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Hi I'm New to Forum and Dupuytren's
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03/16/2012 08:39
anna71 
03/16/2012 08:39
anna71 

Re: Hi I'm New to Forum and Dupuytren's

spanishbuddha:
Anna - was the hand specialist who half-heartedly diagnosed possible Dupuytren's, an experienced hand surgeon who specialises in Dupuytren's surgery? Based on what you've written I'm not convinced about anything other than there's something wrong with your hand.

Hi Spanishbbuddha

When my GP referred me, I was given a choice of 2 hospitals and I called the
NHS appointment line and booked one of them. However at the time I had no
idea what Dupuytren's was, so I didn't know to ask if either of the hospitals had a specialist
in the disease. On the discharge letter he sent to my GP he stated that

"She does indeed have these thin subcutaneous cords which could be the start of Dupuytren's disease. It is an unusual side as Dupuytren's usually develops on the ulnar aspect of the hand but such cords in the first web space are known."

I saw him in October last year and I have to say I came out of the appointment still feeling in limbo
as I had no real diagnosis!

Since then I've had a lump form in my palm below my thumb, which can be quite painful.
I've attached a photo, it's not a great one but maybe you can see if it is Dupuytren's or not.
On the first web space the cord actually ends at the base of my thumb but under the skin.
The lump on my palm started showing after i'd seen the Hand Specialist but I told him at the time
it was really painful if I caught it. Often using cutlery has been painful.

I also started getting a thin cord in the same place on my right hand which I noticed last September.
It's getting longer but hasn't reached the base of my right thumb yet and being right handed I'm hoping it doesn't
grow to fast!

Many thanks
Regards
Anna

Attachment
Hand.jpg Hand.jpg (43x)

Mime-Type: image/jpeg, 30 kB

    03/16/2012 09:14
    spanishbuddha 

    Administrator

    03/16/2012 09:14
    spanishbuddha 

    Administrator

    Re: Hi I'm New to Forum and Dupuytren's

    Hi Anna, I am not a Doctor, and don't think trying to make a diagnosis using photo's via the Internet is a good idea. What to suggest then!? You mention 'hand specialist' - was (s)he a consultant hand surgeon with specialist experience in treating Dupuytrens? In my own case I paid privately for a one hour consultation with such a hand surgeon, who confirmed I had Dupuytrens but also gave me some advice. Not sure if you can or want to do that. Maybe you can ask your GP to get you another referral for a second opinion. My own first lump used to be sore when catching it on door handles and such so there are similarities. Good idea to take a photo, do it regularly with notes and dates so that if it is DD and is progressing to the point of cords and contracture you can show a consultant radiologist or consultant hand surgeon the history and they can start or plan early treatment. Best wishes.

      03/16/2012 09:28
      anna71 
      03/16/2012 09:28
      anna71 

      Re: Hi I'm New to Forum and Dupuytren's

      Hi Spanishbuddha

      I wasn't originally looking for a diagnosis on line but as you said before that you weren't convinced
      of anything other than there was something wrong with my hand I thought a photo may help.

      As I've said I don't know if he was a specialist in Dupuytren's as I had no idea what to ask when I
      booked the appointment. However I am going to leave it and see what happens as I don't like wasting
      my GP's time if the NHS won't do anything until there's a contracture and no I can't afford to go Private!

      Many thanks
      Regards
      Anna

        03/20/2012 15:37
        anna71 
        03/20/2012 15:37
        anna71 

        Re: Hi I'm New to Forum and Dupuytren's

        Hi Flojo

        Just wanted to let you know that you could well be right about the tingling being a nerve. I was playing ball with
        our puppy at the weekend. I had his tennis ball in my right hand and he jumped up to grab it and got the back of my hand in his mouth with his teeth being on either side of my hand (on the edges, if that makes sense) anyway, I got the tingling accross the back of my hand but not the elastic twang feeling. Anyway it seems that he could have caught the nerves. At least that's what I think.

        Thanks again for the help.
        Regards
        Anna

          03/21/2012 06:15
          RichSF 
          03/21/2012 06:15
          RichSF 
          Re: Hi I'm New to Forum and Dupuytren's

          Well Hello....
          I'm new to this too. I'm a 68 year old male... Fine Artist from San Francisco and I found out about mine DD last Feb from my Internist and then went to a hand surgeon who concurred with the diagnosis ... There were no tests only a clinical palpation and observation from both of them.

          They both seem to act very blase about it and said that i should just wait a see what happens and it it gets worse that there are treatments for it but no cure...
          So naturally i freaked out and went to the internet and started to really get anxious when i saw all the pictures images, videos and description!!!!

          So i went on line tonight and logged in and was really surprised to see your entries and to find out that

          MY DD IS EXACTLY WHERE YOURS IS !!!!! ..

          In the web of my left hand with a small cord going from my thumb to the base of my index finger and now a small node is developing under my index finger which seems to be growing.. My research tells me that this is not a usual spot as you stated so i too have my doubts but maybe it's just my denial kicking in.

          But anyway i'll assume that it is DD and.... i want to get the RT because I don't want it to get worse and it seems like the best route to go at this stage on my development.
          It looks like i may have to go to Germany because I'm on Medicare and it doesn't pay for it here and it ends up being cheaper to do it in Hamburg.

          Does anyone out there know how to call Dr S and his clinic and what the address and contact info is???
          If you have been there i'd appreciate knowledge about it

          Also is there anyone out there that has DD in the same thumb area that we do..... and
          is there anyone out there whose DD started in their late 60's???

            03/21/2012 06:51
            wach 

            Administrator

            03/21/2012 06:51
            wach 

            Administrator

            Re: Hi I'm New to Forum and Dupuytren's

            Hi RichSF,

            welcome to our forum! I am trying to answer some of your questions:

            My mother developed her first nodule with 80. She died with 87 and her nodule was still very small. She never did anything about her Dupuytren's (except donating for the Society ...). The older you are the better your chances that Dupuytren's develops very slowly. I personally would only do anything about it if the nodule grows quickly or the cords develops quickly (within months).

            Should you develop contracture eventually you can try something minimal-invasive. Again, the older you are at time of treatment, the longer it takes until the disease comes back (see bottom of http://www.dupuytren-online.info/NA_side_effects.html).

            The address of Seegenschmiedt is on our web site http://www.dupuytren-online.info/radiotherapy_clinics.html (pretty much at the bottom). If you want to save money you might also consider x-ray treatment instead of electron beam. For Dupuytren's x-rays do the same job and the treatment is much cheaper. Travel exepenses would be the same, of course.

            Wolfgang

            RichSF:
            ...
            But anyway i'll assume that it is DD and.... i want to get the RT because I don't want it to get worse and it seems like the best route to go at this stage on my development.
            It looks like i may have to go to Germany because I'm on Medicare and it doesn't pay for it here and it ends up being cheaper to do it in Hamburg.

            Does anyone out there know how to call Dr S and his clinic and what the address and contact info is???
            If you have been there i'd appreciate knowledge about it

            Also is there anyone out there that has DD in the same thumb area that we do..... and
            is there anyone out there whose DD started in their late 60's???


            Edited 03/21/12 08:54

              03/21/2012 14:39
              anna71 
              03/21/2012 14:39
              anna71 

              Re: Hi I'm New to Forum and Dupuytren's

              Hi RichSF

              It's nice to hear from you. It sounds like we're in a very similar situation!!
              It seems we have definitely come to the right place! As you've probably read
              on here there are alot of people with experience and certainly very helpful!
              The only difference with us is that mine is growing towards my thumb and the
              lump I have is growing on my palm below my thumb rather than my index finger.

              Doctors are certainly blase about it, I was told to basically deal with it until it contracts.
              I was given the name of DD by my GP (who was actually quite helpful and thought I'd be
              given help!) so I could research it and like you I freaked as well. It's
              a lot to take in! I certainly couldn't watch any videos!!

              Do you get any pain in your hand? I've had a pretty bad week with it but it seems
              to have calmed down now, although I use an ibuprofen gel if it gets too bad.
              I've also started to wear cycling gloves as it seems to support my thumb a bit.
              It's mainly when I drive or at work when I'm doing alot of typing. It stops me stretching my
              thumb too far from my index finger! Plus it has a bit of padding on the palm side!
              It looks silly but it seems to help!

              Unfortunately I don't have the experience or knowledge of alot of the people on here but
              I'm certainly here if you need someone to talk to!

              As you can probably tell, you only need to ask and someone will kindly try to help!

              Hope to hear from you soon!

              Regards
              Anna

                03/21/2012 15:40
                RichSF 
                03/21/2012 15:40
                RichSF 
                Re: Hi I'm New to Forum and Dupuytren's

                Hi
                Thanx 4 the speedy replies.

                Wolfgang,
                Thanx for the info on recurrence and locations. i found his clinic info and i e mailed Dr S last night to see what i have to do to get treated at his clinic in Hamburg. I haven't heard anything yet. Do you have any idea of how the process works and how long it takes to get admitted? Also is the x ray procedure done there or at another clinic somewhere else?
                By the way, what is your experience with people that have DD in the thumb and index finger (web area) region of the hand?

                Anna,
                At this point there is only a slight pain located at the point where the nodule is developing sometimes i get tingling &/or itching too. It seems to be getting bigger at a rate that feels rapid and that disturbs me. I'm an artist and i worry that it's going to effect my work. It's already effecting my brain!!!
                I live in San Francisco and this friday (mar 23,2012)i'm seeing Dr Gottschalk who is a radiologist here at Univ of CA in SF (UCSF) for an evaluation.. The only thing that i'm worried about (besides my condition) is the cost for the treatment. I'm on medicare and also have a high deductible private health plan with Cigna and it may not be covered....so it may be expensive!!!

                Well whatever it is i have no control of it except i need to do the footwork to deal with the problem

                Thanks for all your support from all of you

                RichSF

                  03/21/2012 16:35
                  wach 

                  Administrator

                  03/21/2012 16:35
                  wach 

                  Administrator

                  Re: Hi I'm New to Forum and Dupuytren's

                  Hi Rich,

                  I don't know how responsive Prof. Seegenschmiedt is. If he hasn't responded after the weekend I would try again assuming that your email got buried under a pile of other mails. The clinic in Hamburg doesn't do x-rays, you would have to see Dr. Herkstroeter in Frankfurt (see e..g. Jonn's story on http://www.dupuytren-online.info/downloa...y_NA_RT_new.pdf).

                  I myself have slight Dupuytren's in my thumb, index and in between. I had it irradiated several years ago and it has become dormant since then. The cords did not go away but are not noticably growing either. My span is a little affected but that's not an issue for me.

                  Wolfgang

                  RichSF:
                  Hi
                  Thanx 4 the speedy replies.

                  Wolfgang,
                  Thanx for the info on recurrence and locations. i found his clinic info and i e mailed Dr S last night to see what i have to do to get treated at his clinic in Hamburg. I haven't heard anything yet. Do you have any idea of how the process works and how long it takes to get admitted? Also is the x ray procedure done there or at another clinic somewhere else?
                  By the way, what is your experience with people that have DD in the thumb and index finger (web area) region of the hand?
                  ...

                    03/22/2012 04:27
                    flojo 
                    03/22/2012 04:27
                    flojo 
                    Re: Hi I'm New to Forum and Dupuytren's

                    Hi RichSF,

                    Dupuytren's first introduced itself (notice I'm not indicating this culprit as any gender), to me when I was 69 years old. At least that's when it started acting up. That was my right hand. I had NA done by Dr. Denkler in Larkspur, Marin County. He's a hand surgeon, knowledgeable and passionate about Dups treatments, one of the first to offer NA in the US instead of surgery, and a great person. If you think you need a second opinion, I recommend him. Dr. Denkler is on staff at UCSFMC.

                    Dr. Gottschalk at UCSFMC is on the list for RT and has been recommended on this site. You might call Dr. Gottschalk's office to see if they will estimate what the charges would be.

                    I had successful radiation done by Scripps in San Diego. Now, 3 years later, Dups showed up in my left hand - started in my thumb but now mostly forefinger with nodules working on up my forefinger. I had 2 consultations with an oncologist at Loma Linda UMC over the past year and we determined that it was a watch and see what happens. I'm almost ready to make the appointment for RT. I now have 3 nodules - one in the palm below the MCP joint of my forefinger, one above the MCP and another farther up just below the PIP joint. It is proving itself to be active. When I tightly spread my hand out, I see whitish areas and cords over much of my palm similar to what happened in my right hand. I will find out what area of my hand the radiologist says to radiate. I'm thinking about 3/4 of my palm may be under siege.

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