Hello everyone!
First of all…I want to say “Hi” and “Thank you” to all of you! I am not sure how I would have dealt with the challenges of the past months without having this forum and being able to find conversations, experiences, advice and support on nearly every concern / matter that scared me, surprised me or left me with a big question mark
My name is Tanja, I am 45 years old, I am from Germany and Ive had clipping surgery for a non ruptured aneurysm in the ACM on August 2nd this year. Recovery has been challenging especially because the neurosurgeon send me home after 4 days pretty much saying that Id be alright after 2 - 4 weeks and could just resume normal life.Besides this misinformation the doctors have done an amazing job!)
I had acute hearing loss on the opposite side of the incision a few days after surgery. Seems to stem from muscle problems in the neck due to the surgery position and the fact that I still cant sleep on the side of the surgery. Getting physiotherapy for that and it is getting better. The tinnitus has not vanished completely though and gets worse from time to time.
Still cant open my mouth fully. I wonder if I could kiss if I wanted to
The weird feelings inside my head (I always said that the construction workers are on site again when it started) have subsided over the months.
I am still suffering from sensory overload and have to wear ear plugs in a lot of situations. Cant deal with the world when there is too much going on around me. But this is getting better, too.
I wasnt able to go back to work fulltime yet. I tried after two months but since I have a stressful job (working in a school) where I have to talk a lot and its always a lot going on…I temporarily had to cut back my hours. My brain showed me that it was too much. I started having trouble finding words, used wrong words…or couldnt get the words out of my mouth…sometimes I forgot what I was talking about. Now that I am working only 4-5 hours per day that happens less frequent.
I still suffer from anxiety when I feel weird or I have a pain in my head or when it comes to things like drinking alcohol, going out, doing sports. Have not done any of these things yet. I hope that this will resolve with time…I reckon that I just have to learn to have faith in my body and my health again.
I do have a dent in my forehead now and I am wondering if this will ever go away - any experiences?
In two weeks I ll be flying from Germany to Australia. My neurosurgeon said that flying wont be a problem…but I am still scared. It will be two long haul flights in a row and Ill be by myself. I hope that I wont panic in case that my head starts feeling weird. If you have any tips or recommendations on flying after the surgery - please let me know!
Besides all these “issues” I am very grateful that my aneurysm has been found and that I had the option to do the surgery. and - as I said - I am grateful that you guys are sharing your experiences in this forum in order to help people like me, in order to help each other. Thanks again.
Just wanted to share my experiences after reading yours for quite a while now.
@Tanja
Hi Tanya. I’m so glad you found us, I have been in this group for almost two years and it has helped me a lot reading what other people have been through. I had my rupture in October two years ago and it was coiled, six months later I got a stent inserted and more coils. One year after the second surgery I went to visit my family overseas, my neurosurgeon said that I could travel and that nothing could happen in my brain. I traveled by myself, about 20 hours in total and like you I was a little bit worried how it would feel.
I tried to ‘zoom out’ from all the sounds and lights using earplugs and an eye mask, but after a while I realized I didn’t need to use them. Long story short, everything went well, no headache or any other problems. I am now overseas visiting family members for the second time as we got a new little grandchild. I need more time to rest after the flight, but that’s ok. I also brought some extra snacks and a sandwich just in case I needed some extra fuel, if I skip a meal I get very tired.
I realize that we are all different, but maybe it feels good for you to hear about my experience.
Good luck with your travels.
@Tanja
I work at a school as well but have not returned and tomorrow will be a year since my rupture and clipping. I can totally understand about everything you are going through. I am still sensitive to overload and I get overwhelmed easily. My words get lost and sometimes I don’t have the words at all. I just started at speech therapy. I had to go for counselling because it was a total life change 34 years at the school to being at home… big difference. How do you find working at the school? Did they give you adaptations to help with some of effects of the surgery? Did you get a plate in your head as well as the clip? My doctor just said I should be working on my balance and light workouts. I have had to advocate for myself because the doctors here aren’t doing it. I just want you to know that I know where you are coming from! Yes, and reading all the experiences has helped me a lot. It has allowed me to accept the things I can’t change and work with my new “normal.”
I want to share with you that I had something called an AVM which needed surgery to avoid a bleed and I have to tell you that, even though I had “only” an embolisation procedure to block up my AVM, the feeling of weirdness from (in my case) altering the blood flows round my brain was very real. In the same way as you, my surgeon told me after my 8 week angiogram that “all was fixed” and I could simply “resume normal life”. Well, it isn’t easy, as you now know.
So, be of good courage! You are fixed. You are getting better (even if some weeks it seems to go backwards a little) and you will get back to a better position than you are in today. It mostly takes the most unreasonable amount of time.
I can tell you it took me at least 18 months to 2 years to feel back to being ok. But I got there and I’m back to being me.
I found that the aftermath of my embolisation was that I listened to all the new noises in my head and honestly, it is best not to. It is very easy to be disturbed by the new feelings, the weirdness and the sounds but I reckon some of the sounds were always there, it’s just that we were never hypervigilant about them like we are post diagnosis. Ignore them and do as much of normal life as you can and hopefully much of it will fade into the background, like it did for me.
Welcome Tanya! I have the highest respect for teachers and was happy for you to read that you’ve gone back to teaching. Good for you! You’re ahead of many in that you’ve learned to be your own advocate for what you need, another positive.
I flew by myself a week or so after my third coiling attempt. BH did everything possible with the airlines. I was even put in a wheelchair which was nice since I walked like a drunken sailor back then. LOL. Just a short roundtrip flight from Charlotte NC to Washington D.C. but I was quite anxious about it all. BH was working and had to go to the scheduled meetings in three States so couldn’t fly with me. The flight to D.C. was exceptional, the return flight, not so much. But I had joined a lobby group for brain aneurysms and was exhausted.
I should have taken some ear plugs and listened to music or a book instead of the two teachers breaking all kinds of rules on confidentiality and they had decided to sit together instead of allowing me my assigned seat. I prefer an aisle seat so as not to be blocked in, a byproduct of my work. I became quite agitated about it all as they worked in a school that was in the county were I worked as a SW and I could easily identify the families they were discussing as they used full names. This was remarkable as I look back. Who would have thought we would be on the same plane? Then one said something derogatory about my speech issues and I said rather loudly that I was brain damaged and what was their (cuss words) excuse. The flight attendant was able to calm me down or I’d probably have lost my seat. Before I ruptured I was rarely agitated in public having been a Social Worker stress was expected. I knew a lot of teachers having had to visit schools and I’d never met these women, probably a good thing. I was never so happy as to land back down and the very kind flight attendant sat with me waiting for the wheelchair seems she knew a few people in her life that had brain aneurysms.
As @oct20 recommends take snacks. I’d add to that to make sure the snacks are high in protein and make sure to stay hydrated. Have books and music you like on your phone and/or tablet so you can escape into them as needed. Hopefully you know how to do some version of relaxation breathing as it can really help with nerves. If you feel you won’t be able to navigate the flight changes etc, perhaps you can ask ahead of time for assistance from the airlines. In the United States, people who need assistance can often board early.
Your brain will continue to heal, be kind and patient with yourself. Treat yourself as you would one of your students. The majority of teachers I have known are very kind, empathetic and patient with their students. Life is allowing you to treat yourself the same way! How wonderful is that?!
Hi Tanya,
Happy for you that your aneurysm was caught. I had surgery August 2019. I had ticking in my head for a while. Still do once in awhile. I definitely had a sensitivity to lights and noise. I felt a bit over stimulated. I wasn’t using the wrong words but felt like I couldn’t annunciate them as quickly after surgery. By six months I felt normal. I also do have a small dent near my temple. Good Luck.
Thank you for the information. I am having surgery in February, clipping. Any information is helpful. I am anxious about all the after affects, but we are all different and recovery will be different. I am concerned about the hearing loss as I only have 1 ear that works and the surgery is on that side. Any more information people can give will be appreciated.
Thank you so much for sharing your experiences! Reading your words makes me feel much better and more confident on flying in two days! I hope you are having a terrific time with your grandchildren!
Hello Suszanne! Thank you for the answer to my post! I am a school psychologist and - in contrary to all the teachers - I have my own office at school. Which means I can hide in there whenever it gets too much and i feel overwhelmed. The people I work with were and are very supportive but they cannot erase the usual daily turmoil at school… I realized that I am the one that has to practise self care…and I am still practising every day. Its not that easy when you have been working “full on” before.
I do have 3 clips, a few screws and a tiny plate in my head now. I am trying to do yoga on a regular basis because I find that it helps with balance and reduces stress. Have you tried that?
Lots of greeting - Tanja
Thank you so much! My carry on bag is packed with healthy snacks and I will drink plenty of water (…back in the days I used to drinks beers ;)). I have downloaded a good series on my PC that I can watch. In case anxiety gets overwhelming…Ill try to do some full Yoga breathing and I hope it will work.
The incident with the two teachers sounds so unreal! Really …what are the odds What an unpleasant journey!
And yes…you are right: Practising self care is new to me — but it feels so good!
Hello! My doctor and the physiotherapists (and myself) are sure that there were muscular reasons for the hearing loss. Ive had neck and shoulder issues pre surgery and after the surgery (till today) I can only sleep on the non surgery side (which is where I had the hearing loss). The hearing loss got better after three weeks, the tinnitus is getting better since Ive started physio therapy twice a week.
I had another hearing loss shortly after a physio session…that one got better after a few days. The more I train my neck muscles the better gets the tinnitus. They gave me a high dosage of cortisone for the hearing loss but I didnt take it…because I felt that I had gotten enough “drugs” during and after the surgery and I didnt want to “disturb” the healing process of the head wounds. Got better without taking the cortisone.
@Tanja
Good luck with your travels. I hope it goes well. Maybe you can purchase an eye mask and earplugs at the airport so you can relax and zoom out. I came back from my trip a few days ago and the return flight went well, even though it was some travel disruptions that caused delays.We are all different and react differently, but this is my story. And yes, I had a wonderful time, I hope you will too. When you have time, please tell us how it went.
All the best to you
@Tanja a School Psychologist! My degree was in Dev Psych. I miss working with kids, less now then right after I ruptured. . Please do come back and let us know how your trip went. Apparently I’m living vicariously through all you world travelers.
@Tanja
Hi Tanja! I hope that when I get back to work that there will be adaptations for me to go back and work with the students. I will need to practice self-care for sure. Before the rupture I was working full on like you. the plate moves and causes some pain still. I think I would need a quiet room because of the hustle and bustle as well as the noise. I know now that I might have to wear ear plugs for the noise. I will not give up my daily workouts after school because it releases stress. When things get stressful, I have pain in my neck that runs down my spine. When I come away from that situation, my body hurts. I’d like to try and keep that to a minimal. I will have to try yoga as well. Thank you for sharing.
Happy Holidays - Suszanne
I haven’t had my craniotomy yet, April27th. Prior to my surgery I really wanted to see my granddaughters who both turn one this year and live out west while I’m in Maryland. I asked my neurosurgeon and she said flying is very safe with aneurysms before and after surgery so do what you need/want to do. I asked how can it be safe since it’s such high altitude and she said airplanes are pressurized so there’s minimal if any affect.
I then said well what about once I land since one lives near Denver, Colorado and the other in Salt Lake City, Utah. She replied that could be troublesome so it might be best to make other plans where they come to you or meet where the City altitude is similar to here!
Wow once she explained and answered me - it made total sense. I haven’t asked how long after surgery I have to wait as it’s much less expensive for me to fly out rather than 6 of them flying here!
God bless all of you and I’m very glad I found this group prior to my surgery! Tons of kind people, information, and possibilities of what may or may not happen to me during or after surgery.
Just wanted to update my question from months ago just in case that others will find the info useful: Since December Ive flown 4 long haul flights - all of them without any problems! The jetlag (time difference between 8 and 10 hours) has definitely gotten worse but the flying was ok.
Thanks again for all your answers back then…I have followed all your advice, maybe that is why it went so well!
What an unpleasant journey!
. Please do come back and let us know how your trip went. Apparently I’m living vicariously through all you world travelers.