New to group and scared

I am new here and I had been getting dizzy and having some muffling in my left ear all mostly during workouts, my neurologist I see for migraines suggested a CT scan she didn’t think it would be anything well last week I found out there is an aneurysm in the PICA artery , I have another appointment coming up amd am scared like I have a ticking time bomb and everyone is telling me it must be nothing to worry about of no emergency surgery was scheduled. I can’t help but be scared and I don’t know what to ask the surgeons at my appointment? Any guidance?

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Welcome to the group @Kohlm11, we are happy you found us! Hopefully many members will add suggestions, especially from the ones who haven’t ruptured as their personal experiences are a wee bit different than those who have.

First thing I can think of is to breathe! Do some deep breathing, be in the moment and aware of the sounds, sights, etc that are happening around you, then clear your mind, focusing on a positive.

When you go to your appointment, take someone with you who can take great notes. BH can’t take a good note much less great ones. When we went over the answers that were supposed to be written down, we were both scratching our heads. There’s a good deal of stress at these appointments o be prepared! Print out the questions for everyone - you, the person you take and the doctor. Leave plenty of space to write down the answer between the questions. You can also use the portal for them once you get established and the doctor’s PA or NP will usually be the one to respond.

If the doctor falls into medical speak and you don’t have a background in this language, stop them and have them clarify in words you do understand. Absolutely do not shake your head in agreement if you don’t understand! It sends the wrong message to the doctor who despite their vast wealth of knowledge, has never taken Mind Reading 101.

I would probably ask what type of cerebral aneurysm it is as there are five different types. Types of Cerebral Aneurysms | Joe Niekro Foundation (Thanks @phoenix33)

Once you know the type, mine happens to be a multi-lobed, you will probably want to know the size, if you don’t know already. Then the dreaded question you most likely have already, what’s the best course of treatment for you and any health issues or behavioral issues you may have. The surgeon will share their experience with the type, size and location you have, if not, ask the person.

Your surgeon may suggest just watching it with images every so often, or choose one of the means to repair it before rupture. Make sure you understand completely which route they want to take. Explain your fears to the surgeon. There was a huge study several years ago that many surgeons agreed with, that study fell out of favor. So please, please don’t fall for statistics that are confounded; or worse yet, the study, website, etc who can’t or don’t back up their statistics. It goes back to the saying of don’t believe everything you read.

Develop trust with your surgeon, if you can’t, then find someone you can. I ruptured and met my wonderful surgeon, Dr. Stacey Quintero-Wolfe, in ICU. Luckily, we hit it off right away. She is not arrogant, extremely intelligent, says I keep her humble :rofl:. Because of the type and location of my little aneurysm, she has said she wants to keep her options open. Many of the doctors in ICU disagreed with her and a few surgeons would probably still disagree with her course of treatments with me. The way I perceive it is I am still alive, so the naysayers can jump in the lake for all I care. The latest treatment was with a Neuro Form Atlas Stent that was just approved in 2019. We will find out this coming up Friday if it’s doing it’s job.

Once you get your answers, you may want to check your medical insurance provider, if some type of surgery is decided on. You will get into the roller coaster of having everything that can be done, done in the fiscal or calendar year that you can to reduce co-pays. Dr. Wolfe is keenly aware of out of pocket expenses and did her outmost to keep my costs down. Some medical facilities will offer a discount if the co-pay is paid in 30 days, so you might want to check on that. Our local hospital offers a 20% discount for private pay insurance, not Medicare or Medicaid as those prices are already discounted.

Again, remember to breathe, we are here for you!
Moltroub

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Thank you so much for responding to me I have felt alone and have spent the past week or so crying off and on I don’t get how and why and feel like I’m being punished. Thank you I will see who I can bring with me . You have given me some great questions to ask and yes definitely once medical talk comes out I will ask for terms I can understand. I truly appreciate it .

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@Kohlm11
Welcome to the group. The people here have been a great help for me and I hope you will have the same experience. I ruptured in October last year, an aneurysm that I didn’t know about and I had to go back for a second surgery in mid April. I was lucky enough to survive the first hit and the road to recovery after the rupture was rough. The second surgery was a totally different experience. I was discharged from the hospital the next afternoon. I’m almost back to my normal self and I have regained my strength and daily activities. I think you have gotten excellent input from @Moltroub . I just wanted to reach out to you as others in the group have been doing to me. You are not alone in this journey. Get back to us with your questions whenever you need.
All the best to you.

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Thank you I really appreciate it I think most mean well when they just tell me don’t worry but I can’t help but worry since I don’t have any answers yet . I know I can’t control things and having others to talk to who have been through similar experiences will help me ! I appreciate you reaching out !!

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@Kohlm11 please don’t let the aneurysm start running your life. Easy to say and hard to do, I know. For me, the first step is always to acknowledge, then accept it is what it is. You are already moving from reaction to action which is a wonderful step IMHO. What I do is give myself a set amount of time, a very short time to contemplate on my little bugger. I’m a bit oppositional by nature, but I do need to acknowledge those things in life of which I have no control whatsoever. I’m not much of a list writer but if it seems overwhelming I do write the pros and cons down. It helps me.

As for people giving platitudes and saying things that don’t fit our fears or concerns, that’s human nature. We often forget we sometimes do that to others as well. What we really would like is to be heard and that takes active listening skills. It also takes us having responsibility to really have our fears verbalized and not beat around the bush with them. We should never assume others know without us telling them. It’s also really hard to do, especially if we are raised to not discuss our emotions.

I’ve also learned since I ruptured it’s really hard for me to get folks to understand my brain is a bit slower to send messages on everything. And it’s infuriating when others who don’t know me well think everything is fine. But it is up to me to swallow my pride and explain what is happening. It’s also up to me to figure out how to get to where I want to be in anything.

Crying is ok, in fact it’s a good mechanism. But please don’t let it lead your life. Set a bit of time aside to acknowledge and then a bit of time to just enjoy life in the moment. Do a favorite hobby, spend some time talking with loved ones about anything except your aneurysm. Takes a great effort on your part but I know you can do it!

All the best
Moltroub

PS, thank you for the kind words!

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Thank you so much your right I am sure I have failed to say the right thing many times ! I guess I have been angry wondering why and it doesn’t matter . I know they love me and only want the best for me . Yes thank you I am trying to focus on things I like to do and my kids .You have helped me more than you know !

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Greetings @Kohlm11 and WELCOME! I wanted to respond to this earlier but I was at a meeting over the weekend with no cell service and spotty wifi.

I do agree with what @Moltroub is saying and that you should try not to let this run your life. I will tell you I let my unruptured aneurysm run mine. The biggest mistake I made was putting off surgery for 4 months. I was in the middle of a launch at work and the holidays were fast approaching. All I did was think about that craniotomy. It was incredibly unhealthy.

One thing I did was audio record every clinic visit I had. If you have an iPhone, there is a voice memo app. Your neurosurgeon “should” be ok with it. I used those recordings just recently when I learned my aneurysm regrew. It’s amazing to listen to what was said 5 years ago and compare it to today. The recording will help you remember exactly what was said. So often we cannot recall conversations, especially when we are stressed. I would also get a second opinion. I went through open surgery and the aneurysm needed a second procedure anyways. I often wonder if I would have had a flow diverter or coiling the first time if we could have avoided this.

Please let us know when you have more details and how you are doing? I will be sending you light and love.

Kim

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Hi @Kohlm11,

I am a ruptured PICA survivor. I just had my 7th Annie-versary in April. I would search PICA on this site. It is actually rare location (only 2-5%). There are survivors (both unruptured and ruptured) who can share their experiences. Since it is rare, not all Neuro-Surgeons have experience with PICA aneurysm surgeries. I was extremely fortunate that my Neuro-Surgeon at my local hospital had experience. I would check to see if your insurance covers out of state research/teaching hospitals like UCSF, Barrows, Mayo, Cleveland Clinic, NYU etc. Many PICA aneurysm cases get referred to these research hospitals. To be familiar with terms like types of aneurysm (fusiform, saccular) as well as treatment (clipping, coiling, pipeline), here is a good site. TAAF: Aneurysm

As @Moltroub mentioned, stress is not good for aneurysm folks as it raises blood pressure. Currently, I am part of UC Berkeley study on blood pressure reduction. Through breathing and meditation, I dropped my BP by 20 points. Stay away from chiropractors. Prior to my rupture, I was having stiff neck, some ringing in the ears and dizziness so I went to see a chiropractor for neck adjustment. Two days later, it ruptured.

Feel free to reach out via direct message. I will try to find other PICA survivors where we shared our experiences and notes. It is a scary thing but the positive is that you found it. Also, it is golden age of neuro-surgery as new techniques, imaging etc is continuing to improve.

After you found a Neuro-Surgeon that you are comfortable with, we can chat further.

Best of Luck. I hope the best for you.

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Welcome! First you will be ok! Find a hospital that specializes in brain surgery. I had 3 ruptured aneurysms clipped and a 4th one that they couldn’t get to. It will rupture the surgeon says. I accept that.

Go have surgery. They might clip or coil. Fixing the problem is the way to go before it ruptures.

Plan ahead. Have someone to be with you at the hospital. I had my surgery at Emory in Atlanta. I had only a 25% chance to make it.

After surgery you come home. I had to stay in the hospital 3 weeks, but it was good. No pain!

You will recover. Give yourself time to heal. I was ok after 4 weeks.

Don’t be afraid!!! Get over the fear and do what you need to do. All will be ok after and then it will be over!

Many prayers to give you strength!

Thank you so much I appreciate your response as I am navigating through all of this seems so overwhelming at times but it helps to have people to chat with who have been through this experience. I at least feel less lost .

Thank you so much for responding yes I have read how these Pica aneurysms are rare so I have set up a call with the Mayo Clinic in Minnesota and I have an appointment with the vascular doctors at Northwestern where my other doctors are . Thank you so much for letting me know and I will reach out after . I will lol for other Pica survivors too . I truly appreciate your help amd am trying to relax although it’s been rough at times ! I have been trying to workout and be normal still although sometimes I get dizzy which is why I went for the CT. Anyway I appreciate it very much and will find a way to relax !

@Kohlm11, my Neurosurgeon gave me the same advice @2Fight gave you…she would prefer I never see a chiropractor. But she wholeheartedly supported me going to a massage therapist! I always thought it was due to my spinal issues, I never thought it could be because of my aneurysm…yet another question to add to my list LOL

Also, I was wondering @Kohlm11, what did you do to relax prior to discovering your aneurysm?

All the best,
Moltroub

I try to exercise, I used to run but my knee surgery slowed that down . I like to sit and read but right now the quiet isn’t helping me since I seem to breakdown so much these days ! I love music and going to see love music and being in the yard with my dogs . Being around my friends . I am trying not to work as hard as I usually do that’s what I have put ahead of a lot .

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I remember I do like to go watch baseball games and take walks in nature too so maybe I need to go do that more !

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Hello, I have always callled my neurosurgeon nurse with my questions. They are awesome and enjoy educating people. In my experience I never wanted emergency surgery planned surgery definately do not let people who have no idea what your going thru scare you. Everyone is different. I was lucky my surgery was thru my groin. I look like me. But I am damaged. Most my family don’t understand because I look alright. My twin boys are helping me take care of myself. I have severe anxiety PTSD depression the list goes on and on and on. I tackle one task at a time. My own pace. I wish you well

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Thank you and I am trying my neurologist I feel was no help at all I am trying to wait for my appointment with the surgeon to see what they say but am guessing Because it’s a rare one I will be referred to a Chicago hospital. I also have an appointment set up this week for The Mayo Clinic in Minnesota at least a phone call so we will see what happens. Thank you for reaching out !

@Kohlm11 For exercise, I would consult with your physician. The reason is that exercise (cardiovascular) does help reduce BP; however, during exercise, heart rate and BP increases. After you stop, BP is lowered. Blood Pressure After Exercising: What’s Normal, Seeking Help, and Safety I think that you mention that you started to get dizzy during your workouts. So, it appears that it may be causing stress to your neurovascular system while exercising. It is only speculative as I am not a MD.

For breathing and meditation, look for Youtube demos on Ujayi (Warriors breath), meditation music like meditation bells by Xumantra. This music was a big winner for me in reducing stress and BP. RELAXING Stress Relief Music: GENTLE VIBRATIONS - Feel Calm and Centered with Binaural Beats - YouTube

To further elaborate why chiropractic neck adjustments are dangerous is that there are incidents of vertebral artery dissections which is a tear. The PICA artery branches off the vertebral artery into the lower brainstem and lower cerebellum. For this reason, my neck adjustment probably trigger my rupture.

Lastly, it is good to have a second opinion. (My friend who has an unruptured aneurysm consulted with 4 Neuro-Surgeons). The main question to ask is whether they had experience in PICA procedures. When the Neuro-Surgeon describes his strategy for you either clipping or coiling, stent, flow diversion, ask why he/she choose this procedure.

Good Luck

PS. My Shiba Inu is my best medicine.

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Thank you so much yes I have two appointments set up so far and I will ask about the exercise so I am careful they offer a yoga class as well so maybe I can at least try that for now . My dogs help me a lot especially one of them she is by my side a lot and knows when I need her the most !

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Sorry to hear about your aneurysm and symptoms. Many people can have an aneurysm and not realise they have one until it bleads, as mine did. Although looking back, I had numerous symptoms, this wasn’t diagnosed. It may be worrying finding this out, but you can be re-assured you are not alone.

If I can offer you any advice, I know it is easier said than done, but try and keep calm, try breathing techniques, relaxing music, (there are many things online), try walking in nature, fresh air, spend time in quiet surroundings etc. It helps relax and destresses me. I just look around me at the colours in nature, the sky, smells, contrasts, sounds, although at first, certain sounds did effect me, but I got used to this etc. If you are worried, talk to someone. Find your own way of calming yourself, as you will also have to try and lower stress, keep blood pressure normal etc.

When seeing the Dr/specialist, I would write a list of what you want to know:
These could be anything including: Size of aneurysm, what they will do: monitor etc, what your options are, treatment, any diet that would help?. Any advice they have for you and your specific aneurysm?.

If you can and have a family member, or close friend who knows you and you trust, take them with you for support to appointments, and to ask any other questions they may think of, or that you want to know, and if you are unsure of anything, don’t be afraid to ask. Don’t agree to anything unless you are fully sure, I shouldn’t think he would force you to do anything you are uncomfortable with. The expert would understand your worry as he has seen many other people in your position before.

Myself, I have a cerebral aneurysm, and it wasn’t till 2016, when I first discovered I had an aneurysm, and received an MRI every year to check the size and danger of the aneurysm, but as of last year, these checks won’t be now until five years time, due to it being stable over the last 4 years I met my surgeon for the first aneurysm after the op, who placed a platinum coil and saved my life when I had a blead in 2016, and met other Neurology specialists a few times whilst attending appointments to receive the results of previous MRIs, so you are in safe hands, they know what they are doing.

In times of pressure, distress in our lives, we can either rise to the occasion, admit and live with it, or crumble… Many, if not all on this site have risen to the challenge, admitted what we have and live with it, whilst following as much of a normal life as possible, depending on each individual issues. Surviving, and somehow obtaining more will power, inner strength than we previously ever thought we had, that has got us through, or is still getting us through issues with brain, aneurysms or related problems. Like many others, you can do this, and like myself you will somehow find the inner strength to do what needs to be done.

I am lucky as I live in the UK and got my life saving op free via the NHS. I don’t know how this works in the USA so I suggest obtaining as much info as you can, get the best possible expert to guide, advise you, someone experienced in your type of aneurysm, get your family to help in any advice, support, wherever issues they are, and whatever help is available, but don’t let the aneurysm control your life.

Again try not to worry, but be aware of the true reality of having an aneurysm. Many people are lucky and never have an aneurysm blead as it is stable, not large enough or not in a certain place to cause a problem. You know you have one, in a way you have an advantage, gradually, you will obtain simple steps that work for you to help yourself in many ways, plus you have the backing advice you need from experts who will hopefully monitor and advise you. Unfortunately, your will have to weigh both the pro’s and cons when you have seen the specialist, depending on what he says. Talk about this and decide, pray etc. over whatever length of time is required. Believe me I did, and like many after a brain blead who are still here today, I consider myself one of the lucky ones to survive, especially when still living with another aneurysm that thankfully is stable.
Listen to the specialist/neurosurgeon and your gut, only you can do this, but also confide with family and friends who you trust.

If you want to as I did, cry, bubble up, get it our of your system, and do a lot of praying. Thankfully, up to now my other aneurysm has been stable. Is this, coincidence, faith, divine intervention, luck, stubbornness to live and not give up, I don’t know. But I know it is thanks to the specialist surgeon who operated that day, that I am still alive.
If you can see and get nutritional proper advice from a well qualified person as I did, it may help you as it helped me.

When it comes to exercising and having symptoms as you have stated, I would slow down on what you are doing, warm up and slow down before and after exercising, and get expert advice on what is best for your situation. I know that yoga uses stretching to relax, so after my op I avoided this altogether, had the chance of Pilates but after research I avoided Pilates because of the side effects of repetition, stretching etc. I tried Tai Chi which is using slow relaxing positions to relax, which my Dr said would be good, but I only do slow simple movements, and avoid a rush to my brain.
This does help me a lot, but as your aneurysm is different, I would advise seeing a specialist in your type of aneurysm for advice in many things including, exercise, nutrition, avoidance, what youcan do to cope, wherever if possible see an expert…

Take care.