It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Foot & Ankle Problems Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-16-2008, 12:13 PM   #1
Senior Member
(female)
 
Join Date: Feb 2008
Location: California
Posts: 193
Wymom94 HB User
Living with severe PTTD, pes planus, hyperpronation

Hi, I've posted on here recently, but keep getting more info from my son's doctors and seem to keep having questions for you all. My son is 14 and is now permanently disabled due to his feet. Until we learned this, we really believed this was temporary and would be "fixed" by some means (first we belived PT and bracing would do it, then surgeries). We now know he won't be "fixed" and want to know how to best help him out as he lives with this (while also working toward imrovement). He is contiuing with PT and bracing and may have surgeries as well, but we know now that none of that will make him all-better. So, how and what do we do to help him adjust and make more things possible for him (things we thought he'd get back to after he was 'fixed'). What best helps those of you with permanent disability due to your feet, those who can't be active w/o pain and whose feet are really far gone? For long outings, we have a wheelchair so our son can take long rests. It's a basic wheelchair and we didn't have to pay for it (it's my mothers). Should we get a really nice wheelchair for him and what kind would be 'nice'? When he isn't using the wheelchair, what can help other than the braces and not being out long? Is there some other kind of assistive aid or something we can do that will make it less painful for him or enable him to last longer on his feet (or OFF his feet, but last longer while out and about). Are there things he should avoid? Is there a better way to set up the house for him? What helps? What hinders? We want him to have more 'living' then he's had the past year1/2 since his feet became the constant pain they are for him now. And, what about when he's older and out on his own for long stretches... what will help then, the wheelchair or something smaller/lesser? Would it be best not to have a manual wheelchair so he can use it w/ ease himself? What about a scooter instead of a wheelchair? What does everyone else use for longer periods of time on their feet (when they can't be on their feet for long periods)?
Sorry this was long -and thank you.
-wymom

 
Sponsors Lightbulb
   
Old 11-16-2008, 07:29 PM   #2
Inactive
(male)
 
Join Date: Nov 2007
Location: USA
Posts: 108
geggar HB User
Re: Living with severe PTTD, pes planus, hyperpronation

14 years old and considered permanently disabled and in constant pain whenever he walks? I don't know what doctors you've seen but I have never seen anyone that is permanently disabled at the age of 14 because of this. You really need to get in to see a foot & ankle orthopaedic surgeon or a surgically board certified podiatrist. Have you tried a Richie or Arizona brace? Otherwise there are many surgeons out there that are more than capable of reconstructing an arch for your son. I've had patients with pronation so bad that they broke their ankle from the stress on the fibula and either surgery or the 2 braces that I mentioned have made it so they can walk quite well. I would try a little more treatment. To say he is permanently disabled is a little rediculous at his age especially with the limited treatment so far. Permanent disability should only be used to describe a condition when all reasonable treatment has been exhausted.

 
Old 11-16-2008, 10:57 PM   #3
Senior Member
(female)
 
Join Date: Feb 2008
Location: California
Posts: 193
Wymom94 HB User
Re: Living with severe PTTD, pes planus, hyperpronation

Hi jcpelly, Yes we've been to two b.c. Podiatrists now, both with specialties in our son's specific problems, and are seeing our first orthopedic surgeon on Wednesday. The doctors we've seen so far have reiterated what you said, that they haven't seen the level of damage in someone our son's age before. The surgeries that have been discussed were triple arthrodeses and a combo surgery where they'd split the Achilles tendon, fuse two foot bones (navicular and calcaneus, I believe) and also place a titanium implant in for support in each foot. One doc felt both surgeries were necessary, that it would be impossible to avoid the triple but we'd do the "lesser" surgery first and see how long it may help. That doc expected our son would need the triple by/during college even w/ the other surgery (which he'd like done this year, but one foot at a time). He said there was absolutely no other way our son would ever improve any, that the braces and PT will only help very minimally. The other doc said he didn't want our son to EVER have the triple and said the other surgery might help, but also might not or might even make things worse or trade x pain & problems for y. That one said our son would not improve much without surgery, but felt that he likely wouldn't with them either. He also said there was no reason to split our son's Achille's tendon. Both doctors were really good with us, explained a lot so we could understand, and have a lot of experience -good records. I realize there were some stark differences in their opinions, but expected some and knew we'd have to figure things out after getting the additional opinions. We have two more opinions lined up, one for next week and another in 3 weeks time, so we'll end up with two further opinions from podiatrist and 2 from orthopedic surgeons -in addition to our son's current podiatrist. The 2 orthopedic surgeons we're seeing are at research hospitals (UCSF and Stanford). We're also trying to get our son into Shriner's Hospital, if they accept his sponsorship. Our son has been in Physical Therapy for 11 months now (plus daily home therapy) and wearing orthotic braces for 10&1/2 months. He has not had any surgeries or procedures on his feet as of yet. He was misdiagnosed before last Nov, before starting treatment. He has not tried a Richie or Arizona brace, has worn AFO's for half-leg (full-calf) and also foot & ankle height. He is currently wearing a special new mid-calf height brace -the best so far- but it was special made and I don't believe it has a name. How is a Richie or Arizona brace helpful (and how does it differ from a regular AFO)? Should I just google the brace name? We will be trying more treatment, most definitely. If our son does have surgery, we wouldn't do it before summer (unless there was a guarantee that it would signicantly help him .. then we'd jump at it despite our son's wanting to wait 'til school's out) --we have time to further research and continue with PT. We wouldn't dream of giving up the braces. (Oh, the 2nd podiatrist said our son would need some kind of brace, more than just an orthotic insert but not necessarily a tall brace, for good, whether or not he had surgery... he really did not feel surgery could significantly help our son where the other doc did). I love hearing what you are saying about it being presumptuous of the docs to say 'disabled'. That is what I want to hear. I hope we hear it again at one of the upcoming consultations and maybe the tide will turn in our son's favor. It is hard trying to adjust to the idea of him living with disability; it's just not what we wanted for him. Temporary is a much easier pill to swallow. We definitely haven't exhausted all treatments and are still moving (harder than ever) with this. I want to make sure, though, that we don't allow surgery unless it has a high chance of helping, low chance of causing problems. I'm trying to figure out what is best, right, and safest, but also want to bring a higher level of independence and 'fun' to my son's life now (and later) that he is not currently enjoying. I thought I'd pick the brains of others who bring that higher level for themselves, then incorporate their suggestions, tips, etc for my son. For instance, bicycle riding was suggested as an activity our son that he would probably be able to manage (he is hardly physically active anymore). Our son, however, pointed out to us that he'd need an indoor stationary bike b/c what would he do when he was out and then couldn't ride anymore b/c of the pain.. how would he get home when he needed to stop moving, stop standing even and just rest w/ his feet and legs up --on a stationary bike he could just get off if/when that happened. He also said his knees often hurt while using even the stationary bike for his PT, but he'd be in control if it was stationary and could just stop, couldn't do that on a 'real' bike. I was looking for ideas like that -things he can do, but that are tailored to him really being able to do them.. and what things might help like a stationary vs outdoor bike or better wheelchair vs keeping the one we have. And, we are getting a stationary bike or will use a gym for this if we can't find a good one or figure out where to put it. We are considering converting our garage into a physical therapy-workout room b/c our space is really, really limited... funds, too, though. It wouldn't happen right away. Right now 1/3 of our dining room is our physical therapy room (treadmill & basket w/ therabands, physioball, 'pancake', and other items for home PT).
---btw, In my 'dream world', I'd find an outdoor bike that had a modification where our son could also work it like a wheelchair to if he was out and his feet or knees wouldn't allow him to continue with leg-motion... then he could go out with friends and just be a kid w/o worrying about the pain and getting stuck somewhere unable to move further on his own.
Anyway, I'd love to know how to best help my son, at home, while out, with assitive aids, without them, etc.
-wymom

Last edited by Wymom94; 11-17-2008 at 03:57 PM.

 
Old 11-17-2008, 03:22 PM   #4
Inactive
(male)
 
Join Date: Nov 2007
Location: USA
Posts: 108
geggar HB User
Re: Living with severe PTTD, pes planus, hyperpronation

The Arizona brace is a combination leather gauntlet/short AFO built into one that really locks up the subtalar joint where your son's problems are coming from. The titanium implant procedure is called an Arthroeresis procedure and you can do a search and find a lot of info on that. They are right that by itself it would not be enough and would probably be combined with a talo navicular fusion. The subtalar fusion or triple arthrodesis would not use the titanium implant as that joint would be fused with those procedures. You could always go from the arthroeresis combo with the T-N fusion and if the implant didn't work could easily go to the triple arthrodesis. Other procedures to look into would be the evans procedure, medial slide calcaneal osteotomy, midfoot wedge osteotomy in various combinations. I don't know what they would be doing with the split achilles procedure. Most of the time tendon transfers for this by themselves never last and the deformity continues. I agree that a triple arthrodesis at age 14 is hard to fathom but of course I haven't seen the deformity either. You are doing what is best and just get these various opinions and see what makes sense. 4 opinions should be enough to get some consensus on opinions. Any more will just make it confusing.

 
Old 11-17-2008, 11:14 PM   #5
Senior Member
(female)
 
Join Date: Feb 2008
Location: California
Posts: 193
Wymom94 HB User
Re: Living with severe PTTD, pes planus, hyperpronation

Thank you for all the information, jc. I have more specific things to look up now -I want to get a solid handle on what's going on with my son and appreciate info like you shared. It really helps me get a better picture. Thank you, too, for the name of the implant procedure. The doc who wants the surgeries said it didnt' have a name, but he may have meant b/c he wanted to do the 3 procedures at once (that there isn't a name for the combo of them together). The doc who was against surgeries said we'd possibly be setting our son up for other bones 'failing' due to the fusion &/or surgeries themselves (in 5+ yrs time -& esp w/ the triple.. sooo different from 1st doc's belief that the triple would really help our son). It's a lot (for us) to weigh very different opinions, very much to take in and process for 'lay people' like my husband and myself. I'm trying to learn as much as I can. I am definitely looking up the other procedures you mentioned, too -want to know what other possibilities are out there.. and also familiarize myself with the correct terms. Oh, and the 1st doc wanted the Achilles split b/c he said it's super, super tight and 'short'? 2nd doc didn't think it was too short (it is tight, though) and said that, too, could have negative repercussions. We were told there were 2 ways to split it, but one was more of a sure-thing then the other. There's a bone at our son's heel (I don't know the name) that is suppose to be at a 45 degree angle, but it's perfectly horizontal instead --and another 'ball and socket' looking bone beneath the ankle that is suppose to be 'upright', but is side-lying. The navicular pokes out of the foot (not literally) and my son walks on it (it is a major source of pain pressing into his brace, but the brace is trying to 'press it back'). He toes out significantly and is knock-kneed (also hypermobile 'loose' knees), but his hips splay outward. I'm not even sure how he can do that combination, but the docs say it's all b/c of the feet, that his legs 'compensated'. He has other (serious/significant) medical conditions that make surgeries a bit more complicated (pain meds, too). His other medical conditions are also partly why he was misdiagnosed for a while. We'll probably be content after the 4th opinion.. I hope. I thought 2 podiatrist and 2 ortho surgeons would round the opinion-pool out nicely --and give us a nice idea of the different treatment protocols at different hospitals as well as different 'takes' by the doctors, just expand our knowledge base more fully. More than that might well be jamming our systems with too much input; we'll just filter through all the saturated info at that point.
And, truly, thank you again. --Any tips on what to do for him with everyday living, enjoying it w/o pain or discomfort?

 
Old 11-24-2008, 11:22 PM   #6
Senior Member
(female)
 
Join Date: Feb 2008
Location: California
Posts: 193
Wymom94 HB User
Re: Living with severe PTTD, pes planus, hyperpronation

jcpelly, I just want to thank you again. We've met with two orthopedic surgeons now and have struck gold with one of them. He works at a Children's Hospital and is wonderful. He thinks our son can get up to 50% improvement back after a calcaneal osteotomy (one of the procedures you mentioned for me to look up). He does think the Achilles tendon needs to be split and may put a screw in the ankles, depending on x-rays he suspects will show a problem there. He feels the braces being a help mean that our son needs his feet put into the good position the braces put them into -surgically so he does not need to rely on braces to do this (just inserts to help, after surgery). He'd like to work on the outside, inside, underside of the feet and get them back into proper position -without fusion. He's had numerous patients with feet as severe as our son's and a great deal of success in helping them. He says the constancy and level of pain our son feels from feet to hips is not typical even of kids with the severity of malformation our son has. He suspects our son's immune disorders have played a part in this. It would make sense since the constancy of pain began soon after our son's first autoimmune diagnoses. He's helping us to see a fuller picture and we are greatly impressed with him. He also noted a small start of problems in our son's hip x-ray, but just something small.
Thank you SO much for sharing information with me.
-wymom

Last edited by Wymom94; 11-24-2008 at 11:24 PM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Lichen Planus claujuh Dental Health 14 06-10-2010 06:56 AM
Lichen Planus of the Mouth ......... Help!!!! DaT_BoY_J Dental Health 2 07-27-2007 12:37 AM
oral lichen planus mary25 Dental Health 13 07-27-2007 12:30 AM
Flexible flat feet with hyperpronation David767 Foot & Ankle Problems 17 04-29-2007 04:38 PM
Flat foot, hyperpronation & very tight tendo-Achilles lili16 Foot & Ankle Problems 1 03-28-2007 05:59 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



roxygirl1 (187), Zerk (135), Titchou (132), Missyluke (121), Hollywood48 (119), ginger62 (100), LadyKanner (97), LisaBdot (83), AdkLizard46 (55), janewhite1 (52)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (905), Titchou (848), janewhite1 (823), Gabriel (759), ladybud (754), midwest1 (669), sammy64 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 05:35 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!