| Lost password
160 users onlineYou are not loggend in.  Login
Being pushed into surgery
 1
 1
03/13/19 18:52
thetutulady 
03/13/19 18:52
thetutulady 
Being pushed into surgery

This is my second post. My GP and another doctor were certain I have Dupuytren’s. So I have been to two hand surgeons. I asked my GP to send me to an oncologist but she said a hand surgeon could send me for radiology.

First hand surgeon said the lump was benign. It wasn’t Dupuytren’s but that the lump in my hand needed to come out. I asked what it was. He said he wouldn’t know until he cut it out. I decided to get a second opinion.

I went for a second opinion at Kleiner Kutz in Louisville. After examination and questions about family history, that hand surgeon said it was a fibroma and it wasn’t Dupuytren’s. I was surprised when he asked about my ethnicity. He asked if I was Nordic even. From my understanding, that is outdated thinking. Nonetheless, I agreed to surgery because it sounded like a simple operation to remove a random growth in my palm.

The diagnosis was an A1 pulley fibroma. I went as far as scheduling an operation to remove the fibroma only to find out that once he got in there he would snap the cord—which he initially denied existed at the consult.

I asked if there was a cord after all, why not try Xiaflex? He said that this cord, that he initially denied was there, was too advanced for Xiaflex.

I asked what he would do if he opened up my hand and realized this was Dupuytren’s. He said there was not much difference between the two conditions. His operation would more less be the same. I asked why not try radiation first since this barely contracting my finger?

He told me radiation is not an effective treatment for Dupuytren’s and not to do my research on Google.

He seemed to be contradicting his own statements and out of touch with treatment options. (Maybe he is right. How do I know for sure? But he was not convincing.)

I told him we were simply not on the same page and I would not be having surgery as scheduled. I told him I needed to explore any non-surgical options. He said I could go see an oncologist about radiology but did not offer a referral.

I’m pretty frustrated. Thoughts?

03/13/19 19:01
thetutulady 
03/13/19 19:01
thetutulady 
Re: Being pushed into surgery

This is my hand

Attachment
6CECEE7F-2B74-42E7-B878-E96D2DAE9CAC.jpeg 6CECEE7F-2B74-42E7-B878-E96D2DAE9CAC.jpeg (10x)

Mime-Type: image/jpeg, 1.905 kB

03/13/19 20:13
spanishbuddha 

Administrator

03/13/19 20:13
spanishbuddha 

Administrator

Re: Being pushed into surgery

Hi tutulady,

it pains me up say but I think you need a third opinion. From a Dr who specialises in hands, especially DD and is skilled in NA, Xiaflex and surgery, and is aware of the literature on RT.

Your diagnosis seems all over the place, is it DD, or something else. Do you have a functional deficit in the hand? Surgery for what, to remove lump(s), something else, exploration, improve function? Same thing for RT, to treat what?

Based on what you have said so far I would avoid surgery and RT, and get a more informed diagnosis that fills in the gaps.

Best wishes SB

Edited to add, I recalled our previous dialogue when I gave you Dr Hochmans details. Maybe see him for an opinion, although not a surgeon he has seen many patients with DD.

Edited 03/13/19 20:39

03/13/19 20:46
Prof.Seegenschmiedt 
03/13/19 20:46
Prof.Seegenschmiedt 

Careful Evaluation and Imaging is necessary in Early Stage Disease

thetutulady:

Dear "thetutlady",

Thank you for sharing your experience with this forum. For a better visual evaluation a straight photograph of the whole hand palm would be helpful. As far as I can judge from the lateral perspective of your hand the 3rd finger sector of the palm is affected, which is less common in Dupuytren Disease. However, ultrasound or magnetic resonance imaging may help to locate the lesion and its true extension.

Possible other reasons of this nodule" could be a tendovaginitis (stenosans), a neuroma, neurofibroma or an epithilial cyst.

Thus, imaging studies may help to decide whether you need a surgical excision for clarification of the diagnosis or if you may benefit in this early stage from external beam radiotherapy, if Dupuyten Disease can be diagnosed and affirmed by an experienced physician.

With best wishes for a solid diagnostic process and a good treatment decision, Prof. Seegenschmiedt

03/14/19 03:41
thetutulady 
03/14/19 03:41
thetutulady 
Re: Being pushed into surgery

Thanks for your response Prof. Seegenschmiedt.

I appreciate hearing thoughts on possible diagnoses. I have no idea what this is but I want the doctor to know before treating me.

I would like for Dupuytren’s be ruled out before any surgery. I have been very surprised that the surgeons I saw are resistant to imaging or biopsy.

I will try again with another hand specialist.

Thank you for the suggestions on how to pursue a clearer diagnosis.

I’ve attached a picture of my palm parallel to the lens.

Best regards,
Lea

Attachment
46C554A3-EC5B-418A-BBCF-C18592FF1D04.jpeg 46C554A3-EC5B-418A-BBCF-C18592FF1D04.jpeg (5x)

Mime-Type: image/jpeg, 1.694 kB

03/14/19 04:00
thetutulady 
03/14/19 04:00
thetutulady 
Re: Being pushed into surgery

SpanishBuddha, thank you for reminding me about Dr. Hochman. He is in network and it should be no problem for me to get in.

After these experiences, I would very much like to talk to someone who is not a surgeon.

I have a fair amount of nagging pain in my hand when doing certain tasks. Of all of them, writing and sketching are the only ones that are excruciating.

Other than the pain, I have lost very little function. My ring finger will not move freely as the others do. It feels restricted from full movement and does pull forward slightly.

I also have had a very painful nodule appear at the base of my palm.

It appeared just before my second opinion consult. I was told it was not related to the lump and possible cord in my hand but I think without imaging, how would he know for sure? He had an X-ray lab on site. Why not have a look?

Attachment
F8AC8A85-E42F-4712-8C51-0A99CBFA3CF5.jpeg F8AC8A85-E42F-4712-8C51-0A99CBFA3CF5.jpeg (7x)

Mime-Type: image/jpeg, 398 kB

03/14/19 04:08
thetutulady 
03/14/19 04:08
thetutulady 
Re: Being pushed into surgery

Edit: I shouldn’t say it is a nodule at the base of my hand. I don’t know what it is. It is just very painful when pressed.

03/14/19 04:15
thetutulady 
03/14/19 04:15
thetutulady 
Re: Being pushed into surgery

The fibroma is a circular, hard, immobile, solid, non-fluid lump that is located at the bottom of the V and at the top of the possible cord.

The picture can be misleading because it there is a large V shaped area that looks like one huge lump but except for the circular nodule, it is just soft tissue. I think it is just being “popped out” (for lack of a better phrase) because of the nodule.

 1
 1
excruciating   Dupuytren’s   cord—which   Evaluation   tendovaginitis   neurofibroma   perspective   exploration   radiotherapy   contradicting   SpanishBuddha   non-surgical   surgery   understanding   clarification   Imaging   Possible   Seegenschmiedt   operation   diagnosis