Looking for answers/help

Hi, I am new here and I am very happy to have found this group there is little to no info on unruptured brain aneurysms support here in Canada. I will try the make this short but forgive me if it gets long. 2 weeks before Christmas 2019 my husband and I were in a car accident. To make this short, we hit a cement barrier broadside (my side) at approx.130 km/hr. We both walked away we both had severe whiplash and I had a concussion I am pretty sure I hit my head. I just saw black then white then the paramedics were there.
It has been a year and a half and I have not fully recovered. Unfortunately during this time my family doctor when on emergency maternity leave. So I was left at mercy of 3 different doctors looking after me. I have been in physiotherapy this whole time and I am still suffering. When my family Doc came back she was surprised that I was still suffering from the concussions, in fact, she had thought I had had a new concussion, I said no it’s still the same one. I still had horrible headaches, pressure behind my right eye, pressure in my head, what feels like lighting or electrical shocks in my brain. Also, balance and cognitive issues. While she was away I did have an MRI in Jan of 2021 it showed nothing was wrong. I asked her to do another one which just happened in early June 2021. I had 2 MRI’s one was to confirm that I indeed have 2 Unruptured aneurysms. I was sent to my local hospital the one that missed it the 1st time. They consulted with a neurosurgeon and said I was ok to go home and I will be seen by a neurosurgeon in the clinic. I was told none of my symptoms are related to the aneurysms. I am finding this very hard to believe before the accident, I was a very healthy active working woman and going to school and able to care for my kids and house, and now I’m lucky if I can get 3 hours of work done before the pressure starts building in my head and all the symptoms come back. This has been my life for the last 1 1/2. I was told the aneurysms are in the right carotid artery deep within the brain one is 5-6mm the other is 1-2mm. At this point, I don’t know what to think I am just wondering if you can help me make sense of this? Sorry for making this long. If you have questions I will gladly answer them so maybe I can find out what the heck is going on.

@prtnpink I am so sorry you are going through this! That car accident sounds like it was terrifying and you are still suffering because of it.

Do you think your headaches are from the aneurysms and if so, how are they different from the ones you got after the concussion? Are you able to access your MRI/MRA report on your patient portal? I live here in the USA and we have access to all of our medical information online. It would be helpful to know exactly where these aneurysms are located and if they are saccular (berry) or another shape. These are all really important facts to better understand your current situation.

When will you be able to see the neurosurgeon? I hope sooner than later so you can feel better. I hate not knowing. The waiting is the hardest part for me. Even if I get not-so-great news, I am one of those people that has less anxiety with the facts.

We are glad you found our community and are here for you! Ask as many questions as you want, and tell us as much as you wish. No one’s story is ever “too long.” It’s your story and your life and you matter!! Please keep us updated!
Kim

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Hi Kim, I do believe these symptoms I am having are related to the aneurysms. These headaches are much more different than any I’ve had before. I have no access to my MRI all I know is that I have 2 aneurysms in the carotid artery deep inside the right side of my brain. In Canada (although are health care is free) there are long waiting lists to see any doctors. ( I likely won’t see a neurosurgeon for a year or more). Just to give you a few symptoms I have incredible horrific headaches that make me nauseous, so much pressure behind my right eye it feels like it’s going to pop out of my head, There is a constant pressure as if my brain is in water and there is no more room, along with electrical shocks in my brain. I have had at last 3 doctors tell me this is not because of my aneurysms because they’re on the small side?? Oh, and neck stiffness. I feel like these warning signs of impending rupture. I don’t know?? Hoping someone on here may have had the same or similar issues??

Are you able to come to the USA? A year is an awfully long time to wait. The internal carotid artery is a main one in the brain, but it branches off to a whole lot of other arteries and it has a variety of “segments” if you will. My blister (shape) aneurysm was located on the supraclinoid segment of the left internal carotid artery. I am suspicious that one of yours is located on this same segment on the right side or on the ophthalmic segment. Your eye pain is suspicious, especially if it has not gone away. There are a lot of members here that have headaches, and I am hopeful one of them will repsond.

Below is link to a You Tube video that may help you gain in your understanding.

HI Pink,

It is a difficult situation. I have one ACOM in brain as well and I can feel the frustration and the disappointment. My neurosurgeon recommended to wait and watch. I have a 4mmm . I have been in several neurosurgeon and they keep telling me the same thing. I believe is because it is more dangerous to treat than to wait. Right now I was recommended to wait one more year and get another angiograhm ( i had 2 already) It is just difficult to be in this situation. but I am sending you good vibes. you are not alone. we all here in the same or similar situation as yours… try to enjoy your life every moment. try not to worry( difficult ) and ask for a second opinion( I think i have no second but six or more neurosurgeons have seen me and keep telling me the same thing, I am schedule for another angiogram next year…and I am just enjoying every moment of my life. Good vibes to you!! you are not alone

I am unable to go to the US, there is no way I could pay to see a doctor. The video so cool thou. Thanks!

@prtnpink Welcome and as @phoenix33 mentioned, write as much as you want…I certainly go on and on. My metric knowledge is bad so I had to look up 130km/hr…it’s about 80 mph for those in the States.

Many of our members have headaches with an unruptured aneurysm and most are told the headache has nothing to do with the aneurysm. Even for those of us that have ruptured we are often told the headaches have nothing to do with it. But if you get the absolutely worse headache of your life, go to the Emergency Department immediately. You will know the difference.

I was hit by a car going about half the speed y’all were, I was on a horse at the time. They took multitudes of X-rays back then for my skull as I had a brain injury while a toddler. No X-rays of my spine. I had some pretty serious headaches, especially when bucking hay. Gradually I was losing the ability to use my right arm. It wasn’t painful, just wouldn’t do what was expected of it. My neck was always stiff. It took about 3 years for me to get a name of an orthopedic surgeon. The PCP thought everything was psychosomatic. I had a vertebrae in my neck severing the nerve to my right arm. I had numerous dislocated vertebrae. A few in my neck were causing the headaches. So I’m wondering if they have done any imaging of your spine…

Concussions are serious and can lead to a whole plethora of issues especially if they are severe. A woman I know had a mild concussion from a fall and she was able to get on disability within three months, it took me about 3 years to get on it from my rupture. Have you done any internet searching on concussions? One of the things I know is that you really need to limit your time on electronic devices. Use the 20/20/20 practice when your on any of them. Also try your CIHR or our NIH, either will have a lot of information and the latest research. Our countries work hand in hand on many research projects.

I understand from other Canadian members how frustrating getting in to see a specialist is for you. I seem to recall a conversation where if you live in a larger city, it can be a bit easier. I think this is anywhere, I know where I live there’s not as many specialists. Also I believe you have to be referred, referrals are controlled by which ever insurance a person has in the States. I hope the members who have been able to see a neurosurgeon faster can shed some insight. Next time you see your PCP, ask them to look at the ISAT study and see if they can’t bump you up the waiting list.

One more thing, I don’t have my images on my portal, I do have the radiologist’s findings. If you can access that, you will know the location of your aneurysm. If you don’t have that, your PCP should have it. Knowing the location will make your internet searches easier.

I did tell you I go on and on…

All the best and we really are glad you joined!
Moltroub

HI Noly, I haven’t seen a neurosurgeon yet, the doctors I am referring to are family doctors, that were looking after my family doc’s practice well she was away on Mat. Leave. In Canada, it’s very hard to get 2nd opinion or even get a referral to another Doc. without again waiting on another year-long waiting list, so we really have to take the 1st Doc’s opinion. It sucks!

If so many people have headaches with and without ruptured and or unruptured aneurysms. Why do they keep telling us it has nothing to do with it?? It doesn’t make any sense. I have been going through some of the posts on here and the one thing we all seem to have in common is headaches and painful ones at that… I have done more than a few internet searches on concussions. While some of the symptoms are the same there not if that makes sense. You will have to forgive me I am unaware of what the acronyms mean in the post you wrote or anyone else’s lol… Thanks

@prtnpink if we use an acronym you don’t understand, just ask what it means, we are all in different stages of learning. I didn’t even know what a brain aneurysm was until I ruptured and that was back in 2013. Luckily, I had gone to university and knew a good bit of the brain because of my courses.

I wish I could answer why doctors think they way they do, but I can’t. I only know that headaches can be caused by so many different things it can be mind boggling. I’m on one medication that causes a sharp pain in my head and when it goes on for a couple of weeks, I have to reduce that medication. Unfortunately, I need it for my neck with its damage decades ago which also causes a different type of headache back at the base of my skull and up to my forehead ( drunk driver hit me whilst I was on my horse). One of the theories on brain aneurysm development is brain injury I have read.

On researching, stay with trusted sources and when looking at research, stay within just a few years old, maybe 2-3. Medical knowledge changes constantly and it’s best to look at the newer ones. Five years or older can have some incorrect information with all the research that goes on. Be careful reading blogs etc and taking them as fact, they are after all just personal experiences same as we do here.

There was a movie that came out a few years ago called “Concussion”. It started a plethora of research here in the States.

Best
Moltroub

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Moltroub sorry to hear about your accident. I have seen the movie concussion awesome movie. I guess I’m just frustrated with the whole situation. I know my body and I know my accident caused these aneurysms and headaches as well as all the other symptoms I am having now. Thanks for the tip on looking for research not less than 5 yrs old. Waiting to see a neurosurgeon is killing me literally. Sorry for the late response. Thanks for helping me.

@prtnpink, no worries. One thing that got me through my accident and the subsequent mess that went with it was learning to do relaxation breathing. It is something I have done religiously since age 16 when I learned it. It is so powerful that I was actually able to control my blood pressure in Neuro ICU when I popped my pipe. I was on triple H therapy to make my BP stay really high. Apparently my style of breathing was counteracting the medication. One of the CC doctors came by with a neurologist and they were watching me. The wonderful CC Doc tapped my foot and said stop that. I said stop what? He replied, that breathing. I was confused and asked him if he wanted me to stop breathing LOL. I had done relaxation breathing so long it has become the way I breathe without thinking. Fast forward about 9 months I was in my neurologist’s office and the one visiting in Neuro ICU had actually written a page on how he had determined that relaxation breathing can help to control pain. He didn’t mention how he had come to his determination, hope he is doing research on it. You might want to give it a try…

All the best,
Moltroub

Hi prtnpink!

I’m Jules and loved that movie btw.
I had a near fatal car accident 25 yrs ago and have suffered with migraines ever since. I’m a frequent flyer of the ER when they get really bad. Almost 10 years ago migraines started becoming more frequent, but the same…yet again ended up in the ER where I was diagnosed with a right MCA aneurysm. I scheduled the aneurysm clip surgery 5 months later. It burst in the OR. The angiogram didn’t show it was double lobed. I still get migraines and a few neuropathy issues which I won’t bore you. FYI- Botox helped a ton with the migraines.
My advice is get on the phone with your ins company and your primary care dr to get you into a neurologist ASAP(who’ll you will need now and for a long time after - can best direct you to a good neurosurgeon too) AND a neurosurgeon. There is still soooo much they don’t know about the brain said my neurosurgeon (who is one of the top in the country). He said that you can poke the brain in the exact same spot on a 100 different people and get 100 different reactions and now apply that to a surgical procedure. Everyone is different.
It’s important you find a dr or drs that you feel comfortable with and SAFE. All else fails - go to the ER, they HAVE to evaluate you. Especially since you have a history of head trauma, aneurysms and headaches. Don’t let them shush you or tell you that you are fine. They would behave differently if they were the ones with the aneurysm and more so with multiple. Be the squeaky wheel because you are important!

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Hi there welcome to the group. I was told that my symptoms of headache, numbness in my arm, dizziness were nothing to do with my aneurysm. I think this is told to everyone. My aneurysm eventually burst and afterwards the numbness in my arm went away along with my headaches. Strange that we all had the same symptoms with our aneuryms… Doctors need to stop being so closed minded and start realizing that if thousands of people have the same symptoms with an aneurysm then they should stop being fobbed off.

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You are so very welcome!! :heart:

Hi Jules, I’ve never seen the movie lol… I live in Canada so I can’t call insurance or otherwise. We are at the mercy of our overload health care system because it’s free :frowning: There are huge waiting list to see any specialist. I am a fan of Botox but I don’t use it for headaches. My headaches/pressure are deep within my brain so botox won’t help:(

Hi Skippy, I totally agree with you 100%.

Hi I’ve had migraines all my life and 2 cerebral aneurysiums first one whilst 6 mths pregnant which leaked and the second one I had a test and was found 15 yrs between I had major brain surgery both times there is a way they can do them now through the artery in the groin they thread a coil up to the brain artery and it cuts of the Aneurysium swell so nothing like I had where they cut into my brain both sides. Headache can be caused sometimes when your spine is not good which defently would of been hurt in the accident you had I know how worrying it is try and get more opinions if u can it’s the same here in Australia where I life we have to wait if we cannot afford to pay to see a specialist which cost around $300 a visit. I’m sorry your going through this the Aneurysiums some times do not get any bigger so they are ok if u have regular tests to put your mind at rest the headache I had when the first one leaked was like a truck running over my head for hours and because I was pregnant I couldn’t take anything for it and at first the hospital told me it was due to being pregnant for weeks I suffered then I passed out( due to it leaking) in the shower one morning and I don’t remember two months luckily my son was born healthy a month after my memory came back and I was a single mum no help at all. I’m here if u want to talk and so is everyone it’s so good to have I hope so much you get some answers that help to make u feel ok.
Sending my caring thoughts
Michelle​:100::yellow_heart:

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Hi Shelly, How horrible that must have been for you to be pregnant and going through that. Take Care