Monday, 24 March 2014

Interview with patient who had minimally invasive surgery (Tenex)

1) Do you have Ledderhose disease, Dupuytren’s disease or both?   

Ledderhose only at this time.

2) Do you have a family history of the disease or have any increased risk from other risk factors such as excessive alcohol consumption, smoking, diabetes etc?

Possible Grandfather with Dupuytren's.  No other significant risk factor.  

3) How long had you had Ledderhose before considering Tenex? And what other treatments had you received / were you offered by medical professionals? 

I had the painful lump for about six months when I made the decision on Tenex.  I was offered surgery, but was told of the risk.  I did do shock-wave therapy which gave me some minor relief from the pain.  

4) Before Tenex were you made aware of the rate of reappearance after traditional surgery and did this concern you? 

Yes and while I won't totally rule out surgery, it will be a last resort.  

5) Were you at the stage where you couldn't walk before you had Tenex / what sort of pain were you in?

I can walk, but with significant pain.  I walk slowly and I must limit my walking and time that I stand on my feet.

6) Tenex is not that familiar to me, please could you explain the difference between it and regular surgery?

Tenex was originally called the FAST procedure and developed at the Mayo Clinic.  It is a focused aspiration of soft tissue.  No cuts are made.  A small needle goes into the nodule and it is removed by aspiration.

7) How did the treatment go? How long did the treatment take and what was recovery time like?

The procedure was very easy.  It took about 15 minutes total and I was able to walk out of the office and just stay off my foot for a day.  I was "supposed" to be that simple with no follow up necessary.  

8) How long ago was the Tenex treatment? Have the lumps grown back? If yes how long did they take to grow back and are they worse now? 

It has now been two months since the procedure.  It appeared to just be swelling right after the procedure, but now after 2 months, the lump is larger than before treatment.  I must give a disclaimer that the physician who treated me is insisting at this point it is a hematoma rather than a fibroma.  I am the first Ledderhose patient he has ever treated.  He did say it is possible that the hematoma is on top of the fibroma, but at this point I do not have a clear diagnosis.  Gary, I will update you by e-mail once I do and you have my permission to update this interview.

9) Would you say that the surgery was worth it? And would you recommend it to people that have Ledderhose? Would you consider having it again? 

At this point I would say it is an option, but it is not proving successful for me.  I will be pursuing other options once I can get a clear diagnosis from a physician.

10) What would you say your standard of walking is at the current time and do you think this would be different had you chosen not to have Tenex?

My standard of walking is worse since the procedure as the lump is larger and presses against any kind of shoe and even the floor when barefoot.  I was better off before the surgery and the lump was softer.

11)  What treatments have you tried since surgery?

Since it has only been two months, I have not tried anything other than ice/heat and massage.  Massage tends to annoy it and ice and/or heat have little effect.  The nodule does fluctuate in size as it always did, so some days are better than others. 

12)  What treatment options are you considering now?

Right now I am considering two options.  Either Hyaluronidase injections from the doctor you interviewed in Texas or Radiation Therapy.  They are very different procedures and I still have more research to do before making my decision.

More Information from patient:

Tenex is such a new procedure that the only information out there is from their website:   The website lists the physicians that have been trained and are currently using the technology.  I called several doctors from the website and heard back from five of them that they had successfully aspirated fibromas.  I was treated by a doctor near where I live and I was his first fibroma patient.  He spoke to another physician that has successfully treated this condition and performed the procedure using that physician's protocol.  He did tell me that a fibroma is at the very top end of what they feel the Tenex device can handle as it is a small needle with a limited amount of power.  Thank you for all the work you do on your blog.  I have found it very helpful.  I will let you know how things go in the future and also what treatment I decide on next.  Best Wishes.

Follow up e-mail from patient

I had an ultra sound a few days ago and my doctor confirmed that the hematoma has healed and now he can clearly see the fibroma. It is also significantly larger than it was prior to Tenex. Feel free to update my interview. Because walking has now become difficult, I discussed RT and H. Injections with my doctor. He spoke with Dr. Davis in Texas and feels comfortable using his protocol. I've decided to go ahead with the injections. I would to glad to let you know how it goes.