Sharing our story of resection!

Let me begin by sharing what has taken corse over the last 10 months to inspire and hopefully help another family.
My daughter had her AVM treated at UCLA a couple of years ago. As a result natural or perhaps superseded by onyx/glue Significant swelling has taken over her eye/forehead/ temple and threatening sight while causing severe headaches. Not givin good long term outcome for any sort of treatment UCLA decided to not to do any further embolization or surgery but instead trial drugs (they described it as the most complex case involving orbit they've ever come across). She hardly has the ability to open her eye (which happens to be the only she has vision in) so I decided to send her scans to other facilities as the drugs alone do not offer statistics that back up for reasonable solution. Although there are many choices I only valued the opinion of two select facilities. After waiting 6 weeks for review Boston suggest more embolization and said it was unfortunate and treatment extremely overdue something that could not wait even a month (keep in mind this was based on 10 month old scans). They could not give a guarantee that swelling would reduce in and around her eye but preferred to treat with only embolization ?? To further I was informed there was a high probability that her vision could be affected during treatment yet this was supposed to be a preventative for her chance to keep vision?? As my child's advocate and a parent of reason I pressed for a better option . All facilities have talked of resection as a last resort..a couple facilities have informed me nearly 1/4 of her face would essentially have to go and all could be for nothing if her sight and eye muscle was disturbed during.. to add skin graphing would never be perfect .. Dr Suen of UAMS suggested resection be the first choice treatment and best option saying a good outcome would happen if no major growth had taken place since previous scan .. my belief stands that this is when all the majority of the growth took place. Dr Suen had exceeded our expectations verbally of any other recommendation with the simple thought that he could remove safely without removing much of her skin. Naturally we were excited to venture down to Arkansas in hopes of the best possible results . He spent a considerable amount of time explaining the new scans assessed and as I presumed it did grow exponentially within the time frame (unfortunate according to all facilities UCLA did her a disservice by allowing critical time to pass) . Hailey's AVM has now grown through the bone and may still be in need of a craniotomy if removal of AVM is not the only problem at hand. Her follow up scans in three months will determine if bone and flow to eye is affected. Dr Suen did the removal and she was able to keep all of her skin with nothing more then a scar tucked behind her hair line. Movement and all functionality of the eye and vision is still 100% intact we are more then greatful for the careful attention to detail with his surgical skills. Dr Suen truly went way above and beyond medical care on several occasions ..from suggestions for hotel accommodations offering a discounted rate to his patients, conversations with insurance towards the need for necessary length of hospital stay. He allows himself to be available by phone at anytime and continues to provide the most informative explanations to any questions that we've had. Hailey felt great afterwards. Her forehead is flat, temple bulging removed,vision intact, movement in eye not affected and she did keep all of her skin. We are waiting for the swelling to continue to go down In the eye post op but the progress since resection is remarkable . Aesthetically she looks as she did pre swelling . Follow up is required as she does have a little within the orbit that Dr Suen would like to treat with injections. Other then that she doing fantastic and his plastics skills with the aloederm filler look wonderful. Most importantly for the first time in over two years she's headache free and she has her sight!! Dr Suen is truly a gifted doctor and a wonderful person. He with all certainty the best In his field and highly regarded by our family. Pics below include before swellig/after swelling/after surgery on our page. As mentioned she looks just about as she did a year ago. Thanks and hope this helps.

This is great news... we will pray Hailey continues down the road to recovery and remains pain and AVM free. We will keep Dr. Suen in mind- its good to know of his skills/knowledge.. Best of luck to Hailey and her family!