It refresh everyone… My son had an AVM scheduled to be removed on 6/11. It was an incidental discovery after a skateboarding accident. The AVM measured 2.5 and was operable. The first opinion suggested radiology the second suggested surgery. The first doctor was claimed to be the best, but was very impressionable and condescending. The second doctor, Dr. Lisa Apfel, was wonderful in every aspect.
There was a little drama the days before the surgery. The radiologist who mapped the AVM was pushing to have radiation and indicated that surgery may be off the table. We had to find the surgeon to review the plan once again that it was our decision to move forward with surgery. She was able to make the radiologist understand that his procedure was not going to happen.
The admission into the hospital was another adventure – because he is 17 (almost an adult) they felt it was odd to put him in the peds ICU ward. But they did any way. It was wonderful being in the peds ICU ward; the staff in the peds ICU at Roanoke Memorial are the best.
Day of surgery was a roller coaster. My son was undergoing a major surgery. Everyone will tell you not to worry that they do this type of surgery all the time – well that may be so, but they don’t do it on my kid all the time! In additional my own roller coaster another patient in the peds ICU passed away as they were putting my son under. I felt for them, for me, for every parent who has ever out lived their child.
I couldn’t wait in his room, I had to get out. After my husband took me for a walk I attempted to sleep in a chair in the main lobby of the hospital for an hour.
The week after was a blur. I remember pieces of the week; him trying to be strong and refusing pain meds then the pain was so bad he couldn’t stand it, him realizing he had a catheter and then the nurse taking the catheter out, walking to the bathroom for the first time which eventually lead to dancing to the bathroom in the middle of the night.
Going home was good. The road to recovery has been a long one.
Prior to the surgery we were told to expect some deficiencies in his lower interior vision field. Four months after surgery and he still does not have any peripheral vision on his entire left side. The doctor doesn’t think this will improve; if it does it will be very slow. We have visited the eye doctor who agrees.
He has accepted this change & is learning to compensate for the change in his visual field. We are helping him too – and truth be told, we are having fun with it. We can sneak up on him! I can drive with him in the passenger’s seat and make faces at him and he will never know. (don’t tell him)
Driving without left peripheral vision is going to be a challenge. He did not have his drivers license before the surgery. So now I am on the search for a drivers ed teacher that can help him with this. (The eye doctor checked for us; you have to be completely blind in one eye before the Commonwealth of VA will not give you a license to drive.)
He is still having a lot of fatigue; something he isn’t use to. He comes home from school and takes a nap, wakes when I get home, and then goes to bed for the night at 10. I’m hoping this will improve in the coming months.
The only thing that has me worried at this time is his dizzy spells and his low blood pressure. For the past two weeks he has been complaining of dizzy spells. Yesterday he was at school, dizzy while sitting in a chair and thought to himself ‘if I get some water that will help.’ Got up to walk to the water fountain and passed out. The school called me after they called the ambulance. At the hospital they said he was dehydrated which caused his low blood pressure. However, his blood pressure was still low after they gave him a bag of fluids. We have an appointment on Monday with our family doctor to follow up.
I will say this – the doctor yesterday in the ER was the most detached clueless person I have ever come across. He asked about the history of the AVM and I told him how it was discovered (after a concussion from a skateboarding accident). He called the AVM removal surgery an “elective surgery.” It was all I could do from yanking him out of the room and saying ‘listen hear you twit, preventing a hemorrhage that could kill my son was not something we elected to do. Now find me another doctor.’
All in all, the recovery has been good. We are very happy we had the spaghetti knot of blood vessels removed from his brain.