Weighing up the benefits versus risk of Orchiopexy surgery…

When our son was less than a year old, one of his medical consultants was concerned that he had undescended testicles. We then started to gather opinion from different professionals and parents on the pros and cons of the situation. We found few boys with x-linked myotubular myopathy had an operation, called an ‘orchidopexy’ to bring down the testicles before the age of two, and a few did not opt for the operation at all! This is probably because giving someone with myotubular or centronuclear anaesthetics can be risky, due to breathing complications associated with having surgery.

When our son was nearing two years of age, the paediatrician told us that undescended testicles must ideally be brought during the earlier stage of childhood (within 18-24 months) for them to mature properly and to preserve the overall functionality. If the testes is in the abdominal canal it might develop a tumour, in some cases requiring full removal due to them not surviving when brought down at later age. The prospect of bringing our son under anaesthesia was pretty scary. However, to help with the decision – we asked for the opinions of our son’s various other doctors too.

After more medical and specialist consultations, we came to realise that the testicles each need to remain in its normal position in the scrotum – not just to mature for fertility, but also for hormone development near puberty. The entire process was quite complicated for our son. Firstly, during ultrasound scans, the radiologist told us that they were able to locate only one testicle which was in the inguinal canal whereas the other was quite difficult to locate as it was on the upper abdominal cavity. After further careful consideration about what to do, because of his weak respiratory strength requiring 24/7 ventilation, and guided by the doctors – including surgical, anaesthetic and neuromuscular teams (known as a multi- disciplinary assessment) the surgical team decided it was best to perform the surgery in two phases known as “Two-Stage Fowler-Stephens Orchidopexy” which entailed bringing down each testicle in each phase. All possibilities were discussed with us including that both testicles may be useless and might need to be removed; the testicle which lies in the abdominal cavity might not survive until the next phase or luckily both would be healthy. The doctors thought it was still necessary for them both to be brought down for our son’s general health, no matter what the outcome.

On the first stage surgery, the surgeons were able to locate both testicles both in the abdominal cavity and in the inguinal canal through a keyhole surgery, and brought down the testicle which was in the inguinal canal. Both testicles although smaller, were healthy and so he was discharged home from hospital the very next day. We kept the wounds clean and dry as much as possible and our son didn’t tolerate sitting for some weeks. In the second step surgery which is usually done after another six months, our worry was if the testicle located in the abdomen had survived. Thanks to the surgeons and the anaesthetic team – and to everyone who sent us so much positivity – the surgery was successful. There will be a follow-up in a year’s time and again near puberty to examine the survival and growth of both testicles.

Trying to weigh up all the benefits versus the risks of this surgery is a real dilemma for parents. Our personal view is that while every organ in the body visibly only has one primary function – it is linked to overall general health and well-being of someone. We could only follow our intuitions – and are now quite relieved it is over. Only time will tell if it has been worth it.

(Updated 2021)

For more information please visit:-

Visit: https://www.nhs.uk/conditions/undescended-testicles/treatment/

Download this personal perspective here orchidopexy and undescended testicles

Important: Myotubular Trust hopes that this family’s personal perspective helps, but recommends you always consult with your usual healthcare team for professional medical advice, and for any specialist referral for treatments or procedures.