14 January 2025 - Welcome 10 New Members!

[Lindsey]

Hello everyone! I hope everyone has had a great start to the new year! Recently, we have had many new members join our community, so please help me introduce them!

@theresa0624 is in New Jersey, United States. Theresa is a caregiver for her mother who had a ruptured brain aneurysm in August and is currently in sub-acute care.

@jjajjj is in North Dakota, United States. Jaimelynn recently had coils placed in her unruptured aneurysm.

@javaphile is in Michigan, United States. Janet had a ruptured brain aneurysm that was treated with coils via the groin artery and was in the ICU for 10 days.

@caroline-oc is in Pennsylvania, United States. Caroline had a rupture in November of last year, which was treated with a flow diverter stent.

@hopefull is in Florida, United States. Tiff incidentally found a 3mm ICA in October. After an angiogram in December, then found a second 2.2mm and confirmed the original aneurysm was actually 4mm.

@karrie1226 is in Georgia, United States. Two weeks ago Karriee had her 10mm aneurysm treated via coils, and will receive treatment for her second aneurysm, 4mm, in the near future.

@micheleM is in New York, United States. 12 years ago Michele was diagnosed with a 4 mm saccular aneurysm in the supraclinoid segment of right ICA. Her neurologist told her it was too small to treat, so she had periodical MRAs to monitor the size. Her neurologist told her since it had not grown in the past 12 years, they will no longer monitor her aneurysm, but she was referred to an endovascular surgeon. Expecting the same “monitor and wait” plan, the new endovascular surgeon was adamant that her aneurysm be treated promptly with a cerebral angiography and then stent.

@lorid is in Alabama, United States. Lori recently had a pipeline flow diverter procedure. She has been feeling post op symptoms of headaches, pressure, burning pain, ringing in ears, blurred vision and just feeling “weird” in general.

@MBsch is in North Carolina, United States. 20 years ago M had a clipping for an aneurysm and has recently found another aneurysm, having to start over with the diagnosis and treatment process again. They will have an angiogram soon and receive a clipping treatment.

@Ellah is in South Africa, Africa. Ellen had a rupture in August 2024 where the hospital clipped her ruptured aneurysm and coiled a second aneurysm. It has been 5 months since and she has mostly good days, but still struggles with fatigue and occasionally feeling dizzy. She will get her 6 month angiogram in February.

In this community we pride ourselves on being welcoming and supportive. So, if you or someone you know in the community has a similar experience to any of our newest members, we encourage you to reach out if you feel comfortable. Newest members, you can also post your own thread to the community to initiate conversation. If you have any questions about posting on the forum, please contact @Moderators and we will be glad to help.

[Javaphile]

Thank you for the warm welcome! I’m just over 2 months out from my post SAH coiling procedure, also still feeling “weird” in general. But still here

[MBSch]

Thank you

[jjajjj]

Thank you for the welcome greetings .

It’s been 10 months post-op on my un ruptured middle cerebral aneurysm.
I had coils put in through an angiogram.

What’s the new normal look like for others?
Mine are off and on headaches. some vision loss due to a stroke in my right eye during surgery. weird “off” feelings, head pressure, burning sensation when doing some work, excerises, ext. some speech issues. always fatigued. get “goosebumps” feeling on my head, mostly on the side of the aneurysm (right)

[Nat]

Hi jjajjj, Jaimelynn☺️

I’ve had a different procedure (a clipping/craniotomy) but I’ve noticed that we all mention and worry about the same thing: fatigue.
I ruptured during surgery (both lucky and unlucky) and I’ve wondered if this was similar to having a small stroke. Fatigue seems to be a big challenge for people who’ve had strokes too.
So I’m now 4 years post-op and I notice that I can “go hard” at work for a few hours and then I hit the fatigue wall. I work part time and don’t think I could manage full time work again - that’s my new normal. Fatigue has improved slowly but it’s still there.
I learnt a new job 3 years ago and I seemed to take longer to absorb what I needed to do. That’s also my new normal. I also have lost some of my ability to express myself well, concisely and articulately and in the best order. Sometimes I mention the least important thing first instead of vice versa. (I find that disordered thought really frustrating!!)
I used to be a champion sleeper - fell asleep quickly and slept through until morning. I now get up multiple times to drink water or go to the loo (yes I know, cause and effect! But still I’m waking up at least twice through the night when I never used to). I need to drink a lot of water compared to “before”.
I get headaches, frequently. The other potentially confounding issue is that women are prone to headaches with hormone fluctuations, especially with menopause. So what can I assign to the clipped aneurysm/surgery and what is due to other factors? Menopause and aging is also associated with poorer sleep.
I can no longer tolerate alcohol. No champagne at a celebration or over Xmas/New Year. Alcohol = very bad headache that might last several days, even when it’s a tiny amount.
You mention a variety of “head” sensations and I can certainly relate. Lots of weirdness. Right now I feel numbness over the surgery site (that will be different for you) , when I get hot (weather or exercise) sometimes I feel pressure and discomfort. Overall the weirdness has decreased a lot over time so now I can mostly ignore it. There’s hope!
The thing I have the most trouble with is : dizziness. Dizzy when I bend down too long (20 minutes of weeding, max) Dizzy when I go in reverse in the car. I’m not sure how common this is or if it’s aneurysm and procedure related or just me!
I’m having a check-up with my neurosurgeon next month, and I’ll ask a few questions that relate to all my above daily irritations.
I hope that you have the opportunity to check in with your neuro or GP and ask about the things that are concerning to you - the weird “off” feelings might be worth a mention.
Best thoughts to you Jaimelynn​:pray:

[jjajjj]

Hello Nat!
I, too have almost all the symptoms you do, that wasn’t mentioned. like the working part. I need to nap several times throughout the day, i’m sure that’s not going to work out with any job. i feel headaches and burning/hot sensation if i work myself, although that has calmed tremendously, the headaches still come and go.
Numbness at the surgery site is something i feel too. i kind of just pull my hair softly, thinking it’ll un-numb itself. The retaining information and whatnots.
Indeed, age and our hormones do play a part and is tricky when it coincides with the symptoms of the aneurysm/surgery.

that’s scary that your aneurysm ruptured during surgery.
unfortunately, i wasn’t even notified about the stroke i’m in my eye, it was swollen after surgery and i had to ask about it prior to leaving the hospital. it was confirmed a month later after seeing an eye doctor that specializes in neuro,

best regards to you as well 🩷 Thank you for sharing your story, i appreciate that.
May we all heal from this.

[Kcsunshine]

Hello, my name is Kirsten I had my carotid artery dissection with angioplasty stent replacement in sept 2019. I had many strokes. I lost my vision on the right side which also affected my top of my head a lot. I can say it gets better. I still rub my head in the same spot significantly but as a gentle reminder now. I have had to work hard only because I neglected self care for a long time. I have fears but I’ve learned to listen to my body. I’ve used physical therapy to judge my limits and to strengthen myself. I have received occipital nerve blocks on both sides of my neck for many years. My headaches gone. Yes I feel the tug in my head still but as I put it before gentle reminders. My surgery was through the groin. I was 120 lbs. too small so I feel it. For instances my neck has spasms well certain finger movements move your neck. Stop moving. Lol everyone here jokes and say stop moving. Like it’s so easy. I had my twins to help me. Things like buying light silverware and for me I can’t hold a taco and turn my head at the same time to I had to stop moving that way. Tricky but my nerves were so delicate in my neck still to this day I don’t use my right arm cause it hurts everything else. Some days! I can’t rake sweep or vaccum. Ah bummer right. I learned to do what I can. And when I’m feeling like I’m not doing much I’m happy to to my therapy physical it may be in a chair sitting but I’m doing it working on getting better. Some days that’s just understanding to be nice to myself. Life is what I make it. I am alive and thankful.

[jjajjj]

Hello! Prayers for you.
Healings are slow but in due time we all heal, although having to re-learn certain things and recognizing new symptoms, we got this! Take care and always be kind to yourself!

[susanr]

I lost vision in my right eye after a ruptured aneurysm. I have a difficult time driving.

[MBSch]

Hi Nat,

I’m there with you. Had a craniotomy 20 years ago (rupture), afterwards I’ve had continuous fatigue and cognitive issues… Taking longer to process thoughts, comprehension slows down, my short term memory is shot…

I also noticed vitamin deficiencies and I started having severe TMJ causing teeth issues …

I would certainly follow up on any problems you’re experiencing… There are more resources available and new methods to help self compensate with technology or other assistive devices.

Sending prayers and good thoughts your way

[Nat]

Hi there MBSch🤓

I had my neurosurgeon 2 yearly check-up last month and she said fatigue was the thing all of her patients spoke to her about and that even small changes in the brain can have effects that the individual notices.
She said my brain looked “very healthy” on the MRI, so that’s good. It was reassuring to hear that nothing is “wrong” just a normal result of having aneurysms fixed and having someone make changes to “a very delicate, finely balanced bit of our anatomy.” (Her words)
On top of that we all have our individual differences.
I hear you regarding short term memory! Very irritating and a daily frustration of mine also. My memory used to be my strength and I don’t trust it so much these days.
TMJ issues - is that because the jaw muscle is cut and then there’s a bit of atrophy? Some of the side effects are so unexpected. My mind was boggled when I tried to eat breakfast after the surgery and was unable to get my mouth open to eat the hospital’s baked beans.
Definitely not fun if those jaw side effects continue or get worse.
Can I ask what particular vitamin deficiencies you’ve noticed?
Maybe there are a few things that we could reasonably assume we will develop and then talk to our Drs about actively addressing them. Especially if it’s a few well chosen vitamins, I’d do that!
Thanks for sharing your thoughts and experiences.

[MBSch]

I’m an open book The TMJ is caused from a muscle type of twitch ( like a tick). I started constantly clenching and grinding my jaw, started at night and developed into all the time. I’ve broken my teeth 5 times, had 7 teeth pulled ( mainly molars). The problem is most dental is still classified as non medical so some insurance won’t cover or will cover only a small amount.

I’m with you on the memory. Mine was my strength and now it’s my weakness… I do a lot of double and triple checking and time of notes . Using programs to help. Google has been a life saver. Having evening connected, plus I always worry something might happen and I can’t respond for myself. Google has action blocks you can put on you phone to help with communication.

I will say search all resources. Start physical therapy now for any muscle issues you’re experiencing. That was the most successful for my TMJ. Some resources are excellent and some aren’t always helpful.

I have a vitamin D Deficiency but mine is most likely from my mom. She has the same issue with the same severity. Mine didn’t appear until 3 years ago.

There is so much more I wish we knew after our aneurysms. Wish we had more follow-up resource care. The medical side is monitored but not the mental. It can take a toll, feeling less than.

[jjajjj]

Sorry to hear that. sorry to hear that.
My neurology eye specialist, told me that it should heal
on its own and several follow ups, it has not. Although, my vision was bound to be going down due to other issues, the eye stroke just made it sooner.
i am still so very thankful and blessed.
i hope your vision will be better soon.

[MBSch]

Praying for you too… you are definitely doing all you should… I hope you find some relief and so glad you continue to ask questions and follow-up… Have they told you why you are still having issues

[jjajjj]

thank you i appreciate the prayers🩷

they have no real answers and look baffled when i explain my vision to them. Overall, i just do my follow-ups and have things on record, for future references in case i chose to change clinics.

After my surgery while in ICU, one of my kids noticed my swollen
eye, (i didn’t notice since i was in and out of consciousness) i asked my nurse and she mentioned it to my NP. no one on staff, from the surgeon, to the NP to my ICU nurses bothered to ask me about the obvious swelling on my right eye.

it’s been a journey with lots of new experiences.