My husband recently entered into the world of AVM survivors - a medical condition I never even heard of prior to him experiencing a massive rupture in his cerebellum early last month. Now I am trying to learn as much as possible about what the future is like for those who have also experienced this type of situation.
Our Story:
On December 7 - Pearl Harbor Day - I was on the way to pick my daughter up from school when my cell phone rang. A voice on the other end told me it was the ER in Atlanta, Georgia and asked me if I was driving. When I replied âyesâ, they asked me to pull over, then told me my husband had experienced a burst blood vessel in his brain and needed immediate emergency brain surgery, would I give my permission? Huh? WHAT???! Are you kidding me? I just spoke to him on the phone 1.5 hours ago and all was perfectly normal! What the heck is going on?
I tried to understand as the doctor attempted to explained what had occurred, but none of it made much sense to me. All I basically got out of it was that the situation was not good and that I needed to get to Atlanta âsooner rather than laterâ. We do not live in Atlanta - we live in the northern panhandle of Florida. My husband is a commercial airline pilot who commutes to Atlanta for his job. He is a healthy, in shape, 56 year old former navy fighter pilot whose only problems prior to this were a torn rotator cuff and occasional bouts of âpseudogoutâ. He is as healthy as a horse and has a physical every year due to his job. How could this BE?
I eventually learned the scenario which led us to this point. My husband was beginning the first leg of a 4 day trip. As captain of the aircraft, he completed all of the necessary preflight requirements, made all the announcements, closed the aircraft door and had begun to taxi the plane out to the runway. According to how my husband eventually later described things to me, he suddenly felt a buzzy feeling in his head accompanied by sharp pain and violent feelings of nausea. He told his first officer that he was going to be sick, managed to pull the plane over to the side of the runway, slam on the emergency brake and then passed out. The first officer radioed for paramedics and made an announcement for any emergency medical personnel on board to help out. 15 to 20 minutes later my husband was on his way to the hospital in an ambulance where upon arrival they intubated him, did a cat scan and determined the cause of his problem. Fortunately for us a neurosurgeon who specializes in this type of surgery was still on the property after a long shift. They contacted him just as he was about to leave and he returned to perform what tuned out to be a 7 hour long surgery on my husband. I was later told that my husbandâs intracerebral hemorrhage score was a high 4 out of 5 - which has a 97% mortality rate.
Fast forward to 5.5 weeks later and despite a few setbacks (leaking cerebral/spinal fluid from his incision that had to be repaired) the progress my husband has made has been miraculous. The hospital staff has taken to calling him their âChristmas Miracleâ. He did so well that we moved him from the hospital to the Shepherd Rehab Center in Atlanta last week where he began doing Rehab therapy⌠before being sidelined with the leaking fluid issue and being operated on again for that a few days ago. He will begin Rehab once again at Shepherd on Monday. We were told that since the rupture occurred in his cerebellum to expect vision, balance and fine motor skills issues. So far, although he sometimes has double vision, my husband can see well enough to read the captions on the t.v., is already walking somewhat on his on his own (supervised by his PT) and is working on his coordination. His cognitive issues are still a bit scrambled, although much improved. He will hold a perfectly normal, conversation and then suddenly segue into something totally unrelated or inaccurate (he briefly thought we had 3 kids instead of 2, for example and decided my son should focus on getting a degree in âthe history of werewolvesâ in collegeâ:flushed:
). His long term memory is better than his short term, which I hope will improve. And he has some issues with focusing and attention.
If I have to admit it, the cognitive part is what scares me the most. I think I can manage most of the physical issues but not knowing if his brain will ever get back to ânormalâ scares the crap out of me. I miss not having my best friend and life partner to run things past and reassure me. This new role of my being in âchargeâ and having to deal with everything on my own now is all new to me - prior to this he always wanted to be the one who dealt with all the household matters and I was happy to oblige. In addition to that he is a very strong willed, independent individual. He doesnât like to be told what to do. I worry about when he eventually comes home (we were given a tentative release date from Shepherd of the end of Feb.) How on earth will I be able to keep him from just up and doing whatever he wants to do when he wants to do it? Like he loves go sailing - what if he just decides to take off and head out for a sail without telling me? Or climb up on the roof to fix something? All things he wouldnât have thought twice about doing prior to this, but now I would definitely not want him doing. Especially as the neurosurgeon did not put any skull bone back in place - he just has the brain membrane (dura) covered by scalp. They said because of the location of his injury (base of skull) possible injury to it wouldnât be a issue but it still makes me incredibly nervous.
I was told by his Rehab that when he is released we will have to have an aide in the home for at least a month to help my husband acclimate and adapt himself back to order to the home. He will also need additional cognitive and speech therapy. How do I even go about arranging all of this? I have so many questions and am really hoping to be able to use you guys as a resource and support system to help guide me through what I know will be a challenging transition period when he returns home. I have NO idea what to expect but I am certain he will have a lot of huge adjustments to make - especially in regards to career, etc. I guess weâll just have to cross those bridges when we come to themâŚ
So thatâs pretty much our story to this point. I am looking forward to learning more from everyone here.
Its enough to make you want to spit nails! I was almost able to get him a last minute appointment with a neuro opthamologist in Atlanta who supposedly specializes in neuro-related double vision and who had a last minute cancellation, but unfortunately discovered that he isnât in our insurance network. I finally resorted to making an appointment with a guy 2 hours away (not ideal as Hubbie now tends to get nauseous when in confined spaces like the car, so hates going on long drives) who IS apparently in our network - only to be told we canât get in for at least 2 months. In the interim I decided to go down to Dollar Tree and buy several pairs of cheap sunglasses and some black duct tape and have managed to jury-rig several pairs with the tape so that only half of the left lens is covered. Poor hubbie looks like an idiot wearing them, but it seems to help and hey, any port in a storm, right?!
When he starts to think about whether he will ever go back to his flying career, I remind him, âone step at a timeââŚright now he needs to focus on the âalligators closest to the canoeâ!. Whatever ends up happening will definitely be a big adjustment however, as flying is pretty much all heâs ever known as a career. He spent 23 years in the Navy flying fighter jets (F-14s) before becoming an airline pilot 10 years ago, so Iâm sure it will be difficult for him to eventually switch over to any kind of new career. But then again, you never know. If thereâs one thing Iâve learned throughout this whole process itâs to ânever say neverâ! Right now we just pray for improved vision and manual dexterity and take each day as it comes! I promise I will be better about updating here, too - so many of the messages I have read have been uplifting and very helpful in helping me to not feel so all alone in this. Thank you!
