board, ScottRAmy on 5/08/05 at 16:33 (174506)
There exists very little information out there - I've looked. This IS one of the only places to gather information - or misinformation - there is. Yes, it would be nice if more experts visited the board and offered advice - its not happening at the moment. I fact, I am beginning to believe there are very few experts who deal with TTS. I guess I don't understand why this is a big deal? Don't go to the board if you don't want to be bothered by it - Furthermore, I don't know why anyone would visit the board if: 1. They weren't a TTS sufferer. 2. They had never had TTS. or 3. If they weren't a Doctor. Again, my humble opinion.
Re: TTS board, ScottRJulie on 5/08/05 at 16:36 (174507)
Yes, this is the internet, but to say 'you get what you get' begs the question. The boards are what we all make of them, and if people who have some knowledge are prepared to give their time and make the effort to share their knowledge, what everyone 'gets' is of better quality.
If you feel that the TTS board is valuable, perhaps you, the poster who knows more about TTS than just about anyone else here, will spend more time posting on it from now on.
Re: TTS boardJulie on 5/08/05 at 16:43 (174508)
That is a great post, Elliott, a clear, useful, informative, encouraging post. If you were making more posts of this kind on the TTS board, as you used to, it would be a more useful board and there would have been no need for Ed to raise the issue, or for me to take it up. There would be no problem.
Re: TTS board, ScottRScott R on 5/08/05 at 17:05 (174509)
Julie, isn't suggesting that the board be removed the same as official control and not allowing people to post?
Re: TTS board, ScottREd Davis. DPM on 5/08/05 at 17:10 (174511)
Certainly, anyone can relay horror stories and use any board as a 'sounding board.'
The site has been fortunate, in a way, that most doctors and many of the board veterans have taken upon themselves to help protect newbies from going off in the wrong direction.
What if, say, a doctor, who appeared to have legitimate credentials took up residence on the say, surgical board and used that board to promote a surgical agenda which would be an agenda opposite the general experiences of your book and most on the site? What if, no one was available to challenge the agenda of that individual? Say, that happened 4 to 5 years ago. Think of how your site may be different.
Re: A board in trouble -- help needed, ScottREd Davis. DPM on 5/08/05 at 17:20 (174512)
I was trying to stay out of this thread Scott. A patient goes to a surgeon who puportedly performs more tarsal tunnel surgeries in a year than are cases in that state. It takes about 7 months to heel a tarsal tunnel operation. A poster has failed surgery, somehow thinks that he will see a recovery in 24 months from a 'great' surgeon.This surgeon performs more of such procedures than A. Lee Dellon, MD, one of the most famous tarsal tunnel surgeons in the US. No mention on how these patients were diagnosed. Coservative treatment? Anyone find compelled to enter this thread o nthe TTS board?
Re: TTS boardDr. Z on 5/08/05 at 17:39 (174516)
Re: TTS board, ScottREd Davis. DPM on 5/08/05 at 18:02 (174520)
Say, I came to your hypothetical environemental engineering site as one relating an experience. Then say my experience is highly anomolous yet other posters arrive to confirm the seeming veracity of my experiences. Now extrapolate that situation. Do you see how it could harm that site?
Re: A board in trouble -- help needed, ScottRScott R on 5/08/05 at 19:56 (174535)
Dr Ed, you started the thread, so you shouldn't complain if it sucks you back in. ;)
I can't understand most of what you're saying in the last 3 posts but i think you're describing details that don't concern me. I did not create the boards to help people get 'good' information. I created the boards so that people could communicate and exchange whatever information they chose within the bounds of my 'be nice' and 'stay on topic' rules.
Re: A board in trouble -- help needed, ScottRmarie on 5/08/05 at 21:35 (174542)
Keep the tts board! It's a vital source of compassion for an uncommon condition. Believe me there isn't much out there. Many of us found our way to this board via the tts section. And thanks for bringing this up I will try to visit there a little more.
Re: TTS board, ScottRelliott on 5/08/05 at 22:49 (174545)
Julie, in your vision of things, it would seem I have a duty to society to commit time on the TTS board. Wishing it is one thing, but I don't think it's fair to try to pressure me or anyone else to post more often. I could go on about increased job duties of late, of being drained emotionally and physically from my latest surgery, of wanting to put my dark TTS days behind me. But the simple bottom line is, I have no obligation to post at all. (Nor does wendyn, not that I buy her reason--she rarely posts on *any* board these days, and even on Social less frequently than before). I don't call that selfish--I call it choice. But that does not mean a TTS board is a bad idea. I think it's a great idea.
Re: A board in trouble -- help needed, ScottREd Davis. DPM on 5/09/05 at 00:10 (174547)
I got sucked in deep enough to inform you. Giving that board the time is not possible. If you need more information for the heel pain book to cover TTS, that is a possibility. At least that would give others the information to better help on that board.
Re: A board in trouble -- help needed, ScottREd Davis. DPM on 5/09/05 at 00:13 (174548)
You called TTS an 'uncommon' condition. A surgeon in a small town in Virginia does over 100 operations for this in 18 months. Is it uncommon or is somoething else going on.
Re: TTS board, ScottRJulie on 5/09/05 at 00:22 (174549)
No, it isn't the same, Scott. If there were no TTS board the people who post there wouldn't be disallowed from posting, they would post on one of the other boards (as do the people with achilles tendinitis, peroneal and post tib tendinitis, peripheral neuropathy, bunions, and all the other problems that feet are prone to but for which there aren't individual boards) and they would be more likely to get useful help. That was not always the case, but it is now. Perhaps the situation will change as a consequence of this discussion, perhaps more people will go to the TTS board and it will become a more useful place. I hope so.
Re: TTS board, ScottRJulie on 5/09/05 at 00:39 (174550)
In my vision of a better world, Elliott would choose to spend a greater proportion of his valuable posting time sharing his considerable knowledge and experience with posters on the TTS board.
If you chose to do this, the world, I mean the TTS board, would be a better place.
This is a compliment.
Re: A board in trouble -- help needed, ScottRJulie on 5/09/05 at 00:48 (174551)
I hope you will, Marie. You are one of the people who knows something about the condition). I'm sorry I neglected to mention your name in my one of my earlier posts.
Re: TTS board, ScottRJulie on 5/09/05 at 01:05 (174552)
Amy, your input on this thread is the main reason I've withdrawn my suggestion that the TTS board be closed. You clearly find it helpful, and I'm glad of that. Please understand, though, that I wasn't aiming to deprive TTS sufferers of a useful resource. The entire website is a useful resource, and if there were no TTS board people could and would post on the Treatments, Surgery, or Ask the Doctor board where there are more posters, doctors and others, who would try to help.
I felt that the TTS board had become less than useful, and that people were not getting the help they need. My proposed solution has been soundly outvoted, but I think the discussion has been useful and may lead to change. I would much rather see the board change for the better than closed, and I hope that is what will happen.
Re: TTS board, ScottRJulie on 5/09/05 at 01:13 (174553)
What about including a section on TTS in the heel pain book, which would be a repository of information to which people could be referred?
Re: Elliottwendyn on 5/09/05 at 07:20 (174558)
Quite true elliot. I don't post much anywhere anymore. I wouldn't have seen this thread at all if Julie hadn't used my name (which triggers an email).
However, I quit posting on the TTS board long ago for the reasons I gave.
Re: A board in trouble -- help needed, ScottRjohn h on 5/09/05 at 18:28 (174601)
Ed: I wonder how many of these 100 surgeries were actually needed Ed? I have this gut feeling from reading many post and my own experience that there are two many TTS surgeries. I know an Orthopedic MD in town who almost automatically includes a TTS release along with any PF surgery he does. It is not easy to diagnose so it is a much easier sell to a patient. You can get a lot of false positives on some of the diagnostic test. We had a heart surgeon in town that performed over 1000 bypasses in one year. He led the nation. He has had about 5 wives so he needs the money. He on some days did three surgeries and went through three sets of nurses.
Re: A board in trouble -- help needed, ScottR, Elliott, JohnEd Davis, DPM on 5/09/05 at 18:49 (174603)
Ststistically, can such a high number be possible Elliott?
John, your theory sounds very plausible -- just my opinion.
Re: A board in trouble -- help needed, ScottRJudyS on 5/09/05 at 22:50 (174625)
As I was reading this thread I remembered that when ScottR was breaking the message board in to sections, he added the TTS section after first asking us if we thought it was worthwhile given that this is a heelspurs site. It seemed at the time that there was enough discussion about TTS that it was worthwhile.
If the intent was to do nothing but provide a forum for discussion (as opposed to professional or informed, educated advice-giving) then there's no harm in leaving it in place.
But if this is a heelspur website, then is it misleading or a contradiction to provide anything entitled TTS?
Re: A board in trouble -- help needed, ScottREd Davis, DPM on 5/09/05 at 23:12 (174626)
Since TTS can be tied fairly closely to PF, most have felt it appropriate to include. We lack active engagement of the TTS board by doctors and board veterans at times which leads it to be a board 'without a rudder.'
When no one is present to correct misinformation on that board, it concerns a number of us because we want the information there not to mislead sufferers.
Re: A board in trouble -- help needed, ScottRJudyS on 5/09/05 at 23:30 (174628)
I guess that where I'm confused is that ScottR never created the message board(s) with the guarantee that all contributions therein would be 'medically' accurate. He provided a discussion forum - no more, no less. He's up-front on that.
For any contributors to be concerned that the information being shared there may be inaccurate is to take on quite a burden - the same burden could conceivably be incurred with all of the hs.com message board categories.
Is it something of a presumption that that burden needs to occur? A well-described discussion forum is just that and each participant is responsible for their own interpretation of the information being shared.
Could the Ask the Doctor category be considered a safety net of sorts?
Re: A board in trouble -- help needed, ScottRJulie on 5/10/05 at 04:27 (174632)
I wasn't going to comment any further on this issue, but I'm still so astonished at having been misinterpreted by Scott that I'm responding to Judy's two posts.
I don't disagree with Judy's, and Scott's, definition of a message board: of course it is correct, and it works well here at heelspurs, on all the message boards apart from the TTS board. On the Treatments board, on the Doctor board, on the Surgery board, on the ESWT board, on the Inserts board, there is, and always has been, a good balance of posts between new people suffering from heel pain and other foot pain (not only PF by any means) who arrive at the website at a loss, knowing nothing, but in often intense pain; and others who have some understanding of their problems: doctors, pedorthists, and posters who have 'been through it' and can and do share what they've learned.
The TTS board is the exception. No-one, or almost no-one, posts there now except for the sufferers who don't know what to do or where to turn. They may have been wrongly diagnosed, or they've had or are going to have surgery which may or may not be appropriate or even necessary; or they've already had surgery and can't understand why they are still in pain. They talk to each other and get support from each other, which is good, but they get little or no help from anyone who knows anything about TTS.
This wasn't always the case, but it is now. The doctors don't have time to help there, and the people with some experience and knowledge who used to post there don't any longer. (Before Elliott jumps on me again, I'd better say that of course no-one has the obligation to take on that burden.) The result is an unbalanced board, with people in pain, and in need, and at risk, talking to each other but getting no information or input that might put them on the right track.
Why is this happening? I think it's probably because the TTS board is one board too many. People with foot pain of all sorts come to heelspurs, but we don't have individual boards for each and every condition. If we did, if we had boards for the tendinitises, for Haglund's, for bunions, for ...I won't go on, you can see what I'm getting at - the limited knowledge, expertise and energy that is available here would be spread too thin. I think that is exactly what has happened to the TTS board. I don't think it's 'misleading' to have such a board, but I do think it is dissipating the available energy, with the result that the people who go there do not get the help they need. They could be getting that help on the other five boards if they posted on them. But they don't post on them - and most of them don't even come to the Social board. If the TTS board wasn't available, they would post on the boards that are.
I think TTS sufferers deserve a better chance of getting help from doctors and fellow posters, and that the existence of the TTS board probably militates against that happening. If the reasoning behind my suggestion that it be closed wasn't clear before, I hope it is now. If I'm alone in thinking there is a problem, and if no-one else besides Ed wants to look for a solution to it, so be it. But for Scott, or anyone else, to think that I wanted to 'ban' people with TTS from coming here is a travesty *.
* absurd or grotesque misrepresentation
Re: A board in trouble -- help needed, ScottREd Davis, DPM on 5/10/05 at 10:28 (174643)
Jujlie and I don't agree on everything but Julie is very sincere, honest and dedicated. I would take her concerns very seriously.
Re: A board in trouble -- help needed, ScottREd Davis, DPM on 5/10/05 at 10:28 (174644)
Julie and I don't agree on everything but Julie is very sincere, honest and dedicated. I would take her concerns very seriously.
Re: A board in trouble -- help needed, ScottRJulie on 5/10/05 at 16:17 (174656)
Ed, I have never disagreed with you on a medical matter, only on political matters. :) I am glad that you raised this problem, but I think you, and I, have to accept that we've been outvoted.
Re: A board in trouble -- help needed, ScottRmarie on 5/11/05 at 17:57 (174751)
UMMMMMMMMMM...........yep it is. Aside from the folks here I have never met anyone with tts.
My docs knew nothing of it........at all.
It is uncommon not rare.
Re: A board in trouble -- help needed, ScottRJohn H on 5/13/05 at 09:36 (174889)
Marie: Neither have I and I have associated with a lot of athletes who you think might be prone to this problem. Perhaps there are a lot of people who just call it foot and ankle pain since this is not a common disease the public is aware of.
Re: TTS Board and conversation about itcarynz on 5/15/05 at 11:23 (175077)
I have not posted in a very long time however do read the boards when time permits. As for this TTS Board and information contained in it and the heelspurs pain book pages......Had it not been for this board and the information I got from it 2 years ago, I would have never had enough ammunition to go back to the neurologist and ortho surgeon to push for further testing etc. It was this site and TTS board, Wendy and some others who gave me enough to work with so I could go further. My own doctor knew of TTS but was amazed at the info I gave him to read which turned out to be much like a good book he admitted after reading the information. I was able to take this information to a foot/ankle surgeon in Vancouver who after much agonizing and taking a piece of the sural nerve from my left ankle determined that surgery for TTS would not be my answer as he did not feel the problem would be repaired due to much nerve damage already. After this appt. I was then able to give this information to CPP who after 18 months determined that yes I suffered with chronic pain and that the condition known as TTS is in fact good enough to be granted disability benefits.
I thank people like Wendy and Scott for having this information available when I needed it most. Don't take that away from here, there may be others just like me who have nothing else to go on and may find the one thing they need to get a clear understanding and eventual diagnosis to the condition they may suffer from.
I suffer everday with chronic pain in my left ankle and now the numbness and tingling has gone up into my lower calf so for some it gets worse, others may be able to go on for a long time without any changes.
So this is my 2c to share, but don'[t take the TTS board off this site.
Re: TTS Board and conversation about itelliott on 5/16/05 at 16:03 (175138)
Can I ask a few questions about your case:
1. Where exactly on your foot is your nerve pain?
2. Why did the doc take a piece of your sural nerve from your ankle?
3. Did doing so leave you with any new sensory problems?
4. The sural nerve branch goes down the outer side of the ankle, while the TTS nerve goes down the inner one. So how was doing something with the sural nerve a test for TTS (surgery)?
Re: TTS Board and conversation about itcarynz on 5/19/05 at 20:35 (175338)
my nerve damage is both sides. Yes I know where the nerves run thanks. Probably in haste to write my 2c, did not go into great detail. First thought that TTS condition was reason for all the pain. Upon further testing , I had part of the sural nerve taken to determine if in fact neuropathy was my condition rather than TTS. I have no feeling in my left foot or ankle now right up my lower calf. it has not extended to the knee level yet but my balance is affected greatly by having lack of circulation and numbness/tingling in the left foot itself. I was tested for MS as well since the symptoms are very similiar also for diabetic neuropathy but this has all proved negative. Final diagnosis last year is Chronic Demylinating Peripheal Neuropathy. Recently I was diagnosed with a type of Peroneal Atrophy, which is directly influenced by the peripheal nerve. Over the last 2 1/2 years I have also been experiencing 'shock like pain' which is actually more painful than anything else.
Until I found this board, all of this was 'french' to me and it was hard to find any information at all.
Re: TTS Board and conversation about itjohn h on 5/19/05 at 21:46 (175342)
Caryn: What type of Doctor removed a portion of the nerve in your foot? Did you lose feeling after this surgery or were you experiencing it before?
Re: TTS Board and conversation about itcarynz on 5/20/05 at 15:11 (175380)
Re: TTS boardEd Davis, DPM on 5/25/05 at 15:52 (175720)
The veins would have shown up if the MRI was done with contrast dye, probably. One can only go so far, diagnostically -- if someone did an MRI and NCV and decided to do surgery, we would consider the MRI with contrast to be uneeded. I would be inclined, considering the statistics (up to 30% off TTS being caused by varicsoties) to skip the standard MRI and go directly to the MRI with contrast.
Re: TTS boardJohn H on 5/26/05 at 09:35 (175757)
Neece: Send me you address. Send email to '(email removed)'. I will mail them promptly. There is no charge thank you.