Hello to everybody out there in this community.
This is my first post as a partner/carer of an aneurysm survivor.
My healthy and fit husband in his mid 50s was diagnosed with a large basilar tip aneurysm on the 29th of April. Bad headaches were the only symptoms prior to the diagnoisis. He had the emergency coiling + a stent procedure done here in Sydney/Australia.
He came through it all so well. 5 days in ICU and another 7 on the step down ward.
Came home happy and hopeful.
Back in hospital 3 weeks later for more coils! This time only a 3 day stay, and far less dramatic.
Another hospital visit for a couple of nights due to a dizzy spell.
Well, it has been a horrible roller coaster ride for him and for our family.
He’s back home now and some days are good, others are not so good. After the initial good recovery, he now has days of feeling very tired, and we are worried if this is ever going to end. Good days, bad days etc. - not sure if anybody feels the same? He was going to start back at work on a part time basis after 2 months off, but he’s not up to it. He is so very frustrated. Any positive comments would be much appreciated.
Hello to everybody out there in this community.
The fatigue will end eventually. Everything in baby steps. Remember he has to stay hydrated and eat protein to help his brain heal. I cannot stress how important it is. With the proper hydration and protein intake, the fatigue will lessen
Set small goals, nap when needed but make sure he can sleep the whole night if he is used to working days.
Caregivers have a special place in my heart. You all do the worrying for us. Make sure you take a break and are rested. You can’t take care of your husband if you don’t take care of yourself first.
Each time I’ve been recoiled set me back but I come out of it better than before eventually. I ruptured at age 53, you wouldn’t believe how far I’ve come since then. Keep positive!
Two years ago, I had just turned 40 and had a ruptured brain aneurysm. I still have good days and bad days, but I’ve also continued recover. I think that’s universal for people recovering. For me, I’ve been able to adjust to what had been a very overwhelming and surreal experience. That has helped to make the experience less frustrating, although it still can be at times. It may seem like a never-ending experience, but I’ve found as I’ve adjusted, it’s become less frightening. I hope things continue to be well.
Yes, the recovery doesn’t seem to run like we would expect it to. It seems to be a windy road, with a few dips thrown in!
Being able to read other stories does help a lot. My husband will have a follow up MRI in about 10 days, so fingers crossed. Will do our best to stay positive. Many thanks.
Thank you so much for your reply. This forum is very helpful. So happy to hear that you’re recovering well. My husband’s aneurysm did not rupture, but it was looking very angry. He has been lucky, although he finds it hard not to be feeling his normal self. Hopefully things will settle down with time. All the best to you.
Thank you so much Stephen. Reading the positive stories it what we need at the moment. All the best.
I hope the MRI comes back positive! Let us know how it goes
For some reason, fatigue seems to be the #1 issue that goes hand in hand with brain surgery! (not an actual fact, but based on my own experience and what others say here).
It definitely will get better. Have him do brain game books (it really helps!). He will need a lot more rest up front, then once he starts back to work he probably won’t want to work as long days for a while.
I am 2.5 years post surgery (but not coiling) and while I am able to full on work-out really hard, I still feel that I can’t work-work crazy hours anymore. My body hits a wall much earlier.
thank you for taking the time to reply. Yes, the body really knows when it want’s to rest. I think it is learning to adjust to the new normal, and not to freak out about every strange twinge or small pain going on in the head. I think the mental fatigue is now kicking in as well. We will get there. Thankfully this support group is there for us. All the best to you.
I just thought I should echo previous posters. It is a marathon, not a sprint. When I got home from the hospital, I was trying to do everything I could to put this behind me. In retrospect, what I should have done was take my time. I wanted people to know I was alright, but in the end, because the process takes so long, people just wondered why and then I felt that pressure too.
Be patient. Good days and bad days are the new normal. Low energy is not uncommon. I am thankful for the days that I feel like its the old days. But that only happens once in a blue moon. Naps help, but I try not to do that too often as it screws up my night sleep.
I was once told during my therapy that my brain now works five times harder to do the same thing that I was doing before. Therefore, it stands to reason that I am going to get tired faster. I think of it like my cell phone battery. When my phone was new, the battery was great. After a year or so, it seems like the battery doesn’t charge as well and it peters out quicker. Now, my battery never full charges, so you just have to figure out ways to preserve battery life. If I know I have a big thing at night, I have an easy day. If I have morning work that is demanding, then I try to schedule an easier evening. Life just takes more thought and planning. Its less flying by the seat of your pants.
Best of luck!
Keep the good work going it will get better, I’m almost seven years out and I’m still tired. I do have issues of being dizzy but it passes
Quickly. I’ve been lucky considering they said I should be gone or a veg, I’m working full time
And feeling pretty good I still have memory issues and Blindspot but grateful that I can drive.
I can’t stress enough - have him REST REST REST lol. Sometimes the best you can do in a day is eat and shower, and other times you can do a walk or some chores. Believe me when I say this though, resting is the #1 healer! The more he can rest, the quicker he’ll get to his new normal, which may be back to where he was before, or it may be truly a new plateau. I had a large/giant (2.3cm) vertebral/basilar aneurysm that didn’t rupture, but it did need coils/PED stents, with a second surgery for more stents about 8 months after the first major one. I had no idea that just those non-invasive surgeries could cause so much recovery!! I had headaches for years (this happened in 2012), but rarely get them now (piercing, pulsing, stabbing, throbbing pains right where the aneurysm is located, upon standing up too fast or moving around much). Fatigue plagued me up until I realized I was iron deficient, just two years ago, but that didn’t help enough taking iron supplements and now I’m taking something from a naturopathic doctor that helps my adrenal system, as it seems to be shot. No idea if any of those are related to my annie, but I was perfectly healthy before it. In the very beginning of recovery I had some aphasia - I couldn’t find the right words (I could picture the “thing” in my mind but I couldn’t verbalize it), and occasionally still do but I am pretty good at talking myself around until I get it out. The worst part is probably telling oneself that this was an actual brain surgery, not just some minor procedure, and getting those around us to understand that too, despite the fact there’s not much in the way of scars to show for it. When people don’t look sick or hurting, it’s hard to understand that the mental game is just as difficult as a broken arm or knee replacement or similar. Those things take a lot of time to heal, but there’s a visual cue to see it all and with the brain it isn’t so obvious. Maybe journaling will help to see the progress he makes, whether you write about it or he does or maybe even both. At any rate, thank God he’s home, and I pray for the best outcome!
thank you Rich,
I really appreciate all the feedback and advise. It’s been a couple of good days, we take that any day! All the best to you. Heidi
Thank you for taking the time to respond. Reading your story has given me hope for the future. My husband’s aneurysm is also a basilar one. He also presented with continuing headaches (mostly above his right eye) and was sent for a scan straight away. He had the procedure 2 days later. His aneurysm had not ruptured, but the doctors believe that there have been a small leak. He has had two coiling procedures, and a number of cat scans, angiograms and MRIs. All of this has quite literally pulled the rug out from under him. It all happened so fast, and he spent many nights in the hospital and the ICU.
He’ll have a follow up MRI this coming Monday. Fingers crossed that it will all be ok, and that he can relax a bit. This all has been emotionally taxing as well.
I’ll make sure that he takes his breaks and rests. Your advise is much appreciated. All the best, Heidi
I have seen you mention several times about drinking water and eating protein. Do you have a certain amount you dear daily and a specific eating plan. Also, I know you have had your treatment at WFBH in Winston Salem as you have shared in the past. Who is your neurologist in WS? I also had my repair in WS and am wondering what neurologist is following you? Thanks so much!
My Neurosurgeon is Dr. Stacey Wolfe. When I first met her it was Dr. Stacey Quintero-Wolfe. I love her, she is a great match for my unique sense of humor which is hard to find. She would get a little bossy in the beginning, but she has the right roflol.
I don’t travel all the way to WFBH for Neurology. I was seeing one in Catawba County, Dr Robert Yapundich who had an excellent team. He and his partners sold out to Novant and I had troubles getting in to see him when needed. I talked to my PCP and she suggested Atrium Health in Lincoln County. I saw one once and then that one moved to a different location and now I see Dr. Romanowski who is also a good match for me. Dr. Romanowski is not only smart as a whip, he’s as honest as the day is long. A perfect match!
My diet is/was 90 grams of protein a day. I had to drink 3 bottles of Gatorade (The $1.00 size) each day and drink as much water. This is after any anesthesia procedure now. I usually drink 4-6 big Tervis cups of water per day and still try to get in around 40-60 grams of protein.
Thank you for your information. This is very helpful! I am still being seen in WS through the Novant team there…Love them all! I love your comments on all these posts! Thanks again!
There will be more and more good days as time goes by!
Thanks so much suzyq32, it means a lot to me! I think it’s fantastic when we have a team of medical professionals we trust. Isn’t it amazing how the big medical groups are taking over the rural medical groups? I understand it on the financial level and I don’t blame them with the cost of operating a business. I have certainly learned that a Doctor’s Office Manager is worth their weight in gold!