Really need someone to talk to!

I am scheduled to have the clipping surgery on dec 16th and I am hoping I am making the best decision!! My anneurysm is 3 mm on the opthamalic artery close to where it splits from the carotid artery. I have heard all these horror stories of people losing their vision and I am scared!! What if I lose my vision then end up developing one behind the right eye and have to have that one treated and I am totally blind!! I am a very visual person, I love interior design…color, pattern, texture…it is what brings me joy!! When people say they lose their vision what exactly does that mean??? Can’t see at all, blurry, blind spots??? I am trying to be positive and strong but I am just a terrified little girl!!! I want to be here for my 4 year old daughter and husband but what if I am making the wrong decision!!! My docs say I will feel great a couple weeks after surgery… From what I see on here that is not the case!!! If anyone can ease my mind or has any advice about recovery please let me know!!! I also am a very active person… As my husband says I can’t sit still … I am afraid this surgery will totally change me and I will never return to who I was!!! As I am sobbing right now I am asking for anyone to help get me through this!!! My family doesn’t get it… They say I will be fine… No one wants to talk about the risks!!! I just need advice, wisdom and guidance right now… Please help!!!

Hello dear My name is Tammy and I am 42. I had an opthamalic aneurysm last year. Same location and I had a stent and coiling done. I felt the same way you do,I had all the same fears!!! I have another 4mm aneurysm which wass found last Wednesday in the same region. I dont know the outcome yet for that one I have an appointment Friday. I want you to know that you are not alone. I will be praying for you. The only after effects I have had Is I had a blood clot go loose and it settled in my right upper corner of my right eye. It has left me with a slight blind spot. I have been told that it is not ea regular occurrence and that it may even dissolve in time. All other eye functions are the same. I have wonderful eyesight and I am able to look at my three beautiful children every day as I am sure you will look at your husband and daughter everyday for always. Dont be afraid to cry and let yourself lean on your family and friends for support. If they are not enough join a local support group and dont let anyone make you feel bad for being afraid it is only natural!! I am praing for you. Keep me posted.

Hi Jennifer. Aneurysims are all different but I can share my experience. Mine was 5-6mm and located near the Circle of Willis. I was only in the hosfital for 3 days and back at work within 3 weeks. Being scared is normal. Even for tough guys! I have had more than my share of assorted surgeries but the idea of someone poking around inside your head is pretty wierd. I’m sure your family is being positive in an effort to be supportive and to not scare you. I was so worried about my wife if anything hapened to me I didn’t have time to worry about me. I guess you have to look at the risk of treatment versus the risk of doing nothing. In some ways I have been changed forever. The fact that I am still alive makes it impossible to look at anything the same. Talk with your husband about how you really feel and share all you want here. People do listen and they do care.

HI i am 41 and my name is nancy i had clipping done on nov 15 2010. It is okay to be scared i was to. My loved ones hated to talk about it as well .it was like if they didnt talk about it it wasnt real.I needed to talk about to anyone that would listen.I am still recoverying everyday some days are beter than others but one thing remains the same i am determed to get back my footing and enjoy my life . I didnt lose vision or anything.the only thing i battle is sleep. it seems i always want to sleep the docs says this is normal and will in time go away. i do have head pain but meds help with that. if you want to ask anything please feel free to contact me anytime .i know you are scared. i will pray for a speedy recovery for you and be hear if you need to talk. stay positive i am still the same person i was before and you will be to.
hugs nancy

Thank you so much!!! I can’t believe you already have another one!!!
I appreciate your kindness and willingness to talk to me!!! Mine is only 3mm and I can watch it but I will have to take care of it sooner or later and it makes me too nervous to watch!! Did you have the blood clot because of the coil and stent?? I have heard you need to be on blood thinners if you get that done for that exact reason!! Please let me know what your doctor says!! I will be praying for you also!! Big hug!!!

Thank you so much for your positive story!!! It gives me hope that I can bounce back!! The weird thing is before I found it, I had had very bad anxiety that something was wrong with me and by the grace of God they found it!!! I always was afraid of cancer because my little sister died of a brain tumor when she was 7, I never dreamed of this!!! My biggest fear is leaving my daughter, she would be devastated without me!!! My docs said not to worry that I will be fine and that it is in a good spot but it still doesn’t take the fear away!!! How often do you get checked?? Do you have a family history?? I do not… Thanks again!! I will keep you posted… Thanks for caring!!

Hi Nancy, where was yours at?? It has only been a couple weeks so you are doing great!!! I am determined too that is why I want this behind me!!! How did the anesthesia effect you? Where you in a lot of pain? Were you able to walk, talk etc while you were in recovery at the hospital? What was ICU like? Do you know how long your surgery took? Sorry for all the questions… I could go on forever!!! Do you think the being tired is due to the anesthesia or the pain meds or just the healing process? Can’t wait to talk you soon!!! I will pray for you too that you continue gaining strength!!!

Hi Jenn,
Your gonna be ok. Just breath! I am 2 weeks post op, had a complication and it was fixed. I think I told you this already but I have severe anxiety attacks and I did not have one in the hospital. You are young. You will pull through. My grandma always use to tell me I am my worst enemy. And she is right. I think the anticipation with anything in life is actual worse,. Believe me girl, If I can do this you can. Dr. Charbel is great and he even gave me a great haircut. I thought my whole head was gonna be shaved. Since we have the same aneurysm I would think he would cut your hair the same. He took just a tad off the hairline. my hubby even said the same thing. He thought I would be be coming out with my head wrapped screaming in pain. It is not like that at all. You will love ICU. They are very good nurses and they will be checking on you a lot. I will be honest. You will not get a lot of sleep in there but you will be feeling good. The first 24 hours they are giving you neuro checks on the hour and assessing your pain. They gave me pain meds every 2 hours. And I had not a lot of pain. If you want to see my hair I will send you the pic. I even made friends with a nurse that lives here in Highland. My family is so shocked on how I took everything. Hence, the anxiety. I am just a anxious person. And I was ok. You will be ok. Take a deep breath. If Dr. Charbel didn’t feel confident he wouldnt do it. If you need to talk I am here. I am 2 weeks post op and getting stronger everyday!

Thank you so much!!! You are a big inspiration to me!!! I have suffered with anxiety pretty much my whole life too!!! I do have so many questions!!! How was the angiogram??? Did they ever tell you how big yours was exactly?? And where exactly it was at?? I know you said paraopthamalic but was it close to the carotid artery where it split into the opthalmic??? Did they say why they couldn’t coil it?? Did the anesthesia make you sick or anything??? Did they tell you to be worried about blood clots or anything??? Did he say your vision was at risk?? You have no vision problems… That is awesome!!! Do you get headaches or anything??? Did he say how often you were going to have follow scans?? Thanks so much for being there for me!!! When I get this behind me I am going to start an annual fundraiser so I want you to keep any pictures etc and if you would be willing to share your story at the event I would love for you to help!!! I feel I need to help others and gain funding for more research because this is a terrible disease!!! Can’t wait to hear from you!!

Hi Jennifer - Just wanted to let you know that you are being thought of and supported. I had a different situation with my large aneurysm ruptured and leaked over a period of a week this past February and I had emergency surgery and coiling. I had another coiling a month later to add more coils due to it’s size that they couldn’t do all at the first time, and have been on a wait and see status by choice for the remaining 2cm neck opening of remant that was left. I had a MRI a few weeks ago and I go back in another six months. I am trying to put off an additional coiling and stent placement because I just don’t want the surgery and my docs are supportive of my wait and see approach. So far no more growth and no others found!!!

Every situation is different and I understand about your fear that if something happens and another grows in another location then what…but you can’t worry about the possibility of what may happen that is not even in existance today. You may live to be 100 years old but you are not worrying about that, live your life for today and enjoy every moment of it!

You mentioned that it was not genetic, mine is not either. Not all are genetic. Also, I have not had any more other than the one I suffered initially and was very fortunate to make it to treatment. You also talk about being very active - I am able to be active, I just can’t do any haevy lifting or get involved in any serious physical situations, all other living is available and I was fortunate enough that even with two surgeries and having someone poking around in my brain like that, I only have cognitive issues and some occasional headaches to deal with. More mental and emotional issues, than physical impariments - so maybe I can let you see that there is a positive side to it all too.

Without all that I have experienced, the good and the bad, I would not have recognized the importance of taking care of myself - and that is just as important with you. You will know what is the right choice for you and what you need to do for your situation. Know that you are cared for and by caring for yourself as well you will be a better Mommy, wife, friend, daughter, and person.

I’ll keep you in my thoughts and prayers and I am more than happy to share any information that may be helpful to you. Take care Jennifer~

Jennifer,
Please have faith in yourself and the fact that you will be ok. Even with the swelling and the vision problems I think that I am doing great!
I get up in the morning and unless I take one 20 minute nap then I am awake the whole day. I get tired then I sit and play on my computer for awhile. Other then that I have to say recovery is much better then I assumed it would be.
Every person like every aneurysm is different. My doctor says what might be for someone else might not have anything thing to do with me.
I am sure that I am going to be just fine in the end but I also have to remind myself that I am after all in recovery.
Talking yourself into something can be the hardest thing to do at times.
I also had to be on blood thinners for several days after but that stoped the day I came home.
I have been given strong pain meds which if I take them once a day is a lot. I do not have pain. You can go through this and have no effects at all. Think about that and keep the hope for it. If you do then you just go through it with all of us.

All our love
Kimberley

How often do you get checked?? My surgery was in 2008 and my next CT is in 2013 so every 5 years. In 20013 we see if it has gotten bigger and if so decide what to do.

Do you have a family history? Not for aneurysims but I do for neurofibromatosis. Big word you’ll have to look it up. It can cause “vascular abnormalities” among other things.

I always was afraid of cancer because my little sister died of a brain tumor when she was 7. The above mentioned disease causes tumors to form. My older sister had one develop in her liver which became malignant and she died when she was 20. I was 17. I can identify with that fear.

Mine was in a tough spot. My wife asked the doctor if he would do the surgery himself or if a resident would do it. He said “A resident might help if it was Aneurysm 101but this is Aneurysm 401.”

Hang tough and keep us posted. A lot of people are praying for you.

Hi Jenn,
I think I remember them telling me mine was close to 5mm and the mra showed 3. We have the same exact anuerysm. They explained it too me exactly how you just explained it. To many words for me. :wink: They could not coil mine because they thought it was too dangerous and it would stop blood flow to my eye. So they explained to my hubby they used some kind of fibrin wrapping. It was too risky for mine to be coiled or clipped. I had 2 angiograms. And they were not bad at all. You will feel a little pin prick where they need to go into the groin and I swear after that you do not feel a thing. The headaches where actually not that bad either. They give you pain meds for that. I have been headache free since I left the hospital. I did feel a little dull headache ( Where my staples are) last night and talked to Dr. Charbels NP last night and she told me she wanted me off the narcotics and to take some ibuprofen. She also thought it was the staples pulling. I see Dr. Charbels NP Thursday to get my staples off my noggin. I would absolutely love to have annual fund raisers each year. I wanted to start a walk in the summer time for this disease. I work at community so I am sure that would help. I am good friends with the nuerologists there. Wink.
Really though Jenn, You are gonna get through this. Tell them you have anxiety in the hospital. Tell the surgeouns, nurses, anyone. It made me feel more comfortable. I take paxil for the anxiety. I made sure they knew that and it was given to me at the correct time every day or my husband made sure it was given to me. Be an advocate for yourself and make sure your husband knows what you can and can’t take. I made a list for them. And I had three allergy wrist bands on. I am also working on a list of what to take to the hospital for you. Def, a robe, tank tops, toothbrush, your own shampoo, body soap, goody bag of snacks. I just couldn’t stomach the hospital food. I didn’t feel like eating much though. Hubby would go up the street and get me hot soup. Oh, hubby got me these cherry and lemon drops from the gift shop that helped with the dry mouth from anethesia. I know I am rambling. Just shooting off what I can think of this email. Hang in there Jenn. Like I told you, sometimes we are our own worst enemy sometimes. Trust the docs and nursing crew. This is another day at the office for them. But so foreign to us. You can do this. Don’t make yourself sick over this. It is not worth it.

Hi Jennifer,
Just learning this stuff myself. Surprise drs gave you a decision. We did coiling on a 3mm annie on the left side of behind my eye (carotid.) on 11/16. It bled out a little. I was not given a decision to do anything but coiling. I wonder if you should ask about that? They go through the groin in instead of the head and the recovery time is alot less. I learned that the nero surgeon and endo-nero dr don’t always see eye to eye on things and maybe try to grab patient, and or recommend each other sometimes. I got 2 totally different opinions, nero surgeon said not to worry it in your neck and you will only bled out of your eye and not die. The endo said it was behind my eye and it bled and we need to surgery asap. So you should look for 2nd opionions. My prayers are with you.

Jennifer,

I had a 4mm aneurysm on my right opthalmic artery clipped 9/18/10. It was a nine hour surgery. I did not lose my sight at all, in fact my eyesight in that eye has actually improved. I could not have mine coiled because the neck of the aneurysm was too large. Recovery does take time. You will be very tired. I have no lasting side effects other than some tingling and numbness on my scalp.
I am going in on Monday December 6th for an MRA to check things. Wish me luck and I wish you luck! You will come out of this fine. Have faith!

~Wendy

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Wow!!! You do understand where I am coming from!!! I am so sorry you have lost two siblings I can’t even imagine, your poor parents… I have been tested for polycystic kidney disease and it was negative but not the disease you mentioned. How do you get tested for that?? I appreciate your time, prayers and friendship!!

Hi Kim, you have been a great friend through all of this and I greatly appreciate it!!! After this is all over with I wish we could all get together for a big party so I could give each and everyone of you a big hug!!! I am glad you are talking it slow and continue to make progress… I will keep you posted and you do the same!!!

So you aren’t clipped? I have never heard of the fibrin stuff!! It is crazy because all the docs I have seen including dr charbel said mine is in an easy spot and it sounds like that wasn’t the case for you yet they are in the sane place??? Also why did they rush you into surgery, all if them have told me no rush but I need to get it taken care of because I am so young??

I am so glad you are making me a list!!! Thank you so much!! I am also very excited that you are willing to help with an event!! My aunt and a few friends of mine work at community too…that is where all my docs are too!!

I don’t take anything for my anxiety but I probably should :)!! I am most worried about the anesthetia!! How did it effect you??? I am trying to take one day at a time!! How often will you get scanned now?? Sorry for all the questions!!!

Thank you so much!!! I am so glad to hear you are ok thus far!! Your kind words are very helpful and comforting!!! Throughout all this I have realized a lot, and for that I am thankful!! I will keep you postedband please do the same and let me know when you get any follow ups!! God Bless!!!

Mine is unable to be coiled!! I have actually got 4 opinions so far!! Thanks for your advice and for sharing your story!! I appreciate any and all advice!!! Hope you are doing well since your procedure and thank you for help… I appreciate it so much!!!