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pre- hand surgeon visit, limited options in Australia. Hoping for some advice.
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06/30/22 15:18
left479 
06/30/22 15:18
left479 
pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

Hi there,

New to the forum, and I have been glancing over some of the posts in the last 6 weeks, and I'm at a bit of a loss of what to do with my situation. This is a long post so my question is in bold at the end regarding careers if you would like to skip ahead.

35 year old male, Type 1 diabetic with some pretty bad control in recent years, history of heavy drinking, just found out it's on my fathers side too, (1 aunty has it) So essentially a perfect storm to get DD, especially this early.

I will try give some context of my situation. August last year, I began to develop pain in my middle finger on left hand when trying to make a fist. fast forward to around March, 3 fingers all contracting, 2 painful lumps in center of hand. fingers are incredibly stiff, feel and look swollen. Hot water gets a bit more flexibility.

order of events:

1.Visited GP xray, ultrasound done, normal ibuprofen/anti-inflammatory suggested and hand therapy
2.hand therapis 10 sessions trying to make a fist, incredibly painful, no improvement
3.GP suggest hand surgeon
4.hand surgeon looks at ultrasound report, advises ultrasound was not done properly, but to book a steroid injection to hopefully stop the fluid found around tendon sheath in Ultrasound
5.Waiting for steroid injection GP also advised to see a Rheumatologist, to rule out underlying conditions
6.Rheumatologis Advised rheumatologist of finger pain/swelling, also began developing shoulder pain-right shoulder, back pain, right arm weakness. rheumatologist requests to do MRI on hand and spine, ultrasound on shoulder, also requests a lot of blood tests for inflammation and rheumatoid arthritis.
7.Results with rheumatologist MRI of hand, and shoulder. Hand: fluid around middle and ring finger noticed, ganglion cyst noticed. Slight bulging disc T8. Ultrasound shoulder: Shoulder bursitis and impingement, Blood tests all negative for inflammation or any type of arthritis
8. Began developing pain in ring finger and pinky these fingers became swollen looking and stiff much like the original middle finger with pain in those fingers when trying to make a fist now too
9.rheumatologist prescribes medication Based on the MRI report and condition of my hand. The assumption is I have Dactylitis(a form of Psoriatic arthritis causing, puffy swollen hands)

Prednisone, Celebrex and lastly a 3 month trial of Sulfasalazine(an anti rheumatoid arthritis medication requiring fortnightly blood tests)..

No effect from Prednisone or Celebrex, began trial of Sulfasalazine. 2 month mark no improvement, and now slowly have my ring finger begin to start curling inward. Continued the last month of this medication and returned to update rheumatologist
10.Rheumatologist. At this point I had began googling more heavily my symptoms, and I began to suspect Dupyutrens. Also developed 2 painful lumps in center of hand. Suggest it's possibly DD to my Rheumatologist, and she still seems strongly unsure, and I suspect she hasn't come across it in her patients as it's not generally a rheumo thing. Medication is stopped and I am asked to do another MRI. to check for DD and the lumps(rheumatologist saying these could be ganglion cysts)
11.MRI shows not ganglion cysts and likely dupyutrens. Rheumatologist says nothing she can do for me, speak to my hand surgeon again..
12. Currently awaiting to see the surgeon again.

Not trying to be overly emotional but this has been the worst year of my life, in pain everyday for almost a year, been to doctors probably at least 20+ times, on light duties at work and feeling useless to the team I work with. Haven't been able to do any sport using my hands, play PC games for the most part, lift anything heavy, with shopping, work, and I live alone.


I am in Australia, the options here are kind of surgery or nothing from what I can see. Xiaflex banned(not an option because we cannot source it). Radiation only done by one practice, which from what I can tell is only available to people as a trial from 2 years ago. I am pretty sure my surgeon will only have surgery as an option, especially based on the contractures. NA might be an option but haven't seen it mentioned too much in Australian surgery websites. I have attached some pictures of my hand for reference

I suppose my question is, have people here had to switch careers because of this? Coming from an intensive job to something more administrative? Did anyone try to stay in a job using their hands, post-surgery and find the contractions just be accelerated to return?

I work fixing photocopiers, lots of pushing/pulling/lifting.

I am at a loss of where my future and career is going to be. Apologies for the long post, and thankyou all for reading.

Edited 06/30/22 15:21

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06/30/22 16:23
spanishbuddha 

Administrator

06/30/22 16:23
spanishbuddha 

Administrator

Re: pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

Hi
Well there are signs in the photo that you have early stages of DD. But it sounds like you may also have other stuff going on with your hands from the presumably quite heavy work use. I'm a bit concerned that you don't have clarity of a diagnosis, hopefully the forthcoming appointment will help. If you do have early stage DD then RT may be a possibility, although the surgeon is unlikely to recommend that and we list some clinics here https://www.dupuytren-online.info/radiotherapy_clinics.html and this thread may be of interest too https://www.dupuytren-online.info/Forum_...er-1_355_1.html.

I have had RT and play tennis, some DIY, garden or yard work etc but usually with gloves. Continuing your job might be possible but it sounds like it is causing other problems with your hands and not just the beginnings of DD, so that is a consideration.

Best wishes SB

06/30/22 16:43
wach 

Administrator

06/30/22 16:43
wach 

Administrator

Re: pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

Hi & welcome to the forum! Your pictures, specifically the palm, might look like Dupuytren's. But I am not sure that this is the root cause of your problems. I myself am suffering also from rheumatoid arthritis (RA) and your swollen hand looks pretty much like some sort of rheuma or arthritis, e.g. Psoriatic Arthritis.

For treating Dupuytren's your contracture is too small for surgery and probably also for needle fasciotomy (= PNF). BTW, there are sevrals doctors/clinics in Australia doing PNF, a minimally invasive treatment for Dupuytren contractures https://www.dupuytren-online.info/NA_lis..._countries.html , also there are several RT clinics with experience in tr4eating Dupuytren's https://www.dupuytren-online.info/radiotherapy_clinics.html . But your prime problem seems to be more on the rheumatic side, at least from what I understand from your post (and I might be completely wrong!).

Because the usual cortisone/MTX treatment of my RA did not work well for me, I have been injected with a TNF blocker (Adalimumab), That works well for me but that doesn't mean that it works for each and everyone.

If I were you, I would not focus on Dupuytren's, although you might suffer from that, too, and it started for me also at the age of 35) but I would try to heal the swollen hands and joints. Maybe you could ask another rheuma specialist for a 2nd opinion?

Wolfgang

07/01/22 03:51
left479 
07/01/22 03:51
left479 
Re: pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

Firstly thankyou both!

Very resourceful with those links. I'm on a work cover case for my hand since August last year. So it is a bit of a grey area if this was work related. I opted to see a rheumatologist privately, during this process given I'm a diabetic and prone to a higher risk of developing immune conditions.

It probably wouldn't hurt for a second opinion from another rheumatologist, The Sulfasalazine is not always effective from a lot of information/reading Rheumo forum posts. It is definitely possible 2 things are happening with my hand still. Assuming I went ahead with surgery, I get the feeling this may not stop the pain around the metacarpal joints, but maybe straighten the ring finger a bit. Obviously I am a patient, not a med student/doctor and hand/tissue issues are very complex. I just want the best outcome.

The MRI report says this:

"there are small foci of ill-defined soft tissue thickening within the subcutaneous fat of the palmar hand overlying the flexor tendons to the middle and ring fingers. these occur at the palmar side of the 4 MCP joints. nodules both measure 5mm diameter and demonstrate enhancement. Nodules extend to the underlying flexor tendon sheath. there is a minor enhancement of the flexor tendon sheath. there is minor indrawing and puckering of the skin overlying the ring finger lesion. Lesions were not clearly seen on the previous MRI(3 months prior).

No cystic lesion is seen in the left hand or fingers to suggest a soft tissue ganglion cyst.

Conclusion: Subcutaneous lesions overlying the flexor tendons to the middle and ring fingers at the level of the MCP joints are suggestive of fibromatosis."

There is no mention of the pinky being effected in the report but when I look at it, it's lumpy and appears swollen. When I run my working right hand fingers over the surface of the left hand pinky and ring + middle finger it's like I'm running my finger over hardened tissue. When I shower, the ring finger(worst finger) takes much longer for the pruney wrinkle effect every has after water absorption, to return to normal, possible nerve/blood flow issues causing that, no idea.

I am seeing my endocrinologist on Wednesday, and will ask if there is any other suggestions regarding potential neuropathy causes etc from high blood sugars. Apart from that, given the links you both shared, I will consider seeking out other options.

Thanks again

07/01/22 06:13
Seph 
07/01/22 06:13
Seph 

Re: pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

Hi; I also live in Australia and have had dupuytrens from an early age (Teenager). 50 years on I still play tennis twice a week and go to the gym most days. Dupuytrens has not limited my activities at all.

Looking at your photographs I agree with the others that you probably would not be able to get surgery or NA at this stage. There are now a number of doctors performing NA in Australia but I doubt they would offer treatment at this stage.

The pain you describe doesn't match my experience with dupuytrens so I also agree that you should probably be looking at other causes. To give you something to compare with I have attached photographs of my 68 year old hands.

Good luck.

Seph

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07/02/22 15:30
left479 
07/02/22 15:30
left479 
Re: pre- hand surgeon visit, limited options in Australia. Hoping for some advice.

thankyou Seph

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radiotherapy   Sulfasalazine   Rheumatologis   consideration   Australia   contractures   fingers   options   arthritis   Rheumatologist   dupuytren-online   inflammation   Dupuytren   administrative   anti-inflammatory   surgeon   subcutaneous   endocrinologist   ultrasound   shoulder