Unruptured anyurism recovery

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Hi my name is Skyla I’m 36F and on August 27th I went to the ER for headaches that would not stop for two weeks nothing helped. They did an MRI and found an aneurysm. I was transferred to the big hospital where they do aneurysms and strokes. I was admitted and there for 5 days. Where i went through 3 angiograms and they put 5 stents and 2 large coils in. My aneurysm is/was 2.2 × 2.4 × 1.6 cm and is/was located in the right cavernous carotid artery. I was discharged on the 1st of September.

As of right now I am still having very bad headaches worse than before the operation but I am also losing a lot of hair at the base of my head. I have asked the nurse if the hair loss is because of anything related and she has said no then proceeded to tell me it’s my thyroid but I believe the hair loss is due to radiation and stress. My question is has anyone else experienced hair loss? How long did it take to stop or slow down also I take Tylenol for my headaches but it barely touches them is there something else someone has found that works better? I’m all for trying anything at this point

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Holy Moley are all those measurements in centimeters?! No wonder you’ve got a headache! My hair thinned a bit after each of my procedures but it recovered. I have fine hair so hair loss was a big deal sorta.

Have you had your thyroid tested, is that why the nurse says it’s your thyroid? I’m pretty sure they won’t know until you undergo the testing and then a doctor to tell you. I love RNs dearly and credit the many that worked with me for helping to save my life, but not one ever provided me with a diagnosis and sometimes they’d not answer a question and let the doc do all the answering.

I can armchair some reasons for the headaches and let you know what has worked for me on all my angiograms - contrast dye, dehydration, brain repairing neurotransmitters and their pathways. My Neurosurgeon’s mantra for patients and her family is the same - Hydration, protein, hydrate some more, rest, and repeat. One of our members recently reminded others to make sure they’re getting electrolytes which I do tend to forget to mention because my regime from my surgeon is for every sports drink I have to at least double that in water. I always have to increase my protein and the RDN in NSICU said minimum 90 grams a day. I use protein supplemented drinks and sometimes energy bars. I have always had a tendency of not eating when I don’t feel well and that’s not good. But for every angiogram I’ve had, she had me do the Gatorade/water regimen for 3-4 months, sometimes longer. The dye definitely gets to me. It can be difficult but you might want to give it a try for a few weeks to see if it helps. Yep, I wrote a few weeks, that’s not a typo. Also when you might want to try a cold cloth as sometimes that can help. Be careful with NSAIDs as one of my Neurologists said they can cause secondary headaches.

Good luck! I hope other members will respond and let us know what works for you!

I ruptured so my headaches may not have been caused by the same as yours and my aneurysm was just in the millimeters not centimeters. If the surgeon hasn’t referred you to a Neurologist yet, you might want to go see one. Usually surgeons feel they’re done when they finish a repair and will refer you to a Neurologist. They’re not always correct but the Neurologist can help more and follow you.

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Yeah those are all in CM.Best they can tell it’s been there for 5-10 years. I’m just thankful it never ruptured. I have not had my thyroid checked in some time but it’s just at the base of my skull which is where my headaches start then they move to my right temple. It’s not hair loss all over. I just found out today I had two coils 50cm in length so I have 100 cm of coil in the aneurysm plus 5 stents.

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@Skyla3710
That sounds like a giant aneurysm, wow! and now you have all this hardware in your brain! I must say that it was good that they caught it in time before it ruptured! My suggestion is that if you try what @Moltroub suggested about the protein and hydration and you still have headaches that doesn’t go away with Tylenol, reach out to your neurosurgeon and ask what they recommend. I know that sometimes they prescribe cortisone if the headache is too bad, but this is during the stay in the ICU, and I don’t know if this is the case later. But it doesn’t hurt to ask.

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Wowza! So that’s about 39 1/3 inches! I have never added up the length of all my coils, I might do that one day just to see how much is in my aneurysm. With my second repair attempt, my Neurosurgeon told us she kept pushing the coils in and one of the Residents thought it was enough. She did not and kept pushing more in. I think the coils kept finding a home in my daughter sacs, as I have a whole big family of them😂

Growing up we didn’t have the metric system. I do recall a sign on the Pomona Freeway I think it was, that the State put one sign up telling drivers how far Los Angeles (or Pomona) was in Kilometers. I did eventually learn it for my hobby as I find it to be a bit easier, but I’m not proficient at it, my brain still wants the Imperial system. When my Neurosurgeon told us mine was about the size of a pea, I asked which variety as peas come in various sizes. I was serious and everyone thought I was joking. Her Med Student brought me a rule so she could show me.

I’ve been told by all my my doctors (Neurologists and of course my Neurosurgeon) that there’s not a way to determine how long we’ve had an aneurysm. I find it very interesting when members share what their specialists think. I have been told they can be caused by genetics and head traumas among some other things. I’ve had quite a few head traumas over the decades and I just blame my Dad for most of my genetic maladies

I find relief with massage therapy as well, but do try the hydration and protein first.

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My goodness!

Do not fear the hair loss. Yes, it’s disturbing when you see bunches of it in the shower. In fact, I cut what was left of my long hair to a bob, so there would not be so much of it to fall out.

The rest was already shaved from my shunt. It took about 7-8 months before a slowdown started happening. It’s gradual when it slows down, and quite alarming when it falls out in the beginning. Especially if you have waist length hair.

My hair has grown about 6-7 inches in the year since i cut it, so it’s getting there. I may never have it that long again, but that will be a personal choice, not because it won’t grow back. Fear not.

the headaches, i’m not sure about. when i got home from hospital, and i’d wake up in the morning, the first realization was “BLOODY HELL MY HEAD HURTS!!” and i was reaching for pain meds even before fully opening my eyes.

those have gotten better with time too. i usually don’t take pain meds at all, then i’ll go for a span of a few weeks where i keep getting i call it “ice pick” pains in my head. They are all totally random, and different, and i’m just at a loss to explain it any better.

I do know that in general, i feel better and stronger, but it takes a looooooooooong time. doing things that bring you joy helps. for me, being on my stair machine helps. As God is my witness, i am GETTING back up to the top of St Pauls Cathedral!! 528 steps.

Have goals, and keep them. Even if it’s just baby steps around the house. Every time you accomplish something, it’s like a burst of euphoric juice running through you.

All the best for you. Don’t fret. You’ll be okay. xoxo

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This is a scary time for you. It’s all new and so many questions! I had a giant unruptured paraophthalmic aneurysm on the ICA in 2019. The coiling and stent are good fixes. Over and above the increased headaches, hair loss was the most disturbing side effect. It started a couple of months post surgery and lasted about 6 months. Extreme tiredness and lack of energy persisted for over a year. The neurosurgical team was excellent but they didn’t prepare me for such a lengthy recovery. I hope knowing these side effects are common will put your mind at ease and you will have a good recovery. I count my blessings that my aneurysm was discovered in time.

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It sounds like your headaches may be occipital neuralgia. I have those and migraines and I was prescribed butalbital. It works pretty good for me. I hope things get better for you.

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UPDATE: I had been having these huge headaches that were massive migraines and wouldn’t stop so I went to bed and slept. I woke up to he next morning and my right eyelid was droopy and I was seeing double vision. So terrified that I had a mini stroke I immediately went to the ER. They did a MRI without contrast and said they think they see a tear on my brain. So I had to go back to the big hospital and was admitted (9/30/23) once again for three days to the NEURO ICU. They did another angiogram and found that the aneurysm was gone or almost gone and what I was experiencing was pressure from the aneurysm the three nerves for my right eye went through the aneurysm and were causing huge pressure on the those nerves. So I was given huge amounts of steroids and then slowly winged off of them. (I was clueless to how much high doses of steroids would affect my brain and ability to do my job that’s very technical). I was in tears because I thought I was never going to be able to do my job again. But as I slowly got off of them I realized it was the meds. Also didn’t realize they make you gain weight like crazy. So there is the update. I still can’t believe it’s almost or is gone. Looking at the angiogram compared to the first time was like night and day difference.

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It’s wonderful new on your huge aneurysm, good for you! And I can definitely relate to steroids. The first time I was put on Prednisone by an allergist and I wanted 7 course meals after a month or so. One time I was driving down a road that was 45mph and I was doing 70mph waving to a police officer going the other way lol. When I was being treated for my rupture I was given IV of dexamethosone, it made me hallucinate and they flushed it out quicker than I can type. After I ruptured, my PCP put me on a ten day course of prednisone, I made it to day two or three and had to call her office because of what it was doing as it definitely affected my speech and ability to process information. I wasn’t on the phone but a minute or two and her RN said she was going to speak with my PCP. I had to stop it immediately and things improved after a few days. That same RN called each day to talk to me, she said both she and my PCP were very concerned. When I had a flare up of my DM, my Rheum was going to put me on Dexamethosone, but since what happened in NSICU, she decided prednisone would be better, as it seems to be the go to steroid. I explained I cannot tolerate it, they’ve put both under my allergies. She put me on a different steroid, methylprednisolone, a lower dose and shorter duration. Fortunately, I could just barely tolerate it and was near the end of taking it before it started to effect my brain. She had one of her assistants call me every day. Apparently steroids and I don’t like each other.