My First AVM Anniversary

Today is the one year anniversary of my AVM. When I think of how far I’ve come, it’s nothing short of amazing.

I started the morning of August 4th as a healthy 44 year old, but I didn’t get very far. It struck like a bolt of lightning out of a clear blue sky. A massive brain hemmorage resulting in a stroke, leaving me hemiplegic on the left side of my body a year later.

I don’t remember much of the first month in the hospital, which isn’t a bad thing in hindsight. I had difficulty swallowing, and wound up with food in my lungs. Aspirated lungs meant a peg feeding tube in my stomach, and no liquid through your mouth. That’s something I can’t forget.

I also developed a clot in my left leg, so they put an IVC filter in. I don’t remember having that put in, but I sure do remember having it taken out. They took it out through the jugular vein, so they needed a really, really long hook. Seeing the various hooks hanging on the operating room wall and dried blood on the ceiling is something I can’t forget. The last thing I remember about the procedure is thinking that they must have made a big mistake by not putting me under before entering the operating room.

I spent a month in the first hospital, two weeks of it in ICU. I spent the next fourteen weeks at the Shepherd Center, six as an inpatient, and eight as an outpatient. I met some amazing people there, from dedicated third shift nurses (who changed the sheets that I soiled more times than I can count) to amazing therapists that worked side by side with me through the recovery process.

My one constant through it all was my bride of sixteen years. Holding my hand when I needed it (which was a lot), being my advocate, and putting up with all the nonsense (which was also a lot) that I put her through. Remember “for better or worse, in sickness and health?” Well, she aced that test.

The rest of the time was spent at home, recovering with the help of my beautiful five year old daughter. I’ve spent less and less time in the wheelchair, and my daughter uses it more and more as a “cool seat” to sit in. I’m truly blessed to have her in my life.

I can’t believe that today is the first anniversary of my AVM. Have I come a long way? You bet. Do I still have a long way to go? Yes I do. But here’s to many more.

Happy amazing first anniversary, Tim! I am grateful to read more of your health journey and you have lots of company on this site. I love the way you describe your wife as your bride of 16 years ... sniff. Another yay for your beautiful daughter who is fortunate to have such a great father. Tim, you will appreciate that I have a blessings list and my husband is number 1 followed by my 2 young adult children who saved my life in 2011! Tim, the world is truly a better place with you in it and that goes for my world too!

Happy Anniversary, Tim! Thank you for sharing your wonderful Anniversary post.

Hi, Tim - the account of your bleed and the aftermath is harrowing (esp the part about the blood on the ceiling - ewww!) but then the stuff about your family at the end is so sweet. Thank you for sharing this. One year is a big deal - congratulations! :) atnt

Well done Tim for having the courage to come though what you explained above :( , Seems horrific to think about it :( , But so glad you've made it, And things only get better right ? :)

Last night I tried to explain to my wife that when I went into my second Cranio to remove my AVM that I was ready to die, Meaning that I tried to make plans so that if I didn't make it things would be taken care of, Its not a nice thing to try explain .... but just wanted her to know that as a young man of 37 I shouldn't have been ready to die, But I was :( , But the good news is that I made it and the surgery went great with me having no issues afterwards !. Now I get stronger each day but still feel that the preparation for my 2nd surgery has scared me inside more than outside. But I still remain positive most of the time and hope you too will only get stronger with time both mentally and physically !. Take care !.

As far as I’m concerned, you have to be tough to even be on this site. We’ve all been through difficult times. That’s what binds us together - no matter who you are, what you’ve been through, or where you’re from. You either have an AVM, or you’re a relative of someone who does. We all have one thing in common - we’re AVM survivors.

Congrats Tim! I always celebrate on my anniversary. I hope you do too.

Congratulations, Tim, on your first anniversary! Here's to many good times ahead with friends and family!

Happy Anniversary, Tim! Wishing you the best on your continued journey, and more success stories from you. :-)

Hi Tim. I am thrilled you survived. I love your Can Do spirit! Never give up!

Congrats!

wow, you’re right, Tim our avm history is very similar. Like your wife, mine of 31 years is the embodiment of the marriage vows amd it breaks my heart to see her work so hard for me and us when I can’t help. ?I, too developed a dvt in my afflicted leg, but do not have a filter. It’s been almost a year since they found that. We’ll go during fall break to get another ultrasound to see if it is still getting smaller. I spent 9 days in the hospital and 42 days inpatient at a rehab hospital. Still doing outpatient therapy and hope to get a walker at home soon. Please keep in touch and let me know how you are doing. I have got you on our prayer list. Let mew know if I can help any otrher way,



Best,Mike

Hi Tim and a happy happy anniversary to you. Thank you for writing that post, as I see how far you have come since that day 1 year ago. I know you will continue to recover over the years and all the best to you and your beautiful family, cheering you on everyday :)

Belated Happy Anniversary! That you survived is proof another miracle... many of us had large, life-threatening bleeds. The experience truly keeps things in perspective.

Wow! That brought tears to my eyes. So happy that you are here to share your story and that you are on a continual path to recovery. All my best to you and your wonderful family.

Yep, I concur the dried blood on the ceiling was shocking. All I could think was that they just left it there for patients to see? Anyway, I for one am extremely glad you found this group. Keep up the great work (which I keep hearing about, which is a very good thing ;) and as AVMmom said, "all the best to you and your wonderful family." :)

That is so exciting that you are able to give up the wheel chair. AVM comes all of a sudden and it is difficult to adjust our lives. Looks like you are doing a great job remaining strong and positive. Good luck!

Thanks everyone for the fantastic comments! You’ve made my day time and again as I read new comments - you should see the smile on my face right now! :slight_smile:

Hi Tim!!

I'm late to the party, but I wanted to add my congratulations on your first anniversary!!! I appreciate you sharing your story--my hemorrhage was 12 years ago (May 31, 2002) and I tend to forget how fortunate I was and am now! (I had a tiny AVM in my right parietal lobe and wound up having a craniotomy to obliterate it a few months later.)

Best of luck to you in your continued recovery!
Gail