Feeling weird about getting the all clear (?)

General
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Hi everyone,

It’s been awhile since I shared but I’ve been getting though a lot of life stuff. My LTD has been approved till I’m 65 so that’s good news. also managed a lovely holiday with my husband and kids in Costa Rica last month which was my first major travel since I ruptured so that was good.

I recently had my one-year followup angiogram. This is after my rupture of a basilar tip aneurysm in 2022. At that time, I had a coiling for the one that ruptured and a coiling and a stent for another bulb on the ruptured one that didnt break, and a clip on a right MCA unruptured aneurysm. A month in hospital in 2022. Whew.

Then in 2023 I had to go back for a recoiling of the one that ruptured with the two bulbs and the stent, because the coils had compacted and some blood was entering the neck.

Fast forward to this winter and my angiogram in January showed that all three of the treatment sites are completely closed off with no blood entering anywhere and therefore no risk of another rupture. My surgeon met with me and told me that I will have one more angiogram in 2028, and if that looks good, I’ll have no further angiograms at all (!)

While this is good news, not least because I certainly don’t enjoy the angiograms — they are very incomfortable for me when they inject the dye, and they bring up a lot of old feelings— I’m still feeling weird about the idea of not having any more follow ups. Has anyone felt this way ? I think I still carry a tremendous amount of anxiety from that traumatic time and it’s hard to let it go.

As a side issue my cholesterol has gone up in the past 6 months into a too-high territory, despite my best efforts to eat well and stay active. I’ve never had high cholesterol in the past and am aware that I need to pay attention to my vascular health. I’ll see my family doctor about it but just wondering if anyone else has experienced this. I did have Covid for a month in February which kept me from my regular walks and swimming.

Anyway hope everyone is doing ok and thanks again to the wonderful moderators who keep this site going it’s much appreciated :purple_heart::purple_heart::purple_heart:

Laura :canada::canada::canada:

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How exciting to get the fully occluded news! I haven’t had that yet and probably never will, I’m good with it. Yes, it did feel weird when I no longer had the myriad of appointments with my surgeon as it felt like she had just become a part of our life. After rupture, and release from hospital, seems we were there in her office every 2-3 weeks. Then it even went to every few months. Eventually months turned to once or twice a year I figured she was weaning us off of her :joy:.

Had my stent installed during the pandemic (2020) and then the six month follow up angiogram back in 2021. But since I can no longer have angiograms, unless it’s to save my life I was put on having MRI/As every three years but the NP for the neurologist I see hasn’t complied, he gets concerned. For one of them, she switched to every two years. We were surprised when I just received a text last week that I actually have an appointment for my MRIs in a couple of months and then the follow up appointment with her and not the NP. The imaging will be done at the hospital she works at and not the one by us. I wonder if she’s as frustrated with the Radiologists at my local hospital as we are as they miss a lot of things, namely the aneurysm itself. Honestly, I don’t know how to feel if we see her. The last time we did was my last angiogram since then yearly appointments have always been with her NP. Maybe she’s hoping I’m over almost dying on the table because of the nitwit RNA who didn’t bother paying attention when I went into full blown anaphylaxis. My surgeon had to tell her to give me a shot, but she said she didn’t have the dexamethasone. Surgeon told her to get it but asked if she had the benedryl, she did and frustrated my surgeon told her to give that to me. Then I read in my portal about the angiogram and someone went on and on about how well trained and experienced the RNA was. I got mad, very mad. Never before had my record even mentioned the RNA and I’ve had some excellent ones. I shot a nasty for me message to her on demanding it be removed and who the heck wrote it up! So no, I guess I’m not over it. I felt like they circled the wagons when I was told the hospital lost the anesthesiology record. I still kick myself in the hinney for not reaching out to the insurance company and asking them to get it for me.

For cholesterol issues, mine is most likely due to genetics, my Dad’s side, definitely. I can’t take any of the statins, tried them all. I take a shot, supposed to be twice a month but I found out once a month keeps my numbers good. I give myself the shot the same day the dogs get their heartworm medicine, it’s easier for me to remember that way.

I’d seriously have a party if I was told that I was occluded. I’d make it a fun theme party, handing out slinkys.:joy:

By the way, I’ve moved your topic to General in case you didn’t notice…

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Thank you Moltroub. I remember your story of anaphylaxis and I’m so sorry. It’s a terrible thing this dye. I have had relatively good experiences during but the second d last one about a year ago the guy injecting the dye was a bit of a cowboy and it makes me feel so ill, I though I was going to pass out. I find it is like a searing pain for a few seconds and then I feel like I may faint. The worst was the tech telling me that it wouldn’t hurt and that it “never” bothers people. It’s jarring when your experience doesn’t match their “narrative” for sure. I can only imagine what the anaphylaxis feels like!

You’re right I should throw a party. Help me mark this transition to being less of a regular at the neurology department! Nothing wrong with that. I just have to trust them that I truly am ok and keep on dealing with the effects of the rupture as best I can.

Thanks for the cholesterol mention. I had Covid in February and march, it was a long one and my energy isn’t quite back even now. Pretty sure that added to the cholesterol issue but I’ll talk to my GP.

I hope spring in SC is lovely for you now. Such a beautiful place and a beautiful season! We’re still cold here but getting warmer slowly. I out out some grass seed this week because we have lots of rain in the forecast and warmer temps. Praying for healthier grass!

Laura :cherry_blossom::cherry_blossom::cherry_blossom:

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Hi @LauraE!

Wow, what great news!! Congratulations about the occlusion!!! :tada: I agree, it is a bit of an odd feeling when you are released to “go live your life” and don’t see your doctors every couple of months. I am slowly adjusting to it, while also not at the same time … which leads to your question! But, first some background…

After my follow-up angiogram in which my aneurysm was declared occluded, I mentioned to my neuroradiologist that I had been getting dizzy. Like every morning dizzy and light-headed which was not the norm. Off for a CT scan to check on my hydrocephalus (co-morbidity), but all was fine. Of course, you know what radiology is like, when looking for one thing they find something else (infarcts)! :zany_face:

Upon learning this, my neurologist recommended adding a cardiologist to my team, as one of my neurologist’s goal for me is have an LDL < 70. Like you, I try to take good care of myself these days (MIND Diet follower & exercise frequently), and although it was <100, it was not that low, and I wasn’t sure what else I could possibly do to get it down more! :rofl: [To be honest, my cholesterol actually went down by ~10 points from my 2025 → 2026 annual exam, which I attribute to the MIND Diet as it was really the only thing that was that different.]

As expected, my cardiologist put me on a mild statin. To be honest, I have not yet had subsequent bloodwork to know if it is working, but one of my parents had good luck with this same Rx, so I am hopeful it will work with me, too! :crossed_fingers:

Certainly given our genetic tendencies, IMHO, I think you are wise to pay attention to your vascular health. To paraphrase my cardiologist, sometimes the liver just needs to be told to stop making it!

Hoping all goes well with your family doctor next month. Sooo happy to hear you are doing so well up North!!!

Fin Whale Fan :whale:

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Don’t you love it when people try to put all of us in their nice little box? Your experience reminds me of a cartoon I saw decades ago where the patient is sitting on an exam table and the doctor is holding a huge wooden mallet (commander is the proper name) and says to patient “this won’t hurt at all”. I think it stuck in my brain because Dad would tell me “This is going to hurt me a lot more than it will hurt you.” when he would tend to a boo-boo. Short story is I had impaled a hunk of redwood in my foot when I was still in the single digits and ran barefooted across some redwood fence panels Dad was putting up in Downey California. Kicked him in the face, gave him a heck of a black eye and believe it or not, he actually took me to the ER!:joy:

If I’m remembering correctly a lot of members have shared that they get some level of pain when the dye first starts in. I’ve never had that experience I don’t believe but of course I’m doing my relaxation breathing which absolutely helps me tolerate more pain than the average person, in my mind. It definitely helped me stay walking on the grass and not feeding the roots when I went into full blown anaphylaxis.

BH will swear on a bible that I had COVID last year. It took two rounds of antibiotics to get me feeling a bit better but took a few months to feel right with the world. The PA at my allergist was upset with the findings from the imaging I had and did a breathing test. No I don’t have COPD, she also agreed with BH, asked if they did a COVID test in the beginning. Nope, BH was in a couple weeks before and was tested but was negative so the guy I saw didn’t bother to test me. PA thinks it was a mix of COVID and my allergies. It would take me 20 minutes to get up to the house from the tractor shed instead of the two or three. It’s decently steep but I had to keep stopping to breathe. Again relaxation breathing helped get enough air into my lungs.

Grass seed, how wonderful! I am not putting any out until the grader gets done and I can amend our very poor rocky soil. Hoping it doesn’t break my plug aerator. Both graders have said they’ve never seen so many rocks at one piece of land. If they were decent size , I would use them to make raised beds. Unfortunately they’re mostly fist size or smaller. I’ve often wondered if Canada’s Agricultural Department offer free soil samples? In the USA every county has an Ag Extension Office where we can get the sample boxes and take them back. The county office will send the samples to the State where we get the results now via the internet!

Please let us know if you have a party! I sure hope you do. I’m celebrating for you!