Newly Diagnosed & All The Emotions

General
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Hello everyone, my name is Valerie. I’m 34 years old from New York. On the 4th of February, I went to the ER for what I just thought was a very weird migraine. I had been experiencing head pain accompanied with vision bluring, facial tingling and eye pressure on my right side off and on for a week. The last thing I was expecting was to hear I had a 2.9 mm Cerebral Carotid Artery Aneurysm. Tests showed that it hadn’t ruptured and I was essentially sent home with “come back in a year”. I think I was operating in a state of denial, because it didn’t hit me until I saw my neurologist and he went over what a rupture would be like.

That’s when the depression, anxiety, insomnia and overall overwhelming amount of feelings started. I don’t know if it’s because until I see a neuro-surgeon on the 13th, I just have no plan of action. No idea what to do, how to manage/reduce risks, etc. Everyone is kind of like “You have this thing in your brain, could be an issue, might not. Have a good day.” It’s frustrating and maddening. I’ve been trying to be stoic but I keep breaking down.

To add to it, I’ve still been having the migraines. They’ve pulled me out of work twice (1 week each) since the diagnoses and my doctor and I are working on managing them. I just… feel very scared. I’ve read through the posts and realize I’m lucky they found it. I just don’t know what to do with the knowledge of it being there now. Kind of stuck in neutral of trying to figure out how to move forward.

Any help, thoughts, advice would be greatly appreciated.

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I can relate very well to what you are experiencing. I was diagnosed with a large aneurysm in Sept. 2018 and did not have it treated (coiling and stents) until Dec. 2018. Deep down, I had to trust my neurosurgeon that the treatment did not have to be done immediately. The waiting was difficult at times, but I resolved to make the most of each day. Hope you get some answers on the 13th (assuming it’s March) and that all goes well for you.

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I think a plan of action will help relieve your emotional response. I think being “on hold” or “in limbo” is more difficult than going through treatment of some sort.

Between now and your appointment I suggest you start a list of all the questions you want to ask – be proactive as much as you can! – this should help reduce the stress caused by inaction which will in turn reduce the migraine reaction to the stress.

azurelle

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I was just where you are at Christmas time. It is perfectly natural to feel anxiety and have difficulty sleeping after such news. I felt better by the time I went to see the neurosurgeon at the end of January. I think it just takes time to wrap your head around it. But I also think the medical professionals could do a better job with informing and reassuring. I know in my case I found out about the aneurysm through an MRI report and the PA who ordered the MRA to confirm was so rude when I expressed concern – telling me it was soooo small and “not even causing my symptoms.” He did not seem to understand at all that I might be shocked, dismayed, and need to ask questions before proceeding on to the next test.

Just know there are many like you. We are here. We feel anxious, frustrated, and overwhelmed at times too and it is perfectly okay to express that – in fact, kinda the point. Expressing your concerns and talking through your thought processes with others helps. I know it has for me. :slight_smile:

I wish you the best going forward. Give yourself some time to process it all.

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Hey Valerie,
Having been in a similar situation, yea, it’s damn scary. Any brain diagnosis is scary. These medicos deal with this sort of thing on a daily basis and are way too dismissive. For us, the patient it’s not that simple. Not that it’s much comfort but 2.9 mm is considered to be small and considered a low risk of rupture. I say ‘considered’ and some dr’s are very quick to minimise any concern but there can be many variables such as exact location, patient health/other conditions etc.
Now, in saying that, there really is very little you can do until you have seen a neurosurgeon. Initially I was told the headaches were stress related, past stress, present stress and future stress. They also tried to explain my other symptoms away as a side effect of stress. No wonder I was stressed, I feel like my head is going to explode.

My suggestion to you is to keep a pain/symptom diary. You can go to your scheduled appointment and explain your symptoms but they can be perceived as hearsay, where if you have a documented record it can show frequency, duration, level of pain etc. Now, I say level of pain and this can be real difficult to quantify and from my experience some medicos can be very dismissive when you say ‘I have a headache’. Some have the idea of 'Well, we all get headaches" I no longer call them headaches but more ‘Mind numbing explosions of agony’ to give some sort of emphasis of just how extreme they can be. They wanted me to give a rating between 0-10, 10 being the worst pain ever. Some of these headaches were simply off the scale.

I found a chart online with an image of the skull and body to mark where the symptom was ie tingles in fingers and toes, ache behind my right eye affecting x,y & x. I also kept a record of my activity as some dr’s were very quick to point out that I’d simply done too much in my day, when I knew I hadn’t. I kept a record of intensity, fluid intake, frequency and medications. This showed the medicos the occurrences but it also showed that I was being proactive, it also showed that this wasn’t a once a week occurrence as some may perceive it but a daily (even hourly at times) thing.

I must also agree with Azurelle, make a list of questions. Often we can go to appointments and simply be overwhelmed, leave the appointment and think 'Ohh I should have asked…" Write it down. You may consider some questions irrelevant or stupid, but no question is stupid if you don’t know the answer. Ask. They may also see it as irrelevant but it doesn’t matter what they think. Ask. Just for your own peace of mind.

I’ve said this to others before and I’ll say it to you again. Some people can be really dismissive about headaches, but if they’ve never been in this situation they really have no idea of just how bad it can be. We know this because we have been there ourselves, we know from our own experiences, so come talk to us. Our information doesn’t come from a book, it comes from our own lived experiences. We know.

Merl from the Moderator Support Team

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Valerie , things will get better … before you see neurosurgeon as a precaution : maybe no alcohol , no lifting anything heavy … you also need to sleep , the one good thing already happened you have learned about aneurysm exist and it’s very important . Little by little things will settled , may be doctor will order more tests, then they develop the best plan . They will look for the shape and condition of the aneurysm . After they study all images and results , the picture will be clear , the plan will be developed and you will feel more confident then . But now since you had such bad episode of a headache , it’s important to rest , not get overwhelmed at work ,since getting nervous or overtired can cause new bad migraines .

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Valerie, the lists are paramount! They help you focus on what you want answered. Don’t let the doctor be dismissive, insist on answers you understand. Take someone with you. Take notes of what the doctor says and ask for clarification of your notes.

Everyone is a bit fearful when they see their Neurosurgeon. It’s sometimes hard to remember what they’ve said. It’s always easy to let them run the appointment and then once driving back home, you remember what you wanted to ask. You need to have some control. But remember, they have only allotted time to see you. The notes help keep the time allowance.

I think the medical field sometimes act dismissive for a couple reasons, it’s their defense mechanism and they don’t want to increase your concern. Challenge the doctor, ask why, a lot, for clarification. The doctor will either get upset or start using simple language. If you don’t understand the terminology, get it clarified.

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Valerie, it is perfectly natural to have your emotions as discovering that you have an aneurysm and what could happen if you have a rupture. If there is a light in the end of the tunnel, it is that we are actually in the “Golden Age of Medicine” in treating aneurysm. Prior to the 1980s and introduction of MRI and CT scan in medicine, a spinal tap was performed to see whether a patient had an aneurysm rupture. In those times, you would not have known that you had an unruptured aneurysm. Now, NeuroSurgeon have many advanced tools like MRA (angiogram) which is gold standard in imaging, advanced endovascular surgery, etc. Since you live in New York, I am sure that there are hospitals designated as centers of excellence for Neurosurgery treating aneurysm. Like Moltroub mentioned, take a lot of notes. Here is a good site with information regarding aneurysm (what, detection, causes, treatment). It will help you get familiar with the terms Best of luck to you. https://taafonline.org/conditions/aneurysm/about

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As you can tell from all of these responses, we’ve all been where you are and have survived! But it is hell waiting! I considered it a ticking time bomb! From diagnosis to surgery, it was about 4 months and I even flew to New Zelanad for a month vacation. Had a craniotomy on Tuesday, aneurysm was clipped, and went home on Friday am. You’ll be ok to wait!

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The waiting is so very difficult! I learned about my aneurism last December and had it clipped through craniotomy in a March. The waiting was intensely difficult… There are so many questions that need to be asked—one is location, location, location. Mine was also small, but in a location that most often ruptures.
Another question—can it be coiled or repaired endocascularly? So much quicker recovery than from craniotomy! If I could have had that kind of repair I would have, but almost a year out from my craniotomy, I’m just so grateful I learned about my before rupture and it’s now repaired! One other thing to consider—the growth of an aneurism is not always steady but sometimes can happen very quickly, which makes watching it difficult. Good luck!

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I went through the same emotional tumoil at first after my diagnosis in 2013. Mine is 2mm and the Neurosurgeon told me the samething they told you after my initial appointment that the aneurysm is small and I have to come back in a year. After one year, and a new MRI/MRA, I was told that it’s still the same size and I should come back in a year again and do a new MRI every year. Long story short, my aneurysm is still the same 2mm at my last MRI last year and I follow up with the doctor every 2 years now.
I will advise to stay strong and try to treat the migraine that is bothering you with medication and follow up with the doctor in a year like you are told by your doctor and see if the aneurysm has growm or stays the same size and you and your doctor can then decide what to do. I was having migrane headaches almost everyday too during my initial diagnosis and I thought it was the aneurysm that was causing the headaches but my doctor said that aneurysm does not cause headaches or migraines. Now I don’t have headaches anymore and I don’t know what happened or how it stopped.
You are still very young and have a long life ahead of you. Don’t focus too much on it. Try and take it off your mind and hope for the best. Personally, I don’t even remember that I have aneurysm until its time for my yearly MRI or now every 2 years test. My faith has greatly helped me a lot to put all the anxiety out of my system and live my life and trusting God. Stay strong you will be ok and take care!

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It’s so scary. The fear was life changing for me. I was also 34 when I was diagnosed with a 3.5mm aneurysm. I waited 4 months before having a craniotomy clipping procedure. Those were dark days. I was faced with my own mortality for the first time in my life.
But here I am. 4 years later. I’m doing so so well. I have two kids, 3 years and 16 months. I’m feeling good. And I don’t think about aneurysms every day. I let myself be hopeful again about the future. But I’ve gained an enormous sense of gratitude from the experience.
Hang in there.

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Hi Valerie! I am in the same boat as you. I’m 21, and just found out last week that my MRI showed an aneurysm (my only symptoms being a droopy eyelid). It’s shocking news but the only way I’m really dealing with it is just sort of accepting that there’s nothing I can do (except try to minimize risk factors) until I see my neurologist. The wait is the hardest part for me, and not knowing what can be done, or if they will do anything at all. I guess for me, the thing that has been most helpful has been trusting that my neurologist knows more than I do, and that a lot of my time spent worrying over it won’t help me at all. Easier said than done, I know, but that’s what has helped for me!

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Hi Valerie,
I, too, live in New York. I am having the same situation you described. I have only had sinus or tension headaches in the past, but this summer I ended up in the ER with a headache worse than I could have imagined. A few weeks before that I began to experience vertigo, to the point that I was falling down; what I now know is tinnitus; and an inability to tolerate light or sound. Although I was diagnosed by a neurologist as having had a migraine, a CT with and without contrast also revealed a 4.4 mm aneurysm on my basilar artery. I, too, was told that I should come back in a year to have it rechecked.

Knowing I have something potentially deadly or completely debilitating in my brain has made me extremely anxious and reactive to any headache or pressure in the back of my skull. I asked my neurologist what symptoms meant something was starting to happen and was told “I would know.” I’ve taken this to mean that I’ll know because it is too late to do anything except damage control.

I’ve decided to get a second opinion, but this is after 7 months because of a combo of denial and terror. This board has been a lifesaver with info that I forgot to ask my doctor or information I wanted to understand as time has gone on.

My situation is complicated by the fact that I have not had the courage to get in the MRI. I am very claustrophobic, and the helmet they put over your face is more than I can manage. My neurologist said to forget about it for now. I’m relieved to not have the pressure to do the MRI but equally as concerned that I’m missing important diagnostic information.

The only other thing I have done, which may or may not make a difference, is leave my highly stressful job and make a real effort to sweep away stress without anti-anxiety medication–but no benzos is just me because I have had an addition problem with them in the past and they do affect brain chemistry.

All this to say that I have no solution for our situation, just that I can identify with where you are, and in that regard you certainly not alone.

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Hello Valerie,
I went 5 years between discovery of my aneurysms, and surgery. The first few years were easy. I had no symptoms, such as headaches,etc. We were just watching. When I started researching about rupture, and what could happen my anxiety grew. I decided I either do preventative surgery or stop researching and dwelling on what could happen because I couldn’t live with that fear. After 5 years of the initial discovery, we found that they were growing, and one was near 6 mm. It seemed then to make sense to go ahead with the surgery, which I did. When I scheduled the surgery to a month later, I told myself that I should just enjoy life as much as I could with my young children before the surgery, not fully knowing how things would turn out, because we never can tell 100% how things are going to go, and what it will be like after. However, during that month of waiting for the surgery, anxiety was my companion instead of joy and life enjoyment. So, I totally can relate to that anxiety. I had a very competent surgeon who was able to access and clip all my aneurysms (3 + 2 more he found during surgery). The surgery didn’t seem has horrible as I thought, but the recovery and side effects were far more challenging than I anticipated. While I am thankful I did not suffer memory or vision loss, use of my limbs or such, I still struggle with a hyper sensitive nervous system and insomnia from the surgery. This was a preventative surgery (I had no headaches or other disabilitating problems), which, while it may have saved me from a rupture, has brought very challenging problems - sounds being too loud, light being too bright, never being rested enough from insomnia, and how that affect my state of mind. I wish someone would have told me I might suffer from depression, insomnia, and a hyper-sensitive nervous system afterwards. Through time and counselling I have learned to cope with the long-term post-op effects, and I have to manage my life with care so I do not become overwhelmed. I am sharing all this not to scare you, but to give you insight in someone’s experience. Everyone is different. I haven’t heard of anyone who struggles exactly like I do. That’s probably why doctors and their assistants never warn us of all the problems we might experience after surgery, or else, we probably would not go ahead. May the Lord give you the guidance you need in the right decision for you to make.

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Go to NYU Langone. I did. :wink:

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NYU is where my neurologist is. Is it appropriate to ask you who your doctor is and if you like him/her?

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Hi Margie. Dr. Peter “Kim” Nelson is the neuro-radiologist who did my surgery. He’s one of the best, if not the best, in the country. I went to see him from NJ as he is so well regarded. My neurologist in NJ studied under him & told me if he had an aneurysm, Dr. Nelson would be his #1 choice. I trusted him with my life & he did not let me down. When you call, speak with Xio (pronounced “Z-O”, just in case you don’t know how it’s pronounced, I didn’t). She was my main contact in his office and very helpful. It takes her a little while to warm up but she’ll be your go-to-woman & she gets warmer. :slight_smile:

You can tell him I referred you, he did my surgery 3 years ago. There have probably been hundreds of people through his door since then but he may recall. He’ll be very honest with you, will go through your MRA with you, piece by piece, literally (very interesting) & will answer all your questions. Bring someone with you to the consultation to help listen & to support you if possible. It’s a lot to process. Feel free to email me again if you’d like. It’s been an experience & I remember well all the stress. He may say to leave it be, which would be great. Wishing you well, try not to worry too much in the interim.
Best,

Amy

Amy Jester

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hello
Please can you help with details regarding your aneurysm because I just got diagnosed and I’m planing to go see dr nelson

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Hi Valerie! I am with you! I found out on March 2 that I have 8.5 mm aneurysm and will have WEB procedure on April 24. It has been an emotional roller coaster to say the least. The worry never leaves my mind. Mine is unruptured on the aneterior communicating artery. Every pain or unusual feeling leads me to believe that it may be rupturing. I ask one doctor right after angiogram in recovery if anything was found that indicates it could rupture soon. Was told they did not have crystal ball and that I ask a silly question. I told them it would not be silly if this aneurysm was in her head. This was a dr working with my surgeon.