Just diagnosed and very scared

Hi, I am so happy to find individuals here to help me. I was just diagnosed with a 3-5 mm brain aneurysum on the right paraopthlamic artery , behind the right eye. I have suffered headaches on the left side though. My Nuero Doc says the headaches have nothing to do with the annie. I constantly have insomnia also. This newly diagnoses has just sent me up a wall. I suffer from anxiety disorder and I think it is at a 10+ right now. I have strong family history on my mothers side. I have lost 3 family members to ruptered annies. My nuero doc seems to think it is not a big deal and we should watch and wait. I was not happy with that answer. The uncertainty of this bubble in my head is making me quite anxious. So he is sending me to a endovascular surgeon at the university Illinois Chicago. I go see him friday. I guess my questions are will the Doctor remove it? Is it too small to remove? Is it in a dangerous place. I really want this thing gone because of my family history and it is behind my right eye. Too make things worse I work in a neuro unit in a hospital. Talk about seeing it all. If anyone can give me some advice or just share your story that would be great.Thanks a million.

Hi Meleah and welcome to this forum. I’m sure that you will find the support you’re looking for. Unfortunately, I can’t answer any of your questions but when you see you surgeon he or she will be better equipped to answer them. I can understand your fear and anxiety, take comfort in knowing that you don’t have a monopoly on that one! Receiving this kind of news is tough and hard to get your head wrapped around but in your situation and the history, it would certainly heighten your reaction and emotions. Just as you, I’m also trying to endure the waiting game. My annie is 8mm and I’ll be seeing my neurosurgeon Nov. 18th to see what they intend on doing with me. I find my anxiety is becoming worse the closer my appointment gets. I don’t want to hear anything that the surgeon may have to say. I just want this whole thing to go away.
Was your aneurysm found incidentally while looking for something else or did they specifically go looking for the possibilities of you having one knowing your history? Tina

I have a feel for what you are going through. Actually many people on the sight know what you are going through. I believe there are two options. You can “watch and wait” or treatment, either clipping or coiling. If I can make a suggestion. You are at a 10+ so I think the best thing would be to take a piece of paper and write down all your questions so you don’t forget anything when you are there. If it is possible, take someone with you because what one person misses the other one will hear. Then you can make a list of the pros and cons of waiting or treatment. One thing you must remember to consider is if you will be able to live with this in your head and play the waiting game. Some people are fine with waiting and others can’t live with the fact that there is an aneurysm in their head. Personally I did have one doc who recommended to wait for six months, repeat angiogram and see if there was any more growth because of the risk involved. My aneurysm had grown 30% in six months but apparently it could either continue to grow or taper off in his opinion. For me that was impossible, I watched my dad fall to the ground when he ruptured. My coiling was unsuccessful. So I chose surgery. On the other hand, I know someone who gets scanned every six months and has been doing this for three years. So I guess what I am trying to say is to try to be as prepared as you can on your visit. Try to remain as calm as possible although I know firsthand that that is easier said then done. Friday will be here before you know it. I hope this helps. I wish you the best. Take care.

I have had headaches for the last 6 months or so. My nuero doc says its not related. So he decided to give me an MRA of the head. And there she was sitting behind my right eye. He also did it because of family history. Thanks for your reply. It really means a lot too me.

Thanks Donna! Did you have your surgery already. I think this is something that I can not wait on. I work in a nuero unit and see it all and I think that is what freaks me out the most. If you have had your surgery, can you tell me a little about it and what to expect. Thanks again for your support.

Hi Meleah. My name is Thom. I had clipping surgery 2 years ago off a 5mm aneurysm near the circle of Willis. It was enruptured and I came through fine. There is no magic size number to operate or not. There are lots of factors involved. Also there are a number of ways to treat. Coiling is less invasive than clipping. That was not an option for me. Again that’s something your doctor can discuss with you. I wish you the best. I know you will be fine.

Hi Thom. Nice to meet you. How long did it take you to recover? I don’t think it is a option for me to wait. I really want this over with. I work in an neuro ICU and I think with just what I see on a daily basis I don’t I am willing to risk it. Especially, the fact that I have a family history of this. And I think having an anxiety disorder helps too. I am so glad that you made it through your surgery. Thanks for your input! It is really appreciated.

Hi… I have a 3mm one in the same spot but behind my left eye… I am in the same boat!!! I have a four year old daughter and a husband that would be devastated if something happened to me… I go back Monday to talk to 2 neurosurgeons to try to come up with what to do… I am terrified but I am here for you if you need someone to talk to!!

I think we should start our own terrified as heck group!! If anyone is interested we’ll go to the chat room to scream, holler do whatever we need to. :slight_smile:

Thanks Jim for putting things in perspective for me. It really did help. :wink:

Dear Meleah: My partner had a ruptured aneurysm behind her left eye in the anterior communicating artery. 27 months ago, I rushed Karen myself to the hospital. Her chances of survival were not good. With a spectacular Neuro team, Karen spent 5 months in the hospital and sub acute rehab. I am blessed to say, tonight she took her first piano lesson!!! She can walk, talk, dance, laugh, sing, eat and is amazing. Have faith…that is what got me through this journey watching Karen come back to us. Her aneurysm actually ruptured on the operating table. But she made it. We are lucky. You will make it too. Always know there is a great support system here. I am writing my Memoir and hope to publish it in a year…a Caretakers view of watching her partner come back to life. Hugs to you…Susan Davis

Congrats on getting through this. I know deep in my heart I will be ok. Did she have a coil or clipping? This is what I am trying to decided after much research I am leaning towards a clip. I know sounds crazy doesn’t it. I am so happy your partner is doing well and life is grand with you two! ;-0

Hi jennifer. What are your plans and what does the doc say?

Meleah, welcome, and I am so pleased for you that you have been diagnosed early. I pray that you will find confidence in that, and, cherish the time you have to research, get acqauinted with others who have gone thru the process, or are in their waiting zone. Can/does your family talk with you about the symptoms and other issues of your three members you have lost? Do you have more to their history; i.e. which artery(ies) where the aneurysms were located, the size, etc?

For many of us w/ruptures, in my personal opinion, is that we definitely have earlier symptoms that are diagnosed as migraine, depression and whatever else. I was essentially perfectly healthy; then rear-ended and thrown into another vehicle. Sometime after that my headaches began; I did not even own aspirin at that time. Four months later, I was hit broadside on my driver side (I had not 1% of contribution to either MVA) and, I was hysterical. The sheriff arrived, took one look at me and told me I was not injured and to pull myself together… The next morning, a friend insisted she take me to PCP who put me on 10-14 days of xanax to sleep and referred me to a psychiatrist…even when my records noted the prior MVA, no testing was done. I saw the psych 3 times and he did not think I needed to continue; because of the MVA, I have his records. The new symptom was feeling dizzy/off balance getting off the treadmill…Five years later, I had 3 emergencies over 29 days…then treatment…Friend, who took me to PCP after the MVA told me I could not make complete sentences and a main reason for insisting she take me to an md; apparently the PCP did not notice incomplete sentences.



I understand from some others, that smaller aneurysms are now being treated. Please plan to take a long list of questions with you this Friday and have family/friend with you. Ask about coil vs clip vs the glue; I keep imagining the glue will be used in smaller aneurysms and not have to wait for growth in size.

I pray that you will look at the positive side of an early diagnosis, and, that you have family/friend to sit thru this Friday appointment with you.

Please tell us how your diagnosis came about… you are blessed to have had an early diagnosis.

Pat

Pat after reading your post I said to myself, you know she is right, Jim is right, so many people are right. I can’t speak for the original poster but seeing as I’m in the same boat right now, not knowing what is going to happen plus living with this thing every day untreated, I find it diffiuclt to remain focused on the positive side that the aneurysm was found before rupture. Don’t get me wrong, I’m very glad , VERY glad that it was found so that it can be treated but remaining positive isn’t easy to do. (Forgive me Meleah for talking about my situation in your thread but It’s possible that you feel this way too)…sometimes and please, noone take offence to what I’m about to say because it is not intended. Sometimes, I feel that for the people who have been just thrown this curve ball and they’re trying to get their head wrapped around it all, the first order of business is dealing with their fears and uncertainties. As you know and so many others on this site know because you’ve been there. The problem I see on this board is the people who have already been there and survived have come a long way and those of us who are just beginning our journey have such a long way to go. I’ve found that sometimes, our fears, anxiety, state of confusion and all that comes with this diagnosis is being kind of minimized by the veterans if you will. I know that noone means do that, I know this in my heart but I know that I come away feeling misunderstood sometimes because I NEED to talk about my fears, I need someone, anyone, to understand how I’m feeling and talk to me about it. Not just say, be glad they found it, or you’ll be fine and you’ll be in the hospital for 3 days and off you go. No one can really say those things because so much can happen and we’re all individual cases. Meaning that each aneurysm is an individual thing, they aren’t all the same such as our tonsils.
You know what? I don’t even know what I"m trying to say here…well I do but I don’t. I for one, am grateful to have found this site. I also think that we all do a fantastic job at trying to be there for one another when it’s so easy to zero in on our own health problems because typically, that’s what people do. We become self centred in a way and that’s normal but you all try so very hard to be upbeat and positive. I think that’s great, more than great! I just sometimes need someone to not tell me, you;ll be okay, be thankful they found it…sometimes what I need is someone to just let me rant and rant along with me and go along the process with me instead of jumping ahead to telling me when I’ll be back to work, when I’ll be out of hospital or minimizing my fears because it isn’t a rupture. It’s not easy now and it won’t be easy then for me or my family. I haven’t even seen a surgeon yet (next week) so I dont even know if this thing is operable. NO IDEA! I don’t know the brain, trying to research with no luck … where my annie is, is it an easy place to get to? Is it doable?? Will it be really risky? All of this is going on in my head. I also have a fear with being put to sleep because the last time I had surgery, I had a problem coming out of it.
I’m sorry for the length of this post. I don’t know what my problem is right now but I’ve had some very bad days lately. Depression is setting in (on and off) anxiety, I’m scared to death right now the closer my appointment gets. Maybe I just want to be heard, I don’t know. I thought I was doing so well, so my family tells me… with handling this thing. Maybe on the outside it appears that way but on the inside I’m not. Maybe Meleah, Jennifer and other people that have just been diagnosed feel the same way that I do and maybe the veterans went through all of this as well at one point during their journey.
Last thing I want to say is not one poster with the exception of one could even take the time to help with what questions to ask my surgeon. I’m not a dummy, I have my questions; I was just hoping for some ideas that maybe I hadn’t thought of. I’ve since closed and deleted the topic. You’ve been great with telling me how much better off I am due to early detection and when I can expect to be back at work. I"m just not even close to being in that space yet is all.
Thanks for reading and again I apologize. I don’t understand my anger sometimes. Hugs to all of you.
Tina

Hi Meleah! Karen had coiling they had no choice. A friend of ours has had two aneurysms, both caught early and she has had clipping. Yes we are blessed Karen is doing so well. But it is a journey and one that I know will be a lifetime. I still need a caretaker for Karen when I am a school teaching. She cannot be left alone because of the damage the ruptured aneurysm caused.

Go forth and be strong…we are all here to support you.

Big hugs from Karen and Me!!

Tina,
You took the words out of my mouth! Thanks so much for the posting. I know what your going though. I really do. Tomorrow is not coming fast enough to see this doc in Chicago. I know what you what you mean when your family members say " oh, you’ll be alright". Last night my husband took me to work and I just started crying. He looked at me and said “you’ll be alright”! I freaking lost it. I was like Do you have this bubble in your head? I was hysterical. My emotions are just every where. I had a patient last night at work that was crying hysterically and I was like what is wrong. He was told 10 minutes before I walked in that he had to have open heart surgery. I started crying with him and I sat on his bed and hugged him. I told him my deal, and we sat and talked and then started laughing and the end of our conversation. We had good talk therapy about our fears etc! I think we need more of that. I am not sure what I am trying to say in this email either. This is all new to me too. I can’t find too much on a Opthalmic Anueysyms. All I know, is when I saw the Neurogist he showed it too me on the computer said it was 3,4. 5,6mm. I was like ok. Which is it? he said its small and we’ll wait. I was like screw you. I want to see a specialist in Chicago. So he wrote me a referal, to Dr. Fady Chorbal at UIC. One thing that did disturb me a bit is that he didn’t even go over my spinal MRI. I read the report and it says I have a tear at C6. Probably why my back freaking back hurts. I am 38 and I feel like I am falling apart! Now, this email is turning into a major vent.
It was like really not a big deal too him. He said my headaches and dizziness is not related to the anuerysm. Well, what else could it be? I do agree with what Tina said about we do have “pre"symptoms” and I feel like no one is listening. I will tell the Doc in Chicago that tomorrow. Just so confused, scared, angry and I just want this thing gone and out of my life! It is not an option with me it will be gone. I have made that decision before seeing the doc. I think one thing that makes it worse for me, not saying at all that it is not scary for other people, is that I work in this field and I see so much. Probably too much. In this situation sometimes I think ignorance is bliss. Anyhow, I think I will stop this rant for now. I will let you all know what the endovascular surgeon says tomorrow. Please be thinking about me.

I’ve got your back Meleah and you can count on me thinking about you. Please post soon as you have the chance. My hat goes off to you for going to work and coping with all of this. Given what you do, I really can’t imagine how difficult it must be to try and focus on your job right now and be there for others. You must be a very special person. I’m also glad that you are taking control of this and not accepting the watch and wait approach. So much easier said than done for those not affected by it isn’t it?? As I see it, it’s a risk either way. Surgery or live with it every day. Living with this is NOT an option for me so I hope and pray that it can be operated on. It’s crippled me in ways that I never thought was possible before; It’s changed me. For that reason alone, I won’t let it destroy me. Good for you for taking charge Meleah, be strong and stand your ground tomorrow, get your answers, make them listen and don’t leave until you are satisfied. This is your time, so you take it! If they don’t think your symptoms are related, get the answers as to whatelse it could be. Make them step up to the plate and tell you what they intend on doing with you and your symptoms if not related to your aneurysm. I have every intention on stating why couldn’t my symptoms be related? Because it says so in your medical text book on page 247 subsection (g)?? Well, if you flip to page 634 there’s a contradiction. Do you have someone to go with you? I hope that you do. We have a long journey ahead and this is just the first stop. I’m only a week later leaving the same station.

Tina

Thanks Tina. Just got home from work. I appreaciate all your encouragement. My hubby will be going with me tomorrow. I have such a headache right now. But I just wanted to let you know thanks for all the support and I will post an update on my Drs. Appointment tomm.

I just noticed you live in schererville… I live in crown point!! My aneurysm is on the left side opthamalic artery measuring 3 mm… We have a lot in common and I too am scared!! I would love to talk to you if you need someone to talk to!! I am anxious to see what Charbel says… I have seen him but now I am at Northwestern and I go back this Monday!! Please let me know how everything went!!