I've had D. nodules RH for decades, (born in 1945) then took Glucosamine/Condroitin for arthritis about 5 yrs ago, and that coincided with an aggressive startup of D in the LH. This quickly surpassed the RH. I tried some laser therapy (recorded here in 2009) which little success. Now I have about 90 degree contraction in my little finger LH and the RH is starting to catch up too. I'm a musician (keys) and do a lot of woodwork so of course this condition is quite challenging .. as it is to all of us who have it. I have also developed a painful 'frozen shoulder' condition on my left side that has made sleeping difficult in the last few months.
I've been asking my GP for a referral to Dr. Binhammer (Toronto) for quite a while and he finally agreed that it was time. When I received the referral acknowledgement from Sunnybrook (his hosp), it said Dr. B. had a waiting list of between 6mths to a year! I knew from this forum that Dr. B. was the guy in my area for N/A, (only 2 cities in Canada listed) but it was quite a setback to find such a long wait time before I could even SEE him.
I did send him an email with a hand picture (incld here) and he was good enough to reply and say that from the pic, it would seem I was a good candidate for N/A.
I then tried the private clinic in Vancouver, (Cambie Ctr) which also said I would be a candidate for N/A consultation, (from the same pic), and this seemed to be available anytime, but the cost would be $1900/hand plus $500 for the consultation. The N/A procedure is actually covered by the medical insurance in Canada, if done in a regular hospital, but not at this clinic.
Then I tried Dr. Boyle, also in Vancouver (from the list here), and he looked at the same picture of my finger and suggested that I would probably NOT be a good candidate for N/A and so it might be a waste of time to come out there. I have called the office and sent him a letter to ask WHY he thinks this .. just asking for a helpful explanation, but have had no response.
From there I had a referral to a Dr. Morhart in Edmonton, Alberta, who seems to have good references and was recommended by the office in Vancouver. I contacted him and he also thinks I would be a candidate for N/A and he's booked me for a consultation in Jan/11 and possible surgery next day .. on BOTH hands! It seems that Vancouver is less busy than Toronto, and Edmonton is less busy than Vancouver. But Edmonton is not really on the map for N/A so far.
I thought I'd put a post up here as this site has been very helpful to me and I thought that there may be other people in Canada who might be interested in options in the cold north! Also as Dr. Morhart is not yet on your list of doctors in Canada so if it works out, perhaps he might be a good addition. If anyone has had any experience with Dr. M, I would like to hear about it.
And finally, I have wondered about starting up a small group of Dup people if there are any in Toronto that would be interested in getting together to talk. I have never met anyone else in person who has this (except my father!), but I know that there are many people who have it. I have hosted a few discussion groups in the past and found them very helpful. So if there is anyone in the Toronto area that would like to get in touch and talk about coping with Dup and perhaps participating in a small group, please feel free to send me an email. I would welcome the chance to talk about it in person and toss around ideas with others who have the same condition. We may even be able to do a little 'lobbying' if we can see ways to help with the process or distribute useful information. Also we may be able to gather useful info about travel options, costs, treatments in other locations that would be helpful to other people in this area.
After almost a year of trying to see a specialist, and a great health system that would cover all the costs of a visit and the N/A, I have not been able to see a single surgeon.
I have had replies from them directly in some cases, while the nearby Toronto office of Dr. Binhammer has completely ignored me and will not communicate with patients at all until they rise to the top of their waiting list and are ready to be invited for a visit. They will not even give any indication of when this might happen other than repeating that their waiting list is from 6mths to a year. This is in spite of a direct request from my GP that my situation was urgent. I should mention that Dr. Binhammer himself DID reply to my email inquiry and even offered an unofficial opinion on my hand picture, but it seems there is no getting around his office which controls all communication (or lack of it) about bookings and appointments.
There are only a few doctors in Canada who do the N/A and they are all overwhelmed with work, apparently. All of the offices that I contacted were more responsive than Binhammer's office at Sunnybrook Hospital. However none of them do N/A exclusively, so it must be a general overloading of other surgeries and duties that is the problem. Sometimes the surgeon himself took the time to exchange an email or two with me.
During the past year, my L. hand has gone from being able to go flat on a table to a 90 degree contraction of the little finger. I have given up trying to play much serious keyboard music now but find I can still play the recorder which doesn't use the little finger of the LH.
I have done my best to cover all the bases in Canada and did manage to get an appointment in January with Dr. Morhart in Edmonton, Alberta. He and his office were far more approachable than the office of Dr. B. in Toronto (of course). However, Dr. Morhart only does surgery once a week and so would have to do both my hands in a single day, which is not recommended.
In my searching I kept coming across Dr. Eaton's name who was the pioneer of N/A in North America (N/A in NA). He has devoted his whole practice to this and set up a clinic in Florida which is dedicated to this procedure. They were also very responsive when I contacted them. Many of the surgeons in Canada have taken a training session with Dr. Eaton (including Dr. Morhart). They were also able to offer me an appointment in January, even earlier than the Edmonton booking. And I could have each hand done on consecutive days, as people seem to recommend.
So I decided to choose this option. It is sooner, Dr. Eaton is apparently one of the best, certainly one of the first, and Florida is a lot warmer than Edmonton, Alberta! He's also less expensive than the private clinic I found in Vancouver and charges $600/finger. I realized that I would probably have to pay for everything myself, but if it comes to saving my hands, it's worth it.
But I applied to the Ontario Health Insurance Policy (OHIP) to see if they would cover the costs, anyway. They refused, stating that the clinic in Florida is not 'an approved health facility' and also that the procedure is available in ON and I would not suffer either death or 'irreversible tissue damage' if I waited a year or more for treatment (they should take a look at my hands). They gave me a few more names to try and suggested I ask my GP to contact Binhammers office again. I tried all the other docs and asked my GP to contact Binhammer. The other docs were equally busy and Binhammer's office continued it's policy of non-communication, telling my GP only that I was 'on the waiting list'.
I have appealed the decision of OHIP and they are going to give me a hearing in front of their Appeal Board. This will not happen until AFTER I have the treatment, but they say that's ok, and they may still allow the appeal. I will report on how this goes, in case there is any interest. I'm not very optimistic. Ironically their own definition of a 'licensed health facility' does preclude the Hand Center in Florida which does not do major surgery (doesn't need to). So they will have to overrule their use of this definition to even get to first base for me. However, if they do get past that definition, I feel that the evidence for irreversible tissue damage is there for all to see if I simply present them with my hands.
Thanks to this forum for being a place to host this and all the other related discussions. I suspect many others would agree that there are few places we can go to with our stories and struggles with this disease. I feel I want to talk about my hands and all the things that are happening about them, but probably for most people, it is of little interest, - unless you have the same condition. Hopefully each of us in our small way adds a little piece to the larger discussion that can benefit us all.
jeeves, to help with your appeal, I've read in a number of places that once you have PIP contracture you need correction quickly or the release may not give you a full correction and this would indeed be irreversible, judging by your photo you are way past the point of needing immediate work. I think you have good grounds. Maybe someone can supply some links for you. I know Dr. Eaton could also help. You might review his web site for info as well.
Thanks for those thoughts Dave. Two of the hand surgeons who saw the picture also thought I was not a candidate for N/A, presumably too far gone.
However the good news (in the big picture) is that I have just returned from a 3 day visit to Florida and the office of Dr. Eaton. My thread of N/A in Canada has crossed the border and become N/A in the US.
Dr. Eaton mentioned to me that when he started offering this procedure he had a long lineup of patients and some had extreme conditions and some had been actually lobbying for him to go to France and bring the technique back to the US. And some people had been waiting hopefully for quite a while for this to happen, rather than going for the old hand surgery. So he started out with a kind of trial by fire where he worked on some very difficult advanced cases.
So in the end he had no trouble with my condition and I think that perhaps he was able to proceed where other surgeons might fear to go. And by the time I got there, the finger was several degrees worse than in the picture above - beyond 90 dgs.
I must say that this is not a really fun thing to have done and I have always hated needles, but if it is possible to have some fun with this, then Dr. Eaton is the GoTo guy! He is a wonderful man, highly skilled, humerous, completely unassuming and on a buddy basis immediately. It's almost impossible NOT to enjoy your time with him. He's a great listener as well as, of course, having many stories to tell himself.
He encourages you to talk during the procedure as this requires diverting some mental energy away from what's happening to your hand. This really does work, so I babbled on non-stop during the process and he made a great show of being interested and responding while doing amazing work on my hand. I found it quite surprising that you can really feel the releases as he does them. Sort of like losing a tension you didn't know you had, until it goes away. This part is not painful (although quite dramatic) and you know it is really helping your hand so it feels good (I think!).
This picture was taken right after my LH surgery.
Although my finger is not completely straight (pretty close though), the improvement is huge and there are so many little things that I can do easily again, such as putting on gloves, washing my hands etc. Also my reach on the keyboard has improved to an octave plus 2, (was down to an octave, and I could reach further with my 4th finger before) and now I can actually use the little finger again rather than just aiming it like a stub. The end joint was just wobbling with no control before, but now it is functioning as it used to. The Doc says that it may even get a little better in the next while and I am using a splint to help it along.
This is my hand today, 3 days after the surgery. :
The next day, he did my right hand which was not nearly as far gone as the left, and this also had a very good result.
I noticed in another posting here that someone mentioned a great restaurant in this area, called Moir's Food Shack. Well Barb and I found that it was in walking distance from the place we stayed, La Quinta, and we had a very delicious meal there. I recommend the "Sweet and Spicy". And compared to winter in Toronto, the weather was also great. These were a few days I will not forget.
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