Brain Aneurysm Support Community

New member - Unruptured aneurysm and lupus diagnoses

Hi All, I’m new here, too. Like MAC, who posted a few days ago, I went in for an MRI/MRA for pulsatile tinnitus, and an aneurysm was found behind my left eye. ENT doctor says it is not the cause of the tinnitus. I went to a neurosurgeon right away, and he said it was unlikely to rupture and to come back in 6 months for another MRI/MRA. I didn’t get to ask him a lot of questions because he had just come out of the OR and was heading back in. So, no idea how big it is, or which vessel it is on. Now I’ve become worried and depressed. I was also diagnosed with lupus this past August and wonder if the generalized inflammation is related/causes the aneurysm to get worse? It was causing my blood pressure to be a little elevated, but that has improved since I’ve started taking plaquenil for lupus. Also, should I get a second opinion on the aneurysm or just wait out the 6 months to see if it gets bigger? Feeling anxious and scared about all of this, and the pulsatile tinnitus is driving me crazy; it’s always there.

Thanks

1 Like

Having more information will calm you down . You can get second opinion for your own confidence. May be request the reports , summary of you MRI and neurosurgeon visit? If the size is small it most likely all doctors want to take a look in 6 or 12 months if it’s growing . If it changes the size here is more risks of rupture as I understood , if it’s not they continue to monitor . I hope you will get more information …

3 Likes

Welcome rooroo! If you don’t have a patient portal, call the doctor’s office speak to the triage RN and ask for specifics on your aneurysm, smooth or multilobed (very rare) size and exact location should give you what you need. My neurosurgeon is at a teaching hospital. She teaches and sees patients as well as surgery. She never sees patients on surgery days and takes all the time we need. She also knows that I don’t mind when she has emergency surgery to do - I was once an emergency.

Dad was diagnosed with SLE back in the late ‘70’s. He had the butterfly across his nose and under his eyes. Luckily, the RN at his company made him go in to a specialist. He passed away at 84. The only real trouble my mom had with him and his SLE, was getting him to go get his vitamin b shots. She would call me specifically to tell him to get his shot.

Stress is not good for either, please learn to reduce it. And please keep posting updates, we are here to help!

1 Like

Hi RooRoo,

Can’t help but ask the question, are you a woman? I am always amazed at how women are pushed off. Perhaps a second opinion? You should have been given answers from a nurse even if the doctor was busy. I agree with gk79, request your reports and go to another doctor. Wish I could offer more help, but you have support here.

1 Like

Thank you. Yes, I’m a woman. No surprise, huh? Thank you so much for your suggestions and support!

I asked the neurosurgeon’s office to fax me my MRA report. I have a 3.1 x 2.6 x2.6 mm aneurysm projecting superiorly from the left ICA at the origin of the ophthalmic artery. Not sure how small/big that is from an aneurysm size perspective?

And what makes the neurosurgeon think it has a low chance of rupture? I did ask him about the surface, whether it was smooth or irregular, but he said he didn’t know. I guess he could not tell from the MRA report; it didn’t specify that detail.

It’s smaller than a pea if that helps. Here’s a link to a conversion table https://www.rapidtables.com/convert/length/mm-to-inch.html

There’s two international studies, one on ruptured aneurysms which doesn’t get much in way of referring to findings, and another on unruptured studies which gets an immense amount of citings

Here’s one study https://www.ahajournals.org/doi/full/10.1161/strokeaha.115.010698

You may have to learn about statistics, they can get complicated until you get them figured out. Here’s an overview https://towardsdatascience.com/the-5-basic-statistics-concepts-data-scientists-need-to-know-2c96740377ae

2 Likes

Thanks, this is very good information!

1 Like

I roorro this is Mac, basically in the same boat as you. They told me to come back in 6 months to reevaluate it. My brain aneurysm is most not likely the cause of this pulsatile tinnitus which is driving me crazy as well. I did get a second opinion and that doctor told me the same thing and come back in 6 months to see him. If you need any support please feel to pm. Mac
ps I am going to a cardiologist to see about the pulsatile tinnitus this week to make sure it`s not a blood vessel problem.

1 Like

Hi RooRoo
I have a annie in the same place mine is/was 10mm x 9mm with a 9mm neck and was told that it was small and it could be watched but with my father having a ruptured annie at my age the doctor went ahead in July and placed a pipeline stent. He said all my stress was going to make it worse.
I am sorry about the lupus diagnosis but the hardest part of any diagnosis is the unknown. I spend time talking to nurses and other people at the hospital just learning about how different doctors and offices do things because I have to spent so much of my time there I might learn the ins and outs to get the answers I seek. Many doctors just rush off and answers from them are hard to get.
Sometimes we have to get creative.
Fear is not one of my strengths I have to keep telling myself with knowledge fear will subside. As I wait for a biopsy to see if I have cancer keeping fingers crossed.
I wish you all the luck in the world and many blessings.

Thank you MAC and Ckollie! And everyone who has posted so far. All of you are helping with the anxiety and no feeling so alone in this. Prayers for you all facing aneurysms and other diagnoses (tinnitus, cancer). I feel thankful to know about the aneurysm and to be aware and watchful. The tinnitus is still driving me crazy. Let us know what you hear about yours MAC if you are comfortable with sharing. And also you, Ckollie. Prayers for a clear test!

Please share any details of your experience with the pipeline if you wish.

Best wishes to all.

I found a good app Beltone Calmer . You set up sounds you like ( rain , train etc ) and you can set time timer when going to sleep , for tinnitus . The app also has more features , I using it for tinnitus . It’s free and very helpful .

2 Likes