When have I waited too long? | Dupuytren | Forum for Dupuytren's contracture

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When have I waited too long?
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16.03.21 18:44
BobL 
16.03.21 18:44
BobL 
When have I waited too long?

None of the generally accepted "treatments" for DD are appealing, with NA being perhaps the winner of the "minimally invasive" of the proven approaches. So no wonder I would choose to put off any sort of treatment for as long as possible. Right?

This, then, begs the question: How long is too long to put off doing anything?

I was talking with a doctor's office this morning and the physician's assistant relayed the story of one person who put off treatment until the only viable solution was amputation. Yikes! I'm not sure just how bad it had to be for that to be the only option.

Has anyone seen any articles with guidance on how to know when one should not put treatment off any longer? The physician's assistant I was talking to this morning told me that it is when you can no longer hold your hand flat against a table. Well, I passed that point years ago. I just adapted by using the other hand more for wiping tables or washing cars.

If you search the web for "before and after pictures of needle aponeurotomy" - most of the "before" pictures are as bad or worse than my current situation, and the "after" pictures look fine.

I know, I know, find a good doctor, consult with them, and hope that you've got good insurance.

I was just hoping for some helpful guidelines.

Thank,

BobL

16.03.21 22:34
spanishbuddha 

Administrator

16.03.21 22:34
spanishbuddha 

Administrator

Re: When have I waited too long?

BobL:
None of the generally accepted "treatments" for DD are appealing, with NA being perhaps the winner of the "minimally invasive" of the proven approaches. So no wonder I would choose to put off any sort of treatment for as long as possible. Right?

This, then, begs the question: How long is too long to put off doing anything?

I was talking with a doctor's office this morning and the physician's assistant relayed the story of one person who put off treatment until the only viable solution was amputation. Yikes! I'm not sure just how bad it had to be for that to be the only option.

Has anyone seen any articles with guidance on how to know when one should not put treatment off any longer? The physician's assistant I was talking to this morning told me that it is when you can no longer hold your hand flat against a table. Well, I passed that point years ago. I just adapted by using the other hand more for wiping tables or washing cars.

If you search the web for "before and after pictures of needle aponeurotomy" - most of the "before" pictures are as bad or worse than my current situation, and the "after" pictures look fine.

I know, I know, find a good doctor, consult with them, and hope that you've got good insurance.

I was just hoping for some helpful guidelines.

Thank,

BobL
Hi Bob

Well I don't agree with your premise in paragraph 1. People have different attitudes to early treatment, or modern western medical treatment for health conditions.

Take RT for early nodule stage of DD. Treat it or wait? There are some clinical guidelines on this site. But some dislike the thought of radiation.

Early contracture? Put up with the inconvenience or seek to get it straightened? My personal view is try NA as soon as the cord is palpable and can be isolated. Out patient procedure, minimal pain, back to work, life back same day or within days. What's not too like, and yet many people, like you too (?) appear not to agree? That's fine by me. Do it again in 2 years if necessary, no problem. If the option was only collagenase I would think carefully.

The difficulty of correcting joint contractures is not limited to DC. It arises in many other health problems. Muscles, tendons, ligaments, the joint capsules themselves undergo permanent changes if left contracted too long. Restoration might include surgery to all of those parts and be only partly successful if at all and require extensive rehabilitation. How long is too long probably depends on, age, conditioning, blood supply, other health aspects.

Some people with DD live with their contractures, it's part of their being, or don't like needles or surgery. That's fine by me too. I personally am not one, and want it fixed, and will not be leaving any DD contractures too long. It just so happens I have a modest finger contracture from youth, (also an amputation), from something else, nothing can be be done, and that shapes my attitude because its a nuisance for me.

I would hope a surgeon would advise how long is too long, but that requires people to get to the doctor's consultation in time. Again this also applies to many other health conditions and not just DD. I've been there too on the other side, ignored something too long, and more by luck escaped the worse consequences. But early stage DD has easy options, IMHO, most of the time for most people.

Best wishes SB

17.03.21 11:46
wach 

Administrator

17.03.21 11:46
wach 

Administrator

Re: When have I waited too long?

Another aspect making advice even more difficult: if a hand surgeon tells you that amputation is the only thing that can be done anymore, another hand surgeon might still be able to operate or do an NA successfully. And a third one might provide a dynamic splint and get the finger straight again, even without surgery https://www.dupuytren-online.info/dupuyt...-splinting.html ,

A hand surgeon, very experienced with NA, told me that my PIP joint of my little finger can't be treated by NA anymore ("too late"). Another hand surgeon tried NA on it and succeeded to half the extension deficit making my finger usuable again. Every patient is different, and so is every doctor.

Wolfgang

17.03.21 16:16
BobL 
17.03.21 16:16
BobL 
Re: When have I waited too long?

Thank you both, SB and Wolfgang,

I appreciate your perspectives - and, especially, that you're willing to share them with me.

SB: Having a doctor do NA every couple of years is not appealing to me for two reasons:
1) When you go in with a needle and start destroying tissue, there must be some potential for accidental collateral damage (nerves, tendons, blood vessels, ... - I'm no doctor). Do you happen know of any actual data on such risks?
2) With today's US healthcare system, it's not free - not even cheap. You can't even call a doctor up and get an estimate of the costs. My best guess right now is a couple hundred dollars for the "consultation" plus maybe a thousand dollars for the actual NA procedure. Are there follow-up appointments too? Not sure. I have a $3500 health insurance deductible and no other healthcare costs (thank goodness), so all of that cost will come out of my wallet.

Also, knowing that I am at high odds of recurrence (nodules showed up in my early forties and are present on both hands and feet), I anticipate that this whole process could become a regular thing. Yuck!

Wolfgang: Your experience shows the importance of finding the "right" doctor. But how do we do that? I see people on these forums trying to get recommendations based on personal experience but only getting web search results. I'd rather find a doctor who does 100 NA's per year than one who does 10 per year. How do you figure that out? I talked with two different doctor's offices yesterday. Perhaps I'll trying calling them back and asking them how many NA procedures they do each year. Do you have any other ideas about finding the right doctor?

Thanks, again, to both of you.

BobL

17.03.21 17:07
Stefan_K. 
17.03.21 17:07
Stefan_K. 

Re: When have I waited too long?

It is sad to keep hearing that everything DD related is so much more complicated and expensive than it ought to be in the USA.

What I can tell you from my "first hand experience" (and the left one, too) is that in my case

- NA in Paris straightened my pinky from about 30° to close to 0 in a matter of minutes. It was painless both during and after the procedure, I could almost fully use my hand immediately with some caution and it was just a remote memory after a couple of weeks. The procedure cost about $100 which was fully covered by my French health insurance.

- A simple splint glove worn at night and radiotherapy have kept that pinky straight for more than five years now after it tried to bend again. RT on nodules in an earlier stage froze or shrunk them. No contracture since. That cost me around $3000 as I had to have it done in Germany, not covered by my insurance, but well worth it to me.

Haven't had anything done for three years now.

Waiting is not always the best strategy. There is no reason to wait with NA once a bent finger gets in your way. You can also try to keep fingers from bending with a night splint once you notice they try to do so. But RT, done at the right moment rather than after you waited to long, can be more effective. The only thing you should put off as long as other options are available is open surgery which comes with pain, wound care, physiotherapy and the risk of new nodules and cords in other parts.

Good luck,

Stef

[58, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

17.03.21 17:26
mikes 
17.03.21 17:26
mikes 
Re: When have I waited too long?

Bob L: Don't know where you reside or your level of travel flexibility, but I highly recommend Dr. Keith Denkler in Larkspur, (SF Bay area), CA who performed an NA on my highly bent (90 degree PIP) small finger back in 2006 with amazing results. Today, that finger is actually better than it was after the procedure (virtually straight), thanks to continued night splinting, following 3 months of physical therapy (strongly recommended by the doctor), following the procedure itself. Fortunately, my insurer paid the $700 fee (at the time) in full, which still left me with travel costs (air, taxi, etc.)

The only downsides were 1. incredibly painful numbing injections preliminary to the NA 2. the inconvenience of several post-procedure practices - e.g. keep hand raised for 24 hours, bandages, "open" skin for some time, time required for physical therapy, day splinting for a period of time, night splinting (my own decision) for several years before gradually eliminating same.

All in all, the hand was 100% "healed" after about 4-6 months but fully functional within a few weeks after the NA. I had the procedure done on a Friday and was back at work the next Monday, just altering my typing a bit for a week or two. I should add that I felt zero pain during the NA procedure itself and zero pain post-procedure.

Unfortunately I now have fingers on the other hand that are somewhat contracted, and like you, am trying to put off having a repeat NA as long as I can "live with" it.

On the one hand, having that procedure was a wise and wonderful thing to do; on the other hand I don't look forward to having to repeat it.

Good luck!

17.03.21 18:32
Stefan_K. 
17.03.21 18:32
Stefan_K. 

Re: When have I waited too long?

Hi mikes. Don't you think that having the NA done earlier and wearing the night splint would spare you, too, the more drastic measures? Normally there is no need for numbing injections or physical therapy, and no damage the skin with the procedure.

Stef

[58, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

18.03.21 16:52
mikes 
18.03.21 16:52
mikes 
Re: When have I waited too long?

Stefan_K.:
Hi mikes. Don't you think that having the NA done earlier and wearing the night splint would spare you, too, the more drastic measures? Normally there is no need for numbing injections or physical therapy, and no damage the skin with the procedure.

Stef

[58, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

Hi Stephan, With respect to the night splint, I carefully and gradually discontinued use beginning some 3 years or so after the NA over a period of a year or so. Subsequently, all is well. After the procedure, my 90-95 degree contracture was estimated at 15-20 degrees; over time the miracle of night splinting further reduced it to just about zero for all practical purposes. Ecstatic!

As to pre-NA injections, I received about 8-10 and each one hurt more than the last. They did their job though, zero pain during the NA itself. Skin was spit open though and took a while to heal. Dr. Denkler strongly advised post NA PT which I followed as long as insurance would pay - some 2-3 months at 2-3x/week. I found that to be very helpful.

As to getting it done now on the other hand before further progression, I realize that it's the "right thing" to do but being a consummate medical chicken just have not been able to bring myself to do it, at least not as of yet.

20.03.21 15:59
BobL 
20.03.21 15:59
BobL 
Re: When have I waited too long?

Mikes,

Can you elaborate on the sorts of PT that you did after your NA procedure? Just curious.

BobL

20.03.21 18:44
mikes 
20.03.21 18:44
mikes 
Re: When have I waited too long?

Bob L,

I went to a hand therapy specialist. She would perform certain manipulations of the affected hand, have me do certain other exercises, gave me some homework exercises to do, built a series of custom splints for daytime use with changes over time as healing progressed, ditto for night splits, and finished each session with some sort of heat application.

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