Author Topic: Concerned  (Read 9827 times)

Offline SCSankle

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Re: Concerned
« Reply #15 on: August 11, 2016, 10:42:15 PM »
Thanks for asking, Sarah. Like most everybody on here, I've had a slow go of this recovery thing. Felt great at the 7 month point. Months 8 and 9 have been a bit of a set back. I'm finally coming out of that, I think. My best guess is that I aggravated the joint area standing on tip toe on that one leg. Whatever the heck I did I ended up back in the boot a couple different times, blew through my prescription of Mobic, and really scaled back what little activity I'd been doing. I started back to PT this week and am feeling pretty good again. I have my first post-op MRI tomorrow so will see how well the joint has filled in. I keep reminding myself to just give it time. And when I think back to those first few months post op I'm way better now, so am continuing to make progress. It's just so slow at times it's easy to get discouraged.

I hope that you are feeling much better soon! You're younger than me (47 on Monday!) so you're sure to heal more quickly than I am, but each case is unique so trust your body and your instincts and keep taking to your doctors to make sure you're doing all you can to get better.

Offline sazzakablazza

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Re: Concerned
« Reply #16 on: August 25, 2016, 04:43:10 AM »
So I emailed my consultant's secretary 2 1/2 weeks ago with all of my concerns.  I finally received a response this morning;

   Mr Robinson did give the following advice to your first email yesterday which is:

   You are not to worry and everything is fine and that he would like to see you first before arranging an MRI Scan and x-ray.

I just feel like he has dismissed what I have said and how I am feeling. Everything is definitely not "fine".

I sent a further email yesterday - "since last Friday afternoon the top of my ankle keeps locking/catching, constantly feeling like it needs to be cracked.  The ankle has always been quite clicky since the operation but this seems to have gotten worse over the past few days.  Also, the swelling has increased – it never completely went down but it is definitely more puffy than before Friday".  The secretary said she wont see the consultant until the middle of next week now, but if it gets worse go to A & E. Very helpful!

I'm so fed up guys!

Offline SCSankle

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Re: Concerned
« Reply #17 on: September 20, 2016, 10:08:13 AM »
I'm hoping that by now you've made some progress. I just wanted to let you know that I was thinking about you and sending healing vibes your way! It can be a very frustrating and lonely experience being in pain for what others think is too long a time. "Are you still in that brace??"

Don't give up, you'll get better with time and good medical care and physical therapy. I had a low point in August (at 9 months post op) where I quite embarrassingly broke down and cried in the doctors office. Pain in my outer metatarsals and still limping to protect the ankle. I had just had it. Now I've gotten back into PT with a much better therapist than the one I went to in February and it is getting so much better. So keep bugging the doctors for answers -- if you don't like what you're hearing, by all means talk to someone else. All doctors and therapists are clearly not the same. One thing that makes me nervous is to hear you say catching/locking. When I see my surgeon he always wants to make sure that mine is not doing that. Each time he says something like, "A little pain is ok, but is it catching or locking at all? No? Good."
I don't know what he would say or do if I said yes though...so I hope you've gotten some solid answers and are feeling better.

So good luck! Let us know how you're doing.

Offline sazzakablazza

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Re: Concerned
« Reply #18 on: September 21, 2016, 07:37:05 AM »
Hi again SCSankle,

Catching/locking still happening all the time. I see my surgeon next Monday so hoping for some good answers then!

Thank you,

Sarah

Offline sazzakablazza

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Re: Concerned
« Reply #19 on: September 28, 2016, 09:45:30 AM »
Saw the Consultant on Monday - absolutely useless. Dismissed all my concerns, wont give me an MRI for at least another 3 months. I sat waiting for him for over an hour and he spoke to me for less than 2 minutes. Felt like he didn't care at all.

So I have been to see a Dr on base and I am getting a second opinion, with hopefully another MRI through the RAF.

Will keep you all updated.

Offline sazzakablazza

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Re: Concerned
« Reply #20 on: October 11, 2016, 04:18:50 AM »
Follow up MRI booked for 19 Oct, finally feel like I'm getting somewhere!

Offline cshires

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Re: Concerned
« Reply #21 on: October 11, 2016, 07:27:20 AM »
That's good news! I have one next week as well, 9 months post op. Still having some issues that I'd hope would have resolved by now. Keep us posted.

Offline sazzakablazza

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Re: Concerned
« Reply #22 on: February 20, 2017, 10:59:34 AM »
Still on crutches - 10 months post surgery. At the end of my tether.  :(

The Military Doctors are injecting my ankle with Ostenil on 22 March.  Does anyone know anything about it, or have had it?

2 weeks following the injection I am then going on an intensive rehab course at Headley Court.  Then if that doesn't help I will be referred to see a Lt Col Orthopaedic surgeon at Frimley Park Hospital in Surrey for possibly more surgery.

I just feel so lost!

Offline ocdnetadmin

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Re: Concerned
« Reply #23 on: February 21, 2017, 01:46:21 PM »
Crutches 10 months post surgery?

That does not sound good at all. Either the surgery went wrong or your ankle was already in really bad condition.

What is the next surgery option?

Offline sazzakablazza

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Re: Concerned
« Reply #24 on: February 22, 2017, 07:59:43 AM »
Yep, 10 months. I'm on a strong dose of Lyrica (Pregabalin) but nothing seems to help much at all.

I requested my medical notes and there was mention of more microfracture, which I do not want as it obviously hasn't worked this time, or OATS. There was also mention of carbon fibre foot orthoses???

Offline ocdnetadmin

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Re: Concerned
« Reply #25 on: February 23, 2017, 03:03:31 PM »
Not trying to alarm you. Definitely try to keep a clear head.

But...

From what you've described, your ankle is in an extremely precarious situation. If I were you I'd get second, third, 4th opinions before I went ahead with any surgery or any physical activity that could aggravate your ankle condition including PT, injections, etc.

It sounds bad, really bad. Definitely don't leave your ankle future up to some doctor who clearly either doesn't care or doesn't have time to devote to helping you

Offline dave1234

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Re: Concerned
« Reply #26 on: February 23, 2017, 05:23:27 PM »
I think Alan is spot on here.  Time for a reset on your approach.  Based on the symptoms/pain you describe, it sounds like your OCD is still there, possibly worse than it was pre-surgery. 

A few thoughts as follows (quick disclaimer - this is based on the experience I went through, and is not necessarily all going to apply for you; I think you'll be able to judge what might be relevant for you, and/or also give you some ideas on things to discuss with your doctor on your next visit). 

1. I'd be surprised if the Ostenil injection improves anything.  Ostenil is a brand name for hyaluronic acid - think of this as a lubricant that is injected into your joint to supplement the synovial fluid (your body's natural joint fluid).  This is a treatment that is most commonly used to treat symptoms of osteoarthritis - not OCDs.  I got an injection of Synvisc (another brand name for hyaluronic acid) and it did nothing for my OCD.  Your problem most likely that your OCD is still present, not general joint deterioration like osteoarthritis (this would be unusual for someone your age). 

2. Get a copy (or better still, multiple copies) of the MRI images and radiologist report from the facility that did your MRI.  The facility should be able to give you a CD (or several) with the images on there.  Bring these MRI images to other surgeons like Alan suggests - to get a 2nd, 3rd, 4th opinion.  This will help speed up the process, instead of these surgeons ordering their own MRI images. 

3. For your next opinion(s), it really pays to see a surgeon who has a lot of experience with OCDs.  This is probably the hardest part to figure out - which surgeon to go to, and if you'll be able to get to see them (based on their schedule, your health care coverage/insurance, etc.).  In the US there are a number of surgeons people on this forum have recommended.  Unfortunately I don't know much about surgeons in the UK - possible others on this forum do. 

4. Between now and when you get your next opinion(s), the most important thing is to do no further damage to your ankle.  Use pain to be your guide here - if it hurts a lot, you are likely doing more damage.  If you have one, wear a rigid walking boot for getting around - this may even allow you to walk without crutches.  But if you need to use the crutches also, use them too.  I found that Blesdoe makes a rigid boot that's easy to walk in (http://www.bledsoebrace.com/products/lo-top-boot/).  I'm sure you can order online from somewhere in the UK.  Until you get you next opinion(s), I'd be very cautions about doing any physical therapy or rehab.  If your OCD is still present, rehab will likely not help.

5. When you mention a carbon fiber orthoses, there are a few things that your doctor may have been thinking of.  Most likely, insoles that tilt your foot in a direction so as to alleviate the pressure on your OCD.  These can be helpful.  I wear them every day.

6. If more surgery is required, its possible that microfracture by a skilled, knowledgeable surgeon will work.  Also ask about denovo, and biocartilage.  OATS is an older technique that is still used, however usually only if the several other of the former techniques have not worked. 

I hope this helps. Best of luck with things! 

Dave




Offline sazzakablazza

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Re: Concerned
« Reply #27 on: February 24, 2017, 05:24:42 AM »
Thank you for your comments  :)

I will keep you both updated on my progress.


Offline SCSankle

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Re: Concerned
« Reply #28 on: March 01, 2017, 07:36:02 PM »
Good luck Sarah. I'm so sorry to read your latest posts.
The advice that Alan and Dave have given sounds good.
I don't have anything to add but to let you know that I'm thinking about you and sending good thoughts your way. Everyone on this forum is pulling for you.  There's got to be something that can help your ankle improve. Keep us posted.

Take care,
Sharon

Offline sazzakablazza

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Re: Concerned
« Reply #29 on: March 09, 2017, 11:48:52 AM »
Good luck Sarah. I'm so sorry to read your latest posts.
The advice that Alan and Dave have given sounds good.
I don't have anything to add but to let you know that I'm thinking about you and sending good thoughts your way. Everyone on this forum is pulling for you.  There's got to be something that can help your ankle improve. Keep us posted.

Take care,
Sharon

Thank you very much Sharon! x