Warning: I am sad and frustrated so if you’re looking for inspiration this is not the post for you.
Prior to my stenting and coiling in July, I expressed concerns to all involved - even this forum - regarding issues with follow up and managing co-morbidities. My major concern about stenting/coiling over the open procedure or doing nothing was that I feared a reaction of my inflammatory condition and an inability to manage it effectively because of the anti-platelet therapy. I was also concerned with Mayo’s distance while trying to work etc. and who would follow up with me effectively.
Now my fears are coming true. I have had increasing migraines with various auras. I have a visual disturbance in my right eye which I am becoming more and more convinced is a blind spot because it is there all the time now. I am triggered by light and experience frequent nausea/sea sick feelings. This has escalated over time as I have been trying to work a full time job as a high school teacher. I now have constant headache. My scalp hurts. It hurts to move my eyes. I have pain in my jaw at times. And the worst part is the lack of energy, apathy, and brain fog that is accompanying all of this.
My PCP sent me to the local neurologist. He is sending me for a stat CTA that I will have done today and he prescribed a Medrol Dosepak as we both feel there is an inflammatory component to my reaction (like I anticipated). I am calling to make an appointment with my rheumatologist and with an ophthalmologist today.
Meanwhile, I have been out of work for the past three days. I have very little sick time accrued due to my ongoing medical problems. I like my job and would like to keep it, but I am really struggling over the last few weeks. High schools are bright, loud places and the work is hard. There is no resting while there. I also need this job for my insurance and I am not vested in my retirement just yet. I could potentially take unpaid time and pay my insurance out of pocket, but money is tight. I continually remind myself, though, that my situation is not as hard as some and I didn’t rupture. There’s always that. And I am hoping that at least the CTA will show that the aneurysm is taken care of.
So, one step at a time. I will go for the CTA today, take the steroids, and hopefully I will feel well enough to return to work tomorrow. I probably won’t see any replies for a while because I am trying to avoid computer screens, but I needed to vent and I thank you for listening.
Hi Jennifer, I am so sorry you are having these problems. I have found that it does take quite awhile to get over these procedures. I just had more coils added at the end of Aug. and I still am very tired and have some pain at the site of the aneurysm. My neuroradiologist said that it is normal to have some pain for about 6 months after the procedure. I found last time that it did lessen as time went on. The main thing is that we did not rupture. Be patient. I hope you are feeling better soon. Ida
Hey Jennifer! Vent anytime, that’s part of the reason we are here. High schools are loud, bright and they play music that’s not to my taste. On top of that you have to deal with all those hormonal issues we all get at that age. I do not envy you. I ruptured so I can only speak to my experience and that’s not going to be much help. I really hope other members answer that have had your experience. I do know that you must stay hydrated, keep a sports drink or water with you and drink something every 15 minutes or so. Whatever the doctor has told you to drink.
First, I really admire you for working as a high school teacher. Such important work, but also so stressful, especially if you are sensitive to light. Can you wear sunglasses? The kids might see it as a fashion statement! Don’t despair, you may be on the uphill now, since the first weeks post procedure are going to be the most challenging and what is true today may not be true tomorrow. The brain heals. It might help to get as much sleep as possible and stay very well hydrated. Eat small meals frequently, since my blood sugar wasn’t stable after surgery (no diabetes) and you are taking steroids now. You are wise to limit screen time during the healing time. A bit of advice…Please investigate your disability options even if you think you won’t need them. I tried to keep working after the second surgery and one day, I was offered a small settlement to just leave. Turns out, I could have done much better going on company disability and getting their health benefits extended. I got Social Security disability, but I really lost out. I hope things are better today and even better tomorrow!
Oh gosh so sorry u r having issues. Did u have aneurysm coiled or clipped?
Best advice i can give u is get another opinion
I have had migraines for 40+ years
I have brain aneurysm behind left eye on vessel to eye
I get horrible pain in eye and wish I could remove eye and put it back she migraine is gone
Migraines r no fun. They chge as we age. They do diff things as we go through issues stress as well
My migraines were horrible they r getting better but migraines never go away they go dormant
They sleep lightly and then come full force.
There is prodrome that comes with migraines signs that tell us when we will have a bad migraine
Aneurysm go undetected in 99% of ppl who have them
Talk to dr. Demand MRA and go to ER with bad vision issues.
Some time i lose my vision and after 20 min I go to ER per arrangement I have with my neurosurgeon
I am 3 months post op for unruptured middle right 7mm x 7mm x 9mm bifurcation cerebral artery anni… I also had coiling.
During surgery they found
Extreme tortuosity of the proximal right internal carotid artery, complicated by vasospasm. The vasospasm successfully resolved after
intra-arterial infusion of 10 mg of verapamil.
There is extreme
tortuosity of the proximal right internal carotid artery with 2 180
degree loops. an attempt was made to advance the echelon 10 microcatheter over the Synchro 2 soft microwire
into the aneurysm. However, due to the extreme tortuosity of the right
internal carotid artery, the catheter could not be advanced beyond the
supraclinoid right internal carotid artery.
Directly after surgery I tired easily… Felt like everything was in slow motion and felt like I was talking in slow motion. This mostly resolved after a few weeks . But still have issues with my memory. I can be planning my something as simple as my day and forget mid thought what I was even thinking about.
Sometimes I find myself saying the opposite word of what I want to say and I realize its the wrong word but the right word just doesnt come out.
I was told after surgery that there was no water or blood in my brain. Which means there was no Anuerysm leakage.
I still get pains in my head and tingling in my face and have been told that this is normal because the blood flow in the brain has increased and the tissues/nerves are rejuvenating themselves. I am told I could feel this for awhile and it may never go away. Some others feel it once or twice and may never feel it again.
I still get tired and when I do… I simply rest.
I find that I dont really like being around large crowds or going out to eat often… I like being home.by myself and my dog.
I also notice alot of people stay their distance. They act like an anuerysm is a contagious disease. Alot of “friends” dont even come over since surgery or call.
I am told by Drs… That this life is my “new normal” and it changes everyones life.
I have my first follow up with my surgeon on September 27th… I am anxious to see how this goes as the head pain and feeling of pressure is becoming more frequent… So i have been resting more… I try to listen to my body but sometimes I am.not sure what its saying …keep hydrated and eat protein. I also found that I cannot get overheated for any length of time or the pressure and pain in my head seems to worsen.
I just want to say that I am so sorry for what your going through. And please vent all you want I think that will help some. It’s hard when you have so many demands on you. I am right there with you it just sucks sometimes. But I do hope it does get better for you. Good wishes for you.
I also had unusual sensory issues but in my case, it was a rupture. I completely understand the feeling of being out of place with visual disturbance, photophobia and excessive sound. But, there are easy DIY to take care of photophobia like flip on polarized glasses. It is an expensive solution but BOSE has specialized noise cancellation. This noise cancellation device enhances conversation while cancelling room noise (restaurant noise). https://www.bose.com/en_us/products/wellness/conversation_enhancing_headphones/hearphones.html
In this way, you can control the photophobia and sensitivity to sound.
I would also keep a journal. I am 5 years out. When I reread my journal at year 1, many of the unusual sensory issues have gone away while other still remain. I use this journal where I can speak with my physicians with precise feedback and confidence.
Good luck. Hopefully, your issues will go away over time.
…keep hydrated and eat protein. I also found that I cannot get overheated for any length of time or the pressure and pain in my head seems to worsen.