i just found out i have a 5mm aneuyrism behind my left eye. I can wait 6 months, retest to see if it got any bigger or have surgery. I am very confused and scared. I have read different stories on this site about post-surgery. It terrifies me. Has anyone had it coiled and had no lasting symptoms and how long did things take. I know that the craniotomy is much worse. I do not know which one I would have to have done yet. Also has anyone done an aneuryism with glue or neucrylates. I have just recently read about this. Can people tell me what size they had and how long it has been followed without surgery or if it ruptured even when it was small. I do not know what to do. thanks mary bowen
Hi Mary,
It’s been almost a month since I’ve been off work and I actually called my Dr’s office from work one day and explained how I was feeling. At the time, it was a fairly bad constant headache, dizziness, off balance etc, for the past few days. I was told that it sounds like severe dehydration and or heat stroke. Well, days passed and I wasn’t feeling any better so I call again. In I go and I’m told "it sounds like you have Labrinthitus. Spelling not sure. Come back in two weeks, so I did. All of my symptoms are still present and I’m not getting any better so then they decide to send me for a CT scan. The scan came back and my family Dr said (this past Monday Sept. 27th) that it shows a 7 mm aneurysm but doubtful your symptoms are from this. Now I have to go for an MRI and I’m just waiting for the call from the hospital to go and have that done. Here is where I get angry. Before leaving my dr’s office, they said the phone call may be made as early as this afternoon. So here it is 2 full days later and I hadn’t heard anything so called my family dr’s office. Ohhhhhh they say, the requistion hasn’t gone in yet the secretary says. It will be either today or tomorrow. I was so upset, said ok thank you and that was it. Well it took me less than 60 seconds to call back and give them a piece of my mind. “Today or tomorrow”?? NOT acceptable!! I said I want that sent in TODAY and confirmation as such from your office that it has been done. I would think that a 7mm aneurysm would suit the priority list!! I said. Oh boy I was angry. So, I have the same questions as you do and I’m also terrified. I continue to have changing symtoms, headaches are always present and live with them every day. The last 2 days I’ve had a stiff neck and sore. You and I are in the same position as in we have no answers and a whole lot of questions. I wish I could offer you some encouraging words and advice right now.
Thanks for reading. I’m truly frustrated.
Tina
Mary, I had a 6mm behind my left eye and once they found it they kept me in the hospital so they could monitor me, the surgen was out over the weekend but i went to surgery Monday morning and had it coiled. They gave me a choice I could have had it clipped and that meant they would have opened my head i think but that scared me so i chose to have it coiled. That was June 30th, 2009 its been a little over a year and i can just now ask questions and read about it, i didnt even know where it was until a couple of weeks ago i was afraid that if i knew where it was and i felt a pain there i would think it had ruptured or something. They said that i did well with the surgery but i have memory problems and i have a blind spot in my left eye that i guess will always be there and it blacks out what ever im looking at so reading is a little hard. I had alot of anxiety problems for the first year but im slowly starting to do things again like ride 4 wheelers with my kids and go swimming things that i have been scared to do since surgery. My dr. said their are no limitations to what i can do but it still scares me, overall im ok and happy that i found it before it ruptured, I know that i appreciate time with my 13 year old twins more than i ever did. I have alot of questions too since i am just now starting to research this i was afraid i would hear or read a horror story and it would through me into a depression so i avoided it therefore i have alot of questions too. Sorry i couldnt answer more of your guestions but im sure you will do fine, mine came out better than i thought it. Laurie
Laurie,
Have you had complete eye-testing…seen a neuro-ophthalmalogist?
I had (have) hemianopia (more recently identified as quadrantopia)… and, there are other vision issue names…There are lobes/nerves that relate to vision…as well as all the little pieces/parts of the eye…and the artery(ies) that serve our eyes…
22 months post-coiling my neurologist referred me to vision therapy…he walks on water… I saw neuro-oph before and after therapy which qualfies the results… my success! And, the results of any therapy will vary by which injury(ies) and the extensiveness… the optometrist with the therapy clinic started me with testing (again) at the beginning, and at three month intervals… She walks on water, too…I did that therapy for 14 months… and, weekly /monthly successes…
I will start a new letter that relates to vision and driving, etc…and some referral resources…Please see a neuro-oph if you have not already…likely need your regular oph to do a referral…
Pat
Hi Mary,
Do you mean you have the choice of craniotomy or coiling now? Or would you have to wait for the re-test and potential change in size to make your chocie?
Did the md/office offer you the “patient information” pamphlet on the glue and the other?
If anyone has the success of NO symptoms post-coiling, it would be tremendous to have them share it…
My initial records note mine was 6mm and it had ruptured… I would be a big fan in the earliest possible treatment… that is just my personal opinion…
Wishing you the best in your decision process…you are blessed that you had mds who made an early diagnosis…tho you feel scared and confused…it is truly grand that you have the time and ability to research, to ask questions, to make your decision…and, so hope you have strong family/friend support to help you through this process.
Pat
Mary…
For info on Onyx…put “H060003” in search…and, it will take you to the FDA approval site for that device…and, all similar devices. That FDA site also has data on its approval process, etc…
The other name you wrote I do not know…call your md and ask for a patient info pamphlet and/or the HDE #.
At the time my coils were implanted…they were to only be used when surgery was essentially impossible by location… shortly thereafter, they were FDA approved to be a patient choice.
Hope any of this may help you find data to help you make your decision.
Pat
Did they send you to the hospital immediately after finding it or were you already there, because you said they kept you there. Did they even suggest watching it for 6 months and retesting or did they tell you it had to be done immediately because from what I have read aneuyrisms less than 7mm are considered small. I know the anxiety feeling and every little twitch I feel I think this is it. I’m glad yours turned out fine and I wish you the best. Mary
Mary,
It is a very frightening diagnosis. Rely on your neurosurgeon for all the info you need to make the decision. I had surgical clipping of a 4mm aneurysm on my opthalmic artery a year ago. I too had the choice of watching it or being proactive and clipping it surgically ( it could not be coiled). When I was told the odds of surviving a burst aneurysm and what the probable outcome was if I did survive, I decided I could not put my family through that.
One year later I have no regrets for making the decision to have the clipping done. I have total faith in my neurosurgeon, who is still following me with an annual MRA.
This is a very personal decision. I hope this helped.
~Wendy
Tina,
Sorry to hear the doctor’s office is so irresponsible. My neurologist was great. I had gone for an MRA after an MRI showed something. The next day he called me and said it was a 5mm aneurysm and told me he had set up an appt. with a neurosurgeon for me the following day. I was scared of the speed that things were being done. I met with the neurosurgeon who was more interested in my pinched nerve (this is how everything originally started) than the aneuryism. She barely discussed it and said that it would be watched and come back in six months. I was relieved but everyone was shocked. I decided to consult another neurosurgeon for a 2nd opinion. He did explain alot but I still do not know what to do because smaller aneurysms are usually watched rather than treated because of the risks with treatment and he said the choice was mine if I couldn’t live like this everyday without panic and anxiety. I would have to do an angiogram first to see what kind of surgery I could have. I thougt the coiling procedure was nothing compared with the open brain surgery, but after reading many different stories, I found out that it is almost as bad. If I were you I would definitely get another opinion and find a neurosurgeon that you feel very comfortable with. I truly do not know what I will do. One day I think I will wait, then the next I think I should do it because every pain in my head, or dizziness, neck pain, or blurred vision terrifies me that i t is rupturing. My life has truly changed dramatically in the last couple of weeks. I am afraid to go to sleep in case I die and I am thankful to God everyday when nothing happens. I feel like I have been given a death sentence and need to get everything in order in case. My kids do not seem to understand how serious this is. I hope you find the answers you are looking for soon and that everything turns out well. Keep me informed of any new findings and I will do the same. thanks Mary
Pat,
I will not know what my choices are until I do an angiogram, but I do have the option of waiting or picking whatever surgery they think is best to do before it ruptures. The md never even mentioned the glue or neucrolates, I found this out by looking at tons of things on the internet. The glue has been approved by the FDA but the neucrolates are waiting for FDA approval which is supposed to be later this year. I need to find out about these. Thanks for the reply and I hope you are doing well. Which procedure did you have if you don’t mind me asking and how bad was it. I am new to this site. Forget the last question because I see in your other reply that you had coils. You said that was your only choice. How long ago was that?
Pat,
Thanks for the info. What is the HDE#. I do not think there are pamphlets on these yet but I will ask.
Mary this has all come down at my family Dr’s. I haven’t even been referred to a specialist yet! Which I find very mind boggling.
How old are your children? I have two, my son is 21 and my daughter is 20. I"m not entirely sure if they ‘get it’ either. In some ways, I think that they do but my intuition tells me differently so I understand having that concern as well. Actually, do you think anyone truly understands the seriousness of this? My husband certainly seems to and he’s very angry right now over the lack of treatment and sense of urgency that our family Dr has displayed so far. It wasn’t even the family doc to tell me what was going on, it was his practical nurse! Who I had to REMIND about the results of the CT scan as she told me to come back in two weeks time!! I said ok and what about the CT results??? She said, oh yes right…then she proceeded to read the report out loud to me. UGH!!!
Wendy,
He gave me the info but did not lead me in any direction. My confusion is because a 5mm is supposed to be small and may never grow, but there is no guarantee that it will not rupture. If that is the case then all aneurysms should be treated proactively. Some info says that people have aneurysms and never know and nothing happens. They really don’t seem to have any definitive guidelines. Yours was even smaller. Did your neurosurgeon help you? Did you find out it could not be coiled after an angiogram and why could it not? Did you have any permanent disabilities or problems after the surgery and did they explain everything that could happen after the surgery that may be just as life threatening or debilitating. I hope you don’t mind these questions. Maybe some of your answers may help me. The prospect of it rupturing, and the outcome if I survived scares me too and I do not want to put my family through that either, but not knowing the outcome of the surgeries and how bad I might be after those also makes me question which is best. I keep thinking that 2 months ago I knew nothing and nobody can say how long it has been there. In a way I feel lucky that it was found but I would feel much better if somebody could say someting definite one way or the other. I know nobody can give me any guarantees but maybe if i know some outcomes my decision will be easier. Thanks for your reply. Glad everything tured out fine for you and yu have no regrets. I wish you all the luck in the world with your future MRA’s. Good health, and thank you. Mary
Tina,
I would run not walk away from that doctor immediately. I also would not go to a specialist that was recommended by them. Do your own research in your area on the internet. Search for top hospitals in your area that deal with aneuyrism surgery and for doctors who specialize in aneuyism treatment. If you look on this site under the categories it tells you how to find a doctor. My girls are 18 and 16. I don’t know if they are in denial like me and think nothing will happen or don’ realize the seriousness. My husband does’nt seem to realize either because he said right from the beginning to wait the 6 months. My sisters seem to realize because they keep telling me to go get it done, but neither one of them know anything about the surgeries or the outcome. They seem to think it is like pulling a tooth. You and your husband need to step on this yourselves asap so you know what your choices are. Good luck. Mary
You mentioned ‘denial’. I’m glad because hopefully this is a normal reaction and I have a certain amount of that as well. I haven’t been completely honest with my family in stating that fact after my husband said when I told him I was scared he said, of course you’re scared! I would worry about you if you WEREN’T. Some days I’m scared, some days I think oh this is totally false and the CT is wrong and the radiologist didn’t know what they were talking about.
Mary it’s so important that you have a good support system at home and if you don’t think that the family is truly understanding this, somehow they have to so that they are there for you right now. It’s a very trying time for everyone BUT you have to come first right now. I really hope that your family will rally around and begin understanding the nature of this beast. When you’re husband told you to wait, maybe he’s afraid of the surgery but on the other hand, he has to try and understand that you are the one walking around with a ticking time bomb every day and that IS NOT easy. Nor do I think one would ever just get “used to it”. Are you having any symptoms at all?
Tina
Tina
That is the worst part of it. I am not sure because I have read that some people have symptoms with an unruptured one before it ruptures. Some have had a headache for a week before, or a stiff neck, or blurred vision and confusion. I have had headaches but not really bad ones, and I think it is tension, then I get scared to death and think omg is it rupturing. Every little thing I feel now makes me question if I will be alive the next day. I keep trying to tell myself to calm down if I plan to wait the 6 months or I’ll probably die just from the stress. Mary
Mary I feel so much for you right now. It’s hard not knowing whether or not your symptoms are related or not. I don’t beleive that there are no symptoms, sure maybe there are a percentage of people that don’t present symptoms but I also am equally sure that there are some people; depending on where the aneurysm is located, that do present symptoms. I have very little faith right now in what any Dr says to me. Maybe once I am in the hands of one that I feel comfortable with and is treating me, my attitude on that will change. But it isn’t this day. I feel extremely vulnerable right now due to how this has been handled so far. I feel the same as you, each headache, each pain I feel in my head I ask myself will I be here tomorrow? And if so, in what capacity. We also not only worry about a rupture, we also (at least I do) worry about leaking and any changes that may have happened since Sept. 16th when my CT scan was done and this monster was found. I never would have dreamt that I would be in this position as I’m sure you didn’t either. All we can do at the moment is wait and hope that intervention is not far away and we’ll come out of our treatment just fine. Hard to do though isn’t it? I can’t imagine your situation and who knows, I might be presented with the same one, wait or not to wait. Or maybe the decision wont be left up to me? I dont know. I get confused at times and I also find that my short term memory isn’t up to snuff either. I’m fatigued and sleeping more than I usually do. Some days are better than others. What I do know for absolute certainty is I’m afraid one minute and treating it like a cold sore the next. That scares me also. Tina
Mary,
My neurosurgeon did not push me in one direction or the other. She gave me facts about the chances of surviving a rupture vs facing a very serious surgery. The smaller aneurysms are thought to be less likely to rupture, but nobody can or will guarantee you they won’t rupture at some point. I did find out after an angiogram that due to the wide neck of my aneurysm it could not be coiled.
I do not have any disabilities after the surgeries. I did develop a bone flap infection and needed a total of 4 craniotomies and a bone flap replacement. The sight of the surgery is numb and tingley, which I can live with. I do have a small dent at my temple (my hair is now covering it as it grows back).
I am fortunate to have been treated at Brigham and Women’s in Boston. My neurosurgeon was confident that she could clip the aneurysm and I would still have my eyesight. She did and I do!
Even after the infection and 4 surgeries I do not regret making the decision to have it clipped. I do not have an aneurysm in my head to worry about!!!
Hi Mary, I had a very small one coiled about the same size 4mm on my carotoid artey in my brain. I was fortunate to have Dr. Ogilvy at Mass General in Boston. He learned how to coil by the Dr. who invented the procedure. It took all of 45 minutes and I watched from the corner of my eye as it was coiled. I was awake and was amazed by the process. I only felt a warmth and a flash when each coil was placed. I spent one day in ICU and was released. My family and myself were amazed how well it went. I was back to work in 1 month. I am doing great after 1 yr this Oct. 19th ,that I had it coiled. The follow up of an angiogram is all I need to do now. I know each case is different but if you can get Dr. Christopher Ogilvy who is also founder of this Aneurysm foundation I would try. His number is 617-■■■■■■■■. I had to wait to have him and I know how scary that can be. Can I ask how you found it. Mine was a coincindental finding when I had Bells Palsy. Take Care.
Mary, HDE is Humanitarian Device Exemption; the # is the file # on the FDA site.
HUD stands for Humanitarian Use (or unit) Device…presumably the study data on the device…
The FDA site relates to devices with low annual volume usage… this site lists a lot of devices with low volume usage…which provides a comparison for us on the quality of compostion of the patient info pamphlets and the professional use pamphlets…
At least this data may generate more questions for you to ask your neuros… to help you make your decisions.
Pat