Not so active here

[Crwstar]

It seems that this is not such an active forum. I see a lot of views but not so many responses. Is there anybody out there? I would love to hear from people who have unruptured aneurysms. Are you symptomatic or not. What have your symptoms been. Previous to a ruptured aneurysm what symptoms were you aware of? How concerned if at all should I be with a small unruptured aneursym that is being watched. I've read that aneurysms as small as 3 mm have been clipped. Any dialogue on this would be appreciated even if you think it won't help.


gotta go :OuttaHere:

crwstar

[freeinhou]

Hey crwstar -

Nope. Not a very active forum.

I recently had 3 aneurysms repaired (in March) - abdominal aortic artery, left and right common illiac arteries. We've been watching them for 4 years now, and just decided to bypass them.

I had an ascending aortic artery aneurysm rupture 4-1/2 years ago. That was exciting - it tore right at the heart. That was an emergency surgery.

Tom

[Crwstar]

Hey Tom,

Sounds like you've been thru a lot. Are you mending well from the surgeries?

Hopefully, things will pick up over time. I could consider it a good thing that there aren't that many people in here :D I'll just hope it means less people with aneurysms.

Happy day - My story is below in another thread.

Crwstar

[sarahin]

Hi,
I have two aneursyms. I had an unruptured PCOM artery clipped in March 2007 and have a 11mm one on the carotid artery that is untreated. The last year has been quite a ride!!!! I had no symptoms.. They were found by accident on a MRI I got after getting atypical symptoms with Bell's Palsey. I would be in no hurry to get yours treated if they are small. Once they are larger I feel it is crazy not to get them clipped or coiled if they are where they would cause a stroke. Even though they might never rupture, a subarachnoid stroke has a high mortality rate. My untreated aneursym is behind my right eye and is positioned where it wouldn't bleed into my brain if it ruptured and cause a stroke. If it ruptures I could easily lose my sight in that eye, but getting it treated is a judgement call. It's in a bad place to treat and even though it is large it causing no problems at the moment. Talk to the best doctors you can find and ask lots of questions.

[Crwstar]

It does sound like you've been on a ride this past year - Thank goodness for accidental findings. Have you faired well with the surgery? what is Bell's Palsy if you don't mind me asking?

I agree with you about leaving the aneurysm. The doctor convinced me right away when he said the only way to fix it was to do a crainiotomy. It's behind my left eye on the ophthalmic artery. The risk of surgery at this point does not outway the risk of rupture. So we are watching it. My biggest concern is all the symptoms I have - Headache for 7 months, nausea, vomiting, exhaustion after minimal activity. Hopefully, I will have some answers next month at my doctors appt.

All the best

[ewizabeth]

Hi there,

My only experience has been that of my late sister Laura's. She had an aneursym back in 1982. She had a very severe headache that got worse when she laid down. After a couple of days, they finally discovered a brain aneurysm that was behind her eyes. They did surgery, but back then it was much more risky and she didn't survive. I've had a lot of MRI's because of MS but they haven't found any in me yet, thank God. I take blood pressure pills because apparently high blood pressure played a part in Laura's illness.

[Crwstar]

I'm sorry to hear about your sister :hug:

Probably one of the hardest life experiences is to loose a sibling. I suppose the silver lining if there can be one is the blessing and compassion you bring to people who ask should siblings be tested. I've seen the question asked over and over again on boards. I'm glad you continue to be clear of them. Did you decide to get tested on your own or was it suggested by a doctor?

All the best-
Crwstar

[ewizabeth]

Hi Crwstar,

I got tested because of my symptoms from the MS. I was having trouble walking, and my first MRI's were done in 2002. The only thing they've ever seen on my brain are some white spots due to the MS.

It was hard losing my sister, her absence affected all of us, but especially her children who were all young at the time.

[sarahin]

Wiz-
Sorry to hear about Laura. I have a lot of autoimmune disease in my family and have Grave's disease myself. Hope you are hanging in there and have found support. ((hugs)).

Crwstar-
Sounds like our untreated aneursyms are near the same spot. Mine is in the sinus cavity, 11mm, right near where the opthalmic artery branches off the carotid artery.
Bell's Palsey will cause your face to suddenly droop on one side. People are often scared they had a stroke. Normally it clears completely up in 4-6 weeks. I still could raise my eyebrow on the affected side. That is unusual, so they ordered the MRA. Have they discussed coiling with you?

[Crwstar]

Wiz, You are right, loosing a family member touches many. Thank you for sharing your experience. I pray continued comfort and ease surrounds you and your family. Since my diagnosis, I have been a bit more isolated than I'd like. I have a wonderful community and am so use to going to church every Sunday and haven't been in a while. My symptoms for some reason have me unable to get out as much so thank you for sharing briefly your story. :)



Sarahin, They have not discussed coiling with me, my neurosurgeon said the only option was clipping.....hmmmm is coiling an option with an aneurysm in this area? I was surprised that he said it so empatically. My MRA report said exactly what yours did but didn't say it was in the sinus cavity.

I have had very slight drooping on the right side of my face but nothing to indicate Bell Palsey...hmm makes me think - the body is an amazing complex thing. Thank you also for responding....I was becoming discouraged with no responses.... :wink:

All the best to you both.

[ewizabeth]

Thanks to both of you. :hug::hug: It has been 26 years so we're all dealing with it pretty well. I know my nieces and nephews still miss their Mom though. I'm just thankful that treatments for aneurysms have advanced so far. And one thing I really concentrate on is controlling my blood pressure. I'll never forget the part that played in my sister's illness.

[sarahin]

Crwstar-
Mine is on the carotid artery right where the opthalmic branches off. I guess yours being off on the other artery must make a difference. I was also told that mine was in a bad spot, but coiling was the only option. My neurosurgeon prefers clipping because it's a more "permenent " solution, but said the area is too hard to get to from the "outside" without causing major damage. How large is your aneursym and how long have you had symptoms? My neurosurgeon seemed to think I may develop symptoms at any time. It's funny that you have drooping. They did the MRA because of mine and then found the aneursym, but say it's unrelated. I ended up having surgery on my eyelid on the affected side because it wouldn't close and I was told that was unrelated too. :confused: Yes, a craniotomy isn't fun. The surgery wasn't horrible, but recovery is slow. I also had complications and ended up with verbal learning deficit.

Wiz-
It smart you pay attention to your blood pressure with the family history. I fortunately don't have high blood pressure, thank goodness! I'm not about to take up weight lifting though. God bless. :)

[Crwstar]

:BeamUp: my post went somewhere, i think I was on too long before hitting post.

Ok, here we go....:D

My aneurysm is 2.3 to 3 mm, small or a nub with a wide neck - I've done a lot of research on small unruptured aneurysms and became concerned because I started reading about some that have actually ruptured being that small and I seem to be on the cusp of rising blood pressure. I've had a headache for 7 months now but before that I would have what I called episodes of month long vertigo, nausea, dizziness. A while back I would wake up in the middle of the night with my neck stiff as a board and I never thought anything of it until now.:eek: I asked my doctor about it and she said I was sleeping funny but it was pretty extreme pain. When the headaches began, I was having bizarre fainting spells and bad short term memory - right now I have episodes of this but things are complicated because I was also diagnosed with a pituitary tumor in Feb of this year. The aneurysm was diagnosed in April. The tumor is 5 mm with some cysts that measure 2.5 mm. And I have one other undiagnosed thing on the right side of my head which is where the tumor is and where my eye droops. The drooping in the beginning only came at night when the headache was worse. A better description would be to say my eye lid is lazy...is that the same thing? One of the biggest things is the thunder clap or popping that sometime occurs and I feel altered afterwards and I have these deja vu episodes and my comprehension has over the years gotten worse. The symptom that's the strangest to me is how exhausted I become from simple activities. So far all my doctors have said that there's no connection between my headaches and any of the diagnosis but I spoke with and got the opinion of a doc on line and he suggested that dismissing these things completely may not be the best thing. I am going in to see a eye doctor next month and hopefully they can tell me why my vision has gotten blurrier and why there feels like there's a lot more pressure behind it. Boy aren't I chatty :D

hmmm, I am sorry to hear of the complications. What are you doing to be with this? I ask because my biggest fear I think has been something being wrong with my brain and here it is. I've had to really come to terms with it all and its still early in my process.

Unfortunately, I can't remember the rest of what I wrote - I think it was pretty witty though....we'll never know - but that's why I stopped typing before - I was forgetting what I was going to say so I'm going to sign off for now. All the best - I'm sure I'll have more questions...

I am hopeful that more people will join in the conversation.

chao for now

[sarahin]

:BeamUp: my post went somewhere, i think I was on too long before hitting post.

Ok, here we go....:D

My aneurysm is 2.3 to 3 mm, small or a nub with a wide neck - I've done a lot of research on small unruptured aneurysms and became concerned because I started reading about some that have actually ruptured being that small and I seem to be on the cusp of rising blood pressure. I've had a headache for 7 months now but before that I would have what I called episodes of month long vertigo, nausea, dizziness. A while back I would wake up in the middle of the night with my neck stiff as a board and I never thought anything of it until now.:eek: I asked my doctor about it and she said I was sleeping funny but it was pretty extreme pain. When the headaches began, I was having bizarre fainting spells and bad short term memory - right now I have episodes of this but things are complicated because I was also diagnosed with a pituitary tumor in Feb of this year. The aneurysm was diagnosed in April. The tumor is 5 mm with some cysts that measure 2.5 mm. And I have one other undiagnosed thing on the right side of my head which is where the tumor is and where my eye droops. The drooping in the beginning only came at night when the headache was worse. A better description would be to say my eye lid is lazy...is that the same thing? One of the biggest things is the thunder clap or popping that sometime occurs and I feel altered afterwards and I have these deja vu episodes and my comprehension has over the years gotten worse. The symptom that's the strangest to me is how exhausted I become from simple activities. So far all my doctors have said that there's no connection between my headaches and any of the diagnosis but I spoke with and got the opinion of a doc on line and he suggested that dismissing these things completely may not be the best thing. I am going in to see a eye doctor next month and hopefully they can tell me why my vision has gotten blurrier and why there feels like there's a lot more pressure behind it. Boy aren't I chatty :D

hmmm, I am sorry to hear of the complications. What are you doing to be with this? I ask because my biggest fear I think has been something being wrong with my brain and here it is. I've had to really come to terms with it all and its still early in my process.

Unfortunately, I can't remember the rest of what I wrote - I think it was pretty witty though....we'll never know - but that's why I stopped typing before - I was forgetting what I was going to say so I'm going to sign off for now. All the best - I'm sure I'll have more questions...

I am hopeful that more people will join in the conversation.

chao for now

Just wanted to let you know there is such a thing as a neuro-opthalmogist. I live in Indianapolis and there are only two of them here. So not a lot of them around. It might be worth it to check on your insurance company's web sight to see if they have one they cover under your policy. Your symptoms seem pretty hard to write off as unrelated. I was told the problems I've had post-op weren't due to my surgery, but I finally asked for neuropsychological testing. My evaulation showed I have a learning deficit now. Knowing for sure doesn't make it go away, but at least it is clear I have not just become neurotic. I'm guessing you know what I mean. Well, excuse my venting. :Sigh: Best of luck to yah finding some answers.

[Crwstar]

No problem, vent away. The good news is I am going in to see a ophthalmologist next month and will get the referral to a neuro-ophthalmologist next. I agree my symptoms must be related to whats going on - hopefully, I will get a doctor who will really listen.

Take care

[sarahin]

Crwstar,
Thought I had heard about a connection between brain injury/ cerebal aneursyms and the pituitary. I found this sight.

http://pituitary.mgh.harvard.edu/NCBV11I2.htm
http://www.pituitarysociety.org/public/specific/hypopituitarism/causes_html

[gabrielli]

Hi,
I have two aneursyms. I had an unruptured PCOM artery clipped in March 2007 and have a 11mm one on the carotid artery that is untreated. The last year has been quite a ride!!!! I had no symptoms.. They were found by accident on a MRI I got after getting atypical symptoms with Bell's Palsey. I would be in no hurry to get yours treated if they are small. Once they are larger I feel it is crazy not to get them clipped or coiled if they are where they would cause a stroke. Even though they might never rupture, a subarachnoid stroke has a high mortality rate. My untreated aneursym is behind my right eye and is positioned where it wouldn't bleed into my brain if it ruptured and cause a stroke. If it ruptures I could easily lose my sight in that eye, but getting it treated is a judgement call. It's in a bad place to treat and even though it is large it causing no problems at the moment. Talk to the best doctors you can find and ask lots of questions.

What a cute site this is compared to BT. We the old members have just been emailing everyday or doing messenger. It's our own little site Chris C., Chris B., Suz, Lyn, Pam, Ruth, Julie,Tink, Lori, Glenn and it goes on!! Much better then Bt with all the fighting (who needs that?) you get some newbies that decide to act up trash talk those of us who have been on since day one administrators who we know for a fact were just out of there teens...not good. We have each other for support and can say what ever we want.:D I still go maybe once every other month and read some of the post....nothing has changed there that's why we don't bother. Same people on Bt talking the same BS about each other,our little group is full of support,laughs and we don't need it over at that site. What we miss is helping others and at times we get info. on someone who needs us and we answer. Nothing like been there did that...so I'm happy to see you here helping people go through this journey :hug: It's so good to see you...

ooxx
Mimi

[Crwstar]

Thanks for the information - I will check it out. I do keep getting that question. Is there a connection between the two? - You've given me another question to ask the doctor as well. Many thanks!!

If you think of anything else don't hesitate to mention it.

Crwstar

[Crwstar]

I'm sorry to hear about BT, I registered a while back and got banned before I could post. It was a discouraging experience......glad to hear you all are taking care of yourselves.

I have a question - I read your post on the other thread about your annie being 4mm. mine is small 2.3 by 1.6 with a wide neck of 2.3. originally, they said it was 3 mm. I keep reading that docs don't know what the annies look like until they go in so they can't tell how thin the walls are. I feel that I am symptomatic. Even with an annie this small should I be seeking a second opinion? In your experience have you heard of others with annies this small rupturing?

Sincerely,
Crwstar

[gabrielli]

I'm sorry to hear about BT, I registered a while back and got banned before I could post. It was a discouraging experience......glad to hear you all are taking care of yourselves.

I have a question - I read your post on the other thread about your annie being 4mm. mine is small 2.3 by 1.6 with a wide neck of 2.3. originally, they said it was 3 mm. I keep reading that docs don't know what the annies look like until they go in so they can't tell how thin the walls are. I feel that I am symptomatic. Even with an annie this small should I be seeking a second opinion? In your experience have you heard of others with annies this small rupturing?

Sincerely,
Crwstar

Sorry it's been so long,I don't come to any of these sites to much anymore. You got banned from BT? What did you do? LOL!! They are very touchy over there,a bunch of teenage monitors.
To answer your question...I don't think these doctors have a clue as to how small an annie can be to rupture. It's all about the artery ....mine was thin because the artery was hard. Yes I have heard of small annies going,my would have rupture at any time. And I was symptomatic for 8 months with slurring,numbing of my legs and right arm. I would get a second opinon and have these checked offen...they can change in a blink from small to ready to burst. You are the only one that knows what you are feeling...if you feel better having these taken care of find a doctor who will listen and have the surgery.Best of luck....take care of yourself.

ooxx
mimi

[dyanbrooks]

Sorry I haven't been around for a while, but like you said originally, sad to say there isn't much chatter on this forum.

Couple of things on the threads from you caught my eye. First of all, it sounds like yours behind your eye is close to where two of mine were, which should make them close to the third nerve. Third nerve problems most times show primary signs in the right or left eye, blurred or lost vision, drooping eye, "lazy"eye characterisitics. My annies were huge and actually split the nerve, so of course my symptoms in the end were terrible, but yours sound alot like my early ones.

I also had the nausea (in the end I threw up more than I ate), dizziness, vertigo. And headaches. They started out like regular headaches, but in the end... felt like I had been hit in the head with a bat or something. On a 0-10; they were a 25! I also had the stiff and painful neck. I thought it originally was from an old car accident I had in 2000, but in the end...nope.

I didn't have a lot of mental or verbal issues before the surgery, and still am pretty much OK verbally. Though, I have trouble with some longer words, and once in a blue moon substitute the wrong word. (I kept telling people for the first 3 months that I had had 3 euphenisms...LOLL). I do though understand the whole, "oops, gotta go 'cause I forgot what I was going to say" thing. I have had emails or even grocery lists that have taken me whole days to complete because I keep forgetting what I was thinking. I also have to make lists for next days, cause once I go to sleep... bye-bye whatever it was I was thinking. I have made an appointment with a Neuropschologist, but other than him telling me that yep I am this way, not sure what it is going to do for me. But I still am hopeful. I have been a Technical/Business Consultant for many years and returning is not looking very hopeful to me fight now; so will grasp at any straw.

Now, I do have to say that mine were REALLY bad! I had an 18mm & 7mm behind my right eye; and a 14mm behind my right ear. As to your question about them rupturing or growing? Like I said, my situation was pretty special, but on January 16th the big one behind my eye was 15mm and the morning of the 18th, right before surgery, it was measured at 18mm.

They still are not sure why mine happened. Could have been head trauma from an accident 2 years before or I could have just had a bad case of aneurysms. So in some ways I do understand your worrying. Since they can't tell me why, they also can't say they won't come back out of the blue. And believe or not, insurance companies don't like to pay for MRA's just for me to have a peace of mind :D

You have to let me know how things are turning out for you. I have no one that has had, or even knows anyone who ever had, aneurysms, so I am sort of alone with this. And now that my incision is healed on the outside and I can hide it wiht my hair, everyone has just gone back to normal. Except when they smile and say "it's OK your forgetting, you have brain damage...but at least your still alive"... :mad:

Well, I got a whole lot more chatty than I expected. Probably because it is 5:00 am and I can't sleep.

Great Day To You's... D

[Crwstar]

Thanks so much for responding - I'm a little out of commission at the moment but wanted to let you know I will respond in a few days.

[Nancy0708]

It seems that this is not such an active forum. I see a lot of views but not so many responses. Is there anybody out there? I would love to hear from people who have unruptured aneurysms. Are you symptomatic or not. What have your symptoms been. Previous to a ruptured aneurysm what symptoms were you aware of? How concerned if at all should I be with a small unruptured aneursym that is being watched. I've read that aneurysms as small as 3 mm have been clipped. Any dialogue on this would be appreciated even if you think it won't help.


gotta go :OuttaHere:

crwstar

I have three unruptured annie's, one is 12 mm and was just coiled, one is 4.5 we are watching, and one is only 2.2, not one to worry about right now. My symptoms were a slight dizziness, and deja vu feelings at the same time, when I had 17 is one morning, I said whoa, lets get to the bottom of this thing. I think the standard symptoms for a ruptured one are headaches, numbness, dizziness. I really didn't have any of those except a slight dizziness at times,that I could live with. I am 62, and my feeling is you should know your body, if something isn't right, get it checked. This has probably saved me from having mine rupture. That and a doctor that really listened.

[Crwstar]

How are you today? Looks like we have had some of the same symtoms. And wow, thank goodness all yours were found prior to a rupture!! I had that deja vu thing just like you - 17 in one day - sounds like that really got your attention. I went in recently and had an EEG which came back normal - which doesn't really mean anything but its good I did the test. I go back in hopefully, in a few weeks for a follow up MRI/MRA to check on things as I found out my grandfather had an annie as well. May I ask how long you had your symptoms before you sought treatment? Or did you just know something was up and went in right away.

I'm so glad to have someone to chat with in here :)

Crwstar