Peter T’s treatments- story so far

My surname is Torode, that comes from an old Viking name Turold. So I must have Viking blood, but no one in my fathers family has the Viking ‘curse’.

I do remember my mother having clawed fingers later in life from the age of 55. She used to complain about pain and rubbed her hands a lot. She saw a doctor who thought it was arthritis. Doing her normal things like housework, knitting and doing up buttons became difficult for her,
and she used to get upset about it.

My own problems started when I was 50, I developed a lump in the palm of my left hand. A few years later the ring finger started to draw into the palm, and I was having problems doing everyday things like tying shoelaces even.

In 2007 I had an operation for it . This meant the surgeon made a cut from my wrist to the left ring finger, and removed the contracting tissue.

After a lot of pain and therapy the finger was straight, but two years later the contracture was coming back in the left hand with cords not in the palm but in the ring and middle finger. In my right hand the condition was causing problems as well with a cord going to my ring finger, but that was progressing a lot slower. I also developed Ledderhose in my left foot, which caused pain when walking. I mentioned it to the doctors but they gave no reaction to that.

When my left middle and ring finger were at about 35 degrees I went back to the hospital, and the surgeon recommended Xiapex injections for the left hand and Needle Aponeurotomy for the right hand,. The NA was done on 4th June 2013.

In January 2014 I had Xiapex injections in the two cords in my left hand, both going to the ring finger. The surgeon explained it was not according to the drugs licence (at that stage it was only licenced for treating one cord at the time), but he thought it was worth the risk of giving more than what the datasheet said (it has since been licensed for 2 cords at the same time) especially since it was either that or surgery if the treatment did not work

Afterwards the hand was very swollen and I had a lot of discomfort over the next few days, but the surgeon explained that was all normal.

Three days later I was back at the surgeons office and after a numbing injection he
straightened my fingers, and a ‘crack’ was clearly heard.

A week later the treated finger was still stiff and swollen, and moving it was difficult. I was getting pins and needles and the joint seemed to seize up. I started physiotherapy to help with this, this consisted of rubbing and manipulating the finger and was needed for 4 weeks.

The finger improved with physiotherapy but never became completely straight.

In April 2014 I had Xiapex treatment again, this time to treat the middle finger of ny left hand, that is bent with a 60-70 degree contracture. It came up like a balloon on the back of the hand afterwards. A few days later it was straightened under local anaesthetic (getting the local anaesthetic for the straightening is the most painful bit of the whole procedure). The finger straightened completely, and moving it felt like moving a rusty hinge, after the finger had been stuck at 60 degrees for 2 years.

At a check up six weeks later the surgeon was happy with the results of the Xiapex on my left middle and ring finger. I had developed a problem with a nerve after the injections where I kept feeling pins and needles and had to physically shake my hand to relieve the feeling. This settled
down without treatment after a few months.

The cord that was treated with NA 18 months before in my right hand had reformed, so put me on the waiting list for Xiapex for that.

In July 2014 I had a Xiapex injection in the cord going to the ring finger of my right hand. I had severe swelling and pain afterwards, a lot more than the previous times I had Xiapex. The slighest touch even to my elbow hurt as if my arm was on fire.

A few days after the surgeon tried to snap the cord but it would not give, so he performed NA again instead. The surgeon decided that my extreme reaction to Xiapex this time could be a sign of an allergic reaction starting, and from now on he will not use it on me again. So it is back to NA or surgery for me if I need more treatment.

February 2016 my left ring and middle finger were contracted again at the middle (PIP) joints, and I had surgery. The wound took a long time to heal, and I wish I could have had the injection instead!