Hi everyone, first off this site has been a HUGE support after I was diagnosed with an AVM two months ago. The stories on here are so brave, deserve all the respect in the world and admiration too… I was diagnosed (Spetzler-Martin Grade II and Supplementary Grade IV) -totally by chance. Prior to getting stitches from a fall on my face the clinic ran a CT scan… and there it was.
I saw 7 neurosurgeons with 6 saying “let it be” until the angiogram revealed an aneurysm. Now I face embolization + surgery in early May, and they at least now all agree Can anyone offer any tips or tricks for my stay, anything you wish you had brought, or done? And any tips for long hair? What is ICU like?
I am from California and live in Rome, single mother to a 7-year-old son, and undergoing the surgery here. I have a friend coming from Cali to help with my son for 3 weeks and my ex’s family is a good support, but I am worried I won’t have the energy to follow him after my recovery… they listed physiotherapy as a possibility. How have other parents coped? My son knows that “Mommy has something like pasta in her head that needs to come out,” and that I will be away for awhile.
The rollcoaster emotions have gently subsided, and I am more pro-active and serene, I am exercising every day, (only the sports allowed by my docs) but honestly, the mornings seem to be the worst, it all comes back upon awakening, what is life now.
Well, my dAVF ruptured - I stayed in ICU for a week. . . I’m not going to sugar coat it - I would call in hell. . . I was in ICU when COVId was very rampant(last July)
Everyone has a different story - my hemorrhage, the ICU stay & the first month or so of coming home were an equivalent to living hell in my opinion
I had severe anxiety & was put on heavy meds
But, my recovery has been nothing short of amazing - I’m close to nine months post embolization(my neurosurgeons achieved 100% obliteration on first try).
I thank god firstly, then again for bringing me the medical staff I needed.
But, from what I have gathered is that the hemorrhage is the main problem. The embolization isn’t - as long as it is complication free.
I suggest you get an adult to help you for a while. Without my wife I have no idea how I’d get by for the first month - I started driving a week or so after coming home, but it was just for sheer joy around the block. Along with her having to walk with me for weeks - I’d barely make it around the parking lot at first.
This is just my experience, everyone on here is quite different.
At this point in time - I’d consider myself about 90-95% on a good day.
It’s impossible to say what your experience in hospital will be. The only people who have a good idea are your docs but I think you have to go into it knowing you could need a lot of time to recover and yet you also need to have foremost in your mind that you could just as easily do very well and have a rubbish head for a few weeks but otherwise nothing to show for your trouble. We don’t know. Your docs will give you a closer balance of where things may lie for you but i don’t know whether they will prefer to give you the better side of the story or the less good side of the story.
For my part, like Mike, I had a DAVF, which is an AVM in the dura mater meningeal layer (so not at all deep in the brain, but dealing often with some of the bigger vessels) and like Mike, I had just an embolisation rather than embo+surgery. In your case, the embo is to noticeably reduce the risk of significant bleeding during the surgery and seems to be a favourite combination of procedures these days.
I had no bleed either before or during or after the embo and while I felt quite rough for week 1, less rough for week 2 and pretty serviceable by week 3, it does take much, much longer to feel “good” or “all over”.
I didn’t have to worry about being “Dad” because my family is older than yours and my wife looked after us all. I do think (only in terms of contingency planning) you should discuss with your friend what your options are if you are still in hospital at week 3 or 4 or 6 or otherwise you’ve had a stroke and while you’ve come out of hospital, you’re still going through rehab. Could they stay? Would you let her take your son to California? What papers need to be in place for them to travel together to get out of Italy and into California (and vice versa) because that isn’t always straightforward. I know, when we visited Chile some years ago (and needed to consider that I may need to travel later than the rest of the family) that we could not leave Chile other than as a whole family without an affidavit for our son because Chile allows minors out of the country only with both parents in tow (or something like that).
In terms of preparing yourself for the day, mostly just trust the team to take you carefully through what will happen when. Nobody is in a rush, they will look after you and they expect you to be nervous. They’ll look after you. My favourite advice is that the brain likes good hydration, so keep your hydration up to a good standard until you’re obliged to go to nil by mouth. I think it helps you feel less poorly.
I think ICU is ok. You expect lots of things connected to you and in my case, there were plenty of people in the same ward that looked way worse off than me, so I took good solace that I felt ok. The drugs I got worked nicely and while I was uncomfortable initially, it was “discomfort” rather than “pain” and eminently gettable-throughable.
Hi Mike, thank you for your story and advice. You had a hemorrhage then embolization? So you were awake in ICU? I don’t really understand yet, I thought they keep you asleep for awhile? (will be discussing with my neuro radiologist interventionist (I call him Yoda) and my neurosurgeon my 1000 questions this week)…
Other than meds, how did you cope with those moments of anxiety?
Thanks for the tip of having adult support, unfortunately my friend leaves late May, but I live alone with my son, so will tap on our babysitter who is like a sister, and friends to be available. Would it be best if I stay with my ex’s family for awhile? or even my ex! No, really, I need to think on these things, I am way single and have been so self-sufficient for 3 years, with my little boy.
So glad you recovery went well - I wish you the best in continued health! Prayers for us all too.
I think it is a very pragmatic thing to think through and discuss with those who you could turn to (whoever they may be!) as to how they might help you and your son through.
Hi Richard,
I really appreciate your insight and advice! I especially like the hydration tip.
Mine is located in the area of equilibrium so this kept my docs first “let’s monitor” opinion until they found the hidden aneurysm … I understand there might be problems after… so ok, I will have a serious chat with my friends and extended family (and ex) here in Rome. My parents are elderly and can’t really take care of my son in Cali, and I really want to give my son his stability i.e school in Rome, biking in the park after school, his play dates (not much else with Covid restrictions). Contingency planning - will do.
It’s just sensible. Don’t think of it badly as “what’s going to happen” but working out with people you can trust anything important is a good idea and stops you and them panicking if you take longer to get well. I told my wife where all my finances were and Will and all that rubbish. Didn’t need it at all but it helped me feel I had planned for difficult times and it would help her if it did go the wrong way.
No problem at all, if we can help one another on here in even the slightest - that’s worth the effort
How did I deal with anxiety? - a lot of Valium. . . I just couldn’t keep myself together. Between the pain sensations all over my head & not knowing exactly what’s going to happen was very rough. After having my follow up angiogram come back clean at 5 weeks - It started to ease off
But, yes - you should definitely have adult support at least very close by.
I wasn’t allowed to go up my own stairs for a week when I got home - that made it real fun since my bathroom with a shower was upstairs. My wife was scared shitless the first time she had to push me up the stairs. This was a tad before I was supposed to be doing it, maybe at 4 days post ICU or so.
Asleep in ICU - that’s wishful thinking for me. I couldn’t sleep for almost the whole week there. Of course, again - blame my anxiety. Even when they put me on psyche meds, it wasn’t enough to knock me out long.
But, I was in ICU during the worst part of COVId. . . So, I’m hoping your stay will be more pleasant. . .
I completely understand your idea of complete self sufficiency & independence. But, unfortunately after this - this is not a good idea. At least maybe for a week or so, I’d say. Since now everything can be delivered to our door(not sure if it’s like that in Italy)
My longest first drive was to my mom’s, she lives about 40 minutes away from. I barely made it on my own a month after the ICU stay. I was hanging over the steering wheel < I can’t say that was safe at all to do
Before that, my wife had to drive for me - but, I did manage a few driving laps around the block
I have already been using some of your terms with friends that I might need “adult” help even after my release. They are a bit surprised- I guess I would be too if I didn’t know exactly what I was in for… I am also literally copying and pasting your advice and Richard’s for my ex to see - who has been dodging a meeting with me to discuss my son’s programme while I am in the hospital. A bit in denial. Will enlist his family too and do a Zoom meeting on the programme of me and my son!
Any other tips for things to bring to the hospital?
Tomorrow I have an appointment with my neuroradiologist so hope to have more insight.
Before I go completely above my pay grade - you’re having an embolization + a craniotomy for removal?
I seen that you mentioned that you’re having the embolization + surgery
As far my own experience with the hospital stay - my medical staff were nothing short of amazing people. . . This was the first time in my life that I was bed bound. . . . Me & wife sent flowers to most of the neurological floor. These people might as well been my family for a week.
And, try to relax - and, if you can’t - just ask for meds, it’s worth the effort. . . I tried to fight my anxiety off for quite a while - it didn’t go well + I needed it anyway when I got home
Yep, embolization with “resection” or craniotomy to let this AVM guest make his exit.
My hospital stay for my angiogram, (1 night) made me realize what a God send those nurses are… I was able to choose my team of two treating doctors, and so thankful for that, they both have expertise (both professors here in Italy) and have a human touch. I saw a lot of neuros who seemed to be lacking in this! I won’t be worried to ask for the meds, will remember this, thanks so much.
Laura,
I also have really long hair, past my waist. I literally begged my neurosurgeon not to shave me bald as it took over 20 years to grow my hair that long and I might not live long enough to grow it back (I was in my 50’s when I had my DAVM surgery). I made sure he knew my identity is very much because of my long hair, people remember me for it. He only shaved a thin line about 1/2 inch wide to accommodate the surgical staples…all 25 of them. I thanked him profusely for not shaving me bald! He understood about women and their hair. Ask your surgeon, he’ll probably at least try accommodate you like mine did.
My DAVM did not rupture but was found purely by chance as I had a hemangioma in my tonsil. I researched the surgery, watched a few online, researched the doctor, the hospital…for me the more information the better as I relieved my anxiety, but that’s me. It scared my mom. I told her I was in good hands and not to worry. Moms worry anyway no matter how old you are. Turns out when he got inside my head it had aneurized to the point of rupturing…he told my family if we hadn’t done the surgery when we did “She would not have survived.”
The meds they had me on post-op had me sleeping a lot for about a day. After that I felt a little discomfort, pressure, but no pain (good meds!). Surprised them all by walking the entire wing a lot the day after I woke up…I couldn’t get the tv to work and had brought nothing to read so got a little stir crazy being cooped up with nothing to do. I went home after only 2 12 days post surgery!
For the next few months I found I really NEEDED a nap every afternoon. I also managed to sleep with a large homemade icepack on my surgical site, which was easier since my DAVM was about 2 1/2 inches behind my ear (I sleep on my stomach mostly). Perhaps your son can take a nap with you if you feel you need one like I did? I had icepick headaches for those few months. Must’ve been from the brain still healing…they’re gone now.
My mom helped me with showering the first two weeks, using a bath chair, so no worries about falling in the shower. She kept an eye on my for at least 6 weeks. A little hair fell out that the blood on my scalp along the staple line was holding in…but now I only have a long thin scar running down my head. I am 100% my old self. The scar is my mark of being a survivor and some people can’t believe I had brain surgery 3 1/2 years ago until I show them my scar.
I hope and pray your outcome is like mine. I will keep you in my prayers.
the clinic ran a CT scan… and there it was.
Can anyone offer any tips or tricks for my stay, anything you wish you had brought, or done? And any tips for long hair? What is ICU like?
and that I will be away for awhile.
No, really, I need to think on these things, I am way single and have been so self-sufficient for 3 years, with my little boy.