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AVM Survivors Network

Our crazy story -Ruptured AVM on plane


#1

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 “yes”, 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 “sooner rather than later”. 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 “pseudogout”. 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 husband’s 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 “Christmas Miracle”. 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 “the history of werewolves” in college​:flushed::joy:). 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 “normal” 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 “charge” 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 doesn’t 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 wouldn’t 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 wouldn’t 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 we’ll just have to cross those bridges when we come to them…

So that’s pretty much our story to this point. I am looking forward to learning more from everyone here.


#2

Gasp, Brainiac. What an incredible story of fortunate timing, amazing skill on the part of so many (including your husband!) and steady, level-headed partnership on yours. What happened, and how it happened is quite amazing, and it sounds like your husband is in an excellent place, both physically and medically.

Yes, you both have adjustments to make, but I think that you are wise to resolve to cross those bridges when you get to them. And you will get to them soon enough.

Wishing you strength during this challenging time, and best wishes to you and your whole family. Please tell your husband that he’s now got a whole lot of friends here that he never knew he had. And we’re cheering for him.

All the best to you

Seenie and the whole Moderator Support Team, TJ, Christina and Meli


#3

WOW!! Quite the story, amazing, my eldest brother is a captain and how lucky we all are for this out come, first, what an incredible pilot!! This sounds very simular to my surgery, and this year is my 30th year post surgery, (minus the situation in which it occurred) second i am sorry for your AVM crash course, You have come to the right place, many resources and some incredible people here, third as far as worrying about him being him, AVM has a way of slowing you down and re thinking/prioritizing life,family and career, this will be difficult for him to accept but there’s no way of getting around it, I’ve tried, we are brain surgery survivors and that’s it!! All you can do is keep an eye on him,take it slow, one step at a time, he is very lucky to have you and his children, my heart feels for you, you both have so much to live for and this is just the start of a new chapter in your lives, thanks for sharing, we are all here for you, may the good lord bless you and your family, Be positive!! Stay strong and keep us posted, take care,


#4

Brainiac,

I agree with the others, you’ve had a heck of a time – and you’re great at storytelling, too!

Just take it one day at a time, one week at a time is the best advice I can give at this stage. Take heart in yourself. You’re doing really well to manage this – with all the additional challenges that are being put to you – so don’t lose heart. With patience and some strength, you’ll be able to carry on until he is able to support himself better and take some things back from you.

You are very early into recovery at the moment. This thing is a very slow deal, so it is going to take probably a long time and you shouldn’t look to your husband to be back to near normal yet. I’m sure his short term memory will improve, and his cognitive issues… it is really early in his recovery.

Talk to the doctors or rehab about how to get the necessary services in. I hope they will be able to point you the right way. (I’m in the UK so no idea how you marshal such things in the US). And I would say talk to them about you and any concerns you have about coping. Or talk to your primary care about yourself. You deserve support as well and by talking to people about how you’re getting on, they may be able to help you look after yourself, too. Don’t forget yourself in all this.

I’ve got all the best hopes for both of you. Let us know how you’re getting on along the way.

Very best wishes

Richard


#5

Welcome to the site, you’ve had quite a go for sure. Your husband has certainly made some remarkable progress. I can relate to some of what your husband is experiencing, particularly the short term memory part. After my bleed my short term was poor, and it took a long tie time to recover to where it is now, 20 months later. I didn’t have a craniotomy but had gamma knife 6 months post bleed. Balance wise I’m still a little off but can do most of what I did before, but really noticed this Christmas standing on a chair putting the Angel on the tree, just about took the whole thing out! I guess a long way to say we are all effected in different ways and to different degrees, recovery is slow. Great strides are being made by your husband, and he clearly has great support and his advocate that, here anyway, is required to navigate the services/therapies available. Take Care, John.


#6

@Brainiac Welcome to the group- so glad he was not in the air when this happened.
Now being on both sides of being the patient (massive stroke then an AVM for bonus points) and being a caregiver my younger sister got the flesh eating virus and almost died. Its way worse personally being the care giver.
Good news is your husband is young and sounds like he is in good shape. Also good news their is a national clinical trial going on right now with stem cells in the brain for stroke victims and TBI and its going well.

He will most likely need a lot of rest and he will be exhausted doing simple things at first. For me my once I could walk again my husband had me get the mail some days I could do it and some days I could not walk that far which was around 500 feet from our bedroom. He even had me go on Sundays. I was super independent and the hardest part is accepting you need help, mourning your old self and accepting your new self. Also I felt terrible feeling like a burden at the age of 43. But I happy to say I have no brain damage anymore and recovered 2 years faster than the neuros thought. Just take it a day at a time and let him be your guide. my brain felt thirsty I still have brain pain and see the Stanford pain clinic. Make sure his pain is under control as if you let it go for long per my neuros that is how you will feel for the rest of your life. I now also have sleep issues since all this. It was hard accepting that I could not go back to my job that I loved but now I volunteer.
As the hospital for a social worker there are lots of programs set up by your local aging and adult services that can help as well. And feel free to freak out on here we have all done it and we all can relate.
Hugs
Angela


#7

Hi Brainiac:

Welcome to the greatest group of AVM-ers you’ll ever encounter. You and your husband have been through hell and back and so have all of us! As you are well aware AVM’s affect the entire family. From the actual patient to the care-giver to the kids to the parents and co-workers. My AVM in my cerebellum ruptured in 2014 for which I had Gamma Knife Radiation. Everything that everybody has previously said, happened to me too. The loss of coordination, short term memory loss, lack of focus, confusion, headaches, etc. were foremost in my life and they are in your husband’s life right now. In time, (a long time) things slowly got better and better. I’m not the person I used to be, but I can now accept the person I am now. In many ways, the new me is so much better than the old me. My husband stood by me from day one right up until today and for that I am forever grateful! I didn’t make it easy for him, but he stood-fast while I slowly improved. Come to us for support and encouragement. Don’t hesitate to talk to your doctors when necessary. Lastly, my recipe through all of this is “P&P” (Prayer & Patience). Wishing you all the best.


#8

Hello brainiac, how are you ?? How is your husband doing since your last post ?? We would love to hear an update, want you to know your not forgotten and are in are thoughts and prayers here, Hope you and the family are doing OK and moving forward, wishing you all the best, take care


#10

How very sweet of you to inquire! I must apologize for not updating earlier…I have been pretty much inundated these days with dealing with medical paperwork, applying for disability and trying to make and get to appointments, etc. I’m guessing everyone here can probably relate! When I do finally find some free time for myself, often the only thing I feel like doing is just vegging out to some mindless activity that is actually NOT AVM related!:joy:.

To my great delight, my husband has improved radically from where he was when I first posted here. He probably has regained about 85-90% of his cognitive back and physically he is doing fine, navigating 2 flights of stairs at home on on a regular basis, showering and dressing himself, etc. He was released from in-patient rehab about 6 weeks ago and started going to out-patient rehab about 2 weeks ago. He does OT and PT 2x/week and speech only once a week due to “budget constraints” at the rehab

All is not totally perfect yet, however. The negatives are that he unfortunately still has some balance issues and occasional dizziness (“head spins” as he calls it), as well as numbness on much of the right side of his body. We are praying that will eventually rectify itself…the neurologist here led us to believe that this is not unexpected with cerebellum AVM situations, so we are crossing our fingers on that as I am sure the numbness on his foot doesn’t help with any with his balance! He is also experiencing the fine motor skill issues which his neurosurgeon had initially predicted. Using a screwdriver or those tiny manicure scissors to try to trim his mustache is very much a challenge these days and I know frustrating for him, although he seems to handle it well.

Our biggest hurdle by far, however, has been his eyesight. He has been experiencing Double Vision for quite some time and there seems to be no way we can help it as the only neuro opthamologist in our little podunk area refuses to see him. The neuro opthamologist claims to be “overbooked” and thus “not taking ANY new patients”. I have tried pushing that rope by asking his local neurologist, who is supposed to be some kind of “big shot” in the area (so I thought he might have some “connections” ) to try to contact the man for us and explain the necessity of the situation - but have received no response back on either end. :rage: 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 isn’t 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 can’t 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?!

So, overall, if we can ever get his eyesight addressed and corrected life will be manageable. Then we can at least aim for him getting back to driving! He has always been such an independent person that I know that relying on me to take him everywhere must drive him nuts even though we are so incredibly grateful for how very far he has come in such a short time!:innocent: When he starts to think about whether he will ever go back to his flying career, I remind him, “one step at a time”…right now he needs to focus on the “alligators closest to the canoe”!. Whatever ends up happening will definitely be a big adjustment however, as flying is pretty much all he’s 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 I’m sure it will be difficult for him to eventually switch over to any kind of new career. But then again, you never know. If there’s one thing I’ve learned throughout this whole process it’s to “never say never”! 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!


#11

Brainiac, Seenie here from Moderator Support. I’m not an AVMer, but I happen by here regularly and noticed your response. Thank you so much for bringing us up to date! It sounds like your husband is doing brilliantly, and you are coping. An AVM (or any other rare disease or condition for that matter) isn’t something that only the patient experiences: everyone in the family is involved.

Your husband is lucky to have you, and we’re glad that you found us, and that you are glad too.

Take good care, Brainiac, and do keep in touch. It’s stories like yours which provide hope for those who find themselves thrown into the AVM ring.

Seenie and everyone at Moderator Support


#12

Brainiac,

It is great to hear from you. As you and Seenie both say, great progress has been made. It also sounds like you’re very positive which is fantastic.

I watched a programme on BBC a few weeks ago that sets out the progress of a former army soldier after a massive haemorrhage and his recovery. It is quite hard watching at the beginning and the timescale of his recovery might worry you but I am sure his ex-military determination and strength played a good part in his recovery. I won’t spoil it for you but I think it is a fantastic film.

Very best wishes

Richard


#13

Brainiac, AWESOME !! That is great news and for a newbie you are miles ahead of most, great job on your behalf !! He is very lucky to have you, when you do get alone time it is totally normal ( and not so easy ) to just try and forget about it for awhile, the doctor. insurance thing is a battle we all fight, makes it so frustrating, as if this isn’t hard enough, you are very fortunate to come so far in such a short time, thank you for the update and take care, we are all pulling for you,


#14

Another update - finally! First of all, I want to say that there CAN BE a wonderful quality of life after a cerebellum AVM rupture!! If you’ve read my initial post, you’ll know that my husband suffered a catastrophic AVM rupture in his cerebellum early last December. After 6 weeks in ICU and a second surgery to close up an unexpected hole in his dura, he came back home last February and completed extensive rehab and physical therapy. By the end of May he was much improved and no longer using a walker. Last month, (September) he began driving on his own again, which I think was was HUGE in helping him to stay positive about things. He now drives everywhere, including taking our daughter to school. Life is actually almost “normal” for us now. His biggest issues are still double vision, a numbness/pins and needles sensation down his entire right side and enduring what he referred to as “head spins” whenever he closed his eyes or tilted his head back as if looking up toward the sky.

As far as eyesight goes, although much improved, he still has the double vision, however it is correctable when he is wearing the prism glasses, which were FINALLY prescribed for him this past summer! You should have seen him after he got them - he was like a blind man who could finally see again the whole drive home from the Strabismologist, to whom we had finally been referred. Within a 10 minute time span, that guy managed to jury-rig a pair of nonprescription glasses using some special cling on film and Voila! Hubby could see normally again while wearing them! I’m amazed that it took so long for someone to do such a simple thing which made such a huge difference in hubby’s life at the time. Hubby now has an official pair of prism “bi-focal” glasses to wear when reading, as well as a pair of special prescription prism sunglasses. So, although his eyes are not completely cured, the situation is now much more live-able. Even after gaining some improvement from several sessions of vision therapy with a wonderful occupational therapist who specializes in double vision and nystagmus issues, we were told that hubby’s eyes are at the point where they are as good as they were going to get. Not ideal, as wearing prism glasses means he can never go back to flying again (prism glasses are not authorized by the FAA ), but definitely a HUGE improvement over seeing double, like he had been stuck doing for months. Amazingly, Hubby has come to terms with being grounded and mandatorily “retired” surprisingly well… I, however, am still adjusting to having him around 24/7!:joy:

As far as his other issues go, the vertigo was really bothering him. Every time he shut his eyes or tilted his head back he got what he referred to as “head spins”. We finally decided to book another appointment last week with our “big shot” neurologist try to find out a solution. The guy was a no-show. Instead he had his nurse practitioner see us. Thank God! Turned out to be the best thing that could’ve happened, as, although as nice as he was, the neurologist had actually done nothing tangible for us this entire time. Pretty much told us last spring that hubby was just going to have to live with things the way they were. The NP, however was a completely different story. She actually listened to what we had to say, seemed to REALLY care and came up with a plan, proactively ordering a CTA scan and scheduling vestibular rehab therapy beginning next week for the “spinning”, which she diagnosed as vertigo. Additionally, she prescribed Gabapenton 3x a day for the numbness. Hubby started on a low dose of it it a few days ago and already notices a difference😊. We shall,see how it progresses.

Even more good news about the “spinning”/vertigo. I was chatting with an old friend, a couple days ago, telling her about Hubby’s visit with the Nurse Practioner last week. She commiserated and told me that she had dealt with vertigo issues herself awhile back and her brother, who is a otolaryngologist, had told her to try this certain exercise called the “Foster Manuever” where she had to kneel down in a somersault like position for a few minutes, and her vertigo went away. So, when I mentioned it to hubby yesterday we decided to google it to learn more. Found a video of the doctor who invented the procedure demonstrating it, and decided to give it a try. Hubby only did it once and didn’t notice any difference at all, other than feeling even dizzier afterwards. HOWEVER…this morning hubby excitedly woke me up to tell me that his spinning/vertigo was completely GONE!! He could close his eyes and no head-spinning! We walked around on eggshells all day waiting for it to come back, but it hasn’t. He is beyond thrilled as now he can actually SLEEP (!), look up at the stars or watch planes flying above, etc. So, we are feeling VERY blessed! One unexpected thing did happen, tho. The Tinnitus he used to have before the AVM rupture, returned when his vertigo left🤗. We figure they both must be connected somehow and hope that we can eventually figure out a way to address that, as well.

SO, overall, things are going VERY well for hubby and we are at a positive point with lots of wonderful things for which to be grateful. Not only is he driving independently again, but in August we were able to celebrate our 20th wedding anniversary by taking a 10 day Mediterranean cruise, encountering no problems at all, either flying there or on the ship! If anyone had told me less than a year ago when all this happened that we would be in such a great spot now, I would never have believed them! I was informed at the time that his odds of survival when the rupture occurred were only at 3%…hubby is proof positive that doctors can tell you one thing, but God just may have other plans!:blush:


#15

That is such an amazing story! Its so great to see his great recovery. I also had a ruptured AVM years ago in Atlanta, GA.I know how hard it is but mine continued to improve years after. I am not “normal” either but you learn to get around the things you can’t remember and laugh at the moments you say things wrong (mine is usually when i am tired these days by mixing my arms and legs references or say not “real” words). If you don’t mind asking can I know what his neurosurgon is/was?


#16

VHad to laugh - hubby still forgets his words and tangles them up quite frequently, as well. We pretty much all just laugh about it now - including him. The kids will never let him live down once asking them to “please bring him the circular “thing” on top of the “thing” next to the black square “thing”…Uh, Dad - WHAT?? He meant his coffee cup next to the microwave!:joy: It’s often a crazy guessing game trying to figure him out, but at least it keeps us on our toes!

Hubby’s neurosurgeon was Doctor Paul Kevin King (https://health.usnews.com/doctors/paul-king-192074#experience ) at the Atlanta Medical Center. We really didn’t have a say in who operated on him as his was emergency surgery, but I can honestly tell you that if, God forbid, we were to ever have any more brain surgery, despite having to make a 5 hour drive from our home to Atlanta, Doctor King is the ONLY Doctor I would let do it. I trust him implicitly. Truth be told, when I first met him upon immediate completion of hubby’s initial surgery I didn’t much care for his personality. He was a bit impatient and didn’t sugar coat things at all. Afterwards I discovered that his was attitude was due to extreme exhaustion. I was told that he had already put in a full day doing trauma surgery at Atlanta Medical Center and had actually been in the parking lot getting ready to leave when he received the call to come back to assess and operate on my husband. After finally getting hubby into surgery, it took about 7.5 hours to complete. No wonder Dr. King wasn’t bright and chipper afterwards! In fact, when he made rounds the next day family noticed he was limping so asked about it. He told them his feet were sore from standing while operating and working the cauterizing (?) machine the day before. Regardless, once I got to know him better and saw how skillful and caring a neurosurgeon he was, my initial impression of him definitely changed. Very dedicated man. We used to joke that he must actually live at the hospital as he seemed to always be there - even when Atlanta (including the airport) shut down for that blizzard last December!). He is the same guy who did the former news anchor Amanda Davis’ emergency AVM surgery a only few weeks after doing my husband’s (I believe it was actually an AVM rupture like my husband’s that she had, not technically a stroke). Unfortunately she only survived a couple,days after the surgery.

Anyway, we feel VERY blessed that God put into place the wonderful medical team that He did for us, as well as the incredibly caring, competent and proactive nursing and hospital staff at Atlanta Medical Center. After we briefly moved over to Shepherd ReHab we missed them terribly. When Hubby had to go back to Atlanta Medical Center to repair his leaking cerebral fluid, it was like old home week coming back to family with everyone working there making it a point to come by our room to see and give us a big hug and cheer us on, including even the ER doctors, ambulance staff and even the cleaning lady!:blush:.


#17

Is the spinning still gone? May have to try that Foster maneuver


#18

Yep… it’s been a week and hallejuah the “spinning/dizzinesss is STILL gone!!!:blush:. This is the video we watched that seemed to do the trick: https://m.youtube.com/watch?v=mQR6b7CAiqk Hope it helps you like it did us…be sure to update if it does. Unfortunately, we haven’t been as successful re: Hubby’s numbness. The gabapentin worked for a day or two, now he doesn’t notice much of a difference. We will be trying a stronger dosage this week to see if that helps. We’ve come to learn this whole process is definitely an exercise in patience as well as trial and error.


#19

WOW that was a really a crazy story on how things happened for you guys… I hope your husband gets much better much quicker and remember he has undergone major brain surgery and trauma does result in us not being able to fuction properly as the brain is the main control centre for our bodies… I can say after my surgery I had very strange memories that my wife said never happened and I was convinced they did!

Please be strong and positive for him as this will really help you guys soooo much… I pray everything works out, which it will and take one step at a time with looking into what is required for his return home… Thank God this didnt happen to him while he was flying in the air!!!

I’m sure there will be someone here who may give you some guidance to what you need so please use this site as much as you can and keep us posted… God bless!