I have a small (3.5 mm) aneurysm behind my right eye. Though the aneurysm is small, due to family history, I have decided to have surgery. I have a genetic blood clotting disorder which makes endovascular treatment not an option for me so clipping is the only solution. Deciding to treat the aneurysm was a weeks long process for me as the idea of opening my skull and touching my brain is distressing to me. I’ve heard of people having permanent personality changes and this frightens me. After three weeks of research, and with the help of the posts I have seen in this support group, I have come to terms with the surgical option and have chosen a surgeon at UCSF to perform it. I am scheduled for the 18th of this month. Now that I have decided to move forward I’m actually excited to have it done and to be able to know that the aneurysm is gone. I am hoping some of you who have gone through this can share with me what you felt the biggest challenges were for you post surgery? Any advice will be greatly appreciated.
Thanks
OHH HELL YEA I had a huge battle with this. That thing (my brain) makes me who I am and they’re going to go poking around in there 
Eventually I got to the point where the fact of the matter was it had to happen, I had no choice. Was there changes? Yes. I must say initially I didn’t really see it, but those around me certainly saw changes. My patience was VERY small, previously this was not an issue. My poor wife… …let’s just say I pushed her patience at times. My tolerance was nil. Now, both of these could have been pain related as I was in absolute agony. For me, post craniotomy, the headaches were off the scale. I’d been dealing with headaches for decades but I couldn’t believe pain like that existed. Just WOW!!!
I was my own worst enemy at times. I wanted to get things back to normal ASAP and I pushed myself to do that. This was the worst thing I could have done. Neuro recover is a slowly, slowly process. DO NOT PUSH YOUR OWN LIMITS. Listen to your own body’s signals, it will tell you. The signs maybe subtle, at first, but it will tell you. I didn’t listen. I pushed myself too far, too soon, doing myself more harm than good, ending up with me back in hospital having further neurosurgery. My body was telling me, I didn’t listen. I told myself I was building stamina by pushing those boundaries.
My recommendation, take the time your body needs to recover. A broken bone may take 6-8weeks to heal, but your brain is not bone and it can take much longer to recover.
Do not set time limits on your recovery. It takes as long as it takes. I set myself time limits, but then when I didn’t met that time limit I got really frustrated with myself. Others may have expectations too, but none of us heal at the same rate. Some people can go through all of this and be relatively unaffected and yet others can have a minor neuro issue but have a catastrophic outcome.
This is a time to be kind to yourself.
Merl from the Moderator Support Team
Welcome to our group ahahovan! While some members can have drastic personality changes, many do not. The ones that do great rarely come back after a couple months post surgery so unfortunately for us, we don’t get to read their success stories.
While some of the brain’s messengers can get disrupted, rest assured, your brain, no matter your age will find new routes. It takes longer for those who rupture than those who don’t.
UCSF has an excellent Neurosurgy Dept. I looked them up a couple weeks ago for another member. I believe you’re in really good hands!
I’ve never had a craniotomy, but there’s some things we should all follow after any procedure. You’ve probably read my mantra as I call it now. Eat protein, your brain will need an incredible amount of protein to heal. Ask your team how much you should eat. Stay hydrated. Not only does our brain need it, but it will help avoid constipation. I’m guessing that constipation is just as bad for someone with a craniotomy as someone with coiling. We need to avoid straining. Ask your doctor.
For personality changes, some do, some don’t have changes. It’s the unknown with brain issues. I’m guessing the doctor doesn’t know but would have a good idea based on the patient population they’ve served. What I do see is those members who go into a procedure with a positive attitude come out with a positive attitude. Even if you or others see a change, never lose a good attitude.
As Merl said, rest, don’t push yourself. Think of Aesop’s fable about the hare and tortoise. You need to be the tortoise. Remember slow and steady wins this race!
Good luck with your procedure and please touch base with us both before and after…
Thank you this is extremely helpful!! I hope all is well for you now.
I hope to be one of the success stories that checks in to tell you about it! Thank you for the dietary advice as well. I tend to forget water and will start now!
Remember me saying “…ending up with me back in hospital having further neurosurgery…” Well, that wasn’t the end of the story. I have since required a number of further neurosurgeries, each one has knocked me more and more. My initial surgeries were back in '96, my last was in '13 and since '13 things haven’t been great.
I can be a little pigheaded at times, OK, so a lot pigheaded. I don’t like being told what to do. Life used to be: I had a task, I made a plan, I completed the task. Job done. But now ohh I have to break the task up into steps, I have to pace myself, take breaks and LISTEN TO MY BODY. This is all very foreign and difficult to accept at times and I HATE it.
I often wonder is this all because I ‘pushed myself too hard’ way back in '96 and honestly, it could well be. I didn’t listen and just pushed on through. DOH. Since '13 I haven’t been able to work and that has been REALLY frustrating. Now I often say how annoyed and frustrated I am with all of this, but I am more annoyed and frustrated with myself.
So PLEASE listen when I say DO NOT PUSH YOUR OWN LIMITS
Merl from the Moderator Support Team
I am almost 9 weeks out post op and I have to agree with everyone here: Don’t push yourself. Listen to your body. Rest. Hydrate. I had to make the same choice as you (mine was also small on my anterior communicating artery) but I lost my brother due to a ruptured aneurysm and I wasn’t about to let my parents lose me as well. I will say that if you have the opportunity to get on any of the Zoom meetings (they announce them on the Facebook page) please do. It doesn’t matter if they are with the hospital you are going to or not. Listening to the neurosurgeons talk about the procedures and being able to ask questions just reassured me that I was doing the right thing and I was going to be in expert hands : )
Thank you for sharing! I wish I would have reached out to this group before my surgery instead of after. I had a 2mm aneurism removed by surgical clipping as well just about two years ago. I had high expectations of a 1 month recovery and the frustration of the actual recovery was so overwhelming. I really thank this group for the support it gave me. The recovery is a process that takes a whole lot of time! For me, over a year. Good rest, good diet and hydration, everyone has great advise. Be kind and understanding to yourself is mine. You will have head aches, pressure, dizziness that doctors won’t acknowledge and that’s ok, you know it’s normal and you will get through it. Do not bend over for a very long time afterwards or pick up anything heavy. Sleep with your head elevated. Always rest when you need to. My biggest problem was going back to work and staring at my computer. It was hard on my eyes and on my brain and still is. I wish I had taken a few more months off before I started back. Also, eye protected glasses makes it easier but I still can’t spend a lot of time looking at screens. I wish you the best! Good luck to you! You’ve already come so far knowing what to expect.
My aneurysm was also behind my right eye and I had it clipped in 2017. Mine had ruptured in 2013 and was coiled but not fixed completely. My clipping surgery went very well with no issues except what I already had from the previous rupture and those did not get worse after clipping. I went in the hospital on a Wed morning, had the surgery that day, and went home on Sat morning. We even stopped at Walmart on the trip home. I was able to pretty much do all I could do before the surgery as soon as I came home, just got tired more easily for a while. And headaches worse for a few months but I had those before surgery. I was driving in less than 2 wks. I felt the best after they removed the staples about 10 days after the surgery. In that location expect a lot of face swelling, bruising and black eye. You’ll look like you just finished a boxing match. They may have to cut your temporal jaw muscle which will be sore a long time. Immediately start doing jaw exercises like opening your mouth as wide as you can and moving your lower jaw side to side. Don’t expect to be able to open your mouth much at first but with the exercises you’ll get back to normal. You’ll need a very soft pillow to sleep on and you won’t be able to sleep on the surgery side for some time. Use a gentle no tears shampoo until the incision heals completely. Other shampoos may burn - learned that the hard way. I did not have any personality changes from the clipping. I did have some from the rupture but those cleared up over time and the clipping did not bring them back. For brain surgery, mine went surprising well and recovery was not bad. I only took ibuprofen both in the hospital and once home and I had a rx for a muscle relaxer that I took for a couple of months that helped a lot. Best wishes, you’ll do fine!
Yes, it has been comforting to hear other stories of recovery. It has been almost 8 months of a long arduous journey. As a workaholic, it was hard for me to take a day off since post-surgery. I made several attempts to return to work and my head pressure, headaches, and neck pain intensified. I ended up in the ER with dangerous spikes of high blood pressure. Although it was difficult, I finally decided to take a year off and rest. Our blood vessels take a long time to heal and some doctors just don’t understand unless they have gone through this. The pain, frustration, and anxiety is normal even though doctors seem to be clueless. I had to accept that recovery is a very slow process and rest whenever you can.
Definitely going in with a positive attitude helps come out with positive feelings. You may need some physical therapy to get adjusted to possible changes but I found this helpful. Best wishes to you!
Jj
Best wishes for a successful surgery and recovery. I’m sure you are in good hands. I have read about nuerosurgeon’s training. They have a very long residency. They are amazingly talented, dedicated and driven individuals. Prayers are with you.
Thank you I will definitely look into the meetings. I’m glad you got it taken care of and I’m sure your parents feel relieved. I’m sorry about your brother. That must have been devastating. It seems to run in families… my grandfather had one rupture at 59 and was paralyzed on his left side and a cousin had one at 50 that she did not survive. It would seem those relatives are distant enough but having two of them I think it’s wise for me to have the surgery.
Thank you for the advice. I’m really hearing the same advice about hydration and rest. I will definitely follow it! Luckily my Primary care physician is has set my recovery window at 10 weeks before I need to return to work. If I’m not ready she is prepared to give me more time. My job is very stressful so I’m reluctant to put undue stress on myself while healing. Thank you and I hope your doing well and wish you the best.
Watching this video was the most helpful thing for me. This girl really captured what she went through. https://youtu.be/QRtQeqVuXFs
- Ice Ice Ice - that will help the most with pain, especially in the hospital.
- if anti-nausea med doesn’t work, ask for a different one!
- For me, it took about 2 weeks for me to start feeling better.
- Get some brain games books and work on those.
- My brain was completely fine after surgery, it was about 6 weeks later (I think) that some memory loss hit, and that was when I started brain books. I actually BOOSTED my IQ!
- Have someone care for you for 3 weeks. I was like a baby after surgery, I had zero energy and needed to be taken care of. I also had zero empathy. I would recommend pre-making dinners and/or ordering boxed food service.
- Your face will be swollen afterwards, so bring a big hat if you are flying home. it will go down over the course of a week.
- Get some nice new p.j.'s as you’ll be living in those for a couple of weeks.
- For some reason, brain surgery affects your endurance. You will just not have the ability to work as many hours or endure stress. Your body will just come to a halt (as if you run a marathon). It’s just a fact. It gets better over time but my general doctor said to expect up to 3 years.
Good luck! You will be fine!!!
It is definitely hereditary in my family as well. My dad also has two cousins die from burst aneurysms. I just felt that surgery put me in control of the aneurysm. There are always risks with surgery but those risks are far less serious than actually experiencing a burst.
I attended the zoom meeting with Northwestern and it was very informative and made me really feel at ease with my surgery decision.
I had a small 4mm, unruptured aneurysm behind my right eye, too. I was 59. The aneurysm was not causing me any problems, but after consulting with my wonderful neurosurgeon at UTSW in Dallas, I decided to have it clipped. I didn’t want to live in fear of it rupturing. It was a good thing I had the surgery because afterward, he said my aneurysm was ready to pop. How lucky that I had gone ahead with the clipping! My surgery was in July 2014. Like you, I was afraid of having surgery on my brain. Who wouldn’t be?! I put my faith in God, my neurosurgeon, and luck. Happily, the surgery went fine and I’ve had no problems since. I feel like my normal self and friends and family agree. My recuperation was steady and uneventful. I hope you have the same happy results.
I am so glad to hear that! Sounds like you have a wonderful doctor! So as you can tell we can’t stress enough the importance of taking it slow for a long time. My thoughts and prayers are with you!
Wow. That is a small aneurysm. Did they say it was small? Or give you alternatives, like aspirin? It is normal to be nervous. UCSF has a fine reputation. If they give you Physical Therapy after… it is good to take it. Will be sending you good/ loving energy. You are very brave!
Thank you for the good energy! Yes they said it was small and that I had a choice to monitor it or have surgery. I spoke with three doctors and I think the best advice came from the UCSF doctor who said of those two choices, both have risks and i have to decide which risk I am comfortable living with. He also explained that small aneurysms can bleed that it really depended on the vein health. Since I have two family members who have had ruptured aneurysms (one fatal) I’ve decided I’m not comfortable living with that risk. I’m looking forward to it being gone!