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Ryan's condition today:
After all my research and determination with respect to my sons life, I was able to get an appointment with the renowned Dr. Robert Solomon and Dr. Philip Meyers of Columbia Presbyterian hospital. They reviewed the films and the reports and have thus have recommended a Craniotomy/ resection of the AVM in order to cure him of this terrible monster. Ryan has decided to go ahead with the surgery after allot of discernment. It is a miracle ! Dr Solomon and Dr. Meyers will be his surgeons including many others on that team . This was such a difficult decision, however there is a 90% chance that he will make a full recovery, baring paralysis of his left side /some potential neurological issues , seizure disorder which all are at a 2-5 % chance of happening . If all goes according to plan he will be as Dr Solomon states " Ryan will be cured from this AVM, and lead a productive healthy life ."
We have never heard any doctor but Dr. Solomon offered that perspective for Ryan's case. It has always been along the lines of doom and gloom for us with the doctors in Texas. Dr. Solomon stated that all for the previous emboliztions have made the AVM weaker, including the part that is still active which ultimately forms new recruits. As you stated it will continue to grow if we do not arrest it completely and leave nothing active. We have never been told that this many embolizations and radio surgery would weaken the walls of the AVM . Ryan has brain damage around the AVM I saw it on the scan that Dr. Solomon and I looked at . He feels that taking the AVM out will NOT cause more brain damage, because the damage that has been caused already (from embo / radio surgery) aligns like a wall around the AVM. There is no viable brain tissue there to damage at this point . Oddly that is good news ? He said that Ryan's right side overcompensated for this brain damage .
Dr. Solomon main concern beside the fact that Ryan will continue to have a 2-4% chance of a brain bleed if he does nothing, is the fact that his quality of life is very poor. Dr Solomon was quite supportive and validated Ryan's pain, which no one has done as of yet in Texas . He explained to him why he is having all of these symptoms. In addition Dr. Solomon wants to give Ryan is life back without pain .
On Aug. 19, 2013, Ryan will fly in to NY, we will go to the hospital for pre-op testing. Then on Tuesday Dr. Solomon and Dr Meyers will embolize Ryan active (durra/nidus)?, then on the Wednesday they perform the craniotomy and they will take every bit of the AVM out. While he is under anesthesia he they will do a CT scan to make sure they got everything . If they did not they will go back and finish up.
In the meantime we are in a bit of unbelief due to the fact that we have a opportunity to be cured . What is remarkable is that in my gut I knew this should have been the the angle we should have taken years ago. This is what we wanted.
Dr. George Tyson, Former Dept Chair Neurological Department at Stony Brook University Hospital , Stony brook, NY. assisted us with this research and made it abundantly clear that Dr. Solomon was the best surgeon to handle this case and he did . I met with Dr. Solomon on Monday July 8, 2013 by myself without Ryan because he was too ill to come to NY for a consult. I presented Dr. Solomon with the book I prepared of all of the cd's of Ryan's Embos , Radiation , CT scans, Angios and all of the medical paper records.. Dr. Solomon's team reviewed everything in a matter his recommendation was made He graciously spoke to Ryan, His wife and myself and discussed every detail of his recommendation and what it means in the big picture for Ryan. He stated that Dr. Meyers is ready to go as well. I am so hopeful, I have really no doubt about this , they way things happened is a testament to of great things to come from this . My son can live a healthy productive pain free quality life. We all pray for the hands of God to guide D. Solomon and Dr. Meyers to prepare Ryan for a whole new way of life as a man to be free of AVM , Pain and suffering . It's such a simple request . We all have the right to live free
Thank you to everyone who supports this community and to those who suffer from AVM , if there is anything I can do to help you please do not hesitate to reach out . NEVER GIVE UP HOPE EVER! God bless all of you .
Ryan's Mom
Rana P. Dunn