I’ve been ruminating about this for a while. When I went for a check up with my hip&knee surgeon in August, I mentioned my painful and deforming feet. He did an x-ray and said that he was referring me to his colleague the foot and ankle surgeon. I know this man is a totally amazing surgeon (he did an TAR for a colleague), with the result that his waiting list is 3-5 years. I figured I might see him sometime after 2016. Not long after I saw my H&K surgeon, though, I got a call, and I have an appointment on December 10th. Gulp.
The PsA damage is in my mid-foot, erosions and arch collapse. It’s painful, and the reason I travel on a scooter. My research suggests that he might consider mme a candidate for a mid-foot fusion. I’m scared, but I also know that my mobility is going downhill fast.
So what do you know about this type of procedure?
What questions should I ask on December 10th?
Does anybody here have relevant first hand experience?
Thanks, team PsA!
Seenie
PS Newbies: I am an example of why you need to fear the disease and not the drugs. I was diagnosed far too late, and then put on a conservative course of treatment. I’d lost my knees, my hips and I had serious foot damage before anybody suggested a biologic. Get the book I recommend in Book Reviews. Highlight the part that says that early and aggressive treatment gives the best outcome.
O Seenie i agree with u 100%. I just had foot surgery...but nothing compared to what you are challenged by. If u want to message me. I will try to help a little will pray for u each and every day. All of u here has pushed me and prodded me to fight this disease head on. I don't know how to thank everyone
Wow Seenie how impressive to get an appointment so soon, I am so happy for you and even more happy that hopefully this specialist can do some thing to help prevent further damage to your feet. Unfortunately I don't know much about foot surgeries as I have only ever been injected with steroids in both feet. How is your other hips doing lately?
Impressive … OK, thanks, but I thought it was kind of worrying. Hip man must’ve had a word with foot man. I don’t like the sound of that, as much as I love my hip man.
My “other” hip (the one that is shot beyond redemption, but pain free) still doesn’t hurt. Touch wood. I’m not in the mood for another THR.
Seenie, I wasn't being disrespectful of your feelings about seeing this specialist literally years earlier than you expected, I was being optimistic for you. I took your OP as a positive thing that you wont have such a long wait after every thing you have been through, that finally they wont make you wait longer than necessary. My apologies if I offended you Seenie said:
Impressive ... OK, thanks, but I thought it was kind of worrying.
Easternlady, I wasn’t offended by your comment. I had just been a bit taken aback at the speed with which the consult came through. Is there more urgency there than I know? Yes, our system works in mysterious ways! Thanks for reminding me of the positive side. And it is very positive.
Sybil, how great to hear a success story. I’ve been reading about the hacking, the plating and the screwing of foot parts and my thoughts were “Eeeek … how can they do that and think that it could possibly be OK?” Hearing your experience really gives me hope. And I know that this surgeon is one of the best. No need for pics, I’m such an old wreck now that another incision won’t make a bit of difference. My biggest worry is the length of time I might be off my foot. Ugh!
Thank you, my friends, for your support. I’ll be sure to let you know how this all plays out!
Seenie I know you must be worried about the hip man talking to the foot man and the speed with which you were scheduled. It may just be a professional courtesy where he said, " I have a patient who is a wonderful gal with an awful disease....." I haven't worked in orthopedics in a long time but chatter between colleagues hasn't changed much. Is there anything you need Seenie? Do you need someone to look after DH and make sure he is fed and watered? Ha ha I bet he can take care of himself! Will you arrange for nursing care for post op? Anything that makes it easier on you and DH is a go in my book! <3
I don't have much input on the foot surgery itself. But if this is the key reason why you are having mobility troubles, it is certainly something to strongly consider. I'll also just say, how nice to be taken seriously.
Hi Seenie, So sorry to hear this about your foot. Sounds like you have a fantastic medical team on your side, that is great. The last 5 years of my work life was in Podiatry and I had the fortunate opportunity to work for one of the best reconstructive podiatric surgeons in the state. He treated and performed surgery on quite a few patients with "collapsed arches" (Charcot). We had patients with this deformity due to diabetes/neuropathy and arthritis. Unfortunately after this surgery our patients were totally non-weight bearing for at least 3-4 weeks in a cast or external fixation (looks like a halo for the foot). Then they progressed to a Cam Walker "walking boot" for another 4-6 weeks and were started on PT. It can be a lengthy recuperation but results are quite good. Now if this isn't what you are facing, scratch all of the above, lol. Seriously, bone surgery especially on the foot is painful, so keep pain meds on board according to directions, follow all instructions and you will be fine. Keep us informed and you have my prayers for all to go well.
Stoney, Alma, Michael, Easternlady, Karen, Sybil … thanks for the big hug. Your kindness has done me good. Yes, you are right, of course, my feet (yes, that’s plural) are what is limiting my mobility and hampering my enjoyment of life. I need to seriously consider this, and think it through before I get into that examination room.
I had this concern about results. I can cope with three months off my feet (although if you want to come and look after me, Michael, yippeeeee!) and my stomach is fine with the thought of plates and screws, and even external fixators, IF (and it’s a big IF) there’s a reasonable chance of gains at the end of the long road. Alma and Sybil, it was good to hear someone experienced say that the outcomes for this type of surgery can be good. I don’t want to go through all of that and just be trading one set of problems for another. I’ve had three joint replacements, and I have faith in that procedure: I have absolutely no fear of joint #4, but this is something completely different. And pain … well, I have a high pain threshold and I’m pretty good and controlling it when I need to. I do what I have to.
I am reminded about how wonderful this board is: to be surrounded by knowledgeable, caring and sharing people is such a gift. Thank you everyone for your thoughts.
Seenie, I am not sure if its appropriate to put this message on this page or if it should be a private message, but I am throwing caution to the wind and putting it here anyway. You were my first friend when I came here just over a year ago and so many times you were able to put my mind at ease or just be a shoulder to lean on or an ear to listen to me. Your friendship means a lot to me and always will. Your vast knowledge and experience with this disease has made you a great moderator but its your kindness and compassion that makes you a wonderful human being.
Like you I have a pretty high threshold for pain and as lovely as that is at times, its also a downfall because damage is being done that we don’t even notice. I have lived with pain in both feet for over 15 years and many of those times it has bought me to my knees. Currently I am off all my PsA medication and have been for this past 6 weeks, not sure when I will be able to resume and I am starting to pay dearly for it. I think that is part reason I was so elated at my earlier post, just knowing someone I admire and respect was getting an appointment much earlier than expected. It felt good to see something good happen to someone who gives so freely of herself. Seenie, I have no doubt that you will educate yourself as much as you possibly can prior to your appointment and you will have the right questions to ask this doctor. You won’t accept anything less of yourself. You are also the type of lady who can communicate with your doctor your feelings on anything he has to say to you. You will weigh out the pros and cons of any suggestion this new doctor has and you will make an informed decision about what is the best road for you to take. If surgery is the right answer for you then its what you will do, if not then I am sure both you and your doctor will come to a mutual agreement on how to proceed with your feet.
You have already been down the road of “doctor knows best” and have the metal to prove it. I know you wont let that happen again, you have come to far and are too knowledgeable about this disease and its ramifications to be otherwise. My thoughts are with you over this next couple weeks while you await your appointment, it will be an emotional time but hopefully it will also be a time of dreams and hopes for your future with improved feet.
These kinds of posts, Seenie, and the wonderful responses you have gotten are what makes this place so great. I have nothing for you but positive thoughts as I've no experience with the kind of surgery you're facing. I did like reading the posts about "the hip man talking to the foot man". That tickled my funny bone, so to speak. I hope you get a good set of options from your consult. Cheers, m'dear!
I’m not sure what kind of a basket I’d be in now if it weren’t for this place and my friends here. Thanks, Jane.
So…just back from the podiatrist, who is trying to help me figure out how to have the least pain while still being on my feet a bit. Orthotics, heel lifts, different insoles … it’s all so complicated. I just want to slip on something cute and colourful! This podiatrist is another step in the right direction for me: he’s new, he works out of my doc’s office, and is covered by our provincial health insurance.
The bad news du jour is that I had new x-rays done. My feet are significantly worse, and the left much worse, than they were in February. Apparently all of the joint space in my left mid foot has been obliterated, and I have large erosions there. Looking at the bright side, I don’t need to wonder whether my foot pain is all in my head. And going to the surgeon is definitely not an overreaction.
Now I’m in a hurry for December 10th to come.
Thanks again for your support and kind words, my friends!
you are so welcome... u have helped me tremendously.. just being able to read your blogs.. to work through my concerns about many different aspects of this disease....
My one and only dream.. is that I could quit work and be able to enjoy life.. while I can still get around.... if this dang Obamacare... would be trustful.. I probably could.. and at this point.. sometimes I dont care if its a higher premium
I do have some good news...we went to pay hospital bill for my surgery.. and because we paid it early.... they actually gave us 10% off.... of our co-payment... my mouth gaped open.. lol....
Now with our out of pocket satisfied.. I told my husband i should ask all my doctors if they need any additional tests done - to order them before Dec 31st... otherwise Jan 1st.... we have to start all over again..
have a good night..
Karen
Seenie said:
Stoney, Alma, Michael, Easternlady, Karen, Sybil ... thanks for the big hug. Your kindness has done me good. Yes, you are right, of course, my feet (yes, that's plural) are what is limiting my mobility and hampering my enjoyment of life. I need to seriously consider this, and think it through before I get into that examination room. I had this concern about results. I can cope with three months off my feet (although if you want to come and look after me, Michael, yippeeeee!) and my stomach is fine with the thought of plates and screws, and even external fixators, IF (and it's a big IF) there's a reasonable chance of gains at the end of the long road. Alma and Sybil, it was good to hear someone experienced say that the outcomes for this type of surgery can be good. I don't want to go through all of that and just be trading one set of problems for another. I've had three joint replacements, and I have faith in that procedure: I have absolutely no fear of joint #4, but this is something completely different. And pain ... well, I have a high pain threshold and I'm pretty good and controlling it when I need to. I do what I have to. I am reminded about how wonderful this board is: to be surrounded by knowledgeable, caring and sharing people is such a gift. Thank you everyone for your thoughts.
Seenie, I hope someone with feet responds! I have experience with joint fusion, but on my hans. Obviously. Doesn’t affect my walking.
Anyway, I had joint fusion on 2 of my DIP joints, and now I’m a fan of joint fusion for areas unsolvable by other means. Removing the joint, and healing back up makes for a strong painless area, instead of an unstable joint that becomes more damaged and in pain.