My name is Nabil Rahman, age 20 from Bangladesh, and I have been suffering from Arteriovenous Malformation (AVM) in my right mandible, cheek bone and surrounding soft tissue. When I was 8 years old, I started having regular bleeds from my right gum area and the right side of my face started to feel warmer than the other side, I also noticed that I could hear a murmuring sound. A reddish coloured birthmark appeared on my right cheek that tended to get worse during physical activity.
I underwent surgery in Singapore in June 2001, in the KK Women’s and Children’s Hospital under the guidance of M.VT Joseph, Pediatric Surgeon who removed the AVM in the parotid gland with a total parotidectomy and a submandibular gland excision due to bleeding. After the surgery, swelling occured which had not been there before the surgery. After that there was no bleeding. I went to Singapore again in 2002 because of the persistant swelling, but the doctor told me to wait and have surgery later on. After this visit I didn’t have any further treatment. My doctor went to London, so my treatment was further delayed. In October 2008 I went back to Singapore as my condition was getting worse. I went to Mount Elizabeth and met Dr C. Sivathasan, Vascular Surgeon. He told me thatfurther surgery would not be possible as I would bleed to death, so sent me to a radiologist. The radiologist said he couldn’t do it so referred me to Dr. Sirintara Pong Pech, Interventional Radiologist in Bumrungrad Hospital, a specialist in such treatments. I went to Bangkok in November 2008. She performed 3 embolizations back to back, each with a month gap, each including a direct puncture to the right mandible with glue. My AVM was 95% obliterated.
After surgeory I was very concerned about my looks, so I had partial plastic surgery under the guidance of my radiologist, under a plastic surgeon in Ramathibodi Hospital, Bangkok in July 2011. The surgery did not help at all, the bone expanded to the same size as it was. The doctor used Aethoxysklerol (1% 2 ml) injections twice in the soft tissue region, however this did not improve my condition. 6 months later, I had mucus in my right gum area which was creating problem along with the swelling. The radiologist in Bangkok explained that the previous doctor may have drilled the outer cortex of the bone, where the glue that was placed nicely in the bone marrow, which meant the glue may have been displaced, creating all kinds of problem such as burning and sharp-shooting pain, swelling and irritation. I came to Singapore on 26th May 2012 for a consultation and further treatment. They told me that they could no longer help me as it was beyond their specialism.
In January 2013, I visited Dr. Suen James, Department of Otolaryngology – Head & Neck Surgery in UAMS, Little Rock, AR 72205-1799, USA. Dr. Suen James told me they have a special center in the US for all types of Vascular Anomalies and that he specialised in treating complicated AVMs. He exclaimed “From your description, I think you have some dead bone in your jaw caused by the glue previously injected, which can happen with anything we use. He recommend treating that with antibiotics and prescribed me with Doxycycline 100 mg, 3 times daily by mouth. He warned that the antibiotics may have an effect on the AVM.” He also said that if I tolerated it, I would have to take it for a year or longer. Also it would be worth trying a drug called Propranolol which slows down the heart rate and decreases blood pressure and which slows the flow of blood through the AVM, so he gave me 40 mg, to take twice daily by mouth. The side effects could be slowing my heart too much. He told me that if my pulse (heart beat) went over 60 per minute, I should be OK.
At the moment, I am currently on these drugs and on my way to visit him, hoping that we will find a solution. I really hope one day I can scream and say ‘Yeah I am AVM free’. That would be the best day of my life. I would cherish that moment forever.