I was just diagnosed with a 2,5 mm aneurysm and my Neurologist wants us to take the wait and watch approach. He refers to a recent study where 500 people with 7 mm aneurysms or smaller were watched for 5 years and none had any bleeding. He says I might have had this aneurysm all my life and it may never grow or rupture and that right now treating it poses more risk than leaving it alone. He told me that if he was in my shoes this is exactly what he would do at this point, wait and watch.
This sounds somewhat reassuring but of course I am still very scared and I am wondering if this is the right thing to do? I am 33 years old and I have two small children.
He suggested I have a CT angiography in 6 months to check on it. We are military and we are moving to Oahu Hawaii in about a month. Has anyone been treated for an aneurysm on Oahu? Are there anyone on here that has had a small aneurysm for some time, several years, that is being "watched" that feel confident in their decision? And for you that had small aneurysms that ruptured were there any increased risk associated like high blood pressure or smoking?
And I want to thank everyone who gave me a warm welcome to this group : )
Hi Petra and Welcome...To the Annie Club...not a good club to belong to...but very good people here...
I had a 9mm coiled annie on my Basilar tip...it was done in November 2010...they took it to consideration many things...it was leaking, where it was, size, my age, and where it was located, and I was experiencing bad headahces and very high Blood pressure...and made it a top priority ... now in the meantime they found another annie...it is small...and they placed a watch on it...told me it would be more dangerous to do anything at this point...I have to trust them and God...in June I go for an angiogram...they will check on the one coiled...and they will see if the other had grown...
You will see many here have annie's that are watched...when they are small...I will tell you...most Doctors...will do something if the annie is 5mm and up...in size...
If you don't feel comfortable...get a second opinion b4 you go to Hawaii...
I had a 10mm ruptured annie a little over a year ago. I had two coiling surgeries to repair the annie, still have a 2mm remnant that I am on a wait and watch status as versus going back in for a stent and re-coilng. I have been waiting and watching for two six month periods and have another one next week. I feel so much better with the wait and watch approach and hope to never go back under again!
I had high stress blood pressure issues but absolutely no preexisting risk factors. Since my stress has reduced and I am feeling great. Good luck with your decision and I feel very confident with the wait and watch and not as if there is a ticking time bomb as so many others express.
Thank you all for your responses. Reading your stories I am starting to feel more at ease with this Wait and Watch approach.
Kimberley, I have forgotten the name of the artery it involves but I know it is on my right side in the temporal (frontal?) lobe. He said where my temple is but deep inside the brain. I think the artery was pretty large looking at the pictures of it. Maybe the cerebral artery but I am not sure. I will be sure to find out the specifics of the artery next time I see him.
Jim, 8 years and no change on your second aneurysm is great! I do not smoke I just wanted to know if people with small aneurysms that ruptured had any additional risk factors and it perhaps being the reason their small aneurysm ruptured. My blood pressure is good too so hopefully this wait and watch will work for me.
Petra...my records note my aneurysm (post-multiple leaks/ruptures) was 6 MM and 7 x 5MM ...depending on which record to rely on...
It is terrifying to me (for others) to imagine te size the doctors rely on...whether mine was 6 mm or 7 x 5mm...i had leaks/ruptures with 3 emergencies over 29 days...sought testing/diagnosis immediately following the first... Thus I have limited confidence in stat, thoughts, opinions, and recommendations of neuros.. .
Petra, I have very close, long-term friends living on Oahu...we had the old military duty sharing during the Viet Nam war... Rene is degreed / certified in social services for the military..She is warm, wonderful and caring...and, would give you the best service / help possible...
Please let me know your next step and if you want Rene's #... she will be one to do everything possible to help you...
I have had one coiled/stented, and have 2 that are being watched - one is likely to never be a problem b/c it's only 1/2mm and tho not coiled, the opening is covered by the same stent that was used on my coiled one. The other - it's 2.5mm. I just had my 6mos follow-up-from-surgery angio, and it hasn't changed at all. I'm told it may never change, or that if it does we will "treat" (love that word....."treat" ---- sounds so much simpler than "operate" - ha) as soon as it becomes "unstable" - ie, changes at all. I will be monitored yearly.
I'm getting more and more comfortable with the fact of this, and am trying to live with trust in my docs, and know that I'm getting the best care possible. Also, knowing it's there, I won't ignore any symptoms should they occur, which is also a very good thing, as compared to somebody who has an aneurysm and doesn't know it's there so might delay responding to symptoms, or have to go through lots of testing to even find that there is an aneurysm.
Hope that helps. It's hard though - it's a pretty big thing to get used to, but 6 mos into this journey, it is gettting easier.
Pat, thanks for your response. Sometimes I feel, why not treat it when you know it's there and is life threatening no matter the size. But I have to try to trust the neurologist and find comfort in that he knows the best approach or I would just live in so much fear. I will seek a second opinion when we move to Oahu which is a good thing. I guess I just wanted to know if anyone had been treated by someone on Oahu because I want the neurologist/neuro surgeon with the most experience to treat me if necessary.
Jayce, thank you for your response. So if your 2,5 mm aneurysm grows even just a little bit, like 1/2 mm they will operate? Or is there a certain size they will wait for? Are there aneurysms that are simply to small to treat? How safe is coiling? Who decides which kind of surgery is necessary? I am scared of treating it and not treating it : (
My surgeon actually tried very hard to coil the 2.5mm one and just couldn't b/c it's so small - during that surgery he did coil my larger one though. I imagine that if/when it grows to a size where they feel pretty certain that coiling would work, they would take action at that point. I think that 2.5 is just on the edge of what can/can't be coiled.
Every choice is based on cost/benefit.....the risks of waiting are less than the risk of surgery at this point. Very small ones are unlikely to rupture, and as long as they know it's there and are watching, and I know what symptoms to watch for, I have to try to live in that trust, but it's hard sometimes.
As for which type of surgery, I think often it's pretty clear - sometimes coiling just isn't an option, and when it is an option, it seems to be the recommended route given the lower risk and faster recovery, but there's always personal choice too. Coiling is very safe. I just had my 6mos follow up appt (angio) and was told that my coiled aneurysm is no longer even considered an aneurysm and will 99.5% chance NEVER cause me another problem!!!!!
You're smart to think about care on Oahu, and you'll feel more confident being there once you've connected w a good doctor. I'm sure there's excellent care there.....it's such a desirable place to live, it's certain to attract good doctors!
Hi Petra! Mine was 3.5 on my initial angio and in a week it grew to above 5. I decided not to take the wait and watch approach as mine was causing me to feel lousy nor did I feel comfortable being a ticking time bomb. Mine was also only able to be clipped due to the size and location and after much research and personal stories I am so glad I did not have mine coiled! Once they are clipped you are good. It seems coils fall out, dislodge, disintegrate and they have to be checked for issues throughout your lifetime. I am happy to say I now only have to be rechecked for future aneurysms. I am really glad I didn’t listen to the guy here in my town who said watch and wait. I am blessed I was driected toward UIC who strongly advised me not to sit and do anything. Did you know there are countries who actually pay you money to get tested for aneurysms and get them fixed?
Hi Petra. I had a 6mm clipped what will be 3 years ago in September. Coiling was not an option due to the shape. I have a second 2.8 still in there. We are doing the wait and see approach on that one. CT every 5 years and try and act normal. At least what passes for normal for me. I was Navy for 4 years and Army reserve for 1 as well so kudos to you.
Agreed re coiling - at my 6mos post op from coil/stent, I was told that there was a 99.5% chance that I would NEVER need anything more done with the coiled aneurysm - that it was completely blocked off and not even an aneurysm anymore. I will be followed up, as I also have 2 tiny ones.
Thomas, have they told you at what size they would consider treatment for your second one? So you are being checked for growth every 5 years? Do they space out the imaging more after a certain amount of years on wait and watch with no change in aneurysms?
Kristin, WOW that much growth in one week, that is very disheartening to hear. I suppose it is very individual though. Some people on here have told me their aneurysms have not changed in years. Clipping sounds very risky to me but of course a permanent fix sounds appealing. I don't feel now is the time to make any big decisions for me.
I, too have an annie that is being watched. 3mm on middle cerebral artery, could be similar to yours. My doc said if I get a screaming bad headache go to the hospital. Otherwise, don't lift anything really heavy and don't go bungee jumping or anything like that. I have my 6month follow up test (CTA I believe) in July and am nervous. The doc said if it has grown, they will need to treat. He didn't mention how much growth would cause them to treat so I'm curious about that as well. I hope to be in the category as so many here and they just watch it and it never changes. He said they usually don't treat any annie on initial diagnosis unless it's > 7mm. I know there are differing opinions on this issue but this seems to be a popular one. Wishing you well and enjoy Hawaii. My husband's in the Army and we've been there a couple times, loved it!
Mitch...I have a lot of concern about the size the mds qualify...my records show that mine was 6mm post-rupture...and 7mm x 5mm in the formal story format records...In 29 days I had 3 emergencies...before adequate (not excellent) diagnosis... thus, I am critical of that figure size for a determination for testing / treating. If the mds want to be committed to sizes....my personal opinion if that they need to establish size by the area (the artery) of any aneurysm; i.e. 7 mm may be approprate for the MCA, and not the PComA, etc, etc...specifically qualifying if an artery is anterior or posterior circulation.
Please remember this is my personal opinion/logic...non-degreed / non-licensed...tho a survivor vs trained in a class room. And, then some of our peers have had treatment with size far less... again, perhaps the md/specialists have determiend the size by location...and have just not addressed it publicly to help those in the monitoring process.
Hi Pat: I’ve seen a number of people post your same concerns on this site. Do you think I should get another opinion? The doc told me these are quite common and many people have them their whole life and don’t even know it, they’re really nothing to be concerned about. I guess it was an effective way to tell me what I had and then get me outta there in a matter of minutes! I felt silly for ever having been concerned about having an annie. I must say whenever the issue pops into my mind, I remember his words and I stop worrying/thinking about it. So I guess he really did me a favor, after all what am I going to do about it? I really appreciate your input.
Was diagnosed three yrs. ago with small aneursym. Was advised to watch and see. One dr. told me to get MRA once a year, another at Cleveland Clinic told me one every 5yrs. was enough. More dangerous to coil than to just watch. Mine has grown slitley and has a wide neck and is in hard place to reach. Behind my right eye. I am confident in my decision to watch and see. I have a MRA scheduled for Sat. and dr. appointment with new dr. on Tues. to see if it has grown. If it has grown I will have some decisions to make. Trust your drs. I have always wanted to go to Hawaii. Enjoy your stay there. I'm here if you need to talk. I understand. I have two teenagers and a wonderful husband.