Hi Lele
We are definately in the same position. If you need any support at any time please do not hesitate to contact me. God bless
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Thank you for putting into words how I can relate to all you have written here! And the comfort to feel like you are not alone and know you are not the same as prior to having your brain manipulated with surgery. And how that it appears you seem ungrateful to be a miracle for surviving.
Seems all my doctors (primary care and specialty docs I have seen since) act like when I explain what I am feeling in my body - as if I am taking drugs and making it all up.
Mary Lou
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I am also a survivor of 2 annies , first one in 2008 ruptured , coiled & repaired 2nd one in 2023 , coiled & repaired. After the 2nd craniotomy ive noticed a lot of difference in my personality & i really have no understanding of whats happening to me. Sometimes it takes me 30 min to get out of the car to go inside at the local market. Its ridiculous & i get frustrated with myself. Ive tried explaining to friends & family but its hard explaining something i dont even understand. My husband said, im altered which sounded better than crazy. Sometimes i feel like i must be crazy , i cant even find my own self. Thank you for your post & vent. Its true that we all need to communicate with others who have a understanding . When i find one ill be happy to share it with everyone. I wish you well & sincerely hope things keep improving for you.
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OHHH YESSS!!! and it infuriates me so much when they do that. We are not in this position by choice, so the idea we choose to be in pain is just ludicrous and damn insulting IMHO. I’ve offered my pain to anybody willing to take it from me. Unfortunately I haven’t had any willing takers… …Well, I don’t want it either, hence my need for medications. GGGrrrrrrrrrr.
This is not a choice.
Merl from the Modsupport Team
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You’re my tribe! I appreciate when another here listens with compassion and tells me I am not alone. And will share with me on with the grief that comes with just wanting our health back along with the vibrant person we were prior to our traumatic brain injuries that came into our lives uninvited.
Mary Lou
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Hi @Lele - I hope you have since been able to get some guidance/help/medication…. I managed to miss this post last year, and I realized it was because I was getting my second Annie RE-stented. I ruptured my LICA Annie on Jan. 5th, 2024 (interesting how dates are permanently branded in our memory after this) and got admitted on the 8th and stayed in ICU for 11 days. They had found a second Annie that was coiled and stented 3 months later and in follow up, saw that the stent “slipped” and needed a new stent, so that was August. My last stent of the ruptured one was in October 2024 and the doc said he wasn’t going to see me until the one-year angio yet to be scheduled… so I was like, and…? (To be clear, I LOVE my neurosurgeon, and he has been nothing but amazing but…)
Similar to many on here, I indeed felt like there was no real guidance/next steps. Due to having disability paperwork requirements, I needed documentation and I connected with a neurologist recommended by a friend neurologist and NOT by my neurosurgeon (though my neurosurgeon was his direct mentor and trained him). Like others have noted, the neurosurgeon does his part to “fix” you and then your PCP should be your “quarterback” to dot the “i’s” and cross the “t’s”. The neurologist sent me for a neuro-psychological/cognitive test to get a baseline and was told my IQ likely dropped from 122 (+/- 7) based on my career to 106 (actual now) and then recommended to the neurologist that I see a psychiatrist to manage my biggest issue — inconsistent sleep and my daily NEED for a nap. He suggested that I was experiencing neuro-vegetative symptoms that were subconsciously causing me to ruminate and get depressed/ experience some level of anxiety, which is affecting my sleep, causing me to nap… etc. etc. and that maybe an anti-depressant may manage the sleep thing… and then there’s the random weeping for “no reason” at times, triggered by a word, or just nothing.
To @WriterByTheSea‘s note [quote=“WriterByTheSea, post:9, topic:18709”]
there is a sort of grieving process that we need to go through with brain procedures, all of which ARE traumatic brain injuries of one sort or another.
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And as many others have noted, we can only try to remember to be grateful for making it out on the other side and actually having the wherewithal to even communicate on this platform - statistics of surviving what we have are not pretty… and I have heard many stories from friends…
Just wanted to share and hopefully, my story is relatable in some way that reminds you that you are not alone.
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I had my third repair procedure about 18 months after I ruptured and was still sleeping all the time. No one was concerned about it the first year. They all said my brain was still healing. At the follow up appointment, for the diagnostic angiogram to see how #3 was working, BH mentioned it and neurosurgeon suggested I needed to retrain myself to sleep during the day. I still sometimes have to nap during the day. No one is worried about it.
I know for me, I’ve learned for reach out a couple of months prior to when I’m supposed to have another MRI/A to my Neurosurgeon’s team so they can schedule it. I put a reminder in my phone’s calendar to remind them and my NP at the Neurologist reminds me. When the NP schedules one, it puts the one from the Neurosurgeon out a good bit so I get confused.
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