One week after open craniotomy

General personal-stories
1

I wanted to make sure I got online and posted about my experience so far with an open craniotomy for my 5mm unruptured (and growing) aneurysm -- too often, people post on medical boards with their problems and never take a moment to post their successes. I hope this will offer some calm to those of you waiting for your clipping or considering surgery.

A month ago, I was scheduled to have an open craniotomy to clip and obliterate a 5mm aneurysm on my left mid-cerebral artery. I went into surgery on Wednesday 4/22/15 -- my Dr, Dr. Howard Riina, is the Vice Chair at the NYU Medical School Neurosurgery Department, and generally made me feel like the surgery was the right decision. He's widely referenced as one of the best aneurysm surgeons in the world, so I feel particularly lucky to live in New York, which made meeting him and working with him the easiest possible solution. He was patient, answered all my questions, and was a generally awesome cruise director for this whole adventure.

My surgery happened Wednesday morning, took approximately 3.5 hours, and I was out and in recovery by Wednesday afternoon. I was very out of it once I woke up -- exhausted, in pain, and nauseous, but by mid-day Thursday, I was already feeling more myself, with the exception of the fact that I lost all my numbers immediately following the surgery. I couldn't count, couldn't retain dates, couldn't recall dates or number facts for about 36 hours, but around mid-day Friday, everything came back as though a switch had been flipped. My numbers are back as though they'd never left.

I was home in my apartment by Saturday afternoon, and now, 7 days later, I'm beginning to feel more myself -- still tired, sure, but reading books, typing this blog post, generally feeling much better than I expected (if slightly high from the seizure meds they have me on). I'm consistently amazed by how much easier the experience has been than I expected.

I'll be sure to keep you posted over the next few weeks and months -- letting you know if this really was a full success or if there are speed bumps to come -- but I wanted to let you know that all the fear that I felt leading into the surgery is gone now; I feel so relieved to have had the procedure, and so lucky to live where I do and with the health insurance I have. So lucky.

Feel free to ask me any questions -- I'm pretty new at this (I get that a week is no time), but I'm happy to do my best to recall the immediate aftermath of the surgery, and answer questions about the minutiae of it all if I can!

Take care,

Sarah

2

Thank you so much for posting this. We are waiting to hear back from the neurosurgeons to tell us how they will operate on my dad's aneurysm - which is the same as yours, 5mm on the left middle cerebral artery.

It's reassuring to read stories like yours, I'm so glad you posted it. Please keep updating us. I will be very interested to know you're getting on and I hope you continue to recover nicely.

3

Thanks for your input. I just got back from meeting with a second local surgeon about my 10 mm unruptured wide-neck saccular aneurysm on the PICA. It is in a rare and difficult location to treat. I have gotten mixed opinions so far locally and would like to get another opinion or two in either NYC or Philly. I live in Bethlehem, PA--so I'm halfway between. Maybe I will look into your Dr. I think I have had that name referred to me somewhere before. It's always nice when you hear a name more than once. The idea of a craniotomy scares me to death. Honestly, open-heart surgery sounds better to me than this. But, if I do have to have one, it is good to hear positive results. Thanks for posting. You are right, more of us need to post the positive outcomes. Although it is understandable that most are seeking answers to problems. However, sometimes all the posts can get scary and overwhelming at times for those of us still seeking treatment. That is why I have not been on here for a while--that and being busy and going for tests and follow-ups, etc. Good luck in your recovery and do post on the process. Thanks again!

4

Congrats on your recovery! I had the same surgery six months ago (4mm mca) and the best advice I can give you is to rest and be patient with yourself! Recovery is quick in the first month and then it can slow down a bit. You’ll get your energy back in no time!

5

Hello,

first of all I am so happy to hear your positive Story.

I found out on April 20 that I have a 5mm unruptured Aneurysma on the left. I will have DSA angiographie this monday where the doctors will decide if I should co for the clipping or the flow diverter surgery.

I am scared as hell. I have three small Kids and I tried think about not getting i fixed but I am scared of every step I take. But at the same time I am so scared not to wake up after surgery and the pain I might cause my Kids.

How did you manage to get your emotions controlled before surgery? How did you feel confident?

6

Hi Tinchen,

First, I'm sorry you just heard about your aneurysm -- it's so scary when you first hear -- it's a terrifying word! I'm very very happy that you found out about it, though -- I spent four weeks thinking about how lucky I was to know that it was there, to have a chance to have treatment before it ruptured and something terrible happened. That helped me a lot, and I hope can help you as well.

I have a 17 month old daughter -- and I totally understand your nervousness about your kids -- it's so hard to think through the procedure and not worry about what might happen/how it could go wrong. But here's the thing -- the risks of surgery are far far less than the risks of rupture, and what you choose to do will give you more time with them, not less.

For me, controlling my emotions was about being very logical in the lead up. I got all the statistics from my doctor -- risks of leaving it, risks of rupture, risks of surgery -- and it became really clear that there was no choice for me. Surgery was the answer, and the only way I would ultimately feel comfortable. After that, it was just a matter of waiting, which was the hardest part, because the fear becomes overwhelming if you let it.

You just have to remember that this is all for your kids. Every bit of it. And it will work out beautifully.

Let me know what happens with the tests and what you decide to do -- I'm pulling for you!

xo Sarah


tinchen said:

Hello,

first of all I am so happy to hear your positive Story.

I found out on April 20 that I have a 5mm unruptured Aneurysma on the left. I will have DSA angiographie this monday where the doctors will decide if I should co for the clipping or the flow diverter surgery.

I am scared as hell. I have three small Kids and I tried think about not getting i fixed but I am scared of every step I take. But at the same time I am so scared not to wake up after surgery and the pain I might cause my Kids.

How did you manage to get your emotions controlled before surgery? How did you feel confident?

7

Thanks, Kit -- It's so useful to hear that after a month things will slow down. I'm on Keppra still, and it's making me feel kind of out of it, I can't wait to be done with it!


Kit34 said:

Congrats on your recovery! I had the same surgery six months ago (4mm mca) and the best advice I can give you is to rest and be patient with yourself! Recovery is quick in the first month and then it can slow down a bit. You'll get your energy back in no time!
8

Hello Sarah

thanks for your quick answer. How did and does your daughter react to the scar how is it for you to pick her up cuddle her or do all the mommy duties? My Kids are 7, 3 and 17 months old. How did your face look after surgery?

how do you feel now with the mommy duty and fun. can you Play laugh and just be a mom or did it Change?

9

Hi Tinchen,

Hope you're well -- did you have your test? What did the doctors say?

Sorry, but I only just saw these questions! The first few weeks were a pain, honestly -- no lifting the baby, no driving, and I was pretty tired, so it was tough with the kiddo. But she got really used to it, in fact, she became a great walker during that time! She didn't mind the scar at all...but the Drs didn't shave any of my hair, so it is pretty easy to hide. When I came home, I had a swollen eye -- looked like I'd been punched in the face -- and she didn't really mind that, either. She's been very cool about the whole thing.

Aside from periodically having to sit on the couch while she plays instead of get down and play with her, things were pretty much the same once I got home. I don't think she really noticed much difference -- except maybe that she was being lifted more by Daddy. And now, 5 weeks out, off the medication, things are mostly back to normal.

Hope this helps!


tinchen said:

Hello Sarah

thanks for your quick answer. How did and does your daughter react to the scar how is it for you to pick her up cuddle her or do all the mommy duties? My Kids are 7, 3 and 17 months old. How did your face look after surgery?

how do you feel now with the mommy duty and fun. can you Play laugh and just be a mom or did it Change?

10

Congratulations on your recovery!!! I sincerely appreciate you sharing what happened between the beginning and the end of your “cruise”. I was diagnosed three weeks ago with two 3mm unruptured aneurysms. My first neurosurgeon appointment is next week. Please continue to share. Thanks and all the best to you.