Brain Aneurysm Support Community

Lucky but frustrated with an un-ruptured annie

I feel really fortunate. I found out that I have an aneurysm without a rupture. I have time to react, plan, and prepare. I have time to seek the best treatment. After reading so many SAH stories, I know how lucky I am. That said, I am feeling frustrated today and need to vent a little bit so I hope you will indulge me. :wink: I have been offered either clipping or coiling/stenting for my right-sided Acom annie. BUT a thin-slice MRI shows compression of my optic nerve on the left by my brain (which apparently is prolapsing down onto the nerve for some unknown reason). In addition, I am being treated with Indomethacin for left-sided headaches and facial pain that they believe to be caused by hemicrania continua. The Indomethacin works, but it is not something I can take long-term because I am hypertensive (on two meds for that now). :frowning: I am a high school teacher and I have a three-year-old, so life is super busy. My husband is self-employed and busier than me. I am trying to decide between the two procedures offered, but just found out this week that the neurosurgeon wants me to see a neuro-ophthalmologist prior to going ahead with any treatment for the aneurysm. There are no neuro-opthalmologists in my area and they have ONE at Mayo who is booked through May. My doctor referred me and they will try to squeeze me in. It’s 6 hours away, so I will need at least some notice…Like I said, I am a teacher and I was hoping to schedule treatment for the aneurysm in May/June to have the summer to recover. My insurance is through my job and I don’t want to take unpaid time off if I don’t have to because it is an economic hardship for my family. I completely understand why it is good to be thorough in the workup prior to treatment and to choose the best course, but I am tired and frustrated and my family is tired and frustrated too. Processing all of this, living with these headaches and vision issues, and trying to work and be a good wife and mother while at the same time trying to think ahead and prepare is exhausting. Thanks for listening. I am sure there are many here who understand my frustration. :slight_smile:
Jennifer

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Good for you! Just being a high school teacher shows you’ve got gumption and a strong spine! It may work out well…I’m wondering if your Dr. could ask the other specialist to review the scans first for them and then decide if you need to be seen. And I wonder if the Mayo Clinic could do a FaceTime with you, unless he or she needs to do all the poking, prodding and hmmm,mmming first hand.

There’s pros and cons to both procedures. Neither really trumps the other in my opinion. Which one is your doctor most comfortable with?

Perhaps someone will call in sick the day before their appointment and they’ll contact you! Fingers crossed for a quick exam

Interesting idea. I know that they want visual field testing as this was recommended by the radiologist. Perhaps that can be done by a local ophthalmologist and then sent to the neuro-oph for consult?

My doctor said he would do either surgery but seems to prefer the coiling/stenting. I think the determination depends mainly on whether the optic nerve compression needs treatment, though. If they have to open me up for that, then the aneurysm treatment can be done too. That’s why we have the delay. On the MRI report it states that this type of compression usually causes progressive neuropathy, but it is super rare without an underlying pathology (usually a tumor) so they probably aren’t sure exactly what to do with me at this point. :slight_smile: I am glad they’re being thorough. I wouldn’t want to have one surgery just to be told shortly after that I have to have a second! Again, I really am super lucky to have the opportunity to plan ahead and I feel guilty even complaining about it!

Thanks for the idea and I’ll keep my fingers crossed for a cancellation too.

Perhaps a local ophthalmologist has the machine for the specialized testing, ours does with one ophthalmologist who can read the results. It never hurts to ask, the worse they can say is “No”. And you’re already prepared for a day trip. We are just a bit over an hour away from the neurosurgeon, so we usually pick a new restaurant in the big city to go to and I stop at the tea store and pick out some new teas. Sometimes if we have enough time between the two appointments, we go to Old Salem and walk around.

At least you can tell folks you are a conundrum. Not wanting to complain? jeesh girl, you have a lot on your plate, vent all you want! Venting is not complaining :slight_smile:

I couldn’t read and not reply. I would feel all the same feelings you’re having! I’m sorry for all the added frustrations you’re experiencing on top of an already stressful situation. I think you got some great suggestions already about perhaps a local doctor helping or the hope that a cancellation would allow you to get in sooner. And I think that as moms we are always worried about still being everything to everyone. Of all times I would really encourage you to just focus on you and your health and try not to worry so much if you’re not being 100% to everyone else. I’m terrible at this so it’s completely unfair of me to say that, but I think it’s important to hear! As for clipping vs coiling that’s hard for me to say. I was clipped and am so glad I was but for you the coiling might be better and has a shorter recovery. If you have a neurosurgeon you really trust then put your faith in them and use all the information you’re receiving to guide you. I also understand the feelings of guilt with an unruptured aneurysm. You’re not alone. Again, I’m really sorry you’re going through all of this but stay strong and feel proud of yourself. I truly feel like the waiting and all the appointments prior to surgery is hands down the hardest part. You’re doing great!

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Check out Dr. Mark Kuppersmith
Opthoneurologist in NYC

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Research both types of procedures, and ask questions here about actual experiences with each procedure (or read past threads about them), if you indeed have a choice. Maybe slow down and wait until you get all your doctor opinions first. If you don’t have a choice, no sense wasting precious time researching a useless option. Patience is the hardest thing in these times, I know first hand. The two months I waited from diagnosis to surgery were the longest and worse imaginable. Red tape issues with insurance and doctor referrals and docs that were over the mountain pass (in the dead of winter) and a two day trip at minimum, with three little girls I’m a stay at home mom too (aged 1 1/2, 4, and 7 at the time seven years ago for me). We also all caught norovirus, some of us twice, and I barely made it to my first specialist opinion. I was soooo distraught. My personal lesson was: I can’t do this. I should’ve listened to the Good Book sooner. When Peter walked on water, he was great as long as he kept his eyes on Jesus. The minute he looked away, he started drowning. Same thing happened for me - I immediately started looking around at all the horrors I was experiencing and forgot to let God handle all that for me. I made it all worse for myself. And I didn’t reach out to others in my life and ask for help and tell them “I can’t do this”. The stress isn’t good for us - it can hasten a rupture (and yes, I understand the ridiculousness of telling someone who’s being bombarded by one bad thing after another to not stress out). I know you have a lot to handle right now - weed out the unimportant things, the things that can wait (they’re there, take a minute and really see what’s in front of you), and focus on the priorities only. YOU are a priority. It’s the plane scenario: you have to put on your own oxygen mask FIRST or you’ll pass out and won’t be able to help others. It isn’t selfish, it’s logic. Be your own advocate and prayer works! Please vent any time you want - that’s the best part of this site. It’s a safe place to say all the things you maybe can’t say out loud to anyone else. And the kicker is, everyone here GETS IT. Free therapy! Hang in there and keep us posted on your journey!

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Do your research. You mentioned three separate procedures “Clipping” usually means the surgeon opens your skull and moves brain tissue around to apply the clip onto the aneurysm. “Coil” and “stent” are different things. The “stent” is more accurately called a blood diverter, it doesn’t work like a stent to hold open an artery - instead it slows blood seeping into the aneurysm, and the wall of the blood vessel heals itself. This metal mesh tube becomes part of the walls of your blood vessel. Coils are balls of springy wire shot into the aneurysm. The coiling process creates a blood clot that they hope will close off the aneurysm. Coils and blood flow diverters are applied through your artery - like an angiogram. This is still brain surgery, but to my mind a better choice than having my head opened up. I had the Pipeline diverter installed in 2014. It hasn’t been a perfect experience, so don’t do it if you don’t really have to. Regarding the ophthalmologist - that seems essential in your situation.

I am doing a lot of research and there is a lot to learn. I was referring to stent-assisted coiling (SAC). It is different than having coiling because it is for wide-necked aneurysms and is intended to prevent the coils from migrating into the parent artery. Mine would require a Y-configuration with two stents. Complication rates are higher for stent-assisted coiling than for coiling alone and there are many factors to consider. For me, my situation is further complicated by a compression of my optic nerve on the opposite side due to brain prolapse. Right now I am pending a neuro-oph consult at Johns Hopkins in April. I cannot make any decision before then as we don’t know the full extent of that problem yet. For now I am gathering information and framing questions for my next consult with the neurosurgeon and hoping for a surgery date (whichever type it is) in May/June timeframe. I feel fortunate to have the time to work it all through since the aneurysm is unruptured.

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Hi Mary2014!
What was your “not perfect experience”? I had mine fixed with pipeline stents in 6/2016 and 7/2016. 2 on right side, 2 on left side. I do have balance issues sometimes and would like to hear what you experienced. Still finding my new normal.

:heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart:
Big hugs and sincere wishes of peace for you. My life situation was similar in that I was teaching an I too had demanding family responsibilities. I know how it is to plan medical procedures during the windows of time off. It is so difficult to plan for subs too. My aneurysm was swift and I had a lucky recovery in 2011. I am now a retired teacher, after 30 years, yay! I moved and live in a city now and will go to a new neurologist for a look//see in the coming months. You are incredibly STRONG. Best of luck to you.

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Wow, there is so much I could write - but long story short, I had a blindness episode, get more lights and visual auras than ever before, and my implant often aches. I take aspirin daily and have chronic loud tinnitus, also I am allergic to nickle and cobalt, which are both in the Pipeline and cobalt is in the contrast that they use for angios, so it takes me twice as long to heal. I have chronic allergic problems with my lips and tongue which started the second year of having the implant. The one doctor that has helped me the most has been an allergist.

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You are one strong lady! Keep positive and looking for what will help you. Remember we are here for a reason.

Good news! No problems with the optic nerve! Now I can schedule for treatment of the aneurysm! The neuro-ophthalmologist also gave some good advice on my headache/ face pain issues. Definitely worth the trip to Baltimore.

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Fantastic news! I’m in K-12 Education and, like you, was lucky enough to have discovered my unruptured annie with time to take action early. I’m 2 weeks past having a pipeline device placed, and have recovered really smoothly. Best of luck to you - thoughts and prayers coming your way!

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Great news!