Hello BAF community! (03/21/2024)
Just want to share my progress – I had previously posted SAH & 2nd annie TBD - emotional ups & downs and had a diagnostic angiogram this past Tuesday to see how the coiling for annie #1 was doing and how annie #2 looked. I thought I was going under general anesthesia, but was awake for the whole thing. I also thought they were going to numb the area of the groin, but nope, I felt every prod and poke – nothing painful, just uncomfortable. I also experienced what others have noted about seeing, with closed eyes, sparkly flashes every time they took an image. The last image, they seemed to flood the brain with dye and that was actually was very much an intense momentary headache. A tiny bit of panic set in, but the doc immediately reassured that we were all done!
I have a follow up clinic visit with the doctor on Monday to review what the next steps will be and what he saw, etc. but he gave my husband a whirlwind synopsis in the waiting room after the procedure proposing stenting the untreated one. The scheduling nurse also came by, while I was in recovery and asked if the doc came by, but said we would be going forward with a stent for the smaller second aneurysm and later called with a confirmed date of April 2nd. I am somewhat relieved to not go the “wait and see” path – my husband and I are speculating that maybe it grew from 10 weeks ago(?) – I guess we will discuss on Monday…
Prior to the angiogram, I was 10 weeks out from the SAH/coiling and was beginning to feel pretty good, sleeping well, going for walks with the dog and few to no headaches. Well, post-angiogram I am back to feeling fatigued, light-headed and headachy, not sleeping through the night again. In preparation for the procedure in less than two weeks, I have started Plavix and Aspirin. From other posts, it sounds like I will need to continue the Aspirin after the procedure indefinitely?
I would be interested to hear people’s experiences/recovery with an endovascular stent – I have read some of the related posts. I was also wondering if anyone has had had any level of success with herbal teas and/or specific vitamins/homeopathic paths that help (in addition to prescription stuff, that is) manage the post-procedure fatigue, sleeplessness, etc.
Separate thing – if you work in a corporate environment, how much did you share with your co-workers - beyond what HR needs to know? Has anyone felt like your job became at-risk post-aneurysm?
No local for the groin entry? Oh my! Perhaps it just wasn’t enough? Definitely tell your surgeon. Also tell him the after effects that are hitting you before your stent procedure. My surgeon never knocked me out for most of my angiograms, I need to hold my breath, breathe, don’t move when she tells me, etc. but I have always talked in my sleep so maybe that’s in my favor. I have always felt the catheter going in but once she gets through to the artery, I don’t feel it any more. It did become more prominent with all the scar tissue I’d developed.
You probably already know I had to drink twice the amount of water for the three bottles of Gatorade, I think they’re 32 ounces, they used to be $1, but are probably $2 now. I have to flush both the dye and the anesthesia out, they set me back a lot.
My stent procedure was the best of all of them. I still remember the RNA’s name, John, who said he’d put me in my happy place and he did. I woke up more quickly than any of the others even though I woke up quickly with those. I also didn’t have the set back with it like the others. Every time I’d have an angiogram the length of time that it took me to get back to where I was before kept increasing. It got up to 9 or 12 months, can’t remember which. I hope you have a similar experience with your stent procedure as I did. Plavix was a short lived experience for me, 81 mg aspirin will be life long. I wasn’t tested for Plavix but @oct20 talks about it and it’s benefits.
Besides the water and sports drink, I also drank green tea with honey and at night time, chamomile tea. Increased protein will help your brain. As always check with your surgeon or pharmacist on any homeopathy methods due to potential drug interactions. I love getting a massage, maybe that can help. Our massage therapist always wants us to drink a lot of water after to help flush the toxins out.
My career path led me to the human services field. The agency I worked at let me go after all my comp, vacation and sick time were used up. I couldn’t have worked if I wanted to and boy did I want to. But I knew if I couldn’t drive more than a couple miles, or at night or in inclement weather, much less find the correct words, I couldn’t work. They didn’t tell my co-workers anything and I didn’t get an opportunity until a colleague retired. The handful of friends I had made at work knew. Everyone else thought I’d just been fired because with the new leadership, it seemed everyone over 40 were being fired. I think with any organization there is always some who will support you, some who won’t and some who will work against you. I’d suggest caution in who you tell. HIPPA regulations prevent any business from disclosing health information. BH who does work for a very large corporation says you may want to tell your immediate supervisor if your immediate supervisor is the type of person who will be supportive and helpful if and when you need it, otherwise don’t. Politics in the workplace is a nasty thing isn’t it? Unfortunately, not everyone acts like adults in any profession.
I didn’t realize that scar tissue would develop from angiograms, but it makes sense. At one point, I did feel it while he was “threading” it in and winced, and he apologized. I don’t even know what you’re talking about with reference to the Gatorade – they didn’t tell me to drink anything. I was aware that I should drink “more” liquids after, probably from your previous advice/post, but not from the nurse or doctor.
Thanks for sharing about your stent procedure experience – it’s encouraging, while knowing there is always the caveat that mine will have variations to anyone else’s experience. As for aspirin, I guess I will just add it to my regular handful of other pills! I love me a massage – I’ve been meaning to go actually, but it’s so close, that I should walk, but the distance takes that extra effort for a walk… lol!
So I may have already put my foot in my mouth at work. In an effort to be transparent, the early morning before I found out that I had an SAH, while in the ER, I emailed my principal and project teams (I am an architect/designer) who were kind of awaiting my return that Monday from my two-week vacation. Initially, I said that I was just checking myself out at the ER as a precaution and was going to be taking the day off and will see them the next day. Of course, I “replied all” once I knew what was going on, and relayed my news of a ruptured aneurysm. A number of people already know within my firm. In retrospect, of all the things I thought of after the doctor tells me my brain was bleeding, I think of informing work – and then my family abroad! I suppose putting all this in perspective, the universe was also telling me that I should adjust my priorities!
Thanks again for the correspondence and being part of this community support – I certainly will keep you posted!
@Kimoy I second what @Moltroub said, be careful with the homeopathic drugs and herbal remedies. They may seem to be harmless because they are “natural “ but I know by experience from my education and previous work that they can do much harm and interact with the medication you are taking. The worst example is from many years ago when someone had taken capsules of green tea and ended up being a liver transplant recipient!
Always ask your pharmacist or doctor before you take them.
I always take a walk about after my massage, it helps the soreness dissipate quickly. So taking a walk back and forth for a massage sounds ideal!
The Gatorade is to replace electrolytes I use the lower sugar ones. There is an amazing amount of sodium in Gatorade, so I try to get the ones with the least amount. I had worked in a factory that made it off season (apple season) whilst attending university. Different flavors had different amounts but somewhere between 42 lbs and 51 lbs per 1000 gallons of water. That’s a lot! But the sodium is needed. We always had to taste test it as well as other tests, there were some that I absolutely started to refuse to taste. I wasn’t happy when my Neurosurgeon told me to drink the stuff😂. I only knew about the three or four they had back then. Fortunately they’d come out with more flavors and based on something a father said to his child I tried the ones he preferred. It was a good day and I found I liked some of his flavors as well. There are many different types of sports drinks now. Upon the recommendation of another member, I’ve tried drip drops I think it’s called. One I picked tasted like I was chewing on a piece of alfalfa🤣
Priorities do change after we experience and survive a rupture don’t they? I did chuckle when you told your colleagues first and then your family. My supervisor and a colleague I didn’t care for came unannounced to NSICU. My supervisor hated hospitals and I wouldn’t let them come in. I was a mess and didn’t want my supervisor to have to deal with all the machines and IVs in me. Now I wish I did as I was never to see my Supervisor again, she left to work at another Agency.
After we survive a rupture, family however we define them becomes most important and we begin to define ourselves not by what we do, but who we are. We are so much more than our profession, though I think it’s cool that you’re an architect/designer! It’s a fascinating profession. We also don’t ignore the simple things in life. For me, it was a minor change as I’ve always enjoyed what nature brings my way, for others it can be a complete turnaround.
@Moltroub I have never been very athletic and never liked the taste of Gatorade when I tried it. I placed a Costco order last night and decided to order a product called Prime Hydration as an alternate (Liquid IV had WAY more sodium). I have been drinking Coconut water though. I am also now more actively watching my sodium intake as my BP is still acting crazy, even with the added Beta blockers that my PCP started me on last month.
Yesterday I had a bit of meltdown after my BP got up to 151/99. It was 152/103 momentarily after I had my hemorrhage in January, which I did not know that that is what it was — so the numbers had me back to PTSD mode. I was just beginning to feel like I was managing the emotions a bit better… what a roller coaster… The numbers eventually went back to manageable — I texted my neurologist friend with details and he suggested I take half a BP pill based on my daily dosage. I have a follow up with my neurosurgeon tomorrow, so will mention all of the above.
@oct20 thanks for sharing that - yikes! Yeah, I have been trying to consume what I need nutritionally since the doc had me stop any multi-vitamins a week before the angiogram and now rolling into my stent in just over a week from now — I am trying to eat more fruits, veggies and @Moltroub more protein (whilst avoiding red meat!).
Thankfully, this guy keeps me company when everyone else is at work and school.
He’s a beautiful pup, happy to hear he’s also a great companion!
When I was having vasospasms for 21 days in NSICU they had me on medication to keep my BP up really high. I was doing my relaxation breathing and I got told to stop. Stop what? The doc said that breathing. I was confused and asked if he wanted me to die. He didn’t but the relaxation breathing was keeping my BP lower than they wanted which meant they had to keep giving me more. He had a Neurologist with him. That Neurologist wrote up an article in a Neurology magazine later. It was in the waiting room of the Neurologist at my first visit. I didn’t appreciate the article since he took all the credit for it. I’m not keen on people who take credit for something they didn’t do. Try it, practice all the time so it becomes second nature.
Speaking of mindful breathing, infants LOVE to emulate the actions of their parents. And I’ve always wondered what kind of seeds would we plant in our toddlers if they saw us create little moments of mindful breathing throughout the day. Would we be equipping them with a helpful tool to better handle the topsy-turvy and value-inverted world that they are confronted with today? https://www.youtube.com/watch?v=w3Aol2CCsdo
I wish I knew about this more mindfully when my kids were little and more impressionable. Never too late to “mention” to the teens now, but it would probably elicit an eyeroll
@Peter has another interesting thought! You can do it as a family project! I didn’t learn it the way you have, but I did teach the way I learned back in the mid ‘70’s to kids of all ages and their parents when I worked with high risk children. The boys were very keen on it when I made it a game the first time I taught it to them. I’d have them try to hold a fist whilst they followed my directions and watched me. It was impossible, so they bought into it the first day. With girls, well it was a bit more difficult. I learned to get the whole family involved, teens don’t like to be left out of things.
So I had my follow up visit this morning – all this time (11 weeks), my husband and I thought that the first aneurysm with SAH was around 10 mm in size, and in the midst of recovery and just plain “one foot in front of the next” approach to all of this, I only just asked today… the one that ruptured was actually 18x14x11mm - right behind my left eye. I have acknowledged how lucky I felt before, but I think I am just now realizing how lucky I am, given that I was traveling at the time. Now pivot to second “annie.”
In looking at the images, the second one is about a third of the size of the first, and shaped like a heart – again, forgot to ask what size it was (maybe 6mm-ish). I learned today that the doc will be first coiling and then stenting it, as long as everything goes as planned. I then asked him about what I see on here from other members’ stories on “bafsupport” - whether I need to get the first coiled one stented too… which segued into him showing me that “annie-01” had a little bit of flow, nothing to be concerned about, but we will be Flow diverting him too with a FredX in likely a month or so after “annie-02.” Since “annie-01” is on the left and “annie-02” is on the right, he said he generally practiced not doing two on the same day (unless of course necessary).
Annie-02 will be stented on April 2nd and I will be turning 50 on April 8th. I suspect my grand 50th birthday will be spent resting… and I have so much to celebrate and be thankful for
18 mm, dang girl! I always think those of us who rupture are really lucky to survive. I’ve always thought we still have a purpose here on God’s green Earth as well. We have some amazing stories of survival and yours is up there! I also hope your FIL I think it was, doesn’t feel bad about not knowing you had a rupture, something I’ve just always wondered.
I’m glad you’re getting the other one fixed. Turning 50 is a great thing, I worked the day I turned 50, I think I was doing Intake that day and not On-Call. It’s been awhile. Hopefully you’ll have a nice dinner with your family at least. Whether or not in a restaurant surrounded by close friends and family or at home. When I was growing up, we didn’t have to do chores that day and always had our pick of what we ate for dinner. BH and I still do that to this day. BH had the same thing growing up. How ever you celebrate birthdays, do it!
@Kimoy
You are indeed a lucky girl to have survived! Have a nice dinner and enjoy your 50th birthday!
When I got my aneurysm repaired with a stent and more coils , six months after it had ruptured. We decided to do it in mid April, one day before my 66th birthday. My neurosurgeon asked me if I wanted to reschedule it but I told him that it would be the best birthday gift ever to not have to worry anymore about it. Said and done, on my birthday, the breakfast tray had a Happy Birthday note from the kitchen. The RN in the ICU gave me a chocolate cake before they sent me home. She whispered to me “don’t tell doctor xxxx about this
I think the protocol says that our blood sugar levels have to be in control while we are in the Neuro ICU.
So many feelings with survival from something like this… we are pretty certain that my FIL feels terribly. It was just so complicated – maybe if we were near a hospital with CT scan capability, and I was more coherent and more fluent in French when having a sort of stroke and we weren’t trying to catch our train… my hubby has been talking to them, so I think it will all smooth over.
Based on how I feel now, a week after the diagnostic angiogram, yes, I can only hope for a nice quiet dinner (for some reason, we order Thai food for birthdays) and some cake
Thanks for the reminder to hydrate – I think it helps with my headaches.
Thank you for replying to such a personal question, I very much appreciate it. I’m happy your husband is able to ease things over with him. I adhere to the belief that doctors cannot know everything.
Your story reminds me of the RN that taught me how to do the style of relaxation breathing I do and have taught a multitude of times. He would often tell us “If ifs and buts were candies and nuts, the world would be a much sweeter, nuttier place.” I don’t know why that just popped in my head, but it did. He was also the first male RN I met, a very good instructor and told me that the medication I was on had been discontinued months earlier and the pharmacist or doctor should have told me to stop it. He made a copy of the FDA recall on a mimeograph machine for me to take to my parents. Apparently the drug was killing people right and left. Dad was quite upset and immediately went down to the pharmacy with the paper and my medication. He came back with a new prescription. How he did that I’ll never know as it was a Saturday afternoon. I’ve often wondered if pharmacists back then had the doctor’s home phone number.
Thai food sounds like a phenomenal way to celebrate birthdays! We can’t get real Thai food here, heck we can’t even get real Mexican food here, it’s all something resembling Tex-Mex or Taco Bell. Sad but true. Whenever we would go up to DC, we’d eat at a different restaurant every meal, it was our version of going around the world in the short time we stayed up there.. I do hope you enjoy your birthday it’s something to be proud of!
@oct20 I found that the ICU nurses (most of them) were super! That’s really sweet that they snuck in some cake for you The one thing that I did not expect in ICU, was not being able to take a shower – I mean, there’s only so much a wet rag and a pink tub can do. One of my nurses, the only male one (after I asked him for one of those shower cap leave-in shampoo thingiess) offered to “wash” my hair in one of those little pink tubs. He said he was a professional – it was the sweetest thing that brightened my little day.
Update: I had my second aneurysm ((5mm x 6mm) coiled and stented a week ago and spent one night in ICU for observation. All seemed to have gone fairly smoothly, though my doc said I had a “kink” in my artery in the path of the catheter. Oh, which reminds me, they went through the radial artery of my right arm. I am constantly amazed by and grateful for what can be done by modern medicine and our highly trained neurosurgeons. Anyway, back to my story, somehow he maneuvered through/around the “kink,” and then the second “blip” was that after he coiled and was inserting the Fred X Flow Diverter, it got “ensnared” in the coil, but again, all in all it made its way to be in the “right” place." I’m not going to lie, when I read that in my report a few days later, it gave me some major anxiety and maybe a little loss of sleep that night.
So that was Tuesday and by Sunday, my sweet husband managed to throw a little surprise gathering of friends for my big 50th! And I have SO much to be thankful for! I would say, if there is something to “share” with the “baf family” is to remember to be thankful for the little things as you make baby steps forward. I had actually weaned myself off my afternoon naps before my last “observational” angiogram two weeks prior and have since had to revert to making time for that again, which kind of feels like a step backward, but I keep reminding myself that it’s just the path forward and sometimes, we have to loop backwards to move forward.
Next step will be in 2-1/2 months or so (early June) to get my first “giant” guy (18mm x 14mm x 11mm) stented, since back In January, he was the “leaky” one and I was not on blood thinners then.
Great update Kimoy, I’m really glad all went well with your procedure! How was the Thai food for your birthday celebration? Naps aren’t a bad thing at all and definitely not a bad step backwards, it’s like being on a roundabout, is all. Don’t forget protein and hydration along with that rest, please.
We had Thai food on Saturday when my freshman son was here to celebrate with me - so that was even more special . We had cake and the works, which is why they properly surprised me the next day with a backyard party.
— I am trying to eat more fruits, veggies and 
- it’s the little things…
. I do hope you enjoy your birthday it’s something to be proud of!
The one thing that I did not expect in ICU, was not being able to take a shower – I mean, there’s only so much a wet rag and a pink tub can do. One of my nurses, the only male one (after I asked him for one of those shower cap leave-in shampoo thingiess) offered to “wash” my hair in one of those little pink tubs. He said he was a professional 
. We had cake and the works, which is why they properly surprised me the next day with a backyard party.