Brain Aneurysm Support Community

5th Annie-versary! Strategies that helped me during recovery

Today is my 5th Annie-versary!!! On 4/24/14, I suffered a ruptured aneurysm in the vertebral artery harboring the PICA (VA/PICA). It was a fusiform aneurysm (8mm x 10mm). On 4/25/14, I had successful surgery where the Neuro-Surgeon sacrificed the parent allowing a reflow to an alternate artery preserving the PICA. As I celebrate this milestone, I reflect on things that worked well for me in post surgery recovery.

Keeping a journal. Initially, I wanted to exercise my cognitive mind by keeping a journal. After hospital discharge, I noticed very unusual things to my hearing, vision, touch and balance so I started to keep a daily log. This journal was helpful in multiple levels. As we navigate across the medical landscape, the journal helped me describe concisely my issues to my physicians. (We only have that 5 minute window to explain our issues) My neurologist explained that after major brain trauma, often a patient will experience issues that pass over time. And he was correct. Many of my unusual perception issues have gone away. Unfortunately, I still suffer from a a vestibular-ocular disorder where the double vision is corrected by prism glasses and the nystagmus treated by daily Gapapentin. I also recorded environments which will trigger my vertigo.

Tackling one issue at a time. Like many on this board, survivors suffer from multiple issues. It is daunting to try to address all the issues at the same time which involves some sort of therapy. In my case, I had vertigo, double vision, hearing loss, reading issues (irregular ocular movements). Initially, I tried to tackle them at the same time but found that if I prioritized one issue at time, I had better results.

Navigating the medical community. The most difficult challenge for me is that my vestibular issue required me to navigate across multiple physicians. Each doctor will diagnosis and treat my issue based on their own discipline. However, they will not speak to each other. The worst are the new patient coordinators who often do not have a background in life sciences. They will send the entire medical records so often, the key information is missed. So, my strategy is understand each physicians’ diagnosis and treatment by some research on PubMeds and taking online Neuroscience coursework. In this way, I can convey just relevant medical results to the specialist. By the time that I had consultation with the 11th physician, the correct diagnosis and treatment was assessed for my vertigo.

Connecting to other survivors. The most difficult thing for Annie survivors is that you may look completely normal in the outside but suffer in the inside. This board is helpful as we can hear similar stories and you are not alone. The hard thing is the Annie rupture events are rare (34K per year, 17K survivors). It is also hard to find PICA annie survivors as it is rare event (2-5%). So, I connected with other stroke survivors who had hemorrhagic strokes with similar disorders which was helpful. If your area has an Aneurysm support group, you can meet fellow survivors and share your stories. You are not alone. I am fortunate as I met many survivors who are now my friends.

Enjoying life. It sucks having a ruptured aneurysm and SAH But, I count my blessing every day that I survived. Rehabilitation is a marathon. Every defeat of a disability is a victory. Having new experiences and learning something new keeps me young.

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Congratulations on your five year annie-versary fellow PICA survivor!! Your strategies can be very helpful to others. I have a little over a year to go to hit my five year mark, but I just just got my 4 year MRA and I’m still waiting for the results – – hoping everything is still as it should be. Congratulations again!

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2 Fight: Congratulations on your 5th annie-versary and thank you for sharing your strategies for managing through your recovery.

Coincidentally, last fall, I had a headache that was second only to what I remember experiencing when my aneurysm ruptured. It was also caused by a sinus infection. Thankfully, my long time PCP was able to quickly diagnose the cause and I got relief without having to go through a lot of testing.

God willing, I will celebrate my 50th “annie-versary” this coming September.

Blessings!

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Congratulations 2Fight and many, many more years to come! Thank you very much for sharing.

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2Fight

How you’ve made me smile and lifted my spirits today. Thank you for this wise and wonderful post: it’s a beautiful piece which exudes optimism, practicality, realism, and positivity. I finished reading what you wrote, and I thought “wait a minute, if we replaced the diagnosis and symptoms with almost anything else that we see on Ben’s Friends, the author’s message would still be relevant, and still be uplifting.”

Thank you so much for reaching out: that’s what Ben’s Friends is all about. We support each other during times that are uniquely tough for those of us with rare diseases, and when the going gets a bit easier, we reach out and say “I’m doing OK, just hang on tight and you’ll find you’re OK too.”

You’ve made my day, and I’m guessing, a lot of others too!

Gratefully,

Seenie from ModSupport

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Happy Dance! You’ve nailed it in a nutshell! 2Fight you’re willingness to share your experience and wisdom is awe inspiring, keep it up…

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2Fight our Stories are very similar. Same area rupture, only a few weeks apart I just celebrated my 5 Years, Congrats to you, I have been diagnosed with a new rare condition called Moyamoya and my left carotid is 100% blocked,
This new life is hard to get used to

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Thanks all. Only Survivors know that the 5th Annie-versary is an important milestone. Currently, I am undergoing binocular vision therapy to help read correctly. It is more difficult than vestibular therapy as your eyes feels that sand is poured in your eyes so it is important to have a positive attitude as it is not pleasant.

One key medical records that I forgot to mention is getting your Neuro-Surgeon notes. The reason is that it indicates the exact location where the aneurysm ruptured, the thickness of the bleed, and notes any variation of the artery system. As I traversed through the medical community, I passed along this information to the respective physicians. One eye physician raised that my cognition and emotions may have been affected by the SAH. I will challenge them back that the brainstem is far away from the frontal lobe. Then, I would ask them whether he has read any cases where brainstem SAH lead to cognitive dysfunction.

I feel that I am the luckiest man alive. I lived so I can find out who will take the Iron Throne.

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Congrats on your 5 years. My 4 years was actually April 25th and I a survived a ruptured brain aneurysm. Thank you for sharing what has helped you. It truly helps. Thanks

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Congrats on your four years!

Congratulation!Hearing your story has given me so much encouragement.You faced the problems you were having straight forward.Iam 6 months out 4 BA’s
cranitomy,clipped one more surgery in Dec. 3 BA same thing left side this time.Its great to hear somethings did
get better.5 yrs. I would imagine doesn’t feel that long.Hope you celebrate you’ve so helped.Than you!

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Congratulations and thank you for giving such clearly organized advice. This site is wonderful for all the newly diagnosed people and their loved ones who are looking for answers and support. It’s great when people come back five years later to give insight into long-term issues and recovery.

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As a fellow rupture/sah survivor I would say your strategies are spot on!

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Thank you for your positive and realistic views on your personal recovery. I am approaching my 2nd annie versary in October and just this morning received the news that a close friend received an incidental diagnosis of a brain aneurysm this week. I have been dealing with some issues that are not visible to others and it can be tough because others think that you are completely healed. Keep up the positive approach!

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Very good advice! I am a PICA craniotomy survivor from 1995 and I am here to tell you that it will get better over time. I know about the 5-minute visit! I am just grateful if they sit down to talk. At this point, my history related to the aneurysm is so complicated, I typed out a bullet point list of major events and surgeries with dates and surgeons and neurologists names, another bullet point for diagnostic tests and dates, and another for drugs (tried, failed, and current). It only covers the last 10 years or so. I wish I had started it at the beginning of the medical merry-go-round! This file is on my computer and I update it regularly. My insurance company just dropped some of my long term doctors and the printouts have really helped so I can talk with the new ones. You are right that they often don’t talk with one another, and they are too busy to read a 50-page medical history. I am impressed you are studying neuroscience!

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