New life journey

Thank you for the warm welcome!

I am very much on the journey of learning what normal is now and trying to understand what is a symptom of the BA and what is a symptom of the stroke. I am afraid of moving around and doing things and ruining the healing that has happened so far and causing another BA.

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Hello @MariDot -

I have a feeling our dear moderators are going to split this into a new topic (thank you in advance!), but I wanted to chime in with a website I learned from my favorite speech therapist about on my journey and returning to work: Ask Jan

Not too surprisingly, I have linked directly to the Brain Injury page. :rofl: In short, what Ask Jan is is a jobs accommodation website, and is a resource for both patients and employers to help us all understand what potential issues we might have as employees, and how employers can help accommodate us under the Americans with Disabilities Act (yes, you may now qualify).

Now you may not need any of these, you may do just fine, but just keep this in your back pocket as you readjust going back to work.

And you are definitely right - take things slow and easy! We always say around here that everyone’s experience is unique (which is so true!), but my experience is that the first time is hardest and then repetition helps to make things easier (e.g., going to the grocery the first time post-rupture was crazy with all the stimulation, but now I am able to function much more ā€œnormallyā€).

You (and everyone else who joined!) are MOST welcome to be among us, and we are happy to have you here! Please do not hesitate to ask questions, or just vent if that is what you need - we are here for you!

Fin Whale Fan :whale:

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Yes, @FinWhaleFan is correct, I’ve moved your post to the General tab! If you don’t care for the title, please feel free to change it by clicking on the pencil by the title.

I was searching around on the internet this morning about life being a journey quotes, and stumbled across one that I think exemplifies what we experience. An, Irish writer, Oliver Goldsmith, says ā€œLife is a journey that must be traveled no matter how bad the roads and accommodations.ā€ Some of us endure some pretty harsh roads don’t we? Eventually, we get through the rough spots and reach some smoother roads. Don’t forget the smooth roads as they’re the ones that get us through the next trials life brings.

I initially learned that symptoms of a ruptured brain aneurysm was the thunderclap headache which I experienced. Everything I found back then was ruptured aneurysms have symptoms - the thunderclap headache being the most pronounced, indicative of an hemorrhagic stroke and unruptured aneurysms do not have any symptoms. Being a member here, I am unsure the original way I learned is correct. I’ve read where many members state they had symptoms which differ based on the location of their aneurysm. I also learned most recently from @FinWhaleFan that PICA ruptures may not have the thunderclap headache. I find that extremely interesting and really need to find out more. For me, after I was released from what I refer to as ā€œspa treatment, I didn’t even have to wipe my own arseā€ aka NSICU for 26 days, I was told that if I had a stiff neck, nausea or vomiting and really bad headache I was to go straight to the ER immediately. If your surgeon or the team didn’t give you any guidelines, please reach out to them and ask.

When BH experienced an ischemic stroke at work, I was called by both BH and the Office Manager. BH wanted me to come and drive to the PCP, it was raining and BH knew I could not drive in the rain at all back then. Speech was slurred, confusion apparent. OM said BH couldn’t walk well, arm wasn’t moving as it should and wanted to call the ambulance. Fortunately between the two of us and a co-worker BH agreed to the ambulance. CT was performed to rule out any bleeding so they could give what I call ā€œthe miracle drugā€ which is TPA. We were at CVMC in Catawba Co and the ER doc had rolled out a box with a tv screen so a Neurologist at Baptist aka AHWFBH in Winston-Salem could give the diagnosis. When he started to explain a ruptured aneurysm, BH said to stop we already knew and attempted to tell him about Dr. Quintero-Wolfe operating on me​:joy:. We got the drift of what BH was trying to say with slurred and confused words. He ordered the CT, came back on screen and ordered the TPA. To see the change back out of the symptoms was amazing to say the least. It was amazingly fast and almost completely reversed everything. I wish there was a miracle drug for us as well. Hopefully within our lifetimes.:crossed_fingers:

All the members here have their own journey, some have rougher roads than others. We are similarly different if that makes sense. I’ve learned from them a lot. I believe you will as well. Remember slow and steady wins this race, never give up and never give in. I’ve forgotten who made those popular so no credit to them, apparently I’m in a quote mood today. We are here for you, just don’t be afraid to ask or vent, we’ve all been there.

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Thank you @FinWhaleFan and @Moltroub for your warm words and reassurances. It has certainly been a journey so far, a journey down a difficult road.

I am sad to say that road is showing that 10 weeks post coil, I am having recanalization. I am scared because I’ve had time between finding out and waiting for the fix, which has not been determined.

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@MariDot

I understand that you are scared, but please don’t worry, I know that it is easier said than done . What I have learned from my own journey, is that the aneurysm can still be filled with blood after a coiling procedure. It’s usually a two- step procedure. The coils can be compacted and especially when the aneurysm has a wide opening. I think that this is why they are doing the angiogram three months after the first surgery. The first time they stop the bleeding with the coils and if a new procedure is needed it is to permanently restore the weak spot of the artery so it doesn’t cause any more bleeding. Before the second surgery it will probably be necessary for anti platelet medication, what we usually call a blood thinner. This cannot be given when we have an ongoing leak or are bleeding. It is a scary situation for us and especially when you are waiting for answers from the neurosurgeon. I would say that most of my ruptured aneurysm people on this site have had a stent inserted into the artery 3-6 months after the first surgery. My neurosurgeon said to me that it will be like a ā€œwalk in the park ā€œ compared with my experience with the rupture. I didn’t believe him but I understood that it was necessary to have the surgery.He was actually right, it wasn’t that bad, I was sent home the day after the procedure.

I hope you will get some more information from others like me . We have to remember that the neurosurgeons have A LOT of experience and they will figure out how to permanently fix your aneurysm.

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Remember to breathe please, Ms. Mari. I’ve been on the table 4 times for repairs, breathing deep and slow helps a lot. Try the box breathing @FinWhaleFan has posted. It’s not the method I was taught in the ā€˜70’s but with the same results. I was fortunate to teach the method I learned to a lot of folks on my side of NC. Remember relaxation breathing has to be practiced all the time, numerous times throughout each day so it just becomes a part of you. That way, when you need it, you don’t have to stop and think about it.

Unlike @oct20 experience, I did not get a stent until the 4th try. My coils kept compacting but I’ve got over 24 daughter sacs, so there’s that. A little tiny 5 mm aneurysm bound to burst. Didn’t know a thing about brain aneurysms prior to my rupture, I’ve learned since then. The second attempt, my Neurosurgeon told us she told the Resident to keep the coils coming and packed it tight, really tight. The third attempt had a balloon assist so she could get more coils in. Of course with the stent in 2020, I was given more coils. I have a lot of platinum in my brain it seems. I’ve done much better with the stent than any other procedure. The 3 following my rupture were all one night stays in NSICU, piece of cake compared to longer stay when it blew.

Couple of questions if I may, which hospital do you go to? We’ve got some really good ones here in NC. What has your surgeon told you what they’re going to do? On repair attempt #3 I think it was, there was the possibility of a craniotomy so I had my hair cut pretty short, just in case. I’m not vain about my hair but I decided it would be more balanced when it grew back. Yes, I am odd.

Hang in there Ms Mari, the not knowing can be really frightening and frustrating. Remember to breathe!

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Hi @MariDot,

@Moltroub is so right, but as a patient myself, I know how frustrating it can be!

I will admit that I never asked this question since I ruptured, my surgical decision was made for me. Afterwards, though, I heard that crainotomies are ā€œone and done.ā€ In my patient, non-medical opinion, this tells me that endovascular surgeries are therefore NOT one and done, so having to go through another procedure is not atypical, but, of course I defer to the professionals.

I also take comfort in that you DON’T have a new date yet …that means your neurosurgeon doesn’t see you in being an imminent risk and you need to have it done tomorrow. That’s a VERY good thing! :smiling_face_with_three_hearts:

I did want to share one of my favorite box breathing videos:

Repeat as often as you need, of course!

There are tons of other breathing exercises out there if you don’t like this one - we can find more!

Keeo asking/venting/sharing your thoughs and concerns. We are here for you!

Fin Whale Fan :whale:

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A quick sparknotes of the crazy journey so far:

MRA on Monday showed 7 mm flow behind the coils. Original aneurysm size was 17mm.

I am in North Carolina like @Moltroub and was very lucky to get a second opinion on Thursday at Duke! They immediately scheduled me for a DSA on Friday. It showed absolutely zero canalization at ~10 week post coiling, the complete opposite of the MRA.

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Thanks for the update Ms. Mari! Although I may be partial to Baptist in W/S since they worked so very hard to save me, I must admit that Duke is probably the best in the State. So what are they going to do about it, do you know yet or is it too soon?

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Since the DSA showed zero flow and coils that were packed in good they decided there was no need to intervene. No answers yet on why the MRA report showed such a distinct difference, it could have been human error, don’t know yet.

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My experience with Radiologists probably isn’t the best. One time early on one put findings that were way off to the point Dr Q-W jumped out of her chair, got on the phone just outside the room. She wasn’t pleased. It was corrected before she sat down. Fortunately she teaches Radiology students that class. I imagine the one who put the findings in had a lot more homework assignments :joy:

The DSA is definitely the best I understand so I’m glad you’ve got great results!

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Yay! That’s excellent news @MariDot !

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