Joburg man to visit 72nd doctor as he battles rare growth in his tongue and neck
Katharine Child | 2017-03-26 16:18:59.0
Warren Bonn will be visiting a vascular surgeon — his 72nd doctor — on Tuesday in a search for a specialist who is able to remove a rare blood vessel growth from his tongue.
Image by: ALON SKUY
Johannesburg resident Warren Bonn will be visiting a vascular surgeon — his 72nd doctor — on Tuesday in a search for a specialist who is able to remove a rare blood vessel growth from his tongue.
The growth has been in his tongue and neck since 2015.
Bonn has an arteriovenous malformation that is extremely rare‚ usually affects children and comprises 75% of his tongue‚ making eating and speaking painful.
An arteriovenous malformation is a tangle of poorly formed blood vessels.
Bonn has seen a long list of doctors‚ including radiologists‚ specialist physicians‚ vascular surgeons‚ plastic surgeons‚ paediatricians‚ general surgeons and interventional radiologists‚ but most cannot treat him without removing his tongue.
If the benign tumour grows any larger‚ he will struggle to speak.
Bonn has lost 10 kilograms in the last year as he battles to eat solid food due to the pain the tumour causes.
Some doctors have said they can remove his tumour by removing his tongue and rebuild a new one‚ but this will leave him unable to speak clearly.
Bonn has emailed Harvard University‚ Emory University and even paid for second opinions abroad to find out if there are any ways to remove the tumour and save his tongue.
The only way to treat it and save his tongue‚ it appears‚ is by blocking off blood vessels to the growth‚ which is called embolisation. One attempt by a Cape Town doctor has failed.
Bonn has only found one doctor in the world who has successfully treated an arteriovenous malformation in the tongue with embolisation.
Dr Alejandro Berenstein at Mount Sinai Hospital in New York treated the condition with successful surgery on the tongue of a teenager.
Berenstein responded to Bonn’s request for help and said that he believes he can treat him but it will require six surgeries costing $50‚000 (about R621‚000) each. This is a reduction from the actual cost of $100‚000 (R1.2 million) per surgery‚ as both the doctor and Mount Sinai Hospital have agreed to halve their price.
Bonn is using crowdfunding and the website — www.youcaring.com — to raise money for his surgery. He has raised $3‚700 (R46‚000) in his crowdfunding drive. This is almost enough to cover the first of six surgeries abroad.
With 71 local doctors unable to help him‚ Discovery Health Medical Scheme has arranged for him to see South Africa’s leading vascular surgeon‚ who specialises in neck and head growths‚ on Tuesday.
Bonn will fly to New York meet Berenstein on April 4‚ have further scans and speak to him face to face.
If Berenstein can stop the blood flow‚ shrinking the painful growth‚ he will be able to speak and eat comfortably again.