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help pls
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05/11/2014 07:46
l.hartley 
05/11/2014 07:46
l.hartley 
help pls

Hi. I have them all at 71: Peyronie's, Lederhose and awful Dupuytren in both hands including thumb and first & second fingers.
I've had a 'small' op to release small finger on left hAnd and it is horrible post op.
my question is: should I commit suicide now and end the struggle because I will not undergo worse surgery than the 'small' op on 1 finger I just had done = 5 weeks of misery and I think my devoted wife will leave me soon.
Advice pls.
and why do we have this keyboard interface if we have hand problems? i have 1 funger on 1 hand working

05/11/2014 12:03
spanishbuddha 

Administrator

05/11/2014 12:03
spanishbuddha 

Administrator

Re: help pls

Welcome l.hartley

Sorry to hear of your difficulties. There are treatment choices for DD and LD as listed on this website, but no cure, and each treatment has its own pros and cons.

You don't say specifically which treatment you had? Collagenase can take a few weeks and maybe months before swelling goes down, surgery can take six months or so. Everyone reacts differently and for some the recovery is quicker.

Collagenase is now undergoing trial for Peyronies's, so there is some ongoing research into that condition too.

Most of us with various degrees of these conditions end up managing the best to cope and getting on with life. It could be worse.

I think you really need to strike up a good relationship with a hand physician, one who who knows all about the treatments available, and can advise on the best choices to improve quality of life given there is no guarantee of a cure. Same for the feet, and urologist for the penis.

Not sure about your website comment. Can you suggest areas where it can be improved to navigate? Writing can be done by dictation software.

Best wishes

SB

05/11/2014 14:47
l.hartley 
05/11/2014 14:47
l.hartley 
Re: help pls

thank you so much for your support and very kind comments. i find this web site very difficult to navigate so i hope you receive my heart felt thanks. pls tell me if you do receive my reply. and give me instructions on how to work the website. very kind regards and thank you for responding - i no longer feel totally alone.
i won't bore you with my reaction. thank you again for speaking to me.

05/11/2014 15:49
spanishbuddha 

Administrator

05/11/2014 15:49
spanishbuddha 

Administrator

Re: help pls

I wonder which device. PC, MAC, tablet, mobile, you are using and with which browser?

On a PC by using the mouse to hover over the items listed on the dark blue bar at the top of the page, Home, Disease, Treatment, Patients, ... you should get a secondary drop down menu, which you can then click on. The same can be achieved on a MAC or iOS tablet with Safari by just clicking on one of the listed items, for example Treatment.

The forum itself has three main sections, listed on the first page of the forum as Dupuytren, Ledderhose and Other Treatments, but you managed to find Dupuytren OK and create a new thread. (Two threads actually, I deleted one since it was a duplicate).

Perhaps you will get familiar with the site, but if there is something specific that is a problem let me know.

By browsing the forum, you will find lots of experiences similar to yours. But, also some good or heartening experiences too.

Your profile says Australia, where? We do have some Australian users on here too occasionally. They may be able to recommended clinics, doctors, although some are already listed on the Treatment pages.

05/12/2014 03:02
littlepeaks 
05/12/2014 03:02
littlepeaks 
Re: help pls

l.hartley --

Sorry to hear about your Dupuytren's Diathesis (Disease in the three possible areas).

First of all, Xiaflex (injection) is now approved for Peyronie's -- approved in December 2013. I am sorry to hear that you think your wife may leave you. There is a closed group on Facebook that you can join, that had much more intense discussion than this forum. It is just called "Dupuytrens Contracture" and if you send a request to join the group, you will be approved quickly. Think the people in that group have been through just about everything -- the good, the bad, and the ugly. There was one person that his wife left him because of DC, and he is only 50 now.

Second -- if you are considering suicide, you need to get help and support -- from the Suicide Hotline, your friends at church, or medical help. I do not know if you are a Christian or not, but the Lord made you and is keeping you alive for a purpose.

Third -- deep down inside, sounds like you doctor may be a real jerk. You should put some of this pressure that you are feeling on your doctor, and have him come up with a treatment plan for all three conditions. If he won't do that, I'd find another doctor pronto, and report this doctor to whoever oversees the medical profession in your area. Fortunately, I only had Dupuytrens in my hands, and my specialist was very enthusiastic about treating me -- I think he actually enjoys treating people with DC.

Also, you didn't say what country you were from, or what city you are from.

Hope we can help you, or at least point you in the right direction.

05/14/2014 09:22
l.hartley 
05/14/2014 09:22
l.hartley 
Re: help pls

thank you so much for your kind and thoughtful reply. it means a lot to me you replied and has kept my spirits up.

i am resident in perth, western australia. my father & maternal grand father both had DC, but restricted to last two fingers as i recall it. i think my problem is rather worse since i have contractures in thumb and first 2 fingers also in both hands. also 1 repeatedly broken arm which makes arm flexion difficult in my better hand. I am retired emeritus professor of psychology here. that is irrelevant of course!

i have had 1 small operation to provide a bit of release of last two fingers on my better hand to 90 degrees from palm so i can at least wash a bit and wipe my posterior, & poke my eye out!
.
my principal concern is my wife, who is simply wonderful and has been wiping my bottom for weeks, whilst looking after the 50 acre property and house and land. what a woman she is.

i have viewed several web sites and the future ops proposed by surgeon look horrible with 6 months rehab. I find the rehab & pressure on my wife intolerable-at least before my first op i could do something like wash face with better hand, now i can do nothing. how will she feel after major surgery with 6 mo rehab?

I suppose my critical question is: is it worth going for for further ops with unknown rehab time for both hands or call it quits and wait for my end? given dupuytren is progressive will my end be before complete closure of both hands to a fist and useless, or will i go first????

I have christian up bringing/quaker/church of england here, but don't follow it now much. Now i am beginning to question my existence seriously but not questioning god. so i am in need of some answers to humanities existence and mine. so i """may"" go catholic for sustenance. I need to have answers.
but i don't seem to get answers to my questions from anywhere.
The best answer i ever heard was from visiting Philippino who replied "we are here to witness & celebrate god's construction of the universe". that is the most sophisticated, convincing answer i have heard.
______________________________

05/14/2014 13:46
callie 
05/14/2014 13:46
callie 
Re: help pls

Many people seem to suggest that the recovery from Dupuytren's surgery is a totally wasted time. I don't understand that thinking. My recovery took about three months (90 degree, little finger). During that time I carried on with all phases of my life except the minor distraction of full use of the hand. Certainly the intellectual part of life should not be impaired. There certainly are considerably worse diseases and health problems.

05/14/2014 13:53
DaveTS 
05/14/2014 13:53
DaveTS 
Re: help pls

I don't disagree that there are many worse things. However each if us can bear a different weight. What crushes one man (or woman) is nothing to another. All we can offer is compassion. But telling someone a crippling disease is not that bad isn't my style.
Just my $0.02

05/14/2014 15:31
callie 
05/14/2014 15:31
callie 
Re: help pls

Yes, it is all about perspective. But I did not tell "someone a crippling disease is not that bad .... ".

I did say, "There certainly are considerably worse diseases and health problems." I don't feel that Dupuytren's (in almost all cases) should be a life ending event. At the same time, a diagnosis of Dupuytren's is disappointing.

It is interesting that yesterday I golfed in a foursome in which 3 out of four golfers have Dupuytren's. Two have had surgery and one awaiting surgery.

05/14/2014 15:42
DaveTS 
05/14/2014 15:42
DaveTS 
Re: help pls

Not trying to get in a cyber debate. You golf, I ride motorcycles. Sounds like neither of us lets this get in out way. Simply saying each of us owns our Health issues and face them differently. Just as you wouldn't or shouldn't diminish a child's feelings, I simply implied the other fellow has a right to their feelings. Opinions are opinions. Any further discussion by PM please.

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