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Old 06-06-2009, 02:13 PM   #1
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Newly diagnosed PTTD patient needs info

I am 49 yr of female, recently diagonsed with PTTD.
I am constantly in pain, and have been thru the run of
different orthotics and braces.
I just got my AFO's a couple of days ago...needless to say, this
is going to take some getting used to.
I am not looking forward to wearing these the rest of my
life....
I'm wondering for all you who have had the surgery to
correct this problem, was it successful. What went wrong?
What was right? If you had to do it all over again, would you?
I'm thinking of having the surgery!

 
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Old 06-06-2009, 05:19 PM   #2
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Re: Newly diagnosed PTTD patient needs info

When I started having problems with my PTT I went to the OS that replaced my knees last summer. He told me to do everything possible to avoid surgery. He said, "I wouldn't want that surgery". I admit that scared me to death. So I did all possible treatments but, when my PTT finally ruptured I was sent to a foot and ankle specialist. I had my surgery on April 29th and I'm in my second cast and in my six week of 8 non-weight bearing phase. My OS was right. This has been awful but NECESSARY. I just hope when I complete all phases of recovery, I'll be able to wear a normal shoe and can walk with a normal gait.

I don't know if any of this is helpful but I wish you the best of luck. My prayers are with you and everyone who has experienced this medical issue.
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Old 06-06-2009, 10:43 PM   #3
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Re: Newly diagnosed PTTD patient needs info

I had a Triple Arthrodesis due to 4th stage PTTD last Sept. 2nd. I did about 4-5 years in an AFO and kept deteriorating until it was very hard to do my work which is mostly on foot. It was so painful for so long I finally made the decision to have the surgery. It was difficult dealing with the non-weight bearing recovery as I had knee surgery 3 mos. before and couldn't use a knee walker. I dealt with more depression and pain in the leg I hopped on than pain in the foot during recovery. I was appx. 12 weeks non-weight bearing, perhaps because I'm 56 and overweight. When I got into the boot or cam-walker at 10 weeks, I was sure it was going to be a piece of cake. Instead it was several more weeks of slowly regaining strength and working in PT to regain a natural gait and full weight bearing. Now, 8 mos. later, I don't have pain in my foot. I have some swelling on days when I'm on foot most of the day. But it is a world of difference. My surgery was a fusion. I'm not sure how it goes for those who have tendon reconstruction but I would imagine it is slightly different. I have to say, I am totally glad I did it but hope I never have to go through something like it again. At least with knee replacement, you're walking from about day 2. While I found the surgical pain in the foot to be somewhat stronger than the surgical pain in the knee, it faded much sooner...much, much sooner!

Well, that's my story. It is a rough recovery and there were times I wondered if I'd ever be allowed to walk again, then, if I would ever walk comfortably. Those memories began to fade the first time I wore sandals with a dress without an AFO and without pain.
Linda

 
Old 06-06-2009, 10:52 PM   #4
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Re: Newly diagnosed PTTD patient needs info

I am 13 (almost 14) weeks post op for pttd surgery, with tendon transfer, calcaneal osteotomy, and other things I forget the medical names for. As the others have said, this surgery is painful, the recovery is slow and difficult and I would do it again in a heartbeat. The pain I had before is gone. I've gone from total NWB to PWB to FWB and am now back to PWB/a little NWB since I'm now in a boot. When I was FWB, there was little to no pain, just swelling and such at the end of the day. Oh, and that's usually when I'd get the dreaded foot zaps - sporadic bursts of pain. Not fun.

My doctor also said he'd never want this surgery since the recovery is so difficult and slow, but I needed it and I'm hopeful that I'll have a much more normal life when all is healed up. I wish I could give you more insight to further down the road, but I'm just a few months out of surgery.

Good luck with your decision. For me, it wasn't a choice, but if I had to choose it, I would.

 
Old 06-07-2009, 02:17 PM   #5
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Re: Newly diagnosed PTTD patient needs info

Hi Roman Girl,
I am 58 yrs old and only 5 weeks since surgery. I am very glad I have had the surgery. I did not want to spend the rest of my life in an Arizona brace. I was not ready to settle for what many Drs said I should be satisfied with. I had 5 Drs and 5 years before I found the OS who did the surgery. I think one advantage about waiting so long was that I had little swelling when operated on. I now have swelling and spend much of my time with my foot above my heart.

My Dr believes I will be able to walk 2-3 miles in a year and that sounds great! I realize that I may not have that good of a result but I made the decision that even if the result was not the best I needed to try. I hated the limited mobility I had and needed to do whatever was needed to make it better.

The surgery was ok since I was out for it and I had a nerve block that helped. I used pain meds for a short time after surgery but now I have more pain as they reposition the foot. so I am using the pain meds once in awhile now. My Dr uses casts and I have been getting a new one every two weeks. It is important to realize it is a long recovery.

Good luck with your decision, feel free to ask questions as they arise.

 
Old 06-07-2009, 10:34 PM   #6
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Re: Newly diagnosed PTTD patient needs info

The others have said it quite well, so I won't repeat their good advice. But wanted to add that this is a progressive condition that will NOT go away without surgery. You can manage it, sure, but that's not a very attractive option for the rest of your life. Not all outcomes are as good as others, but in my opinion, the chance for a good outcome far outweighs the certainty of a life with pain if you don't do it.

emmie

 
Old 06-08-2009, 07:16 AM   #7
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Re: Newly diagnosed PTTD patient needs info

Wow, awful huh? Is it been awful due to pain, or lack of mobility or what? I know I need it...I just don't want to come out in a worse situation than I'm already in....

 
Old 06-08-2009, 07:23 AM   #8
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Re: Newly diagnosed PTTD patient needs info

Wow, I'm glad I found this site. I was feeling pretty alone in this situation and it's really been getting me down. It's good to know I'm not alone and that others have faced this too! Your story has definitely encouraged me. The one response I'm getting that's constant is....it ain't no picnic in the park! I'm ok with that...I'm a trooper. I just hope that there is a light at the end of the tunnel. Wearing a dress and sandals, and without pain! That's a light!

 
Old 06-08-2009, 07:43 AM   #9
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Re: Newly diagnosed PTTD patient needs info

Thanks for your response. I'm wondering how long they told you the recovery would be. My doctor told me I would be totally off my feet for at least 6-8 weeks, and then it would be another 8 weeks before I could travel. I work remotely, so I am home most of the time on the computer. When I do have to go...it's usually out of town. So, I'm prepared not to be able to travel for about 4 months. I'm thinking I won't be able to do much work for the first 6-8 weeks if I have to keep my foot elevated above my heart. Many times the doctors don't want to tell you the whole story because they feel it may discourage you from going thru with the surgery. Also, you said you went thru 5 doctors. I'm on number 4....the first 2 didn't recommend the surgery, #3 said it was a horrible surgery but an option, and my current dr is very optimistic about surgery. Is there any website that you know of to find the best OS - someone who specializes in this type of surgery?

 
Old 06-08-2009, 07:49 AM   #10
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Re: Newly diagnosed PTTD patient needs info

Wow, that's good info. So you're about 3 months post op. What is your activity level now? How much can you actually do?

 
Old 06-08-2009, 11:10 PM   #11
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Re: Newly diagnosed PTTD patient needs info

Romangirl, my doctor told me straight up it would be at least a year until I was back to normal activity. I'm at just about 3 1/2 months and I'm no where near normal. I've been in the boot for almost a week and I tried walking a bit without crutches today (maybe half an hour around the house) and I'm paying for it tonight. I don't know if I would want to travel at 4 months, but everyone is different.

Also, my doctor said I would be totally non weight bearing for 8 weeks, then partial for 8 weeks and he's been pretty dead on. I was full weight bearing in my hard cast, but with the boot I went back a few steps. He told me I'll be in the boot at least 4 weeks and he'll determine if I have to wear it longer then. I'm assuming I will, since he originally told me I'd be in the boot for 3 months after the hard cast. Now, you need to remember that I had two little bones cut and screwed together (on the top of my foot) and they are the reason I was in the hard cast so long and in the boot for so long. They are taking a long time to knit back together. You'll read stories on here of people who were out of the cast and into a boot within a few weeks -that might be you. It all depends on the extent of what you have done.

Something too you might consider - this surgery does things to your mind and many of us had really down days. I'm usually an upbeat and happy person (a bit of a Pollyanna, if you will) and I struggled with depression for a period of time. I think it was the meds, mostly, but it was also just being dependent on other people and not being able to do anything at all for a few weeks. Being a strong person, you might find it difficult to be so vulnerable. Just a thought.

Anyway, good luck and keep us informed of your progress.

 
Old 06-09-2009, 10:03 AM   #12
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Re: Newly diagnosed PTTD patient needs info

What is the difference between Triple Arthrodesis and PTTD? I had a TA and 2 toes shortened 13 days ago.

 
Old 06-11-2009, 07:23 PM   #13
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Re: Newly diagnosed PTTD patient needs info

I just saw your post about the difference between PTTD and a triple arthodesis and I understand that with PTTD you have several separate things done to your heel, tendon and foot. In the arthodesis, your ankle bone is fused together - I think usually with about 3 screws. As my OS described this procedure, your foot/ankle no longer will have side-to-side movement. It will have the up/down movement. Some people with PTTD end up having the arthodesis done later.
I was diagnosed with stage 2 PTTD in January 2008. I have learned to manage it fairly well. By manage I mean I can't be on my feet for more than about 4-5 hrs. at one time. I have to " rest " my foot. Certain shoes help too. Curiously enough, a pair of sandals I have feel great...I think its because they " cup " my foot and cause me to pronate on the outside of my foot.Away from the weak tendon. I opted to wait until I have severe pain 24/7 before I decide on any surgery and then it will likely be the arthodesis.

Good luck !

 
Old 06-12-2009, 06:08 PM   #14
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Re: Newly diagnosed PTTD patient needs info

I had stage 4 pttd,(waited way to long for the surgery) and had a triple arthrodesis with achilles tendon lengthening Jan 15. It is called a fusion but it is not an ankle fusion (in my case that fusion or a joint replacement may come in the future ). Yes side to side movement is gone but up and down is still there. Will you need a fusion or can they repair the tendon? If they repair the tendon you should have more mobility.

I would recommend staying in the hospital for 2 nites if possible to get the pain under control and learn how to crutch or use another assisted device. The recovery is long and tedious but not terribly painful after the first few post op days. I am 5 mos post op and walk with a cane (can hobble around the house on my own). I hope to be walking better within a few months. I am 61 years old, I think the younger ones have rehabed faster.

Good luck...it will be fine

Hugs, Shelly

 
Old 06-13-2009, 07:13 AM   #15
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Re: Newly diagnosed PTTD patient needs info

I just read through these notes and realized I never answered the ? about how I found my Dr. I went to a teaching hospital that I heard good things about for years...it is a 2 hr drive unfortunately.

I looked it up on line and looked over the OSs who specialized in feet and ankle surgery. I chose the one I liked, then researched him, he had published research on the surgery and many folks reported him as a great surgeon.

I made an appointment and was convinced when I met him that he had done the surgery enough and he felt confident about the outcome, unlike the other OSs I had been dealing with in the past.

I am not sure where you live or how close you are to a teaching hospital you are, but keep looking and searching. Then trust your gut when you meet the person. Feel ok about asking "how often they do the surgery" "What is their patient satisfaction rate" Look them up with the State medical boards to see their complaint record.

Good luck!

 
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