Scared – it is growing

General
#1

Hi Everyone.
I am fairly new to this site – I was diagnosed with a left ICA (unruptured, thankfully) in September of 2020 (found on some scans after a major headache episode). At that time, the size was 3.8 x 2.5 x 2.8 mm. I just had a follow up MRA on Tuesday and it has grown to 4.6 x 2.6 x 3.5 mm. My neurosurgeon has not contacted me yet (I messaged her this morning since it has been a couple of days), but still nothing. The radiologist report recommended a catheter angiogram to get a better look.
I am scared that is it growing and I don’t know why. I have been having head and scalp pain (mostly on the left side) since September, but the neurosurgeon keeps telling me that these headaches are not related to the aneurysm. The past two days the pain in the back of my head feels like someone is holding a lighter to my head (just burns).
Has anyone else had the same type of head pain? Is this growing really fast or I am I just freaking out too much? I realize it isn’t a huge annie, but it is a different story when it is in your head :blush:. I am trying to remain calm, but that is easier said than done sometimes.

Also, does anyone have a recommendation for a neurosurgeon in Portland, OR?

#2

Hey Jill,
My name’s Merl from the Modsupport Team here on Ben’s Friends. I’m also a neuro patient and I too know that fear. ‘What is going on and why?’ Nobody’s going to be able to give you the exact answer as to ‘Why?’ Lots of guesses 'It could be ‘X’ or it could be ‘Y’ was about as good as I could get, but using that theory it could be A,B,C,D…too. Even after years of hunting I still haven’t gotten an answer to the ‘Why?’

And we know it from our own experiences. It may not be huge, but that doesn’t mean the psychological impacts are any less, far from it. If I really sit down and think about it all, it can take me down some awful dark holes. We know it 'cos we’ve been there too.

Now as for the ‘what’s going on’ bit, specifically for you, that really does need a professionals opinion taking all of your images and associated reports into consideration, but here’s some general information:
With annies it can be a combination of location as well as size and type of annie that are taken into consideration when the medicos are making assessments. There are some that are at little risk of rupture, there are some that are in very difficult locations for surgery and these sorts of things also need to be established via imaging. In some cases annies can expand rather quickly, like a balloon and be very risky but others can be much slower or deemed to be of very little risk of rupture. Some neuro’s may only do a follow up annually in some cases.
Having expanded by 1/2 a millimetre over 9months would probably be considered a slower expansion rate, having a lesser risk of rupture at this stage, but again this needs to be medically/professionally assessed and explained by a Dr. Some dr’s can be a little too casual if it’s at minimal risk. That doesn’t help us, the patient. But them not informing you promptly maybe a good thing, ie It’s nothing urgent.

Merl from the Modsupport Team

1 Like
#3

HI Jill,
Welcome! We are glad you have found us! I completely understand how you are feeling!!! I was diagnosed with a 2 mm unruptured left supraclinoid aneurysm in 2015. I was having headaches and my gut just told me something wasn’t right, so I had an MRI/MRA and there it was! Oddly enough, my headaches went away after I was scanned, and a good neurology friend dx me with nummular headache syndrome. I have only had a couple of VERY brief headaches since then. Those headaches saved my life, and although this aneurysm was tiny, it ended up being a blister aneurysm. Blister aneurysms are incredibly fragile, thin walled, and treacherous. My neurosurgeon did not know it was this type until they were in the middle of the craniotomy. If he would have done an angiogram, he would have known this ahead of time, and taken me in right away…instead of letting me wait 4 months so I could get through the holidays extra. I still can’t believe I was walking around with a blister aneurysm and it didn’t rupture. My mom always tells me that I have more work to do in this life.

Fast forward to 2021. No one ordered a 1 year angiogram on me. Which is alarming after discovering I had a blister aneurysm and I found out about a second aneurysm after reading my post op report. For the last 5 years I have had CTA/MRA only. At my 5 year anniversary, they decided I should have one, and there lurking directly beneath the clip was a 4 mm residual aneurysm (I was originally told it was 2 mm but my neurosurgeon had not done a deep dive on my images). The clip was throwing of so much artifact that the residual/regrowth could not be seen on CTA/MRA. So why am I telling you all of this? MRA is a good diagnostic tool (to assess if someone has an aneurysm period) but it’s really pretty stinky at providing a lot of details. CTA is better, but angiography is the gold standard and will reveal the “true size” and many other details you do not have right now. Honestly, Jill, I would not be surprised if you come back and tell us it hasn’t actually grown and that it was how each radiologist measured it. Most radiologist use the average size of the ICA (I was told 3.8-4.5 mm) to determine the size of the aneurysm, so there is definitely room for human error.

Ok, that scalp pain? I had that too! I would be driving in my car and bam out no where I would get this pain; usually in the back of my head. My head tingled, I had weird sensations and I was out of this world anxious. This is a tough diagnosis and you should never judge yourself for how you feel. You are not freaking out. You are human. I am not a physician, so I cannot tell you whether or not your headaches are related to the aneurysm. I just know from my own experience that all of the odd sensations, scalp tingling/pain and headaches 'went away" on their own.

I do not know who is good in Portland, but I am going to text someone who will and get back to you straightaway.

Only you can decide about the angiogram. I wish I would have had one at 1 year so we had a baseline on the regrowth. I did have a flow diverter put in that artery on 26 April, so it’s a mute point, but I am one of those “I need to know” people, so it’s driving me a bit batty.

Hang in there Jill!
Kim

1 Like
#4

Hi Kim.
Thank you so much for taking the time to share your story and to help me bring my anxiety level down exponentially. I am grateful to have found such a wonderful and supportive group of people.
How terrifying to know that you were walking around blister aneurysm could have ruptured at any time and then to find out you have 4mm residual aneurysm hiding behind the clip. Glad everything went well with the craniotomy and the flow diverter.
I am new to MRA/CTA/Angiography. It is good to know that MRA’s are not super accurate for size determination. That nugget of information is one I will not forget! Sounds like the catheter angiogram is the way to go. I am definitely up for it if, it is the “gold standard”.
I am not sure what is causing my head pain. It is just suspicious to me that it is on the same side as the aneurysm, but it could be 100% not related. It started when I had my bad “exertion” headache and hasn’t really gone away. Some days are worse than others. I have been getting massage, acupuncture, and some chiropractor (activator not manual) and nothing seems to be helping. I haven’t given up hope yet, though :blush:.
Please let me know if you get a name of someone in Portland. I didn’t get to pick who I was referred to and I haven’t been super excited about them so far.
Thanks again for your response, Kim. You have helped me tremendously!!

1 Like
#5

Good Morning @Jill! A couple of things - to find a good neurosurgeon is to check the recommendations here on this site for anyone who has posted or sometimes we revert to an internet search, perhaps through US News I think it is that rates surgeons and hospitals. Here’s the section for recommendations Recommend Doctor or Clinic - Brain Aneurysm Support Community. Another way is to go to the search feature and type it in

For me, an MRA is better than a CTA. (It’s ok @phoenix33 and I can disagree, we are fast becoming friends). But since everyone’s aneurysm is different, there’s a way to see it. I have a LICA multi-lobed that ruptured and it’s been a bear to get stabilized. But it is now! I’ve had so many CTAs that one of my doctors said I could light up our county. Because of the amount of radiation I’ve been exposed to, my neurosurgeon tries to stay away from them. So everyone has a different story or reason for why their surgeons do what they do.

If you’ve been lurking around the internet, you will see just about everything stating an angiogram is the “gold star” for our surgeons to really see inside our vessels. I didn’t have to have an angiogram prior to my Neurosurgeon putting in a stent this last December as the MRA told her all she needed to know. I did have my six month follow up angiogram on Friday and I won’t have to see her for two years!

Also, like most members here, our neurosurgeons are usually saying our headaches have nothing to do with our aneurysms. The rule I had from my neurosurgeon was if my headache hurt like heck, stiff neck and nausea/vomiting I was to go straight to the ER. The other thing she has drilled into me is to hydrate, hydrate, hydrate. She even shared a story about her husband’s headaches where she asks him how much he has hydrated and if he ate anything. Headaches can be caused by so many different things, I think it’s best to start with the simple things we have control over.

I’m not sure about your Neurosugeon and their team, mine does scheduled procedures on Fridays and her NP is with her through all the procedures and trying to respond to messages sent to them. I used to rely on the triage team, until one of the RNs taught me about the patient portal LOL. I never expect a response back on Fridays, through my portal, but many times I do get one. It’s nerve wracking to remember that we are not their only patient, but we do have to try. You might want to reach out Monday about mid morning if you haven’t heard back from yours.

I would remind you to breathe. If you know how to do relaxation breathing, do it all the time. If you don’t, look it up on the internet. It’s very easy, but you have to do it all the time so it becomes second nature. I’ve been doing it for so many decades I think I probably do it in my sleep. But I can control many things like my BP, stress level, etc. I also love to take a walk about, even if it’s in my yard. If you enjoy a hobby, go to it! Hobbies are a wonderful way to get our mind off our troubles and worries as they give us something that needs our concentration.

All the best and please keep us posted!
Moltroub

1 Like
#6

Hi Moltroub,
Thanks for much for the link to look for Dr’s. on this site. I tried to do a little digging before and came up with OHSU and one Dr’s name from 2012. I have also done some google searches for neurosurgeons in the area, but I am mainly finding spine specialists. I may try to see if I can get a referral to OHSU (Oregon Health and Science University).

I did some research on the catheter Angiography and it doesn’t sound fun, but I does sound like it gives you a lot more detail than the MRA. I will definitely try to steer clear from the CTA. I do not want to light anything up :blush:.

I am trying to be patient with my neurosurgeon and keep telling myself that she would call right away if it was really bad. The radiologist noted on the report that he called and spoke to her assistant at 8:30AM on last Wednesday and I sent a message in the portal on Friday at 10AM. The radiologist calling her office is what made me more concerned.

I have also been trying to force myself to breathe more and to listen to meditation videos on Youtube, but I have been lax about it lately. Reading your response this morning has been in a kick in the behind to get back into making it a routine.

Thanks again for your support!
Jill

1 Like
#7

HI Jill!
Happy Monday and greetings from sunny and 116 degree Phoenix! I have 2 names for you:
Vivek Deshmukh (open surgery/clipping)
Jane Ng (endovascular/coiling and flow diversion)

Both are at the Oregon Clinic at Providence St. Vincent’s Phone: 503-935-8500

https://www.oregonclinic.com/our-team/vivek-deshmukh

Please keep me posted. The friend that suggested these two is very knowledgeable and has her own Foundation.

Hugs!!!
Kim

#8

Hi Merl.

Thanks so much for your reply. I just saw it this morning. For some reason Moltroub’s and your response went to my “promotions” folder in my gmail, but Kim’s went to my normal mailbox. I guess I was not shopping enough this weekend :blush:.
It is comforting to know that I am not the only one searching for the answer to “why”. I have spent countless hours googling and guessing about how I got an aneurysm and what is causing my head pain. I am guessing I may never know why. I should probably use this time to do something more constructive with this time!
The psychological impacts have definitely done a number on me. I am hoping that I will relax a bit more as time goes on and I get used to living with this thing inside my head :blush:.
Thanks again for your support. It is wonderful being able to talk to people that have been there and understand what you are going through!
Jill

1 Like
#9

Greetings from rainy and 65 degree Portland!
Thanks for getting back to me so soon! I guess I am in good hands. Dr Ng is my neurosurgeon. I just need to learn to be more patient. I got a call from her assistant this afternoon. She told me that Dr. Ng did not agree with the radiologist and that she had a neuroradiologist look at the images, too. Both her and the neuroradiologist agreed that it looked stable (assuming that means it hasn’t grown) and she wants me to repeat the MRA in a year. Fingers crossed :-).

Thanks again for your help!
Jill

1 Like
#10

@Jill remember on the scans that @phoenix33 and I have different reasons for the different types of scans. As you read, what works for me wouldn’t work for Kim…let your doc decide…

Ohhh the radiologists…yep, sometimes they don’t get it but I think they may not have earlier scans to compare it to. That’s my experience anyways. I’ve also learned they lean to the side of extreme caution which can be a good thing! It is a bit nerve wracking isn’t it?

For the very first time, I had my angiogram done through my wrist (radial artery) this last Friday. Except for a little hiccup on the procedure table it went great. I really liked that my doc was able to use my radial. As other members have shared, it was soooo much easier and I was able to dance at a wedding Saturday evening!

A big shout out to all the members who shared the differences between the arteries!

This year, may I suggest you concentrate on doing all the best things you know to do, or maybe even pick up a new hobby? Hobbies are great! Dancing is better.

All the best,
Moltroub

1 Like
#11

Hi Jill,
While it’s true that an angiogram can give more detail, it’s also the way an aneurysm is coiled. I ruptured at 4.4mm without knowing I even had one and was coiled. My advice to anyone who has an aneurysm is why wait for it to rupture? I had a searing headache 2 weeks before I finally ruptured. I now know that this headache is called sentinel or warning. A friend of mine had headaches, had an MRI and then an angiogram to diagnose her aneurysm. After seeing what I went through after my rupture, she immediately had it coiled. It was smaller than mine. One weeks rest and she’s back to work. I’m on disability.

#12

@Alice3 one would think the specialists could come up with different names instead of using the same for both the diagnostic and the repair…just keeps us on our toes I guess.

We have both ruptured, but I would still go by what the specialist said, even with all I have been through. Most aneurysms don’t rupture according to the research. Most never get big enough to cause any issues. Being cautious and seeing if an aneurysm will grow seems to err on the side of caution and one I would take.

Angiograms have their own set of very real dangers and I would weigh the dangers out before I jumped on the procedure table. My recent angiogram on Friday had a bit of a hiccup, I went into full blown anaphylaxis and I’m still trying to get over it. Lucky for me I was able to let my surgeon know and she did what needed to be done to save my life as quickly as she could. The result is no more angiograms, unless it’s a life and death situation. So there’s the good news!

All the best and it’s good to see you post a reply!
Moltroub

1 Like
#13

YAY Jill! I am so glad you have received f/u from Dr. Ng’s assistant and that your aneurysm is stable. I did not realize your original scan was not read by a neuroradiologist and by a general radiologist. Thank goodness you had the experts review!

Best of luck to you and please keep us posted on how you are doing.
Kim

1 Like
#14

Hi @Alice3,
I am an unruptured survivor and I had a craniotomy in 2016 and a flow diverter in 2021 for the same aneurysm. I agree with @Moltroub that most small aneurysms DO NOT rupture and that not everyone should be treated as there are risks with treatment. Size and location are very important. I have a second aneurysm in my right carotid cave. It is extradural. There is zero reason to treat it as the risk of rupture in that location is almost less than zero. It is also tiny at 3 mm.

I hope this clarification is helpful.
Kim

#15

My apologies. As I was unconscious for about 3 months , I have no idea about the procedure to coil my aneurysm. The first angiogram I was aware of was done a year later to check the coil. A friend of mine used angiogram as the way to diagnose her aneurysm which did not show up on a CTA because of its location, although it showed on an MRA. Her neurosurgeon ordered a CTA and then cancelled surgery. Another Neurosurgeon did the angiogram and the coiling. She told me it was coiled via angiogram through her groin.
I consider 4.4mm small for the damage that the rupture caused.

#16

Moltroub,

I was going to say that the radial angiogram sounded a lot easier than going through the femoral artery (recovery-wise), but yours sounds like it had an unexpected turn. Glad it ended up going well. At least you were in the right place if you were going to go into anaphylaxis.

Jill

1 Like
#17

Thank you for sharing your story with me, Alice. I have thought quite a lot about just getting it “fixed”. I think my neurosurgeon was leaning towards a pipeline stent, if I wanted to have surgery. Some of the things I have read about coiling and stents have me scared, too. I am paralyzed with fear both ways (rupture or surgery).

I was just going to follow the neurosurgeon’s advice for now, until my fear of rupture over takes my fear of surgery. :slight_smile: You definitely have me thinking about the surgery more now, though!

Thanks,
Jill

1 Like
#18

@Alice3 absolutley no apologies needed Ms. Alice! I know we have both been around the block and was able to get to another. Good for us! I just wanted to clarify to members that we need to let the experts figure out our best course of action is all. Personally, I lean towards the ISAT and not the ISUIA study. As you shared, yours was considered small and so was mine. ISUIA says they won’t rupture but here we are. I hope you realize just how much your experience and wisdom have helped not only myself but other members as well. You are priceless!

@Jill the radial is a much, much better experience as other members have shared. If it’s an option, that’s my vote! Because I was in Neuro ICU for a good bit of time and all the lines they use, my Neurosurgeon and team thought the radials had been traumatized, too much scar tissue. The Resident, Dr. Oravec used an ultrasound and determined it was viable. I have tortuous arteries, it means they’re squiggly and don’t run straight. But they did make it all round the bends, Dr. Quintero-Wolfe is very good at this, she does AVMs as well. They used this air pressure device instead of weights over the entrance site of the catheter. RN Amy took a little air out every 15 min, ensured it wasn’t bleeding until the device was empty. Wrapped it with gauze and Vet wrap (coban) I was done an hour after the procedure and being discharged! The difference between the two is night and day. I was also able to get our dogs home the same day and not have to worry about the one jumping all over my legs. We had to start leaving them at the clinic for the weekend when she went through the femoral. How good is that?

Anaphylaxis is a real occurrence for me and one they know about. It’s the reason my doc orders the decadron prior to procedure. Apparently the RN thought she didn’t need to give it to me because I was premedicated, that’s what she told my doctor. I think what I’m trying to warn everyone is to know and understand all the risks prior to an angiogram or anesthesia. When all is said and done, I still danced at a friend’s wedding and life is great!

Best to everyone!
Moltroub

1 Like
#19

@phoenix33 what is the difference…guess I’m asking what the heck is an “extradural” aneurysm compared to another

Hugs
Moltroub

#20

Hi @Moltroub!
First of all, let me start by saying to @Alice3, that there is never a reason to apologize. We are a support based community, and one of caring and understanding. No judgement. :blush:

Now to answer @ Moltroub question, there is a huge difference between intradural and extradural aneurysms. Intradural can cause subarachnoid hemorrhage (SAH), which is bleeding in the space between the brain and the surrounding membrane (the subarachnoid space). Extradural aneurysms DO NOT cause SAH and are typically in “safe” places. I will get to that in a moment. So how do we know intradural from extradural aneurysms? Based on a structure called the distal dural ring or DDR.
The DDR separates the extradural from the intradural and is particularly important in identifying cavernous segment aneurysms; which can be “transitional.” Aneurysms above the DDR are intradural those below the DDR are extradural. Many also use the relationship to the optic strut to determine (but that’s another topic and a bit complex).

Knowing the location of the aneurysm and it’s relationship to the DDR can change management strategies, and ultimately to treat or not to treat. This is why size and location matter. A giant aneurysm “may” need treatment in the cavernous segment for example, if the patient is experiencing symptoms (drooping eyelid, vision problems, etc). Even though there is no risk of SAH, the patient is having debilitating symptoms. So it’s not always about rupture risk.

What is transitional? Transitional aneurysms are ones that have a portion that is intradural and a portion that is extradural. They are found on the cavernous segment and arise entirely from within the cavernous sinus but project into the subarachnoid space; so a portion is intradural and a portion is extradural.

The importance of all of this is that word “aneurysm” is a pretty scary, however, all is not what it may appear to be until we peel back the onion. Who knew that not all aneurysms can be bad buggers? I learn something new every day, and when this was explained to me I had a total “ah ha” moment!