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Old 07-27-2012, 08:08 PM   #1
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Thumbs down OCD - Nervous

I was recently given the results of my MRI via phone by my doctor's assistant because I live an hour away and had requested this. The doctor's assistant told me I need to see the doctor (appt is on Tuesday).

I was told I have an OCD - osteochondral defect, bone marrow edema, and a small anterior bone spur.

I fell down some stairs nearly 6 years ago and have had swelling and increasing pain in my ankle - the problems have grown more rapidly over the past three years. I have seen several doctors and, unfortunately, was never given much care or comfort from them until I saw a foot and ankle specialist. With the first visit, he had xrays taken and then sent me for an MRI.

I am very relieved to have a diagnosis but am very nervous from reading all of the information about this condition. I am nervous about my job but can't possibly live such a limited existence anymore. I have gained tons of weight due to limited activity (my foot hurts when I walk for any extended period of time or if I stand on it for too long and it swells up daily).

I am glad to be seeing my OS on Tuesday so I can get a clearer picture of the damage.

 
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Old 07-28-2012, 10:50 PM   #2
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Re: OCD - Nervous

Welcome to our world, sorry to say. My OCD is thanks to a very deep but narrow hole alongside a curb that I stepped into in the dark ten years ago, and it has certainly changed my life.

My favorite activity has always been hiking, but that came to a screeching halt. Forget about backpacking (because of the extra weight to bear) which I used to do in the Catskill wilderness areas. I don't even consider anything that requires jumping or impact of any kind.

I'll be blunt: I am extremely grateful if I am able simply to walk without pain, and I will never take that for granted.

I don't care if I never run again in my life (I wasn't a runner anyway) as long as I can take gentle strolls with my dog. I don't care if I sit out the volleyball game as long as I can carry a load of laundry up the stairs.

Weight gain has been a problem for me, too, for the same reasons -- limitations, pain, ongoing surgeries -- so I bought a recumbent bike on Craigslist. As soon as my OS give me the okay I'm going to try to get my weight down for the sake of my ankle and overall health/strength.

 
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Old 07-29-2012, 10:57 AM   #3
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Re: OCD - Nervous

Hi pclare,

Thank you for the response.

I am glad to find a place where people understand what I am going through. I don't think people who haven't experienced this can understand what it means to have limited use of your foot. I am sure there are people out there who suffer worse ailments, don't get me wrong.

Like you, I hope to be able to enjoy a walk with my dogs and my husband - right now, I can't enjoy a walk. I have to stop every so often because of the pain. If I push myself, my foot feels almost like it is burning in some places and it swells up like a balloon.

I recently purchased something called a fitbit, which tracks my steps (I rarely get enough steps - I am sure you can guess why). Along with my steps, it tracks my food intake, sleep cycle, water intake, food intake, etc. I would be so happy if I could get to a point where I could ride a bike to burn some calories. It feels like a vicious cycle - I need to get weight off to alleviate extra pressure on my ankle but it is painful when I do the simplest of things to try and exercise - namely, walk.

I am hopeful it will get better but I AM nervous. I have seen so many posts and know there are several different treatments for OCD. I am hoping my ankle will be fixed with the simplest remedy but fear that it will require something more aggressive. On the plus side, I feel like I have found a good OS and that he will do all he can to repair my talus.

Again, thanks for the response and have a great day!

 
Old 07-29-2012, 09:35 PM   #4
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Re: OCD - Nervous

Try a recumbent bike -- or if it's an option, swimming is a terrific alternative, although it's certainly not as convenient as walking!

Keep your hopes up! You've been in pain for so long because you were never properly diagnosed or treated. That doesn't mean you'll have a bad outcome and be stuck with it forever (like some of us). According to my surgeon, YES, there ARE people who go through these very same surgeries we're all discussing and never have trouble again. I just don't happen to be one of them.

They're also coming up with new things all the time, so even I have hope that one day I'll finally get a fix that will stick and maybe even be able to hike again. Never lose hope!

 
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Old 07-29-2012, 10:12 PM   #5
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Re: OCD - Nervous

As pclare said...

Swimming!

I was told that I'll be doing that as part of my PT after I face my own bout of surgery here soon-- within the next year and a half! Hopefully though, before 2013. We're all sure of that.

I know what it's like to walk with pain, believe me.

It's impossible for me to have my foot down for more than 10 minutes, and I'm not to the point where I cannot walk at all on my foot... I'm only 14!

I'm the opposite: I have barely been able to walk the past 4 months, and I'm eating like normal, but I have lost about 30 pounds (I was about 140, 5'0" before... overweight!) and now I'm 5'0" and 114 pounds... How I do it, I have no clue. If I knew, I'd let you know!

Good luck with your appointment/s. Keep us updated!

 
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Old 08-09-2012, 08:24 AM   #6
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Re: OCD - Nervous

Hang in there BigAsLady - we all have very similar issues.

Last edited by DanceLdy; 08-09-2012 at 08:29 AM. Reason: Duplicate post - system glitch - can't remove it

 
Old 08-09-2012, 08:26 AM   #7
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Re: OCD - Nervous

Hang in there BigAsLady - we all have very similar issues.

My OCD is thanks to a pot hole at the university football field parking lot. A sports med doc actually diagnosed it correctly about 15 months later. Had my microfracture/debridement almost two years after the injury. Was doing pretty well through recovery and able to chaperone a full marching season as well as winter guard season without "too much" trouble.

Unfortunately, I still have issues with the ankle, now my sports med doc believes it is something different from the original OCD (although the arthritic condition is due to the OCD). We are working on different options and will see how things progress.

I'm a former dancer who has always been active. Have gained about 20/25 pounds after the surgery (actually after I got off my crutches - they actually kept me a bit fit LOL) that I am struggling to get rid of. I yearn to move and dance - but any percussive movements bring much pain to the ankle - so I am limited in my choices of what to do for now.

I have a wonderful young man though who is an inspiration to me - Eric LeGrand. Eric was a Rutgers football player who had a catastrophic spinal injury almost two years ago. He was paralyzed from the neck down. But - he has a great outlook on life and more and truly believes he will walk again. When I see him fight and carry on and persevere with such a major injury - and with such a positive attitude - I am lifted to reach above my own struggles and motivated to succeed and more.

Its just one day at a time. Keep working, keep focus, STAY POSITIVE. These things can try to beat us down - but we can't let them define us or our lives.

We are more than our OCDs.

Again - hang in there - you've got lots of support here.

 
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Old 08-10-2012, 04:55 AM   #8
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Re: OCD - Nervous

Just thought I would say Hi as I am part of the OCD brigade too. Again I have a similar story to you - had a bad sprain 7 years ago that wasn't treated at the time, followed by open surgery 9 months later, physio, injections, orthopedic inserts... the surgery was only successful in that I had to have the bits of cartilage removed that were floating around in the joint, and I did wind up with a small amount of fibrocartilage. Six years later, Feb 2012, I had a calcaneal osteotomy because my foot was collapsing and more drilling for OCD. And I too have put on a lot of weight due to not being active... it is very hard. I had really hoped that my foot would get better enough to walk myself back to better health, but haven't reached that point yet. Meanwhile in PT among other things I do hydrotherapy and ride a recumbent bike (I also have back problems, and this is SO much better than an upright bike.) I wish you loads of luck for the surgery.

 
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Old 08-12-2012, 07:21 PM   #9
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Thumbs down Re: OCD - Nervous

Hi,

It has been a while since I responded to all of you.

First and foremost, THANK YOU. I appreciate the supportive comments and the suggestions.

My husband and I were notified that I have a small lesion in my talocrural joint. The doctor doesn't seem to think the 5mm lesion should be causing me much trouble. In addition, my subtalar joint has suffered from degenerative changes and has become severely arthritic. Other issues - a ganglion near the subtalar joint and the beginning of plantar fasciaitis.

I had a cortisone injection into the subtalar joint to try and control the swelling and I was prescribed 15 mg Mobic daily for the arthritis pain. We are trying this first - both as an additional diagnostic measure and because the surgical option isn't a very good one.

Essentially, the subtalar joint will require a fusion because the damage is too extensive. The desire is to avoid that, if possible. We are trying.

Unfortunately, merely a week after the injection, and after the purchase of "more supportive shoes", my ankle is still swelling up. The swelling isn't as severe as before but the pain has actually intensified. Coming upon two weeks after the injection, I am feeling a bit low because I had hoped for a better result.

I have an appointment on the 24th of August for a second opinion. I have heard some people get better results with a second shot. Although, I have also heard the shots will work only for so long.

There really has been no talk about addressing the lesion. I am so confused - why should my ankle still be swelling both on the inside and outside of the ankle joint? Am I going to live with this forever? How many doctors should I thank who ignored me when I mentioned the swelling in my ankle that went untreated?

Recumbent bike and swimming have been suggested by the doctor, as well. I actually just ordered a new swim suit.

Again, thank you for the support. I am hoping that there is a more optimistic picture of a solution from my second opinion appointment at Kerlan-Jobe.

-BigA'sLady

 
Old 08-12-2012, 08:51 PM   #10
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Re: OCD - Nervous

It sounds to me like the primary cause of your pain may be the arthritis, not the OCD. If that's the case, short of fusion, your only real options may be the various injections and anti-inflammatory medications.

My February MRI showed a ganglion cyst, but then it was gone just a few months later, on its own, which is not uncommon.

 
Old 08-16-2012, 06:46 PM   #11
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Re: OCD - Nervous

Hi pclare -

Thanks. The doctor seems to think that is the case. He gave me the cortisone injection to serve as a diagnostic tool, as well. As I may have mentioned earlier, I am taking 15 mg of Mobid daily to help with the pain and swelling.

I have swelling on the interior of my ankle as well as the exterior of my ankle. My heel feels dull pain for approx 3000 steps then my foot begins to feel heavier and more painful with every step.

I do agree, from what I have read and what I experience, the arthritis seems to be the biggest issue right now.

I am, however, concerned about the talocrural joint and the ocd that is there. I am concerned because the arthritis in my subtalar joint is from the same injury.

In the short amount of time I have been on this board, I have read about people who have needed repeated surgeries to "fix" their ankle. I wanted to give the injections a try but I am so tired of the pain and the change to my every day life. I can't stand to cook or do dishes without the onset of severe pain accompanied by swelling.

Having read so much, I realize that what I have going on compared to what others have experienced is probably minimal.

Couple the injury with the fact that I was born with a club foot and I think it created a "perfect storm". I was lucky enough to have my foot casted as a child so my foot & ankle specialist didn't even "see" that until I told him. He said it appears it was tended to very well.

My husband, parents and I really think it is time to consider the fusion. I wanted to wait it out but I am experiencing more pain and sometimes more severe pain since the shot. Odd, right?

I don't know how long I will have to be out of work. Unfortunately, it is my right foot. I just want to get this done so I can resume a more normal life - like before.

Again, thank you to all of you who have been so kind to respond. I wish you all well with your respective injuries and/or remedies!

696

 
Old 08-16-2012, 08:11 PM   #12
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Re: OCD - Nervous

Quote:
Originally Posted by BigAsLady View Post
Having read so much, I realize that what I have going on compared to what others have experienced is probably minimal.
Don't assume that your pain or injury is any less than anyone else's. If anything, yours may very well be worse, because the pain from arthritis will just stop you in your tracks and change your life.

Most of the people who are going through these repeated surgeries (including me) may have at least a few pain-free years in between them, whereas you have not had that luxury -- yet here you are, plodding along and continuing to look for answers. I applaud you.

Never let yourself think of it as "just arthritis" -- simply because the word is so familiar. Arthritis in a weight-bearing joint can be (literally) unbearable -- you can no longer bear the pain, and your joint can no longer bear the weight.

I was thrilled (and my surgeon was shocked) when he discovered that seven years post-OATS my lesion was larger, but still pretty well contained, and that the rest of the ankle was remarkably healthy. Even with all the problems I have now, I know that the REAL problems will begin if/when the joint becomes arthritic.

I rejected fusion as a potential option a long time ago, but severe arthritis is the one instance in which I agree that it could be necessary. It may be worth looking into, if it will give you a pain-free future. Don't give up!

 
Old 09-22-2012, 09:13 PM   #13
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Re: OCD - Nervous

Update -

Had my first injection for the subtalar joint arthritis on 7/30/12 - it helped to a small degree but I have still experienced considerable pain.

I have been in PT for 4 weeks - twice a week - and have regained some strength in certain areas of my foot but I have not had much luck with the range of motion, stiffness, or swelling.

Yesterday, I had a second joint injection - this time a fluoroscopic guided joint injection - under xray. My doctor feels nearly certain that my pain is coming from the subtalar joint arthritis but wanted me to keep copious notes hourly regarding the pain levels and condition of my foot and joint.

The radiologist had difficulty getting the dye into the joint so he could properly guide the injection. He said he kept hitting bone spurs, so he finally had to remove the needle, give me more pain injection and then he routed around in the joint area until he could get into the joint.

Subsequent to the shot, I could hardly walk because my foot was so swollen - both from the regular swelling and from the medication/dye injections. Thankfully, about an hour later, I felt great aside from the area of the joint injection.

My orthopod had them use lidocaine with epinephrine to prolong the numbing agent in the ankle.

I can feel some discomfort in the plantar fascia tonight but the ankle is still feeling great - just stiff/tight.

Dr said he would consider debriding the area but that he feels that the debridement would not take care of the pain if it is, in fact, the subtalar joint that is causing my problems. He also mentioned that he feels like I have chronic achilles tendonitis, as well. If he does surgery, he mentioned that he will lengthen the achilles tendon when he is in there.

In any event, I am currently feeling pretty okay except for a couple areas that are outside the joint. Thankfully, my foot doesn't feel like it is going to break when I am on uneven pavement, etc.

Last edited by BigAsLady; 09-22-2012 at 09:17 PM.

 
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Old 10-14-2012, 07:54 AM   #14
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Re: OCD - Nervous

has anyone tried a drug called synvisc in the joint. I was told by my Dr that people get relief from that. Not covered for the ankle only for the knee.

I had surgery in my ankle in April and curious to know if anyone else is aware of this drug. It has some great reports for the knee.

 
Old 10-14-2012, 10:11 AM   #15
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Re: OCD - Nervous

It was suggested as an option by one of the doctors I saw. It hasn't had much study in other joints and is strictly approved for the knee. Insurrance won't cover it. I am not sure how much I would want to be a guinea pig with my foot.

I will be having surgery before the end of the year.

 
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