What a nightmare

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tb48
Regular Member


Date Joined Apr 2009
Total Posts : 23
   Posted 10/20/2009 10:20 AM (GMT -7)   
Hi all, I've posted before but I just need to vent a little.
I have an OCD (osteochondral defect) of the ankle talus. Was diagnosed a year and half ago and have been in pain since. Constant aching pain on the outside of ankle but the OCD is on the inside. It was an 11mm by 5mm deep crater.
Has 2 arthoscopic surgeries in the past year for a total of 5 rods put into my ankle.
The first surgery completely missed the OCD.
The second one they got to it and pulled a loose piece of bone out.
I also had another MRI in May because I've been insisting since day one my pain is lateral.
First doc says you shouldn't have pain there, that's not where the lesion is.
The second doc says he doesn't think the pain would radiate from the lesion to the where my pain is.
The lateral MRI came back as mild peroneal tendonosis which is fraying of the tendons.
On that visit he almost laughs and says "it's mild it's not even severe". Yeah well my pain is so thanks for caring.
Anyway, my last visit to the ankle dr. was last month (6 months post op). He took a plain xray and said it looks like it's healing. I told him I still have lateral pain. He looked at me like he doesn't believe me and showed me the door. I practically cried on the way home because my ankle's killing me and he just let's me go.
I've done so much research over the past year on these OCD's of the ankle and half get missed because they don't show up well on plain xrays. Other people on other forums have had multiple arthoscopies without any success, etc; I was shocked that he didn't at least make a final assessment with an MRI. The first ortho did and that's how it I knew it was still there.
I've been with a PM dr. since last May so it's not like I ever asked the ortho for anything which is why I don't understand him cutting me loose. I just want my ankle pain resolved no matter what it takes. I've seriously thought of just having my foot taken off. It's not worth all this crap.
I've had my PCP for about 5 years now but he doesn't like to discuss my ankle or give any opinions on it.
My PM has been very good and listens but I get the feeling now that even the PM isn't believing me anymore or just because the ankle doc says it healing based on the plain xray then I shouldn't have pain anymore. I feel like I'm at a dead end now.
My problem has always been that I don't know if it was ever the OCD that's been causing the pain but if not, I don't know what is. And I can't force them to look at everything.
I had a surgery over 20 years ago on the same leg as the ankle pain. It was a 7 inch cut on each side of my calf that's left me with a shortened achilles tendon and poor ROM of the ankle for over 20 years now. In a sitting position my heel can't touch the floor like my right foot can. Off by about 2 inches. Also have a history of calf fasiculations (muscle twitching) for over 20 years and found out back then that was a result of a compressed SRI nerve in my spine that goes to the affected leg/foot. Also have L4/L5 hernaited and degenerative disc since 20 years ago.
I have such a complex history of this leg which is what leads me to believe everything in my foot is falling apart as a result. Maybe this is why an ortho doesn't want to get too involved with me, I don't know.
But I can't make anyone believe me or look further. So frustrating.
I wish there were a real doctor like Dr. House that could just diagnose. All I want right now is real answers.
Finally, on my last 2 visits to my PM, I have to always ask for my monthly refill which I'm very uncomfortable having to ask. Always have been. It was either ask or suffer with the pain.
Because I have to ask and am nervous by nature, I said last month that I've been taking them for year now (oxycodone 5/325 2 per day), if I'm no longer going to be able to manage the pain, can you teach me how to wean off them. The PM says, I'll give you your refill but only take one on a sunny day. Problem is with my pain, I never have a sunny day even when the sun is out.
I've always taken them as prescribed, never miss any appts and never call outside of my normally scheduled appts.
Have had my PCP for about 5 years now and he's wonderful but he doesn't seem to want to get involved with my ankle either and I don't push it.
So I have a few days left before my next PM appt and I'm going to start to wean off. Been in too much pain to start weaning before now and still am but what choice have I got?
Obviously looks to me like they don't want to continue to manage my pain.
Going to take one a day for a few days, then half for a few, then a quarter for a few.
I hope that's enough to not have any bad effects.
I'm scared but I'd be willing to suffer in silence for a while if that's the only way people are going to take me seriously.
The last time I went 4 days without meds because I was in between orthopedics, I couldn't sleep for the entire 4 days cause of severe restless legs and arms. Was lucky to get 2 hours sleep a night.
I've also had 2 sets of nerve block shots. One back in May that did nothing for the pain and another a month ago which made the pain worse.
I can't actually tell them it made it worse because they'll get offended and I'll really be screwed.
So I give up, had enough, I'll suffer with it for while. Maybe then I'll be taken seriously.
Sorry this is a book but I just needed to get it all off my chest.
Thanks

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 10/20/2009 10:34 AM (GMT -7)   
If you haven't already done so, I'd suggest getting a second opinion from another orthopedist.
Judy
Co-moderator, Ulcerative Colitis
 
~~~~~~Diagnosed in 2001, finally in remission since March 2006............Mesalamine is not my friend and steroids are from the devil.............Remicade has been my miracle drug.~~~~~~


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 10/20/2009 11:11 AM (GMT -7)   
I am sorry that you are going through this much pain. When I was reading through your post especially the part about the surgery 20 years ago that left you with a shortened tendon and poor ROM I had a thought. It made me think that you may be dealing with terrible muscle imbalances brought on by that surgery and the aftermath. Basically it means that the wrong muscles are doing the bulk of the work to compensate for the injuries to the muscles that should be doing the work. Some get too tight and some get too loose. In your case it just makes sense that you would have this because of that shortened tendon. Our body is designed to work properly a certain way and when that gets screwed up severe pain can occur. I know this from personal experience. I had surgery 4 times on the same knee in about 17 months which totally caused havoc in my opposite hip and low back from the muscles compensating. The biggest problem with this type of issue is that it does not show up on any scans. All my scans came out pristine saying that nothing was wrong but I was having severe pain and decreased function. My ortho was the first who mentioned the muscle imbalance/compensation idea but the physical therapists he sent me to thought they knew better then he did and blew that idea off. Very aggravating. Finally my ortho sent me to see a chiropractor who is specially trained in physical rehab. after all those years the chiro was the first one who agreed with the muscle imbalance idea and he was able to help me greatly. Not every chiro has the training so if you decided to investigate this type of therapy you probably want to find a specialist who is trained in therapies like active release technique (www.activerelease.com). I think a lot of doctors have a really hard time dealing with issues that don't show up on any scan or test so things do get missed. It is unfortunate. Don't ever give up though. It may never be perfect but I really think with the proper help things can improve. Good luck. Lisa
If I can laugh at it, I can live with it.


tb48
Regular Member


Date Joined Apr 2009
Total Posts : 23
   Posted 10/20/2009 1:34 PM (GMT -7)   
Thanks for just reading my story!
 
judy2 - I want to get another opinion but my PM says no. Just says "that's what I'm here for".
 
geckogirl - this is exactly the point I've been trying to make all along but because only the OCD shows up no one will look or listen.
 
I don't really plan to give up, in too much pain to do that, just feeling at wits end right now.
Thanks again!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/20/2009 3:17 PM (GMT -7)   
Do you need a referral for a second opinion, look into it and if not go for it and make sure to
ask about contrast mri's or contrast ct's as they show more than the others...I would
also say try getting another pm doctor, has to be someone who will listen and give you the respect you
deserve as a human being...these doctors should be listening to you, take someone with you
to this next appointment maybe, I bring my husband to most of my appointments and he
will speak up and ask things I might forget....just my 2 cents worth of advise..
Hope you can get a low pain day..
soft hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
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tb48
Regular Member


Date Joined Apr 2009
Total Posts : 23
   Posted 10/20/2009 7:12 PM (GMT -7)   
Chartreux, thanks.
Yes, I would need a refferal. I just don't know if I should see another ortho or maybe a podiatrist this time.
In the past year, prior to my final xray I've had 3 MRI's and 2 CT's, all showed the defect well.
That's why I'm shocked he only did a plain xray then cut me loose.
But even then, my pain isn't where the defect is, never was so I have no idea what to do next.
I've given everyone my complete history and how I think it's related to my issues for over 20 years now and I repeat that over and over but I get nowhere.
 

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 10/20/2009 7:42 PM (GMT -7)   
Why don't you go see both.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

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