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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Mon Jun 29th, 2009 07:50 pm |
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Hi all :-)
I have recently discovered that my "stupid little toe" has a name - and soon after I found this site. Oh my, has it changed my life! Just knowing that all you guys are out there feeling the excact same way and sharing the same feelings of embarrassment makes it quite a bit easier being me :-)
I have created this thread in order to share my "path to surgery" with you.
My story is that I have brachymetatarsia on my left foot. I don't remember when I discovered that my toe was different, it just seems that it has always been that way. Family album pictures show that I have had normal toes once but my first real memory of it is somewhere around start teenage years. Now I'm 28 years old and suddenly full of hope that one day I will have a normal left foot! No more hiding!! :-)
I have had e-mail contact with Dr. Lee and he says that my condition is very correctable :-) I have attached a picture below. Tomorrow I'm gonna have x-rays taken and along with some pictures I will send it to Dr. Lee to get his opinion on how to do it. I live in Denmark, quite far away from Arizona, but I reeeally want this done. Maybe I'll just make a vacation out of it :-)
You are more than welcome to comment this thread and share your stories too. I just thougth it would be nice to make kind of a diary out of this. Hope you think so too :-)
Thanks for reading this far... I'll stop now but return when I have news to share - take care!Attachment: 1.jpg (Downloaded 319 times) Last edited on Mon Jun 29th, 2009 07:52 pm by Hope |
happee_feet Member

| Joined: | Tue Feb 17th, 2009 |
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| Posts: | 102 |
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Posted: Mon Jun 29th, 2009 07:58 pm |
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Neat idea Hope. I look forward to following your story. It is exciting isn't it?! 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Mon Jun 29th, 2009 08:05 pm |
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Hi Happee_Feet
Thanks. Yeah I'm totally excited. Just want it done right away so I can show my feet off in flip flops! I wanna be freeeee!
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ddinardo122hotmail.com Member
| Joined: | Thu Apr 16th, 2009 |
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| Posts: | 57 |
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Posted: Tue Jun 30th, 2009 04:24 am |
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Hope,
Best of luck on your journey to beautiful feet. Dr. Lee does amazing work. Just be prepared for the long recovery. I think I was a little naive about the severity of the surgery and the length of the recovery. However, I think in the end it will be worth all the pain and sacrifice.
Best wishes,
ddinardo
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Tue Jun 30th, 2009 07:33 pm |
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Thanks ddinardo.
So I had my x-rays taken today and on friday I have an appointment with my own doctor to have a talk with him about what's gonna happen. Also I need him to refer me to a specialist who will be able to do the post-surgery follow-up.
Quite a lot of details to work out but I hope some things will fall into place friday.
Any of you who has heard from Dr. Lee recently? I sent him an e-mail several days ago but still haven't gotten a reply...just wondering.
Thanks for reading this 
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ontario1 Member

| Joined: | Tue Apr 14th, 2009 |
| Location: | Ontario Canada |
| Posts: | 78 |
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Posted: Tue Jun 30th, 2009 09:57 pm |
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Best of luck Hope! I will be following your thread. 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Mon Jul 6th, 2009 09:34 am |
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So today I'm going to pick up my x-rays.
I havent't seen them yet so I'm very excited to find out if only my metatarsal bone is shorter or if it also is my toe bone. Of course I'm hoping the first. I had x-rays taken a few years back but I just don't remember if the toe bone was also shorter.
Back then the doctors just told me to forget about it, it's not that bad... OMG people without brachy just don't understand, do they?!
Another foot specialist told me that he would recommend me to have it surgically removed because it was to no use for me to have it floating up there! It terrifies me that I was actually thinking about it! I would have never forgived myself if I had done that and then discovered this site!! 
I'll let you know what my x-rays show later today. Have a nice day 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Tue Jul 7th, 2009 04:29 pm |
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Now I have my x-rays ready to be sent to Dr. Lee along with some new pictures of my ugly foot! Just wanted to share them with you...Attachment: x-ray top.jpg (Downloaded 230 times)
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
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Posted: Tue Jul 7th, 2009 04:30 pm |
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| Both feet... Attachment: DSC00416_.JPG (Downloaded 227 times)
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
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Posted: Tue Jul 7th, 2009 04:31 pm |
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| Close-up... I can't wait to get this fixed!! Attachment: DSC00419_.JPG (Downloaded 227 times)
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ontario1 Member

| Joined: | Tue Apr 14th, 2009 |
| Location: | Ontario Canada |
| Posts: | 78 |
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Posted: Tue Jul 7th, 2009 04:36 pm |
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| Thanks for sharing your pics and xrays Hope. It looks like you have just a short metatarsal but not a short toe bone-that's great! Did you find someone who can do your post-op yet?
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nisha1984 Member

| Joined: | Fri Apr 25th, 2008 |
| Location: | Sacramento |
| Posts: | 122 |
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Posted: Tue Jul 7th, 2009 04:54 pm |
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| Yeah, to me it looks like just a short metatarsal bone. Good luck though, and thanks for sharing. I also have brachy only on my left foot.
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happee_feet Member

| Joined: | Tue Feb 17th, 2009 |
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| Posts: | 102 |
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Posted: Tue Jul 7th, 2009 04:58 pm |
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| I agree it looks like just the short metatarsal. Are you going to get the bunion corrected with the surgery?
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Tue Jul 7th, 2009 05:54 pm |
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Thanks all.
I have been staring at my x-ray to figure out if only my metatarsal bone is short and I think that I've come to same conclusion as you I have the picture on a cd that I'll send to Phoenix and on it is a program where you can do measurements - and it looks like my toe could become quite normal sized after just one surgery 
If Dr. Lee can fix the bunion in the same surgery then I think I will ask him to. Otherwise it is something I can live with. Fixing my brachy toe is priority number absolutely one! 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Tue Jul 7th, 2009 05:56 pm |
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Hi Ontario,
No I haven't found a post-op doctor yet. I had an appointment with my own doctor this friday but I had to cancel it because I was too busy at work. I will make a new appointment with him to discuss the surgery, post-op follow-up and all the other details I have to figure out 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Fri Jul 10th, 2009 02:49 pm |
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So this morning I went to see my doctor to talk about brachy and surgery. My plan was to go see Dr. Lee in Arizona as soon as possible but my doctor wanted to see if he could find someone for me here in Denmark who can perform surgery. He has never seen a brachy-toe before I went into his office quite a lot of years ago and he is very concerned about my problems with it - and wants to help me as much as he can through this process :-)
If a surgent cannot be found in Denmark I will of course contact Dr. Lee again - but for the moment he is "on hold".
Just an update from me - hope you are all well 
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nisha1984 Member

| Joined: | Fri Apr 25th, 2008 |
| Location: | Sacramento |
| Posts: | 122 |
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Posted: Fri Jul 10th, 2009 05:06 pm |
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| Wow Hope. Your Dr sounds cool. most doctors who dont know about brachy, really dont wanna help you when it comes to trying to find a solution. So your lucky that this dr is interested enought o even wanna search for someone who can help you. I hope he finds someone closer for you, but if not, I hope Dr. Lee is acessable for you! Good Luck! I hope to have my surgery where I live sometime in October.
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
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Posted: Fri Jul 10th, 2009 10:32 pm |
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Thanks Nisha,
Yeah I really appreciate his interest. Like I mentioned he has never seen this before - and surely that must be interesting for a doctor 
Best of luck with your surgery!!
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loren Member
| Joined: | Thu Jun 19th, 2008 |
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| Posts: | 24 |
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Posted: Mon Jul 13th, 2009 01:55 am |
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hi ddinardo
thanks so much for sending me your photos. your feet look great and i can't believe that it was taken at 8 weeks. it makes me so excited to have mine i can't wait for September to come.. look forward to hearing how your foot will feel on the 14th please send us some updated photos if you can
Loren
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Thu Jul 23rd, 2009 06:33 pm |
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An update:
My doctor referred me to a public hospital with a special orthopaedic department - just about 30 km from where I live.
I've just received a letter from them saying that they can examine me on the 15th of October!! I really don't want to wait that long just to be examined and then afterwards wait another couple of months to have surgery 
Well now I have two options. In Denmark we have a guarantee saying that you have to be examined within a month. That's not the case for me so now I can choose either another public hospital or a privat hospital.
My own doctor is of course on holiday so I can't talk to him before he gets back. I have to ask him what to do because it's really hard to choose another hospital by myself.
So now I just have to wait for him to get back to office. Grrr... I just want to get going with this now!
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ontario1 Member

| Joined: | Tue Apr 14th, 2009 |
| Location: | Ontario Canada |
| Posts: | 78 |
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Posted: Thu Jul 23rd, 2009 08:29 pm |
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Hi Hope! 
Just wondering if you choose the other hospitals (private or public) would they have the special ortho department that you mentioned? Would this be to find if the surgery could be done in Denmark or if there would be a qualified person to do follow up if you had the surgery done in the US?
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Thu Jul 23rd, 2009 08:55 pm |
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Hi Ontario 
The first step is to see if I can find someone here in Denmark who can do the surgery. I just think it'll be very hard to find someone with enough experience to make we feel comfortable with it.
I know that more public and private hospitals do lenghthening procedures on e.g. the thigh bone but to me there is a huge difference to doing the procedure on a small bone such as a metatarsal.
As mentioned I have to wait until my doctor gets back from holiday. I have to ask him if he can refer me to another hospital. If not then I'll have to find out if I can travel to the US to have surgery and just do the follow up here in DK - and not have to pay for it myself.
How are you doing?Last edited on Thu Jul 23rd, 2009 08:55 pm by Hope |
Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Fri Oct 30th, 2009 09:43 pm |
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A lot has happened since my last update...
I have been to the local hospital that my doctor referred me to.
I now have a date for surgery on the 23rd of November - with external fixator. I guess I should be happy now but I'm really not. The doctor I talked to did everything he could to talk me out of doing it. Of course he should tell me about the risks involved but he seemed to be very much against this kind of surgery in general. He said they had done the surgery there earlier but couldn't (or wouldn't) tell me about the results or anything. I think maybe he doesn't believe that is it a serious problem. He actually told me that -not in words but with his attitude. I was really mad, frustrated and sad when I left his office because I had been very excited to go there. I have an appointment there on the 12th of November where I'm gonna talk to him again.
I'm worried about the lack of experience and as things are now I don't want to do the surgery on my local hospital.
This wednesday I had a phone consultation with Dr. Lee and that sure brought my mood up He really is a nice man and I felt so much more comfortable with him. He said that I'm a great candidate for the one-stage surgery. He would give me 20 mm and then no one would probably ever know I've had this funky toe. The doctor from my local hospital said he could/would give me no more than 10 mm - which wouldn't even be enough.
I believe a whole lot more in what Dr. Lee told me because he has so much experience and believes that brachymet really is a huge problem.
Bottom line I guess is that I will probably go to Phoenix some time soon! Of course I will have to pay for it myself then but I just feel so much more comfortable with Dr. Lee doing my surgery. Then I don't have to get the external fixator either.
That was my update. I hope everyone is doing well 
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ontario1 Member

| Joined: | Tue Apr 14th, 2009 |
| Location: | Ontario Canada |
| Posts: | 78 |
| Mana: |     |
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Posted: Sun Nov 1st, 2009 12:11 pm |
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Hope... I don't blame you for being worried about your doctors lack of experience and also not even understanding what it means to have this deformity and to want it fixed. I think that definitely Dr. Lee is the best option. Will this doctor be able to give post op care or recommend someone who can?
I haven't done anything this fall yet as I wasn't planning on having it done till June time but still consider Dr. Lee my best bet. There may be a doctor in Toronto that can do the ex fix but then same as you- how much experience do they have with this type of surgery???
Good luck and keep us posted!
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
| Mana: |     |
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Posted: Sun Nov 1st, 2009 03:17 pm |
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Ontario... And if we only have one shot of correcting our condition then why not go with the best man - instead of going with some unexperienced doctor who might mess it all up.
I'd never forgive myself if I let an unexperienced doctor experiment with my toe and end up even worse than now - with no possibility of having it corrected.
So Dr. Lee is also my best bet 
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Hope Member

| Joined: | Fri Jun 5th, 2009 |
| Location: | Denmark |
| Posts: | 37 |
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Posted: Sun Nov 1st, 2009 04:52 pm |
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... and to answer your question Well my doctor says that it will be no problem to find an orthopedic to do my follow up.
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rightandleft Member
| Joined: | Mon Feb 2nd, 2009 |
| Location: | New York |
| Posts: | 135 |
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Posted: Fri Nov 20th, 2009 05:29 am |
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Hi Hope
are you all set for your surgery in December w/Dr Lee
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