Hello, so I am new to this group. First I would like to apologize for my english because I am coming from Slovenia. I will try my best.
I was diagnosed a month ago with brain aneurysm on carotid artery I think ophtalmic or something like that. It is around 8 mm and neck is around 3 mm. So they suggested that I will have a flow diverter put in my artery. But now there is a problem, because I have to wait for months for this diverter to come from Germany. I am really scared that in the meantime my aneurysm will burst. I mainly found out I am having it because of dizziness and problems with my right eye because I get double vision on this eye. I don’t know what to do in the meantime for my dizziness and other symptoms. I am also very scared of the procedure. Does anyone now how long is the procedure? I really am scared as I am only 24 years old. Was writing my master and also going to work, but now I don’t do anything.
Welcome tea1204! Your English sounds fine to me and you can speak at least two languages which I think is great! I used to speak enough of Spanish and German to get by, but decades of not using it, and I lost it. Keep practicing!
I’m curious as to why you stopped working and stopped working on your Master’s. Is it because of the dizziness and double vision?
Your fear is understandable. The most important thing to know is if your neck gets stiff, you throw up and your head hurts worse than anything go straight to the Emergency Room, don’t lay down, don’t take any type of aspirin. Get someone to take you.
I don’t have a flow diverter. I did rupture and that surgery took about 7-8 hours. The following repeat coiling took about 7 hours. The third coiling with the Scepter Ballon took about 5-6 hours. The time it takes is due to what they get into when they’re inside. Sometimes things are more or less complicated than originally thought, the doctor won’t know until they’re doing your procedure. I tried searching the Internet and came up with nothing about the time it takes. Hopefully members Who have had one can help. In the USA, only the PED has been approved from what I’ve read, there are other types that are waiting to be approved by the FDA. Maybe if you search on here for stent or PED, you may have better luck.
Did the doctor say your dizziness and double vision are caused by your aneurysm? The reason I ask is because the general consensus among the field is that unruptured aneurysms don’t cause any symptoms. With that being said, I have noticed the members here with unruptured ophthalmic aneurysms often have similar symptoms as yours, especially the double vision.
The only ideas I have at the moment is to stay hydrated with water, stay away from caffeine and don’t use NSAIDs unless your surgeon has given the okay. It’s important to stay relaxed, you don’t want your blood pressure going up so learn some type of deep breathing or meditative breathing and practice all through the day. Exercise such as walking will be a big help
It’s amazing that another country relatively close to yours would take so long in getting to the doctor. My guess is the pandemic has slowed everything down in Europe as it has here in the States.
Please keep in touch, be patient with waiting for members to reply we are a world wide support group and it may take time.
Trying to relax is kind of hard to do since we know we are facing life and death at ‘any second’. However, there gotta be a reason for us to be here, still being alive!! So, praise God that we are communicating with faith.
I so truly envy you being so young. That means you shall have a much better outcome than an old dude like me. I opted for a craniotomy since my 8mm aneurysm didn’t have a neck. Coiling wasn’t for me, Pipeline wasn’t either since my cholesterol is kind of high, and my tracking history with medicine is not good. I tend to get a lot of side effects than others even with the most common painkillers or cholesterol medicines.
Please communicate with your treating doctors and bring all of your worries to them. I assume you have a healthy body for them to work with. That is a big plus for the success of a flow diverter. Have your doctors explained the reason for choosing the flow diverters?
Stay focused on the success of the procedure. After that point, your worries shall be lifted. I will pray for the success of your procedure!
Hello - I understand about the fear, I was diagnosed with a similar aneurysm that was quite a bit larger (22 mm) when located. I needed to wait for 1 1/2 months for the procedure and knew that my job, while I waited, was to do the best I could do to stay calm. I relied heavily on guided medication videos to help me focus and to find ways to keep calm.
It was important for me to stay away from worrying about the surgery or what would happen in the mean time as that was my surgeon’s job. I had a pipe line stent placed and a coil (because the aneurysm had gotten larger than they expected) in Dec. of 2017 and came out of the whole thing pretty darn lucky. You can, and will, too. Just try very hard to stay in today and not to worry about things that are not here yet.
Hi - Just a quick note from someone with an unruptured aneurysm…it was only caught because of the double vision it created by messing with my Ophthalmic nerve in my right eye. A blessing to have it caught that way.
Kim
your history sounds familiar to mine. I was first diagnosed Nov 2018 and got my flow diverter in March 2019. The wait wasn’t nice but you adapt to everything after a while and sometimes i almost forgot that i had a 7mm aneurysm and just tried keeping busy with something. It’s very unlikely that an aneurysm will burst while waiting for surgery, you have to keep that in mind.
Of course i was scared about the surgery but it’s actually quite safe in comparison to earlier methods and we are lucky that these kind of interventions exist nowadays. In my case i had headaches a couple of days and i was fine afterwards. Of course i needed some time to get back to 100% but aside from occasional headaches and the need to take blood thinners i don’t have any problems and my aneurysm is completely occluded by now.
It’s very likely that you won’t have problems too, much more than any negative outcome. Just hang in there and don’t push yourself too much afterwards. The master thesis can wait a little :).
When you have questions feel free do contact me!
Welcome tea1204! I had a similar diagnosis in Dec. 2019 and I was petrified. Mine was located next to the brain stem and I had dangerously high blood pressure. Since I was high risk, they did a procedure within a week in Sac, CA. Fortunately, my 5mm aneurysm did not burst. The flow diverter procedure took 2.5 hours and I was told to go to work within 2 weeks. However, I had severe headaches/head pressure/neck pain for several months. I still have some neck pain but I was told that I happen to be the 10% that experience complications. 90% that have this procedure do just fine------It sounds like you have a lot on your plate with a masters program and work. It’s really important to take it easy and find ways to reduce stress. I learned from this site, that anxiety is part of the process, but doctors never mentioned that. It gave me some comfort that my anxiety was normal and I had to find ways to deal with it. Anxiety classes, breathing/stress reduction apps, yoga, low dose anxiety meds, and prayers helped to reduce it. Talking to others with similar situations helped the most. Getting rest is a priority. School or work might have to be secondary. Your health is the most important. We wish you the best and yes will be praying for you. Keep us updated.
I have experienced something very similar: dizziness and double vision, caused by my 34mm ica aneurysm (unruptured, thank god). It was treated by coiling and a flow diverter (which is, funny enough, called FRED- no joke).
The operation took place exacty two years ago and lasted about 4 hours. Recovery time was ok, maybe a month or so. Unfortunately I have -apart from occasional headaches- some issues with the right part of my body (leg and arm feeling numb and sometimes (or rather most of the time) tingling. Up to now the aneurysm has still a little perfusion (meaning that there is blood going through it), but apparently it is not a big problem, since the doctors decided another operation would be too dangerous. They don´t even know if it comes from the operation…
So all in all: Keep cool, all will be working out fine! Probably they have done this procedure many times and are experts in these things!
Yes it was truly a blessing! Your experience, like so many others here is why I said that our members have side effects that unruptured aneurysms cause despite the scientific community research. Wouldn’t it be great if those doctors would come here and take a poll or something fro all the effects of aneurysms? Thank you so much for sharing!
The amount of support I got here… it is crazy. I am grateful for each story here. Thank you very much, I think I will still have a lot of questions here. I will probably wait for months for this procedure because of covid. So my anxiety level is crazy, I just want to be done with that, but in my country it seems that covid is the only disease as they canceled everything else. I tried joga but with this dizziness is impossible. I think I might be dizzy because of the amount of pressure on my eye. And that is also the reason why i don’t work anymore.
Yes, that is a great idea, I´m really thinking about telling my doctor. He always looks at the MRI, everything looks ok, and so he thinks everything IS ok. My side effects then do not really matter, since he can´t explain them. So he just tells me to see another doctor, a neurologist or whoever. Very tiring and frustrating…
But it could be worse, I am very aware of that
What really helped me while waiting for the operation: Going for long walks through the forest! Made me tired, kept my body busy and relaxed my thinking. Maybe you give it a try?
Hey, I am actually going on a walk every morning and in the evening. Here in my city in Slovenia we have beautiful lake and you can walk about 2-3 km there. So i am doing that to relax a bit. I will certainly keep you posted about everything that will hapen and about the dates of procedure when i get one
Great, enjoy it! I´m working right now, but was jogging in the morning. Exercise calms me down and don´t forget: You´ve probably had this aneurysm for quite a while- why should it rupture right now? What I also started is drawing. I am definitely no artist, but I enjoy working with vivid colours…
I am envious of a lake you can walk around! Your city sounds beautiful. I would take a walk about with you if I could. You would probably have to slow down a good bit for me LOL. I also second an easy hobby. Eastern Europe has some fantastic woodcarvers and pyrography (Wood burning) artists, you might want to check in your area. Doesn’t take much money in either hobby until you get addicted. Or perhaps a musical instrument? If bending your neck increases your dizziness, contact your doctor.
I’m sure you’re correct in the medical field is centered on the pandemic right now. Everyone is working world wide to get it under control. Hopefully they will, sooner rather than later. I just read the other day that Germany has gone into a four week shutdown due to their increased cases. Although what I read of it doesn’t speak about necessary medical facilities, just bars and other public gathering places. But their numbers are increasing as is most of the world. I don’t know what that means for you to get your device, but be patient. I never followed Germany’s cases until you joined and how it could effect you getting your procedure.
If Yoga didn’t help, see if there’s a Tai Chi class you can try, even on line. Start simple, if it makes you dizzy, stop.
Please continue to reach out to us, as you can see the members here are wonderful at giving support!
I am so sorry for what you are going through. Any updates on your situation?
I am worried about mine rupturing too…Just getting ready for an angiogram and I have never had one. I too am very scared.
Thanks,
Mary
Hey, still no updates. I am waiting for another opinion from a doctor in our capital city in Slovenia of course very scared. I will let you know when I get date and what he will say.
Angio was not fun, they just put local aneathesia in my groin area and then they performed angio. It was around 20 minutes and I had to stay there overnight. I think in some hospitals you don’t have to stay there just from listening to other stories. I was having a little pain for a few days in my leg but that is it. I could barely see where they did the cut as it was that small, otherwise no bruising or anything. But I was emotionally really down and they didn’t let me eat in case something would go wrong. So i wasn’t eating for 24 hours or even more. And of course no one could see me there because of covid.
Hi, Here they go through the wrist for the angiogram instead of the leg. I will have to wait 3 to 6 hours before I can leave, but no overnight stay. I am very nervous and my emotions are over the top.
I’m glad the angiogram was a minor inconvenience for you. All mine have also been through the groin but they’ve changed the way they do them and now go through the radial artery at the hospital I go to. I’ve also just stayed for a few hours. Had to show them I could urinate and eat with no issues before they released me. The only time I stayed longer was due to me going anaphylactic and I think it added several more hours, but not an overnight stay.
COVID is problematic for us as patients isn’t it? I hope you have a smart phone and allowed you to speak/see friends and family while you had to stay overnight.
Welcome Tea, I’m sorry to hear you are going through this. You are young and likely at lower risk because of your overall good health. If it helps you to feel less anxious, get a blood pressure cuff and take your blood pressure daily. That was reassuring for me. I have struggled with anxiety most of my life and getting the diagnosis made it much worse. Don’t be afraid to ask your doctors for help. Xanax was a tremendous help when needed. Sending prayers & good thoughts your way. You will get through this just fine.
