My 8mm Basilar Aneurysm

General
1

I hope I am posting this in the right place, if not, I apologize.

I was diagnosed via the ER and a CT with Dye, on April 27th, Easter. 8mm Basilar Aneurysm. My CT scan was read by someone in Wisconsin as no one in Kansas at 3am was available?. The ER referred me to a Neurosurgeon and a Neurointerventional radiologist. I cried for, literally, days. I'm a nurse and I knew what a horrible place this was in.

I phoned the Neurosurgeon and asked, while sobbing, for something to calm me down...his PA told me to SUCK IT UP!! I kid you not. I was devastated. My primary finally gave me something to calm me down and a cerebral angiogram was scheduled for 3 days away. It was then, due to my hysteria, moved to 2 days away.

I wrote a "just in case" letter to my 20 year old who still lives with us. My husband sobbed. I lost 8 pounds in 3 days.

Finally the day arrived and the surgeon met with us before taking me in. He said it was in a horrible, if not impossible place to do anything to, but that the angiogram would give us a better picture of what we were dealing with.(I was already planning on going to Mayo if no one in Kansas felt comfortable doing anything to it).

The angiogram itself was easy and virtually painless. I am also in Menopause and a nurse actually stood by and fanned my face when she could and that was so nice.

I was nervous and the nurse asked, "can we give her something for anxiety?", the doctor said "can we just get this done?". That was hard to hear. I was given nothing, and really didn't need anything. I gave it to God right then and there. I prayed for strength.

After about an hour, the Dr came near to me, ripped off his goggles and said, "you don't have an aneurysm". I sat straight up, smacking my head on the thing above my head. "What?, I said". He told me that I have some weirdly formed arteries at the back of my head and that he could understand why the guy who read the CT thought it was an aneurysm, but that it was definitely NOT. He said they were that way since birth and there was no danger at all. I believe he used the word "donut hole".

I started sobbing and he thought I was in pain. Everyone in the room started clapping and the nurse said "she's crying because she is HAPPY!". The DR thought I was in pain from something.

I thought AVM and he said no.

Apparently he went out to see my husband and gave him a thumbs up. I gladly, GLADLY waited for hours flat on my back. I had the StarClose used on me, to close the artery and that's weird to have that permanently in you, but I am not complaining.

I just wanted to say that I prayed for so many things before this procedure, but not once did I pray that the diagnosis was a mistake....I had never saw that on my endless Google searches. I never knew it was a possiblity.

This has changed my life-no way around it. I am living in gratitude every single day.

For those who don't believe in God, I apologize for this, but I have to mention it. While in the ER waiting to get my CT with dye, I kept "hearing" in my head..."he will never leave you or forsake you, he will never leave you or forsake you"..much like a song gets stuck in your head. I thought it was strange, but after my initial diagnosis, I GOT IT.

I am not a church going person, don't feel comfortable in church but do have a belief in God. I now know that each day is a gift and I am just CHANGED from this whole experience. And I feel, somehow, badly, that I joined this group and now I do not have an aneurysm. I have a new-found compassion for my mother that is living with 2 clipped aneurysms and one that they can do nothing for. We are no longer estranged.

Anyway, I feel a part of this community now and I'm ok with that. God Bless all of you. I know the fear, the tears, the devastation.

Give it to God because, in the end, he is the only one in control!

Jamie

2

Jamie I am so happy it all worked out for you :) :) :) and keep up your faith and be thankful you didn't have an aneurysm........mine ruptured :( but I too am AOK.....:) PS......I saw that white light when mine ruptured....I will never ever ever ever forget it.......thank God.

3

So happy to hear that, Caroline! Good is good, indeed. I often think of what the worst outcome could have been and although it scared me, I've got a much closer relationship with God because of this. I can't put a price on that.

4

Your comment put a huge smile on my face :) Live everyday like it is your BEST day ever.... Peace to you and your husband and son.

5

So happy for you! Mine ruptured also but I'm doing ok. I just had to have 3 stents put in after the doctor found that the rupture needed more cooling. I believe God was with me all the time.

6

Scarlet! another survivor!!! You are blessed as well. It's just "a feeling" is how i describe it. Things tend to not get me all riled up anymore. It's like an internal Ativan--LOL. So glad you are doing ok.

Jamie

7

Good news that you don't have an aneurysm after all. I would, however, be sure to get a written report to see exactly what you have. Sorry, but your neuro is an a-hole. I have never heard of anyone that didn't get something to relax them during the angio. I also think their response to your request for something to keep you calm was pretty unprofessional. Again, most people I know did get something for anxiety.

I also would not go back to this neuro again. He and his office lack bedside manner, but then, as a nurse, you know a heck of a lot more than me. Again, I would get the written report from both tests and if there is something you don't feel comfortable with, get a 2nd opinion - and what exactly is a donut hole? My unruptured aneurysm was in my basilar tip and it was fixed via coils/stent. Because of the location, I will be getting MRA annually for the rest of my life because basilar tips frequently spawn new ones next to the old one. Congrats on your outcome, and yes, you are part of a community that we all wish we weren't, but welcome.

8



Sherri Long said:

Good news that you don't have an aneurysm after all. I would, however, be sure to get a written report to see exactly what you have. Sorry, but your neuro is an a-hole. I have never heard of anyone that didn't get something to relax them during the angio. I also think their response to your request for something to keep you calm was pretty unprofessional. Again, most people I know did get something for anxiety.

I also would not go back to this neuro again. He and his office lack bedside manner, but then, as a nurse, you know a heck of a lot more than me. Again, I would get the written report from both tests and if there is something you don't feel comfortable with, get a 2nd opinion - and what exactly is a donut hole? My unruptured aneurysm was in my basilar tip and it was fixed via coils/stent. Because of the location, I will be getting MRA annually for the rest of my life because basilar tips frequently spawn new ones next to the old one. Congrats on your outcome, and yes, you are part of a community that we all wish we weren't, but welcome.

9

Hi Sherri

I have to say that when I read your post, you made me cry. I'm sure that was not your intent. I did get a second opinion. It was the same. No aneurysm. I do have a basilar artery fenestration. The Dr who did the angio said I should get an angio every 10 years, unless I am symptomatic. The 2nd Dr said he would suggest an MRA every 4 years, to monitor my "donut hole". I have seen the pictures of what this is, and another "club" I'd rather NOT be in. I am awaiting a call back from the DR, because I have some questions, that I can't find the answers to. I am now scared to do anything to raise my blood pressure. I won't have sex, lift anything heavy. I am constantly analyzing the angle of the neck when doing anything. My husband says I need to let this go. I am having a hard time, even though this has been there since birth. How do I get through this? I'm ready for some Ativan. Because this is relatively rare, it's also somewhat predisposing me to aneurysms at this point. I have not lost my faith, at all, just at somewhat of a junction here. Waiting to hear from the DR.