39 yr old mom of 3, just diagnosed with “questionable” 2 mm Supraclinoid aneurysm on the Internal Carotid Artery. My head is just spinning. I’ve spent the last few weeks researching non stop and am terrified. I got in to see my Neurologist yesterday who said we will “re-run” another MRA to confirm one way or another. He said the initial one wasn’t clear and although they see “something” they aren’t 100% sure its an aneurysm.
I’ve researched aneurysm’s on the Supraclinoid area, and it seems that BLISTER aneurysms are common in this location, especially in younger patients, and they are the “worst of the worst”, and no surgeon wants to touch them, as they literally dissolve at the slightest touch.
Being in Canada, our healthcare system is so slow, it will be about 4 months before I can get back in for that second MRA. I feel like there’s no way I can wait that long to find out.
I am struggling with accepting this, and wonder how everyone deals with knowing these aneurysms could break open at any time and steal us away from everything we love. I know I have to get past it, because I have kids who need me to stay strong, but I am just crippled with fear right now. I could accept it at 89 or 79, but not at 39!
I am considering going over to Beaumont Hospital in Michigan, as its close to me, but I would have to pay all costs out of pocket, and I have no idea what that would cost me.
Nice to meet everyone here, and thankful for a support group such as this (even though none of us want to be here).
I am an survivor of ruptured aneurysm. I am sorry but I am not familiar with supraclinoid aneurysm. I am not an expert but at least on this forum, I have read that usually procedures are done if aneurysm is greater than 5mm. A consultation in the USA without insurance is extremely expensive. An angiogram costs around 90K without health insurance discounts. I heard that Ontario (Toronto) is the center of excellence for aneurysms in Canada. Is this an option for you? Best of luck. Unruptured and ruptured Aneurysm is a scary thing but it is treatable. Consider a blessing that it was caught.
that’s ok, supraclinoid is an area on the Internal Carotid Artery (I believe its behind the eye somewhere). Mine is on the left side.
I am learning that Toronto might be the best place for me to see a Neuro doctor, as they would have much more experience in a big centre there. 90k is definitely out of my financial reach, so that will not be an option.
My neuro dr here wants to watch it, and do an MRA annually. While I know it’s too small to have surgery on at this point, I worry that it will still burst being small, as I’ve seen stories of many ppl who’ve died with only small aneurysms under 5mm. So much to worry about with these things. My greatest fear is losing consciousness while driving a car full of my kids, or being somewhere alone, and not able to have someone close at hand to call 911 if needed.
Hi Collegal, welcome to the site, although sorry you had to find us. My husband had a rupture repaired in Kingston a couple of years ago. He grew up in Windsor. There are several sites of excellence in the province for aneurysm repair. Hang in there. If your dr. was concerned that your situation was imminent, you would have been admitted to hospital. Keep a watch for dizziness,blurred vision, stiff neck, nausea or headache and call your dr. right away or take yourself to emerg if you are worried. We are here for you. Please keep us notified of your progress or how we can help.
My diagnosis was very recent too, and I found that it took me a couple of days to get past the surprise/shock. I took a day off work with just my wife the next day, and then we also just did a “staycation” just to spend time together as a family. I found all of this helped a lot to relax me and gave me time to mentally adjust to this new reality.
So that would be my advice: take some downtime to work out what you need to do differently with your life while you’re waiting for the next step in your diagnosis/treatment… and try to relax and breathe.
Thanks Judy, that’s what everyone keeps telling me, that if it was an emergency, I would be called in for surgery right away, but because it’s small, I have to watch and wait. I just keep reading stories of people with small ones that were being “watched”, that have ended up rupturing. I know there are no promises with these things, and Dr’s just do a best guess based on the size and location etc.
I am a worrier by nature, so something like this has just sent me reeling. My husband wants me t get off the internet, as he thinks its just scaring me more, and making it worse. For me, I like to know everything I can, so I am prepared to ask the questions that need to be asked, and know what my outcome might be.
I will definitely watch for those symptoms, and thank you for your kind words. I hope your husband, a fellow Windsor-rite is doing well.
It’s been a week, and I feel like I am struggling everyday. Its the only thing on my mind all day, even before I wake up in the morning, I have this ‘knot’ in my stomach and the anxiety starts. I force myself to get up and get the day started, but right now, it’s just all so much. I know in time I will have to just accept it and move forward, because I have no choice. I almost wish it just a bit bigger, so that I qualified for surgery and could have it taken care of right away. I feel like this “watching and waiting” is setting me up for years of anxiety and worry with each annual MRA.
I hope you are feeling better Jim, and glad to hear I’m not the only one who’s struggling with this diagnosis (although how could you not?). Are you in the “watch and wait:” club too, if you don’t mind me asking.
I’m was diagnosed a couple of months ago (45yrs, 5mm, irregular, surgery on
19th July). For me it has become easier (not easy) to live with as the
weeks have passed, and while it is in my mind most of the time I use it as
a reminder to take things easy and love/appreciate even more the people in
my life. I hope this doesn’t make me sound like some kind of zen guru as I
definitely am not!
There are threads in this forum where people have talked about their
anxiety, and I truly believe it’s normal to feel this way. Here’s an
Try to relax and take care of yourself We’re here for each other. You’re
Seenie from Modsupport here. I don’t have a brain aneurysm, but I do know a few things about health care in Ontario, as does Judy. I think that you need the reassurance of a second opinion at this point. Second opinions are very routine, and our system accepts that people need them.
This is a great place to be: the folks here are absolutely wonderful and supportive, and I will admit that it’s one of my favourite Ben’s communities. The good thing about this place is that people here are calm and sensible (as you can see). Dr. Google isn’t, as you’re finding out.
My suggestion would be to go see your family physician to discuss your diagnosis. Be as open and blunt about your anxiety and your 24/7 preoccupation with what is happening with your doc as you have been here. S/he needs to know about this, because the way you are feeling now is going to impact your overall mental and physical health. Also ask for a referral for a second opinion at one of our centres of excellence. My own preference would be to go to someone in the UHN (University Health Network), because it was specialists in that network who literally turned my disease and my life around.
Start searching for whom you would like to see. You have a right to choose. Google your type of BA and add “Toronto” to the search words. Make some phone calls, speak to clinic receptionists. Oh, what do you know, I just googled, and here’s where I think I would start.
Instead of working yourself into a lather by googling aneurysms, take some steps to find support from real life people who can truly help you. There is some wonderful help out there, so go find it!
Hi Collegal, if you decide to come to TO, I have a young friend who has been a nurse in the neuro ICU at Toronto Western. I can ask her for the name of a surgeon she would recommend. Let me know if this would be helpful to you
Hi, I live in Britain but had same diagnosis last June I have a complicated history cranial surgery 21 years ago subrachnoid haemorrhage 4 years ago and last year one like yours and aneryism in original site. I had original site coiled and stent. The one same as yours was too small I waited almost a year then had a diverting flow stent put in. I am extremely lucky as I got too Walton neuro hospital Liverpool. I was told the one I had same as you was a wait and see usually but given my history the diverting stent was done. I’m 52. I empathize with your constant anxieties I felt the same I practised mindfulness but a second opinion I think would help ask and research flow diverting stent sending you strength joxxxx
That would be great Judy. I’ve done some limited research, but it looks like Michael Tymianski is a great neurosurgeon in TO. If you could check with your friend and see what she recommends, that would be great too.
In the Brain Aneurysm Foundation Medical Board, there is a Canadian NeuroSurgeon named R Loch MacDonald who is a member. He is head of NeuroSurgery at University of Toronto, St Michaels Hospital. I just heard from lectures that medical treatment for aneurysm in Toronto is one of the best in Canada.
It is perfectly natural to have anxiety living with an aneurysm but just take the precautions: monitoring blood pressure, limit strenuous exercise like lifting heavy objects, eating healthy, staying hydrated. Meditation bowls really help with anxiety.
Hi Collegal, My contact says that the guy you have found is tops, and also a Dr Radovanovic. Your guy might have slightly longer wait times because he also does research as well as being in demand. My contact will give you a tour around the post op ward if you wish. Let me know if/how I can help. We live in Oshawa. It is like Windsor, only with hills.
Thanks Seenie - I definitely am going to ask to see D. Tymianski. I’m not sure if I should ask for a referral from my neurologist or my family dr. I have a feeling my local Neurologist wont want to send me to TO, as my local community hospital can “handle” aneurysm too, but I am going to push for it.
Once I get my confirmation with the second MRA, I will ask. Being that its small right now, I doubt Dr. Tymianski will do anything yet, but I want to be under his care if/when surgery is warranted. Thanks for your support!
I think you’re fine asking your family doc. S/he will include your neuro’s report with the referral.
When you’re speaking to the family doc, take the opportunity to discuss your emotional reactions to the diagnosis, and your wish to have a second opinion. May as well hit all the targets while you are there!
I had an angiogram yesterday actually, and got some wonderful news. The radiologist said I don’t have an aneurysm at all, but that the artery is just bent and that’s why it showed funny on my MRA scan.
I am so relieved beyond worlds, and while I’m a bit sore today, it was well worth the results.
Thank you for thinking of me! I can’t wait to put this nightmare behind me.