New diagnosis at UC Davis

Hi everyone. Newbie here. I just got my diagnosis (3mm anterior communicating) about 2 weeks ago and spoke with my first specialist on Monday (neurosurgeon with UC Davis in Sacramento). He was very casual about my wait and watch diagnosis, saying he wasn’t worried about it, saying I’d have an MRI in 12 months. Well, my brother in law happens to be a neurologist and he’s told me that he has patients whose 3mm aneurysms have burst.

Basically, it’s been a whirlwind and I don’t know what to think, so I’m posting here because I could really use some good energy. I’m doing fairly well emotionally, but my thoughts are all over the place, and I could use the support. Thank you :purple_heart:

Hey Emilia,
Welcome to Ben’s Friends.
Unfortunately your “wait’n’watch” is really common (and so is the casual attitude). They (The Dr’s) deal with this sort of thing on a daily basis, but for us the patient, well, we can’t just casually disconnect. It’s happening to US and that’s all VERY real. They believe being casual means we stress less. WRONG

Part of the issue here is often with some patients, they can have a large annie but have relatively no symptoms and yet others can be HUGELY symptomatic. If they, the medicos can avoid neurosurgery, they will try. The surgery itself is a major assault on the brain and although it may fix the ‘issue’, it can unleash a whole range of other symptoms.
BUT
If you are symptomatic, get another opinion. I would recommend you keep a ‘activity / symptom diary’. Often we can see a medico and our verbal record can be taken as hearsay. A documented record is exactly that, documented.

There’s also the psych issues. My initial surgery was an emergency situation, so it all sort of happened around me and I had very little time to actually think about it all. The subsequent surgeries I had time to think and OMG, I was a mess with each one. Some medicos are of the opinion that if it’s non-symptomatic always wait. But the idea I have this timebomb in my head was difficult to process, so that thing of “…my thoughts are all over the place…” Ohh yea, that’s common too.

In my humble opinion (I ain’t no dr, but) you need a 2nd (maybe a 3rd, 4th, 5th) opinion.
If your brother-in-law is a neurologist and is in the ‘neuro-world’, would he recommend a neurosurgeon for you to see. Now, I must warn you that all of the neuros I’ve seen have all had differing views of my situation, so please do not go into this with a concrete expectation of what they will say. Listen to each one, but consider each view as exactly that. A view.

Good luck with it and please, let us know how you get on.
Merl from the Moderator Support Team

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Thanks Merle of @ModSupport. It was extremely helpful just to find this group and know that it exists, it’s been even more helpful to hear and read first person accounts. Thanks for being here!

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Totally agree. And that’s what we’re here for, to share “first person accounts.”
The medicos can give you all of the clinical/theoretical information but none of them can give you those first person accounts. There are lots of theories on how it all works, but the realities of it all can be wildly different to the theories. We know this because we live it too.

Merl from the Moderator Support Team

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Welcome Emilia! Watch and wait is pretty common for aneurysms considered small. He will check to see if it’s growing in a year. Remember if you get the thunderclap headache to go straight to the ER, do not wait. Mine was only 5mm when it burst. There’s two big studies, the ISUAT and the one for ruptured aneurysms. The two contradict each other. For some reason, most specialists go with the ISUAT. You might want to ask your BIL why that is. My theory is politics, but I don’t really know.

Even though mine ruptured, I still had to have a couple more coilings. The neck was open at 3 mm and just didn’t want to close. The last coiling she used a balloon assist and put me on the two year wait. My neurologist had an MRA done a couple months ago and the radiologist made no mention of my aneurysm in his report. My neurologist had to call and ask the radiologist. So now, the MRA reads as if he noted I had a repaired aneurysm, but it doesn’t say anything else about it. I go for one in November for my Neurosurgon at a different hospital. I refuse to go back to the one that my Neurologist is affiliated with as you can imagine.

If this is really bothering you, send your images up to UCSF and have them read it over. They may see something different or something the same. My NP with my Neurosurgeon at WFBH says it’s done all the time and my Neurosurgeon doesn’t charge for a second opinion, maybe UCSF won’t either. Good luck and keep in touch!

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Thanks for pointing out those studies @Moltroub, I will look them up. I will also look into a second opinion from UCSF :slight_smile:

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I got the letters wrong, here is a discussion on both from John Hopkins to get you started. https://evtoday.com/articles/2005-july/EVT0705_F1Murphy.html

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Hi Emilia, I was diagnosed with the same (5mm anterior communicating) as well. It is exactly 1 year this month it was found due to another medical issue. I was very blessed to have found this because I had no symptoms. My neurologist sent me to a neuro surgeon who basically said I could wait and worry or have surgery. They both weighed the same to me. He recommended a procedure called coiling. Unfortunately he no longer does this procedure so I went to another neuro surgeon who basically shined a little light on my worry. He suggested an angiogram which would allow him to take a very close look to examine the character of the aneurysm to determine how to fix it. Well my Aneurism was found to be a wide neck so coiling wasn’t an option but, there was a newer procedure called webbing which I was a candidate for as well as open surgical clipping. I had the webbing procedure November 2019. I’ve had my first 6mo. follow up angiogram in June. All is well. But thats not to say I did’nt have post side effects of headaches. I never had headaches before. And like many others that I’ve read about their dealings with the many meds and physical therapy, acupuncture, yada yada yada. I’m still having headaches. But, I recommend you to ask about this webbing procedure. It truly was a blessing for me. If the webbing is an option for you, I’ll be very happy to answer any questions you have. By the way, I haven’t met many who have this webbing, but the few that I have met, were very helpful. Good luck , Blessing to you. Shari.

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I too was a watch and wait at UCD for a little over a year with every 6 months MRIs. If riend pushed and pushed during the entire time for me to get a second opinion. I finally did (UCSF) just to get her off my back. I had an angiogram and was told I needed to have coiling and reasons were given why. I had the coiling. I recommend you receive a second opinion. I will say my UCD doctor refused to do any follow ups if I needed a local doctor. Good luck and I will keep you in my prayers.

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I want to PM you about WFBH.
Can’t figure out how.
Could you message me, then I can reply to you?
Many thanks!

Emilia

I agreed with ModSupport.
There are plenty of options, but then doc will see the best options, probably 2-3 options left.

My doc said if I am over 80, he will choose to watch my aneurysm. High risk and very risky location.
My aneurysm was 16 mm.
Since I am still young, taking surgery is better. Have a risk, If all are ok, i have 5% chance of rupture

Hey Emilia,
I had a 2mm annie and it ruptured. I didn’t know its existence. It just happened one day when I flew cross the county and had a very high blood pressure due to poor sleep in the two days preceding the rupture. I was not on med for the hypertension. I had severe headaches for several years prior to that and never thought it could be caused by an annie (I never heard of this illness before). During those years with headaches I saw 7 specialists and none of them could identify the source. The last one ordered a CT scan for me, but by that time I was exhausted and did not do it (I assumed I probably had tension headaches).
I don’t know what it’s like with a diagnose. Just to share my experience for your reference.
Best of the luck to you.

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I was in a similar situation when I had my diagnosis 7 years ago. My neurologist at the time actually referred me to another neurologist for a nerve block for a migraine. That neurologist examined me, looked at my chart then called and had me referred for second opinion from a neurosurgeon. I went to that exam and he based on all my scans he said I was a good candidate for the wait and see. But during a physical exam he could see that I was already experiencing some minor issues with balance, walking, and depth perception. So, one week later I had a craniotomy to clip it and that is how we found out that it was close to rupture. The thing seems to really depend on your vascular makeup. How strong are your veins and arteries? Those are variables that are going to be dependent on your body. Just try to take time for yourself and if something doesn’t feel right be a bother.

Hey Beth,
This is Merl from Modsupport.
To PM a member, here’s what to do.
Each post is in a text box, in the top left of each textbox is the sender’s avatar In Moltroub’s case, her dog.
If you click on the avatar, the members profile appears, on the left of that profile, at the top, is a blue button “MESSAGE”.
Click it. A “Start a message” textbox will appear. Click you cursor in the textbox and type away.
At the end click on the blue “Message” button and it’s sent.

Hope it helps
Merl from the Modsupport Team

Thanks very much!

Hello Beth2

The instructions are now in “New User Help”.
https://www.bafsupport.org/t/new-user-guide/13660/2

Seenie

Hello Emilia and friends!

Somehow this post ended up in our Prayer section, and I think it may get more attention in our “General” category. I’m going to move it over.

How are you doing now, @Emilia, and everyone else on this thread? Touch base and bring us up to speed!

All the best to you

Seenie from ModSupport