Living with a Brain Aneurysm Diagnosis: Struggles of Watching and Waiting | BAF Webinar
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- เผยแพร่เมื่อ 8 ก.ย. 2024
- BAF co-founders Dr. Christopher Ogilvy and Deidre Buckley, NP, along with BAF Board Chairman and survivor Tom Tinlin discuss what to do when you have been diagnosed with a brain aneurysm. Conversations include the watch-and-wait approach, how new imaging is helping doctors decide when to treat, and also concerns they see from patients and families during this stressful time.
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52 know. Had an embolization procedure when I was in my 40s. Found out about my 8mm brain aneurysm initially through hearing loss. Called it an accidental berry brain aneurysm. So living with a coil in my brain to stem the blood flow. Would of rather never Found out. Lost friends through ruptured aneurysm. My head has never thought straight. Head injuries, anxiety depression etc etc. And know the fabulous MENAPAUSE. THIS ride is never ending and forever testing. To this day I'm overwhelmed with it. I've had no support with this or my hearing loss. But still I survive
I was diagnosed with 2 unruptured aneurysms. This webinar has been so good for me. It encouraged me and gave me hope to move on and probably make a better choice for treatment.
No shame in this game for survivors ! Spread awareness SURVIVOR STRONG 💪 help to deal with the process of the unknown and survivors need to also when their world is turned upside down and they lose their jobs and are working their way back on their feet! I am a five year SAH survivor and I’m truly thankful grateful and blessed to everyone for sharing! Thank you
There are doctors out there who are not related to the Nuro surgeon field who you have to deal with on during your recovery and getting back to work who also need educated some of them try and keep you in a bubble and limit your growth. That’s how I felt on getting back to work and by the grace of God after two years, I am back driving When you have someone limit your growth based on their experience and their on education of your health diagnosis.
I had an Aneurysm 20y ago and it was cliped.
It took 9 monts before it was diagnosed.
It's wonderful that now there are support groups and so much information and to have the option to treat the Aneurysm now.
How small is small ?
I was diagnosed with 4 brain aneurysms. 4. They were found ‘accidentally.’ The past two years they’ve been monitored but my last scan confirmed one has grown significantly so now awaiting surgery date. It’s nice to hear from someone who’s gone thru this.
I too, have multiple aneurysm's two of which were clipped by pterional approach craniotomy. They were very large between 8-9 mm and elongated. Extremely close to rupture. Location of brain they were in very delicate. They were large enough for them to press against tissue and nerves in my brain that caused symptoms which lead to my diagnosis. I was actually diagnosed with 4 as well but, then after further study it was found I actually had 3 aneurysm's and an Infundibulum. The surgery was very invasive and the risk of the surgery was higher then I would of liked because of my age and other factors but, it had to be done and soon. I thank my lucky star's, God and an very distinguished excellent neurosurgeon and his team for saving my life. The surgery went very well and I did well through my recovery. It was a lot but, doable. I was kept very comfortable through the whole process. It has been one year and my yearly monitoring was just recently and I received a good report. Clippings still look great from the surgery and the 3rd show's no growth. Still I know what your going through. It's like walking around feeling like a ticking time bomb. It's extremely stressful. My heart hurts for you. You be strong, fight this like grabbing a bull by the horn's. We are survivors and can beat these darn thing's. Need to chat to someone that can relate or have any questions, let me know. Meanwhile you are in my thoughts and prayers. Remember..
Strong like bull, you've got this! 😉
You both beautiful ❤
Great Webinar!! Thank you.
2002... 2 Annies discovered.. finally!!!...
So.. I had a 9mmm coiled at the brainstem. My 3mm behind left eye, was told, wait and watch.. hhhhmmmm don't like that idea.. maintenance need asap in my gut feeling... but after coiled Annie, my surgeon said we won't do anything with 3mm until the following year's scan to determine, I said I want it done and asap, I don't want another potential Op next year, behind my left eye is always aching and I felt a migraine starting (triggers!!) also...with more lengthy recovery time! he said, can't do surgery so close together. I insisted I wanted it done in the same year.. so 2..3 months later, ( can't remember)... I had my Cranniotomy done to my 3mm Annie. In the recovery ward, my surgeon gave me the rundown of the Op...and added... "You were lucky to be so stubborn and persistent in having the op, your 3mm is now clipped.. it was ready to burst!"
Upshot...Trust your gut/head.. feelings as well as Specialist's .. only you know how your head is functioning, I was suffering for years with migraines, volcanic pressure in my head but was told blood pressure was normal when at GP's appointment and it was tested... but my head didn't have the pressure at the time... so..vitals were.. all ok diagnosis! From the GP's ... I was given countless scripts for Migraine tabs which I never took.. said I didn't need scans and Specialists!!... and told your a single parent which has many pressures.. and to change my lifestyle.. all that is causing the migraines!
Really!!!
( I was and still am, a health fanatic in nutrition and excersise which is very noticeable and a positive person) 😊
4mm aneurysm the same site. Been watching for 10 yrs.
I am an aneurysm rupture survivor. Happened Sept 2023 middle of the night! Careflight to Tx Health FW to the neurosurgeon for immediate repair coils and stent. He identified 2 additional unruptured aneurysm. Latest angiogram shows ruptured anueryms healed and other 2 unruptured have grown a bit. Discussed options, and will see him again in 12 months. This answered some questions, but I am concerned about surgery or not.
3 years ago wife found me dead from a ruptured aneurysm on the garage floor. I am making a full recovery. I will not quit I won't give up.
Excellent Webinar. Many thanks.
Thank you! Very informative! Be your own advocate!
Had an SAH 2017 and endovascular coiling. As a nurse who taught ACLS, BLS and more, I had no idea what was happening to me. I was back and fourth to Urgent Care with weird headaches for 6 months. No one suggested a simple CT scan. My B/P was elevated of course due to the pain... I was sent home on B/P meds. The classic, African American 40 something year old diagnosis. Until it ruptured, I had no idea I was walking around with an aneurysm. I was told I'd be on a laundry list of meds for the rest of my life. Then the classic grand mal seizure! My insurance company refused to pay my hospital bill. I'm so thankful for the knowledge of diet and herbs. I have no deficits today and am resolving to teach as many as I can the signs and symptoms and most of all prevention if possible! I want to be more active. I no longer work as a nurse. I have a very successful health and wellness business and nutritional supplements line and I advocate for anyone I can help. We need to push harder for legislation for protections, and provisions for brain aneurysm sufferers and survivors. Let's go!
This was a good video , although i still have some questions.
Little history here ( skip if you want) at the beginning of this year , my sig. other of 22 years , had a dissected aorta . He was in a conna for 5 days , then he dies. I was extremely upset , hysterically crying every night and after one particulary bad night , i fell asleep for about 7 hours . When i woke up my right thigh, right breast plate and my right arm were numb. I figured i probably had a stroke so i went to the hospital. Come to find out not only was there a stroke , but it wasnt my first one. This is also when i found out that i have 2 aneurisims in my brain. 1 on my left , behind my ear and 1 on my right in the same position.
The nurses at my hospital didnt even ask me what i wanted to do., which is good. They make all my appointments and everything .
Well anyways my surgeon post poned me twice and then there was a problem with my insurance carrier. Now though everything is good to go but i havent called to reschedule after two weeks now.
I was questioning everything , then this past Thrusday i got an extremely bad head ache and i could actually hear and feel how hard the blood was rushing in the back of my head. Plus , since that Thrusday i have thrown up absolutley everything ive ate and some of what ive drank. So now its Sunday night and i get very dizzy and almost faint just from standing up . Is this an emergancy situation? I dont want to keep bugging the hospital as ive been hospitalized twice since March , but ive been unable to eat since Thrusday. Im 66 years old and the loss of my boy friend literally devastatede and now im scared and really feeling alone and unsure . Please tell me ...what should i do?
My name gale richards for years I suffer with migraines in 2014 I found out I have two brain aneurysm s had surgery remove one still have another brain aneurysm my nerosurgeon was amir dedashi at long island Jewish hospital he did my surgery my girl friend had one never knew 25 m aneurysm behind her eye. Right now I been having pains in my head for days walking around with brain aneurysm is like night mare not knowing if you go bed not waking if today your last day is like Russian roulette very scary
Thank you for this. Im in the UK and we have little in the way of support. Very informative
Thank you for your time. Had clipping done 5 years ago and new 3mm has been detected beside clip recently. Been called in for a chat with neurologist next week. Little worried. If given the option I will ask for care ❤
Wow, I just found out I have an aneurysm and they spent no time telling me about it and only spent time talking about my vertebral arterial dissection not associated to the aneurysm. I’m literally having to watch videos to learn about it. Ridiculous!
My Dr. Called me and said younhave a 2mm aneurysm, but don't worry about it. Have a nice Thansgiving. He pent 2 minutes on the b phone. Then my next neurologist said obe day " I want to Stent it" then called me back 2 weeks later and said " due to Covid we can't do your surgery". Will need to have ro reschedule. That was 2 years ago and I haven't been told by my nuero that he wants to reschedule. And per my yearly scan it hasn't gotten any bigger.
Thank you from South Africa 🇿🇦 Two ruptured and coiled and one 3x4mm wide necked one we are watching because it's in a difficult place. 😮 It's a difficult road. We havre great surgeons but they are really busy.
I was diagnosed with 3 incidental Anurisms after I had a full body scan for a previous operation.
One has been coiled another a stent but the third one is smaller.
Hi just been told I have a unraptured aynersum 8mm , by my doctor who sent my info to a specialist and that was it, I'm so scared, listening on here I have faith...
I had one ruptured aneurysm and have 2 unruptured. One is flat, i can't remember the name of it. The other is very tiny. I go every year for MRA's. My neurologist and his partner were excellent. But i hear what is being talked about is fear of future. Trying.
What i absolutely want to know more of...is roughly how many times has a "watch and wait" situation turned into a rupture?
I simply can not afford the tier 2 co payments to get a endovascular surgery
I’m guessing you’re in the US, not to get political but some services need to be govt funded as a basic human right rather than a highly profitable industry.
Anyone ever have a mickey mouse aneursym
Yes