Confused and scared...need support

General
1

Hello! I’m new to the community. This might be long and I apologize for that. I’m so confused and scared right now and I need some guidance, support and information about what I’m going through, so if anyone can help me and give me ANY type of information I’ll greatly appreciate it.

At the beginning of May I woke up one morning and felt drunk. The entire room was appearing to be tilted to the right and I felt like I was falling. I thought I had some left over fluid in my ear from a previous diagnosis of walking pneumonia the month before. I went to the DR, she said everything was “fine” and referred me to an ENT to check out my ears since I was so very “dizzy”. The ENT took my history and did a VNG test the following week. I “passed” the VNG test and he said this mean something neurological was going on and causing me to perceive motion incorrectly. So, he wanted an MRI/MRA completed. Last Monday I had the MRI/MRA and then on Wednesday my entire world was flipped upside down.

The ENT nursed called me at work at 4 p.m. to tell me “your brain looks great, no tumors but you have an aneurysm and we are going to refer you to a neurosurgeon for follow up.” That is all she said. I couldn’t speak, I couldn’t breathe. I ended up calling her back and she told me “it isn’t a big one and no I don’t have your appointment set up yet, I’m working on that now but the surgeon we refer to has already closed for the day”. I felt like I had been punched in the face. I work in the mental health field and part of my daily job is coordination of services for my clients. I would have NEVER contacted a client with news like that with out first consulting with the physician I was referring to and completing the appropriate referral information. I would have THEN called the client, requested a face to face office visit, reviewed results as best as I could and then gave them the appointment. I was so upset. She asked me to go to the diagnostic center and obtain my “scans” to take to the Neurosurgeon. I did that and it is all electronic so as soon as I got back to work I pulled up my scans to review. It was amazing to see my brain! I think on scan 56 of 120 you can see this little bitty “blob” on the left coratid artery that shouldn’t be there. I wouldn’t have even known if the radiologist hadn’t have drawn a big X through it to measure it. From what the scan said it is 4.2 mm. At that time she STILL didn’t have an appointment for me with anyone and I was beginning to panic even more.

I’m a mother of 2 little boys, a 3 year old and a 5 month old and my heart just sank, I was so sad and heartbroken that something might happen to me and take me away from them, I still am really. I stayed on the phone with the nurse at the ENT office and she continued to act as if she had told me I had an allergy to eggs or something. I mean, it isn’t every day some one tells you “Oh you have an aneurysm, no biggie!” So, I ended up getting pretty angry with her and requested she refer me to a different Neurosurgeon if the one she wanted to refer me to wasn’t really responding. So, on the 6th of July I will be seen at Neurosurgical Associates in Knoxville TN. This is a 3 hour drive for my family. Originally I requested she refer me to UVA but she wasn’t responsive to that for some reason (I did end up filing a formal complaint about her, I mean an ENT nurse telling someone they have an aneurysm via TELEPHONE??) Well, after I researched other Neurosurgeons in the area and requested the referral to Knoxville and realized I would not be seen right away she consulted with the ENT DR again. This time, she gets back on the telephone with me and tells me…the DR DOESN’T KNOW IF IT IS OR ISNT AN ANEURYSM!!! WHAT??? What else COULD it be and if he doesn’t know one way or the other why in the world is his nurse calling a patient and saying it IS an aneurysm??? I was livid!

So, here I am…on Monday morning and I still have to wait until next week for my appointment (which is stressing me out), I mean, I feel like I have a ticking time bomb in my head and any second now it could explode. It is on the left side behind my eye/sinus.

So, long story short. I need help  I need support, guidance, information.

I realize it is “small” yes I’ve been told that over and over again but the small ones can still “rupture” right?

If it isn’t an aneurysm, what else COULD it be?

Has anyone else had an aneurysm in this location? What steps have been taken for you?

If it were to rupture, giving the location and size, what type of damage can this do? (I know it varies but I would like a general idea).

And I know this question is going to make me sound superficial but if I have to have brain surgery for this, are they going to shave my head?

The “dizzy”, “tired” and “confused” feelings that I am having now, could that be from this so called aneurysm or something else? If it is from the aneurysm, why?

Outcomes?

What questions should I ask the Surgeon when I am there?

Help?

Any information will be helpful at this point.

Thank you everyone!

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You are experiencing much anxiety and fear right now... and that is completely normal. I, like most others on here, understand.

I had a rupture on Dec. 5, 2010... right AChA which was coiled endovascularly. I had a ventric inserted the day I arrived via Life Flight in the CCU and they shaved a small portion of my hair for that procedure. By the grace of the God of my understanding I lived when the odds were heftily stacked against me. At my 6 month angiogram on June 3 I was told the aneurysm has returned, and now I am scheduled to undergo a craniotomy and clipping July 28. I am terrified. The neuro will try to keep the incision behind my hairline, but at this point I dn't really care. During my stay at MCV in December, in order to get all of my hair the same length I talked one of my wonderful male nurses into shaving my head with a razor. I have kept my hair clipped close ever since. And before I go in for surgery in July my gf will take it all off again... it's the only control I have here...lol!

I think that whether or not the "blob" you saw is REALLY an aneurysm is kinda irrelevant right now as the nurse let a very scarey cat out of the bag and you have to live with the thought of possibly having an aneurysm until you get the final word from your neuro next week. The fear is overwhelming for me at times, and I never know when the urge to cry is going to hit me. I went shopping yesterday... did A LOT of walking... ended up in Belk and when I should have had my usual "shoppers high" at the prospect of getting some new shorts and a few shirts I suddenly wanted to cry... in the middle of the Ralph Lauren section while holding all of my loot! WTF???? Fear is an honest emotion and normal response to the news you have been given. Tears are a natural consequence of the fear and sadness. I have given myself permission to be afraid and to cry... no matter where I am. The only exception to this is with my 9 year old son.

Your feelings of being “dizzy”, “tired” and “confused" are all typical symptoms of an unruptured aneaurysm that are caused by the pressure the annie puts on the surrounding area. If you have an aneurysm, and it is indeed 4.2 mm then it is considered relatively small and most of these do not exhibit any symptoms. There isn't really any way of knowing exactly when an aneurysm will bleed, but there are risk factors that increase the likelihood of rupture. If you smoke... STOP! Perhaps the greatest risk factor is hypertension, smoking significantly raises blood pressure. I smoked heavily for about 30 years and I, as well as my neuro, place most of the responsibility for my annie on those damn Marlboro reds. BTW... I haven't smoked since Dec. 5... the day of my rupture.

I hope this information has helped some. I think the most important thing I can do right now is take care of me one day at a time. Each day I ask myself what am I going to do for me. I have to engage in self-care or I will fall apart and cease to function. For my own health and sanity I cannot allow the fear to control me, and dictate to me what the quality of my life will be. Since finding out about the return of my annie I am a little more gentle with me, I spend more time with those I love and who love me. I've bought 4 new books and hopefully will have them all read before July 28. I am taking my son, gf, and mom to Busch Gardens tomorrow, a beach trip with the gf is set for next week, and another with son, mom, and bro is set for July 17. I'm taking my son to the NC Museum of Life and Science at the end of this week, and the Richmond battlefields after the first beach trip. One evening last week I read my son to sleep, and that is one of the most precious moments I have ever experienced with him. The most important thing is that I stopped for a moment and noticed that.

I will remember you when I talk to my Higher Power... and if there is anything that I can possibly do please do not hesitate to ask me.

Daphne

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my lord…what an awful beginning to an already nerve racking situation…im sure things will be much better once u get to see a dr w/competent staff…ask your dr for something that will help taper down the anxiety,it has to be hell playing the waiting game…my story is both good n bad…i was 41 n out having drinks w/my brother n his wife…i remember i had just showed up and ordered a cold beer…also lit a cigarette…told jenny i would be right back,had to visit the ladies room…we were sitting on the patio so i entered the pub n making my way felt the whole room tilt to the right, causing me to bump into a table …i was like whoa…ive only had a couple of sips off my beer…and continued on my way to the ladies room…i needed to sit down n regain my stability…welp…that didnt happen…i felt the clap of thunder go off in my head like no pain i had ever felt…mind u i have given birth twice…but this was worse…my 5mm anny had ruptured…i passed smooth out…a friend of mine came in and began yelling my name…it revived me but the pain was excrutiating n i was vomiting alot…im sorry to be so blundt…but i would rather u know than wonder wats happening …God willing u will get urs coiled b4 any of that happens@…i was rushed to baylor of dallas …only 4 blks away…treated by kenneth layton intervention radiologist and nuerosurgeon dr coimbra…theres a big difference if they can treat it prior to rupture…mental…physical deficits are sure to be little to none…i am back to 100% other than a little short term memory loss…other than that life is fabulous…keep ur faith high and your prayers abundant…and see a dr soon as possible…i will keep u in my prayers for a quick resolve…i know it will drive u batty playing the waiting game…these drs dont understand wat it does to us…prayers n love coming ur way…your gonna be fine

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Wow, I just want to say THANK YOU to all 3 of you! This made me feel loads better! Today I was alone most of the day while at work and the thoughts just continued to become overwhelming. Once home, my husband and I went to Wal-mart to get out of the house and he made me laugh as he always does and then I come home to read what you wrote and I already feel better :-)

Becky, when you said "Fortunantly, it is only a week away" this changed my perspective. This whole time I've been thinking "I have to wait a whole week!" but now thinking about it the way you put it...doesn't seem that bad :-)

I'll be sure to update again once I have answers and if this DR can, I will be asking for a referral to UVA.

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Hi Sarah - I just have time for a quick reply....I have 3 kids and it's bedtime...but I was also shocked with the diagnosis of unruptured aneurysms - this was 8 mos ago, and I thought I was dying (an on-call doc called at 9am on a saturday and told me to get to the ER asap - some mis-management w my experience, too- and also in the mental health field!). Long story short - I have 3 unruptured aneurysms. The largest was very successfully coiled (not thru the skull, up the femoral artery in the leg) 7 mos ago, I have no symptoms from the 2 small ones (both around 2mm) that they are watching, and the one that was coiled is completely healed and no longer considered an aneurysm. I was scared to death - beyond anything I could ever imagine - especially because, like you, I'm a mother. But so far, so good. You're in the phase of information gathering - which is a hard phase - but you will get to the next phase and get more clarification and a treatment plan, if needed. I'm sorry it's been a bad start to awful news - I remember all too well the kind of state I was instantly thrown into with that one word - aneurysm.

Best to you.

Jaycie

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Hi Sara and welcome to our family. I know you're scared, we all were when first diagnosed. I had a 26day migraine and about half way through at my regular osteopath appointment, she noticed my right eye drooping/nearly closed and my speech slurred. I assumed it was from the headache but she was thinking brain tumor and ordered a brain scan. I was called by my doc in the waiting room waiting for release to go home. He said get to the hospital right away, we're trying to avoid a rupture and possible death because I had an aneurysm! I had to drive myself to the hospital where my blood pressure was 225/110. They gave me some meds for bp and sent me home saying I was fine, nothing to worry about. HUH? Next morning my doc was so angry they let me go home without a lumbar puncture as he still assumed I had a bleed. He sent me right back to another neurosurgeon who ordered a CTA which my insurance took days to approve. That test showed 2 aneurysm's. He didn't like the conflicting results so wanted an angiogram which I had a week or so later. It confirmed a 3mm MCA aneurysm. He said no treatment until it reaches at least 7mm and sent me home after a very brief consult. Said come back in 6 mos for a CTA and if it's grown, they will consider treating it.

Needless to say I understand where you're at right now. It gets better. It's better to know about it than not I guess although I have to admit it bothers me. I don't let it interfere with my life. I'll worry about it if they find it's grown next month. Even then, treating before a rupture is always preferable. But, like you said, they rupture even at 3mm so you never know...

I wish you peace and good health.

Mitch

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you most likely feel that from the aneurysm, you can ask the surgeon how big and where, and what is best clipping or coiling. Sometimes the dr dont touch it until its big enough, a rupture is hard i had one. I have balnce issues and memory problems but im alive :) . Everybody has a different outcome, dont give up and fight the good fight. They will shave as much is needed depending where it is, i had a shave straight across my forehead :) but my hair hides the scar. The dizzy is from the aneurysm because its feeding off arteries and vessels that connect and cause problems.If they said aneurysm well they saw it and need to take care of it. It probably looks like a blob cause its to small or that blob is your brain.they say coiling heals faster but that aint our choice. mine was clipped in 2009 after a rupture.

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Hi Sarah, I also have an anni in same place but on the right side. Mine has grown from a 2mm to a 5mm. Dr. said he would fix if I want him to or watch and have it checked in six months. Most drs. won't fix until 7mm. For now I am going to wait. I also get dizzy, have headaches, and sometimes pain behind eye. I too am scared but try not to think about it. You have gotten alot of good advise. Praying for you.

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Hi, a lot of us on this site can certainly sympathize with you because of having been there ourselves. I had an unruptured annie on my right middle cerebral artery which was clipped in Feb.

Going into some of your story and questions, I can also relate to your anguish and frustration with regards to how you found out about your aneurysm. My family Dr didn't even tell me; it was the practical nurse and she read it for the first time out loud to me from a computer screen. It was as though she had just told me that I had an infected hang nail at best. I had many ups and downs with the medical world until I got into the caring and skilled hands of my neurosurgeon who is also 3 hours away but prior to that, it was one of the horrible experiences I had ever encountered in the medical field. I also found out by MYSELF from reading one of my many scan reports that had to be sent away that I also had a pituitary tumor. NOONE had told me about this. So yes, punched in the face?? You wanna believe I felt the very same way as you.

I realize it is “small” yes I’ve been told that over and over again but the small ones can still “rupture” right? Yes it could. There are so many factors involved. Risk factors, location, shape, do you smoke, high blood pressure, and family history. These all come in to account and only the professionals can give you an honest and educated answer.

If it were to rupture, giving the location and size, what type of damage can this do? (I know it varies but I would like a general idea). Yes it does vary. This is hard for us to answer.

And I know this question is going to make me sound superficial but if I have to have brain surgery for this, are they going to shave my head? Depends on the surgeon. Speaking only for myself, I had very long hair and I knew that there was no way that I could take care of it following my clipping. The thoughts of dried blood etc in my hair for who knows how long before I would feel up to washing it and touching my head made it easy for me to say, take it off. It's hair, it grows back. This wasn't a concern to me at all, just getting well was my main priority. We're all different though. If you have to have a craniotomy, ask your surgeon where the incision will be and does he just take off a strip.

The “dizzy”, “tired” and “confused” feelings that I am having now, could that be from this so called aneurysm or something else? If it is from the aneurysm, why? Most surgeons will tell you, there are no symptoms of aneurysms. Unless they are very big and pressing against the structure of the brain and on nerves etc. I find it very ironic that dizziness, off balance and persistent headaches lead me to having my first scan when the aneurysm was found. Since my surgery, my headaches are different. I felt everything you are feeling prior to surgery as well. I'm fatigued, confused, memory problems and other things now but that is due to recovering from my surgery.

Outcomes? Providing you're a reasonably healthy young individual and there are no complications with the surgery, the outcomes tend to be very good and positive.

What questions should I ask the Surgeon when I am there?

Number of brain aneurysm surgeries they have performed?

Success rate?

Predicted length of actual surgery?

Details of surgical procedure (ie., embolization, craniotomy, metal clips)?

Recovery time expectations?

Anticipated length of hospital stay?

If craniotomy; staples or absorbable stitches?

Type of incision ( straight, zig-zag)?

Location of incision?

Talk about possible blood transfusion

Will they shave the head?

Recommendations for screening of family members for brain aneurysm?

Date of surgical procedure?

Potential complications?

I'm answering from a clipping point of view. I'm not sure about the coiling procedure and what questions you may want to ask.

I hope I've been helpful and if you want to talk email me, I don't mind at all. :-)

Keep us posted okay?

Tina

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I can't even bring myself to think what I will do to this nurse and the doctor who seems to be toying with your emotions like that. Now, if the nurse made mistake of telling you that you have aneurysm, why won't she quickly call back when she realized the doctor was uncertain. And why will give such information when you are not certain?? Since this all so wonderful doctor is not sure of the diagnosis, I think another scan maybe needed. I think if you can get a neurologist quicker than the surgeon, that will be a good idea.

I know there are people on this site who are living with unraptured aneurysm but it needs to be monitored. I had ruptured aneurysm in 2008. I thought aneurysm happens to just the elderly. To make a long story short, one hospital declared me hopeless and waiting for me pass but when my family transferred me to another hospital, well, the doctor decided to take a chance. What a chance it was! I had to learn how to walk, my balance is not all that great and my short term memory is improving. Oh yes, they will shave the spot for the surgery, if you need it, but the hair will grow back. It seems like your aneurysm location is the same as mine.

I know it's easier said than done but try not to stress too much. The good thing is, this site is always there and we will do our best to boost you up. Stay strong. Let's hope there will be good news from the doctor you will be visiting soon.

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WOW! Thank you ! I’m going to copy and paste your questions and take them with me!

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Thank you :slight_smile: I actually ended up receiving a telephone call from the ENT doctor and the Nurse Coordinator for the medical company. I’ve yet to call either one of them back because I just don’t feel like dealing with that stress now. Right now I’m focused on the appointment next Wednesday. Once I get though that, I might call them back. I do know that I will not be returning to that ENT EVER again.

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Here is a picture of my brain (HA!) and Aneurysm. I just thought I’d share it…because I’m still amazed by it and at times forget it is even real until I look at the picture.
435-brain.jpg (106 KB)

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Sarah, please keep us posted as you can. I will keep you in my prayers and thoughts...

When I begged my doctor to prescribe MRI becuase i have bad headache and felt numb at times. She kept on saying I'm fine. Eventually, I persuaded the doctor to order MRI. When I went to the MRI, I asked that a copy of the results be sent to my home. Then, I received the result, which said that I have an aneurysm and MRA is needed to confirm. That is about 15 days after the test, bacause as a procedure, the MRI center sent out result to the doctor first. The doctor ignored that result, and was out on vacation.

I pushed them to get the MRA ordered, and again, the doctor didn't even review the results untill she met with me in her office. The level of care and expertise is very disappointing.

So i started to do researh (that's how i found this forum), and look for doctors who specialize in this, and look up their successful cases. That's when I started to restore that inner peace and knew that everything is going to be ok.

Keep positive and God bless you!