Brain Aneurysm Support Community

Celebrating 6Yrs Post Op - How is Everyone Else Doing?

Hello, I am 6Yrs Post Op from a double brain aneurysm that thankfully did not rupture. It was located in the corner of where my main artery and vein split so it was a 7hr procedure instead of 4hrs.

I have been doing just fine, but I am still worried about it. Also worried there may be another one some day. My Aunt also had surgery, and years later there was another aneurysm.

Please share your experiences with me so I can try to relax about it. Thank you.

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Can’t believe it was 1995 when my aneurysm ruptured! I hate doing math, but I think that’s 24 years. No recurrence. Just saw my neurologist and she sees no need for an MRA to evaluate the artery. There are no guarantees that any of us won’t have a recurrence, but the rates are low for those whose surgeries completely controlled the aneurysm. I keep asking if there is anything I can do to prevent a recurrence, and trying to wrestle that information out of doctors has been really hard. These are the tidbits I have gotten. No weight lifting, as exercise or in life. No constipation that requires pushing. Keep up fluid intake to avoid dehydration. No smoking. And carefully control high blood pressure. That’s it. Hopefully someone here will have wrestled out something else! It seems that an aneurysm is a like a balloon. You just want to avoid things that push on the arteries in the brain to avoid blowing a little piece out and you want strong arteries that resist being pushed out somewhere. You are already among the lucky percentage who survived. So you deserve congratulations!

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Hi, It sounds like you aren’t having any angiograms or MRAs or anything to check on the health of your aneurysm treatment. I’m wondering if this is because yours were clipped and were considered resolved? I would think the doctors would want to have a look around just to be sure there are no other ani’s that developed after those two.

My ruptured ani in 2014 was coiled. There was a small neck remnant that kept the ani from being 100% occluded, but 98% sounds good enough to me. Six months after coiling I had an angiogram that showed stability (2/15). In July 2015 another angio and a year after that yet another. The coiled aneurysm remained stable. I had refused a stent in Feb 2014 and still do not have one. My 5 year anniversary of the rupture/SAH passed in July and I will have another angio next month. I was hoping for a MRA, but the doctor wants to do angio again.
So, I am doing fine, but like you, I can’t help but feel some anxiety about this thing in my brain! Maybe we will help each other to relax. I do feel confident that nothing will have changed when I have the angio on the 10th. If more than that were called for I would be very unhappy and stressed.

Please let us know if you have never had follow-up on your ani, which I think was clipped, because you used the word “surgery”.

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I’ve ruptured, and coiled, coiled again and yet again with balloon assist. I’m happy to report I haven’t seen my Neurosurgeon in almost two years. We go back in February. Mostly I don’t think about it, except when I have to see a new doctor. Then there are days it slaps me in the face, like when I’m trying to organize or I want to cook or go up a ladder…

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I was 28 and 28 weeks pregnant had been to the doctor that morning, not overweight, blood pressure normal he said I was a picture of health. I went home had an afternoon nap. I woke up, went to the kitchen, suddenly severe pain like an axe going through my head. I called my neighbour who called an ambulance. I was operated on. I couldn’t open my left eye so for three months I wore a patch over my right eye which made my left eye open. I had a patch over one eye long hair on one side and bald on the other. .Gave birth 12 weeks later to a healthy happy baby. People passed so many comments saying “wonder if the baby will be normal.” A lot of people don’t think when they speak. He went on to be a very clever young man now 30 years. Topped the Uni in physics.
I had the bone replaced 6 months after the birth and since then I have had a headache most days and get a lot thudding pain. I look fine but people don’t understand that I have a few deficits. Can’t carry anything heavy if I do instant headache. I take endep but that makes me sleepy but certainly lowers the headache.
Does anyone know if Botox injections would help.
I’m very very lucky to have survived to see my children grow up.

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Hey Diane,
Firstly, welcome to the community.
“A lot of people don’t think when they speak.” Now ain’t that the truth, I’ve caught a few having little conversations about me. I confronted one person straight up, they were highly embarrassed, but got the message loud and clear. Don’t. And word spread quickly, ‘got something to say, say it, but say it to me’.

Now Botox. Yes, I have tried it. Botox can be of assistance for headaches if the headache is a tension type headache as the botulinum toxin releases the tension by temporarily paralysing the nerves to the muscles and tendons. BUT, for those of us whose headaches/migraines/head pain is not muscle related but have another physical/organic cause, Botox will not fix the headaches.

A bit of my story with Botox. Tried all sorts of meds post surgery (Craniotomy) from heart meds to epilepsy meds to psych meds, nothing worked and just made me feel YUCK. Tried all sorts of alternative therapies from acupuncture, manipulative physio, Bowen therapy, hydro therapy, massage, TENS machine etc, etc, etc. Consulted all sorts of medical ‘professionals’ if someone had a clue or an idea, I gave it a go.

I saw a neurologist, a very opinionated neurologist, who decided Botox was my best chance. I agreed to trial it. I had 3 rounds of treatment, each 8wks apart. And OHH BOY was it painful, it was like a bee sting. Some people say ‘Ohh a bee sting? That’s not so bad…’ but I was having 30 injections in my face, neck and shoulders. Front and back. 30 bee stings. nasty. Some people get this stuff put into their face, I couldn’t understand it. How? Then I was told when it’s used cosmetically they use a small amount of local anaesthetic before hand but as this was for medical purposes and not cosmetic, no anaesthetic was provided. Luckily I took my wife with me for the appointments because I had a headache from hell after the treatment and there was no way I could drive. I had a real sexy neck and shoulders but would have had to walk everywhere backwards to show it all off :smile: :smile: :smile:

I was prepared to continue with the trial, but after 3 appointments with no noticeable benefit, my wife put a stop to it. She saw the aftermath of the treatments and this, with the lack of benefit, was all too much. The neurologist was not impressed, he went into a big long speech about the brain and headaches, how the brain itself has no pain receptors and can’t feel pain, so it’s not actually ‘brain pain’, but the pain is often caused by tension. The only tension I had was caused by him. He proceeded to put it all back on me, I caused this. So I enjoy the pain that much that I do this to myself??? So I did my own bit of investigating.

It is true that the grey matter itself does not have any nerve fibres, the brain merely interprets signals from the nerves. The human head has 12 cranial nerves that control everything from swallowing to eye movement. From hearing to taste and pain receptors. Although the grey mater contains no pain receptors, the meninges, the layers over the brain does have such receptors. The meninges surrounds the entire brain and spinal cord. Any surgery resulting in disruption of the meninges can cause ongoing issues, including pain.

Now I have to say here, I am not a dr BUT I have deduced that my ongoing head pain is not due to tension, but is due to the surgery/ies themselves. I have queried the neurosurgeons about this (they didn’t like me questioning them) and in really basic terms it was either surgery or death. Not much of a choice, but there you go.

My personal recommendation, trial it. For some people it can be the miracle they have been hunting for and if it works for you, fantastic. But, do not be hoping for a cure because the disappointment if it doesn’t work can be huge.

Merl from the Moderator Support Team

DMS, welcome. You probably want to start a new topic look to the top of the page and you will see a plus sign new topic. I’m guessing others would be interested

Hi. Congratulations on your 6 years pot op! My Annie ruptured June 2014 and I had coiling followed by stent assisted further coils. Just saw my neurosurgeon earlier today who told me mine latest MRA was fine and there was no change since the last one two years ago so feeling good at the moment :slightly_smiling_face:

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I am absolutely terrified. I am having my DACA annie clipped Oct. 8th. No one knows anything about them other than forums like this and I’m going into this scared of all the possible scenarios.

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12 yrs out from clipping. Major migraines till 6 months ago started monthly Aimovig injections. No more debilitating migraines only mild to moderate headaches handled with xtra strength acetaminophen

Congrats on being a strong survivor! I have had lot of these concerns as well. It’s good to see you working through it with such a positive attitude!

Stay strong!

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My rupture was in 2014 too. What a year, huh!

Hi Mumma how did your surgery go? I also had a DACA Annie, coiled and stented 6 mos ago. I hope you are doing well. I too was terrified.

I try not to worry about it. It was a posterior communicating artery that ruptured and was clipped. For the first 5 years, they followed it with an annual MRI and I had 2 MRAs in the next 5 years. When I had the second brain surgery, a cranioplasty for skull deterioration at the first surgery incision, they did more followup MRIs, one before and one after. The report showed a lot of brain damage near the surgery site and significant scarring on the surface of the brain below the skull damage. To read the report, you’d think I was in a coma in a nursing home. My neurologist was reassuring and said the damage was expected and other parts of my brain had filled in for the scarred areas. They identified the scarred area responsible for my seizures and the surgeon wanted to take a chunk out of brain near there. That didn’t seem like a good idea to me. There are no plans to keep evaluating the aneurysm location, but they said if I developed high blood pressure, that would lead to more testing. I have asked if dementia occurs at a younger age in aneurysm survivors and I’ve been told any type of brain injury can cause that. That’s a bigger worry for me right now. I’m still here, but I look pretty bad on paper!