Sometimes doctors see a big $ sign in your face (but not all) so just do your job, research, read and see all those links that I sent to you. Then with your exams, and questions in paper go a talk to 2 other specialist: one that does coiling and one that does Pipeline embolization device and make an informed opinion on your own. If you have a son or daughter go with them so you can discuss their opinions also, considering the risk of all options. Also enter the forums that are specific to some of the treatments here, for example there is one for Pipeline where patients discuss their experiences.
Many of the questions that you have are answered in the paper that I sent to you (the link from FDA) though it is very technical and statistical, and it is important because it outlines risk and benefits of different procedures depending on your age, overall health, and your aneurysm.
Also in the videos of the link that I sent you, there are many doctors explaining options and risks, and in some of them they anwered questions from potential patients. You can see those videos and your children or your close relatives too. Again that link is:
My husband is dragging me away by the hair, but I will reply soon. WOW! Martin and Ana, thank you so much. I needed that perspective. Something is not sitting right...why would a top doc say that he would do clipping when my annies are 2mm??
There are two books noted on one of the main pages of this BAF site...skipping titles...One is by Dr. Spetzler already noted below...and, the other by Dr. Eric Nussbaum...I so encourage reading those.
Moltroub also posted a Basic Brain discussion w/a review of the brain...tho not the cranial arteries...you can ask your surgeon to explain which areas are supplied by your named arteries...
My natural aneurysm was a left PCOM...and, my ACOM is a chapter as I did not have an aneurysm, or any other natural factor there or nearby.
Even tho coils/stents can/may initially be quicker than the initial open surgery, they do have more follow-ups, thus more radiation and contrast dye (agents, materials, media, medium). Thus, you may want to ask any interventionalist and your surgeon about these volumes...to help us avoid the no-brain...er-er-er... and, ask how they can/may report it on their patient records.
Wishing you your best research and visits to your doctors to ask numerous questions to reach your decision.
Nina..I was coiled and stented... and have much of the symptoms you note...I had only one small PCOM aneurysm...resulting in coronary care...to a delay in the "day of coil embolization:"...w/limited tracing of off-label/off-record stent implants...I do have hearing loss in both L/R inner ear, both L/R vision damage; and far more...the paresthesia in my left arm/hand...my general weakness is my right body...I came thru with global aphasia, memory loss, to much more..
Thus, coiling/stenting can/may also be a very big deal...
Nina said:
Yes, clipping is very big deal. I had a craniotomy for clipping almost a year ago, and they clipped 5 aneurysms for me. Though my surgery went well, and I came out with no major issues, for which I am thankful, I would still describe my surgery as life changing. I now have insomnia, and sensitivity to sound, stimuli, etc. Before going into this type of surgery, I would make sure the benefits outweigh the risks. There are 3 options in regards to unruptured aneurysms: 1) watch and wait 2) coil or 3) clipping. Some aneurysms are small enough that neurosurgeons agree that it's reasonable to just watch them with periodic MRI's. Other aneurysms present more of a risk, especially if they show significant growth from year to year, which was my case (2 or my 3 knowns aneurysms had grown to 5mm and 6 mm). In those cases, the neurosurgeon may advise it is best to operate. Before my surgery, I sought information online in regards to the different treatments. I wanted to understand what I might be getting into. In my case, I HAD TO go the clipping route, because coiling was risky to my kidneys because of the die used. I understand the fear of living with unruptured aneurysms, and I know what it is like to recover for clipping. Recovery is not a bed of roses. Since your aneurysms are small, I wonder why your surgeon did not suggest the watch and wait approach as an option. I would try to talk to the doctor again and get more information before agreeing to this invasive surgery. Getting a second opinion might be another idea. Have you had an MRI? or Angiogram? With those tests, doctors are better able to see the accurate size and location of the aneurysms. Competent neurosurgeons usually have a patient do either or both of these tests before operating. It gives them a map with which to work. Please, do more homework before going into a clipping surgery.
Five months after discovery, along with with a little growth, did it for me. I wanted that aneurysm gone. I got it clipped and have not regretted having it clipped.The recovery is longer. I will have to deal with that. But, I have not regretted my decision
Look with all the procedures there are risks involved in the procedure itself, and some risks and issues that appear after the procedure, some long term, some short term, some life threatening and some minor. There are risk of not doing something too. In my case after the procedure in the clinic I had a very strong headache for 2 days, and then mild after a week. But 2 days after the procedure I was giving my sister a tour of the city I was living in on foot for all day. Since my aneurysm was in the oftalmic carotid artery I had some issues with vision like light flashes, temporary partial loss of vision for seconds in one eye (like somebody paint partially in gray color your tv while you are watching it), total loss of vision (all black) for less than a minute in the eye where the aneurysm was, pressure in the head, some dizziness and problem with concentration. And I discovered that they were most common on those days when I was under stress. Those symptons have almost disappear 2 years after the procedure.
July, I personally know a (local to me) survivor who had a rupture in her early 70's while wintering in AZ. She was wintering in AZ; air-evac'd to Barrow/St Jo.(?) and, has overall done wonderfully with open surgery. Before her 80th, she did sell her home and moved into assisted living.
July said:
Amy, isn't the recovery pretty hard and aren't there often issues? I've read quite a few scary bits about clipping. I'm 62 years old. On the pro side: I think my surgeon is really good (Dr Spetzler at Barrows in AZ) and he said mine were in a good place for surgery. And I was thinking....online we don't hear so many success stories because people are out living their lives. It's when we have the problems that we need support. But I have to say, clipping scares me to death right now. How was your recovery? After effects?
Bermudez, I have never heard of this! I am one of those people who starts to research, hits a bit of unexpected bad news and goes into a huge anxiety tailspin. I can handle anything buy serious health issues. So, I will start looking into this...or have a friend with medical background look into this! Thank you!!!!
Because, even tho the coil/stent is quick (compared to clip) they can/may have so much f/u... over and over..
carol72 said:
Five months after discovery, along with with a little growth, did it for me. I wanted that aneurysm gone. I got it clipped and have not regretted having it clipped.The recovery is longer. I will have to deal with that. But, I have not regretted my decision
I agree with others that you should get a second opinion through an endovascular specialist or neuroradiological interventionist and discuss having coiling instead so you know your options. Doctors are only going to offer a solution using the services they provide. Im also really surprised that he is discussing clipping 2mm annies, did he offer you a wait and watch option? you need to remember that not all aneurysms grow, or rupture so doctors should be treating them based on risk, but it seems many doctors are treating them based on fear for the patient. since your aneurysms are very small, I would definitely get more opinions and then make a decision.
My aneurysm is 3mm and on the right MCA. When I spoke with a neurosurgeon about it, one month after it was incidentally discovered via an MRI, he told me of my options. I could monitor the size or have the clipping surgery and never have to think about it again. At that time, 3.5 years ago, it made sense for me to have the clipping and get rid of it so I scheduled surgery. However, as time passed and the more I thought about it, I had a lot of anxiety about the surgery. So I went to get a second opinion about my decision of getting it clipped. Because of the location and size of my annie, the neurosurgeon's recommendation was to monitor the size. He said it was the same recommendation he would give to his wife and daughter. His suggestion was consistent with some of the webinars I've seen on this site about unruptured annies - to monitor small ones that are located in the anterior part of the brain. I have opted to monitor the size and so far it has been stable.
Hi July - ok, glad it was Dr. Spetzler so at least if you do need clipping you’re in the right place. A different doctor taught my surgeon coiling and that is how my surgeon became the master of both. I do feel that when Spetzler’s office calls you back, they can address your questions about coiling even though he doesn’t do it. Ask him “please help me get an appointment with the best neuro radiologist you know who does coiling” so that you can get another perspective. He really should be willing to do that a EVEN if he feels you are not a good coiling candidate. Tell him it’s for peace of mind
I also want to mention to people who said they fear the clipping surgery so decided to monitor and wait: I certainly understand your fear of surgery and would NEVER try to say “you’re making the wrong decision.” I just want to share that my aneurysm was tiny…in the anterior section…and it ruptured. That’s the thing…they can really “go” at any time…even if they’re looked at every few months. And it’s harder to survive a ruptured aneurysm than to survive surgery on unruptured.
Jennifer do you mind sharing what artery your aneurysm was on ? Also had you been monitoring it? Also did you have a family history or were you a smoker? Thanks another watch and wait trying to figure this out
Three years ago I had the Pipeline implant. At that time I was 66. My Aneurysm was located in the pocket that all of the veins and nerves go to eye and face on the left side. I went to Kansas University Medical Hospital to have this done. I was afraid at first because this was a new procedure. However, I had a great team working with me. I was imagining a lot of pain but I was pleasantly surprised with pain only in my groin. That wasn't really pain just sore which lasted only a few days. Six months after the procedure I went in for my check up, I found out the it had not clotted over. June 8 I went back in and had a second implant. This one did the job! Ten days later my Aneurysm was gone.
Three wonderful years with no problems! At 69 I am enjoying life to the fullest!
Try to get a second opinion and ask about the Pipeline. Who knows, you could be perfect for the procedure.
As I was waiting for my second procedure to be done, I was talking with a lady and she was very afraid to have this done. She asked me if there were any survivors. I told her " yes, I am". The next day I was up and walking around, I found her room. I went in and asked how she was doing. She said " Very well. Thank you for talking to me before surgery." My surgeon told me thank you for calming her fears.
I hope that my story helps you. Best wishes to you!
Hi Kelly, mine was a small aneurysm in an “anterior communicating artery.” If you need more specific than that I’ll need to go check my records :). Which I’m happy to do. I was 42 when it happened in 2103, and I’m a slim non-smoking non-drinker who eats organic foods and has NO family history. So it ruptured completely out of the blue on a Sunday morning, when I was home with my two young boys. If I’d known it was there I would have had it clipped before rupture, scary though that decision may have been.
Marjorie, that's a great story! I've added Pipeline to my list of things to research. It's wonderful to hear about how people end up enjoying life to the fullest. My best days are when, like today, I get totally away from thinking about aneurysms!
Kelly, if you ever want to talk about watch and wait with someone else trying to figure it out, let me know!
Jennifer, your point is well taken. How big was yours if you don't mind my asking? I saw a study that said: "Aneurysms at certain locations (such as the basilar artery and the posterior communicating artery) are more likely to bleed at a smaller size." But that is not where yours was.
BTW, I live 10 blocks from Barrow! And, they did not call me back yet.
sharong, yes, he said that wait and monitor was an option. He said the choice was mine. But then he talked about statistics if there is a rupture. Yikes. It makes it more complicated for me because I have 2 and one is in a place that is more likely to rupture...but how much more likely? I don't know yet but the resident who works under the surgeon did not seem to think it was a much bigger risk.
I want to find someone who will sit and really talk about this. Not a surgeon, but maybe a neurologist that KNOWS about aneurysms and will spend time. I don't know if someone like this exists. I love to do research on all sorts of things, but not this. I get very anxious and soon I have to stop and do something 'normal'. I am very frustrated with myself.
Finding this group has been great. Other groups seem to be for survivors who have gone through hell and back and I feel like my issues are nothing compared to theirs. Thank you all for your replies.
"sharong, yes, he said that wait and monitor was an option. He said the choice was mine. But then he talked about statistics if there is a rupture. Yikes. It makes it more complicated for me because I have 2 and one is in a place that is more likely to rupture...but how much more likely? I don't know yet but the resident who works under the surgeon did not seem to think it was a much bigger risk."
I dont know why a doctor would scare you with those statistics, I dont think he should be scaring you with what might happen from a rupture, but instead focus on the risks of your annie. keep in mind there are many rupture survivors here, and many of us didnt know we had aneurysms before the rupture. I have 3 annies, one ruptured (8mm), a similar sized one was later coiled and the third is watch and wait (4mm). I also have a theory that many of the people who die from ruptured annies dont realise something serious is going on, they may simply have a severe headache and not seek help straight away so I think it's a good idea to know the symptoms. My neuro didnt think I was going to make it, or I would end up with brain damage because my sah was so severe with severe vasospasm but it's all conjecture on the doctors part. There is so much they dont know about the brain.
