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AVM Survivors Network

Checking into the hospital tomorrow

Hi I’m new. Three months ago after having the worst headache and what I thought was just another visual migraine, I went to the ER and found out I had a brain bleed. My left side field of vision was affected. After a month and a half and many scans and an angiogram they finally discovered I had an AVM. Thankfully they say it is small and in a good place and after 6 weeks my eye sight returned. I went 2 weeks ago for a dural av fistula embolization that was a failure. They were unable to reach the area and caused another small brain bleed. Tomorrow I am scheduled for a follow up angiogram and a craniotomy the next morning.
Before this I have never had anything but a couple wisdom teeth removed and I’m rarely ever sick. I have had migraines and visual migraines as long as I can remember but I assumed it was normal to have a headache. I have had years and years of issues with vertigo as well but never put any of this together and would have ever guessed something like this would have happened. I am mid 40s, work out, really healthy, low blood pressure, vegetarian, I don’t have any conditions and don’t even have any medicine I take. To say this was a shock… I haven’t been able to work for 3 months and I’ve been headachey, tired, and feeling a bit depressed over the whole thing. Not being able to see was the worst. I am an artist and the idea of not being able to see again was very upsetting. Thankfully my vision returned but I don’t feel up to doing much of anything. If it wasn’t for my teenage daughter that keeps me going it would be a lot harder I think. just want to get this surgery over with and get on with my life.
Painting and working out are always my go to stress relief and I haven’t been able to do either.
Has anyone here that likes to strength train and work out had a craniotomy? If so what was your experience with getting back to the gym and feeling strong and healthy again?
Thank you!

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AngelaM, Welcome here! And best of luck to you tomorrow.

You’ll be in our thoughts. Be sure to come back and tell us how you are as soon as you can! We want to know how you are.

Seenie from ModSupport.

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For you. :heart:

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Welcome! You have a whole community behind you, and will be thinking of you tomorrow and Tuesday. I had a bleed and gamma knife but no craniotomy, so quite different. Although we are all similar and all different with these things! I was always active but exercise became my medicine, and was limited to walking only post bleed. I slowly started back to strength training as the Dr. allowed, and after several months I was given the green light to do what I wanted. I don’t remember the exact time lines.

I don’t know post craniotomy time lines, but would guess it will be a slow steady progression, patience is vital in all of our cases. I hope I don’t ramble too much, take care and know we are with you! John.

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Thank you! Patience is the hardest. lol Exercise is medicine for me as well. Thank you for sharing your experience. I’m planning to grill the doctor about it. I’m hoping a couple months will be the answer.
A

Hey AngelaM,
Firstly, Welcome to Ben’s Friends.
I have had a craniotomy, not for an AVM, but for another neuro diagnosis. I must say here, no 2 brains are exactly the same and no 2 neurosurgical procedures are exactly the same. 2 people can have exactly the same procedure but have vastly differing outcomes.
“I’ve been headachey, tired, and feeling a bit depressed over the whole thing.” And that is normal. As another member has stated ‘A craniotomy is a major assault on the brain’ and it is. Some people bounce back really well after surgery and some people don’t. For some they may have the occasional headache, for others it can be a daily battle to function. Trying to gauge how you will be post surgery is near on to impossible. I say this as I’ve had a few neuro procedures and no 2 have been the same. Trying to gauge my own recoveries via the previous surgeries has been fraught with danger. Each operation has hit me harder and harder, with the last one hitting me the hardest and I haven’t been able to return to my profession since, that was 6 yrs ago now.

My recommendation for your recovery is DO NOT push it.
All of your normal limits may have changed. Slowly, slowly with your recovery.
Your body will give you signs. LISTEN to your body. if it says stop. Then STOP.
I say this because I didn’t listen, I pushed and pushed hard to get back into ‘Life’ as I knew it. I pushed too hard, too soon and did myself more harm than good. I didn’t listen to my body, which was screaming ‘STOP’. I convinced myself that pushing that pain barrier was building stamina, when in fact I was driving myself further and further into the ground. Ahhh, don’t be doing that. My pushing ended up with me requiring yet further neurosurgery and now have daily headaches ranging from OMG to ‘Give me a teaspoon, I want to rip my eyeballs out’. Savagely intense.

My last major neurosurgery was in 2013 and I like to think (or fool myself) that I have learnt to manage ‘better’, but for me things fluctuate massively. As I often explain it “Today I can leap a building in a single bound (OK, so a bit of an exaggeration :wink: ) tomorrow I might be lucky to crawl out of bed. I can never tell” It keeps life interesting.

Now, some people recover unaffected and I truly hope that you are one of those and things get back to normal ASAP, but just be prepared that not every recovery runs sweetly and if you are prepared for it, it won’t be as much of a shock.

Best of luck with it all and please keep us updated.
Merl from the Moderator Support Team

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“preach it brother Merl!” at least that’s what some of the people at my church would say. First time we went there, I didn’t really understand the dynamics of the “out loud comments” during a pastor’s sermon. I kind of thought that it was interrupting and breaking the “flow” of the service.

I couldn’t have been farther from the truth. They weren’t interrupting the service, they were enhancing it. They were, immediately, giving the pastor and the rest of the church the “heads up” that they were listening and that Pastor Darrell was speaking the truth.

It’s a conversation. God is using the preacher/pastor/Reverend or whatever title you give him or her and taking their gifts and using them to bless the church. The church is responding and saying, “This is what we need to encourage us, to support us, to strengthen us and remind us that God is right here with us so we can turn around and go out and face another week.” A week that might be good, a week that might be not so good, or a night where you paced the floors all night worrying about what is going to happen tomorrow, God knows, God cares and God puts people in our paths strictly to help carry us when it’s too hard to walk.

Angela, you might not realize it, but Merl was saying exactly that. While we aren’t the miracle maker that Jesus is, this group is amazing in the way they reach/we reach out and connect with each other and help us muddle through this crazy mess.

Merl - thank you for your faithfulness in urging us all on in our journeys. Let us know how we can do that for you. The group is deeper and richer because of you.

Angela - thank you for sitting down in front of the 'puter and sharing some deeply personal and emotional things with the rest of us. We’re better off for it and will be anxious to hear how yours goes tomorrow.

Angela - since you probably don’t have time to read all the way back, here’s my personal story with no hiding in it. First diagnosed in 1978 - I was 13 years old. 12 hour surgery, got 95% of it, the rest was too close the spinal cord. Uh yeah.

It came back and in 1986 and 2009 we did a series of embolizations and it got less, but was never gone. In 2018 (22 months ago but who’s counting?) we went in for another embolization. We thought it would be like the others - 6 to 8 weeks of feeling lousy and then back to a fairly normal life. Boy, we were not prepared for this. A month ago, I finally got approved for disability benefits so that takes a huge load off. The lists of “can’ts” is much more obvious and hard to get through than the list of “I can still…”

But listening to a dentist drill in my left ear (not really but that’s what it sounds like pretty much all day.) Doesn’t that sound like fun? NOT!

Thanks for reading all the way down. @ModSupport if this really long comment should be a separate post, talk to me and let’s do it.

TJ

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Thank you so much for sharing that. On a much smaller level I understand what you are saying. Some days I felt almost normal and some days really bad. I wish you the best.

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Getting approved for disability seems almost impossible. When this first began I applied. Thank goodness you got it.

Great news. I went in yesterday for the angiogram to see what state we were in after the embolization a couple weeks ago to prepare for surgery. The doctor said they changed the plan and wanted to try an embolism from the vein side. So they put me to sleep and we’re prepared to try an embolization again but the AVM was gone. All gone! We check again in 3 months with another angiogram to see and she said there is always a chance (about 5%) of it coming back.

I’m sort of in shock. I had prepared myself for a shaved head, metal plate, longer healing… I’m so pleased of course!! But it feels unreal that instead of being in the hospital this week I’m back at home.

Yeah, 20 months was a long time. Especially when it took them 8 months to deny it in the first place. And then 12 months for the appeal. The appeals court judge said to the vocational rehabilitation staff member who was there, “Do you know something he could do?”

5 minutes later we were done and the written approval took about 2 weeks.

Advice - hire an experienced attorney - not experienced in anything, experienced in these cases.

Go overkill on the documents and the narrative you tell them. Near the end of the process, they had a 5 page paper form that I had to fill it. It was basically, “it’s been so long we want to make sure you are still disabled” kind of form.

I wrote 24 pages. Told in detail what we’ve done, who we’ve seen, the tests that have been done, the meds I’m on and what impact if any they had. It was basically an auto biography of my AVM journey. I’m toying with the idea of telling my story in a book - "A “Funny Thing Happened on the way to 8th grade.”

Thanks Angela. There isn’t a day that goes by that I’m not overwhelmingly glad to be done with that part of this journey.

TJ

It seems like there should be an easier way. The struggle to keep people from abusing the system leads to people that need it to not being able to get it. It is hard to fight for this kind of help while you are busy getting better.

As Tevye’ says in the musical “Fiddler on the Roof,”

“From your mouth to God’s ears.”

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Angela!

Welcome! It’s great to see everyone rushing to support you (and I’m late to the party) but it’s fantastic to get an outcome like that! Fantastic!

I had just one embolisation myself for a dural arteriovenous fistula in my right occipital a couple of years ago and I would still caution that you should take it easy. Don’t rush back to normal life. As Merl and John both caution, I second: go steady. Start with walking for exercise and DON’T overdo it. I think recovery from an embolisation is still a big thing and it is way best to go steady.

Congratulations, though! Wow!

Richard

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Thank you! How has things been for you since the embolism? Have you had headaches or any issues? I have had headaches since the embolism but the neurosurgeon said that is typical since they caused another bleed.

I am taking it easy for sure right now. After 3 times of entry at the same groin site I am very tender and painful today. But hate to complain at all because I would have been even more tender and painful had things gone differently. Lol

Everyone has been so supportive. Thank you!

Angela,

Hi. My DAVF was pumping blood into my transverse sinus, which is basically horizontal across the back of your head, the flow was then going past my ears, on it’s way back to the heart, as well as a bit of “reflux” or “retrograde” flow, stopping the normal flow of blood back to my heart. Consequently, my main issue was dizziness and head pressure and more of a “thick head” I’d say rather than distinct headaches.

Post op, I would say I found the changes in flow quite challenging and my head took a while to stop smarting from the experience. I can say I was on regular paracetamol / tylenol for the first few weeks. By a month post op, I had definitely stopped taking those.

At a month, I was still not 100% but was able to sleep normally – pre op, I had been propping myself up in bed as lying on just one pillow would make me extra dizzy – but I was back to normal with that within a month. I then felt as though I was getting better for the ensuing six months. At that point, I had a bit of a dizzy spell and getting better had felt like it had plateaued. I had to apply to go back to hospital (waited a further 6 months to be seen again – healthcare is free in the UK but you have to get in line) and had tests over a few months the following year. Eventually it was confirmed that nothing untoward was visible, so I just decided to put any residual “weirdness” feelings out of mind and get on with life as normal. This was 18 months post op.

What I conclude from this is that having your brain glued up is more disturbing than you might give it credit for. It sounds really straightforward and the least invasive way of having surgery. It is, in some ways. It is definitely my favourite option compared with a craniotomy but it isn’t a simple, trivial, just move on afterwards kind of treatment. Or, at least, it may not be. It probably depends entirely on how big an AVM you have, what it is doing, what part of your brain it is affecting and all that. My doc did say he used lots of glue.

So… I don’t know how your experience will fit with mine: my DAVF was very much on the surface of the brain, but was pumping blood through major sinuses in odd directions and then my interventional radiologist blocked it all up in one step. What I think is that you need to be generous with yourself and take it sensibly easy. Don’t think in terms of weeks to feeling “normal” but it may slowly improve over months. Just like a craniotomy. If you had a further bleed, then you’ve got the impact of that to get over, too.

It takes time. I’d say think 6 months. If you’re really lucky, it might be three. If you’re less lucky, it could take about as long as me.

What I would also say is if you regress, some occasional steps back may be to be expected: recovery is not a straight line: but if you have anything significant, sudden, etc. always go to the doc.

I hope these thoughts help.

Let us know how you get on. I’m just as interested in how you get on as how I’m doing today.

Very best wishes

Richard

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I had a craniotomy 2 yrs. - successful - but I, lile you, was healthy & never been sick. But my life was forever turned around & had to have surgery.
Your body will want to heal - eat well resr as your body wants & get outsoors & WAlK!!! Look at the blue sky - really enjoy. Watch the clouds float by
Liaten to the trees & the leaves & the birds. May seem small things but every day you will build up & move on
Please don’t rush your pre-surgery training. Progress will come but take small steps first. All good things come to those who wait!!!

.

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Greetings from Phoenix, AZ! I was set to compete in the Ironman in Hawaii. Then just two months before I was in a head-on collision. Lots of head and brain trauma. Just by chance the doctors found my AVM. I had no symptoms. So the accident was a blessing in disguise.

I had a craniotomy to address the AVM. Make no mistake, surgery is a breeze since you’re asleep. But recovery is very unpleasant. Fortunately being in excellent condition and health I was in and out of the hospital in just four days.

Unfortunately, primarily due to neck issues-vs the AVM-when my face smashed into the steering wheel, it ended my endurance racing days. Full recovery took about 15 months. But I’m still able to workout, mountain bike, rock climb, hike, and do just about anything outdoors.

Each of our circumstances is unique. It appears yours is perhaps not as significant as some. Ask questions, get second opinions if possible as I did, then decide how to proceed. My AVM as in 1993 and all is well. You have the advantage of much better technologies, better trained nurses and doctors and surgical practices.

For whatever it’s worth, I never ever, not once, had anything else in my stubborn head, than getting back to life as normal. I never thought I would have any permanent deficits that might limit my active life. NEVER! I just made some adjustments. So get in your mind that you will be just fine and back at the gym at some point. And for now I’ll send healing waves your way.

Finally, I was on my own when this was going on. Only told a few people until the last moment. If it was possible to go dark for a few days for brain surgery I would have done it. But I had to let the cat out of the bag. Everyone freaked out! There was no google and no social media. So I spent a lot of time at the library researching. Everyone here has either been or currently is where you are right now: scared and confused. So do you homework. And reach out. We’re here to help you.

Bill

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Glad to hear your AVM has gone away. Mine was removed in 2014 when I was 51. Since then I have had 6 additional surgeries due to bacterial infections in the cranial area of the AVM. I have had the bone flap removed and am now on my 3rd implant. Each surgery takes more and more out of me. I’m hopeful that the infection is gone. It usually takes about a year after surgery to present itself. Anyway, if you can avoid the surgery at any cost and just treat it with embolization procedures, I highly recommend it. I lost my career and had to start over due to all the work I missed.

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I’ll add a bit of experience here as well (and thank you for making time to post!).

I was very active exercising prior to the bleed that led to my diagnosis of an AVM (I was exercising at the time of the bleed, which may not be a causal link but I doubt it helped!).

It’s hard for me to recall the specific time frame, but in the 2-3 months following my bleed I was prone to intense energy lows and would sometimes fall asleep against my best efforts (this made driving, as an example, something that I had to plan very carefully for some time). I also struggled to find ways to exercise and have not yet quite found my ‘footing’ in this area.

As others have stated, I think taking it easy is key. I have had at least one incident post-surgery that occurred while exercising (Orange Theory) that led to an ER visit. Nothing specific has been ‘diagnosed’, and I’m hoping to get a bit more clarity as part of an annual visit to Mayo this December. I will say that I feel that a non-trivial portion of my struggles with this has been mental/emotional/psychological…the knowledge of what a bleed might mean (unlike how I felt when I had the first incident and was unaware of what was going on) weighs heavily on me.

Wishing you strength and thank you again for sharing.

Brian

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Thank you! It is so nice to hear other people’s stories and to not feel so alone in this. This last angiogram is taking a longer to recover. And you are right, there are good days and bad days.