I just had an MRA and the results show that arising off the left anterior cerebral artery there is a small focal aneurysm measuring 2 mm with a wide mouth.
Several years ago I had a pulmonary embolism and found out I have Factor V Leiden and am on blood thinners for life.
The reason for the MRA (and MRI and MRV which showed nothing), was for severe pain on the left side of my head. The neurologist said this pain is not related to the aneurysm (it is in the back).
Because I am in such pain my conversations have wanted to focus around that but he said repeatedly that the aneurysm was serious and we needed to get on it and he sent my files to a neurosurgeon while were talking.
Everything I read says that at this size they are usually monitored...can anyone tell me if the artery this is on makes a difference or the fact that I am on blood thinners, which honestly concerns me a bit...this doc oversees my Coumadin clinic, so I know I am in good hands, but I am hoping someone can share some insight.
Hi, I had to go on a Coumadin AFTER my aneurysm ruptured because I developed a PE after clipping surgery. My story gets complicated so I will just tell you two things: 1) you are very extremely lucky you found your aneurysm before it ruptured. Take care of it ASAP by clipping or coiling before it ruptures. 2) if it ruptured while you’re on Coumadin, that will be a deadly combination that will be hard or impossible to survive. I see you are from Maine: please see if your doc can get you to Dr. Ogilvy at Beth Israel in Boston or the amazing surgeon I used: Dr. Howard Riina at NYU. He saved my life.
Hi..I lso had to go on blood thinner AFTER surgery. My doctor is at Tufts Medical Center in Boston. He is wonderful! His name is Dr. Malek. He would take good care of you, I promise!!
Jennifer said:
Hi, I had to go on a Coumadin AFTER my aneurysm ruptured because I developed a PE after clipping surgery. My story gets complicated so I will just tell you two things: 1) you are very extremely lucky you found your aneurysm before it ruptured. Take care of it ASAP by clipping or coiling before it ruptures. 2) if it ruptured while you're on Coumadin, that will be a deadly combination that will be hard or impossible to survive. I see you are from Maine: please see if your doc can get you to Dr. Ogilvy at Beth Israel in Boston or the amazing surgeon I used: Dr. Howard Riina at NYU. He saved my life.
Hi Jennifer. I too was saved by Dr. Riina at NYU. He saved my life. It was so great to see your post. I had a coiling on a 4mm ruptured Annie. I now have two small ones we are watching. Hooray for Dr. Riina. Thanks Marie
Hi Marie, Dr. Riina was actually my second surgeon. My first one at another hospital clipped incorrectly so Dr. Riina had a mess to fix…and he did it! Now I have two small clips. Definitely hooray for Dr. Riina, you are in great hands
Yes, that would be a great ending if you turn out not to have anything wrong; fingers crossed. Before you move on – Please have a neurosurgeon who operates on aneurysm ALL the time look at your scans. Hopefully you will be in the clear but you need to understand, for sure, if what they thought they saw was " nothing" or “something.” Insist that you and your scans be seen by an expert or else walk out with the images and find someone on your own. I learned the hard way that you have to advocate for yourself. Good luck and hope it’s good news for you.
I agree with the others in the necessity to consult a neurosurgeon familiar with aneurysms. I would also be very careful taking Coumadin if it is an aneurysm. I suffered a catastrophic rupture while I was on Coumadin and was told there was absolutely no way I should have survived. Your neurosurgeon will be the best source of information on this.
Sorry to be so late in responding I just got out of the hospital after a 6 day hospital stay for nasty head pain...and a spinal tap gone rouge. I will be seeing a neurosurgeon in early June to follow up on this aneurysm issue to hopefully get some more definite answers. I have no choice on the Coumadin as I am a lifer due to Factor V Leiden. How do you choose???? Thank you all for your replies.
It’s not that you shouldn’t take Coumadin - you should. It’s that if you are on Coumadin you MUST treat the aneurysm (if it turns out you have one). Because ruptured aneurysm + blood thinner (Coumadin) = disaster. Hope you’re feeling better after your hospital stay and best of luck.
I hope you get some answers soon. Please let us know if you end up having an aneurysm or not. It's frustrating when they keep backtracking on things and telling you one thing one day and another thing another day.
Your headaches on your left side piqued my curiosity - my dad gets shocking headaches on his left side, near the temple. He has a 5mm aneurysm on the left middle cerebral artery but like everyone else, the doctors say the aneurysm isn't causing it. Frustrating isn't it?
I have had headaches for years and whined to my family that I probably had a brain tumor, so it did not shock me that I had an aneurysm, because it is in the middle of my head, between my eyes, where the pain radiates. I wish I had kept a headache diary, because I seemed to have the worst headaches during full moons and severe weather changes. I have read medical studies which compiled records of ruptured aneurysms to see if there was a connection with the full moon and there was. I wish they had also checked barometric pressure.
I had a ruptured aneurysm (bisected rather than berry) that was stented. At the same time, they found an unruptured berry aneurysm. My neurosurgeons at the fabulous Cleveland Clinic said the 2nd one should definitely be treated sooner than later, but that my brain had suffered enough assaults for the moment so we should wait at least 3 months before craniotomy & clipping of that one. Because of the stent they put me on coumadin for the interim. I was under strict instruction to stop the coumadin 5 days before the clipping - received numerous phone calls, emails, etc. to remind me; I stopped 7 days before, just to be safe. So I guess my question about your situation would be what are the ramifications of going off coumadin for the week prior to surgery, and how soon after surgery would it be safe for you to start again? Also very important is to ask the 2 doctors treating your 2 conditions, to consult with each other directly, in order to come up with the best plan, and so both have the same understanding of all relevant aspects for treating the 2 conditions. Good luck to you!
They always bridge me if I go off my Coumadin with lovenox shots and I stay on them until I am therapeutic again. The doctor that runs my Coumadin clinic is also the neurologist that is treating me and he has referred me to the neurosurgeon that I am seeing in early June. I won't know anything more until I see him in June.
Right now I am off them for another head pain issue and instead of a full bridge, I am on a very small lovenox dose...very different from normal, but I suspect this is what they would do if I every did this annie surgery.
I am going to Brigham and Women Hospital's pain clinic on Tuesday and have all of the MRIs and CT Scans of my head and neck on a CD from this year (there are a lot). This is for my other head pain issue, but I will also be taking it to the neurosurgeon in early June. But maybe they will see something on Tuesday...fingers crossed.
Jennifer said:
Yes, that would be a great ending if you turn out not to have anything wrong; fingers crossed. Before you move on -- Please have a neurosurgeon who operates on aneurysm ALL the time look at your scans. Hopefully you will be in the clear but you need to understand, for sure, if what they thought they saw was " nothing" or "something." Insist that you and your scans be seen by an expert or else walk out with the images and find someone on your own. I learned the hard way that you have to advocate for yourself. Good luck and hope it's good news for you. :)
The ruptured one was bisected, meaning the blood vessel tore lengthwise, so no width to measure. I can't remember the exact width of the 2nd one, but believe it wasn't huge (4-5cm??). Given my new history of rupture, although he wasn't concerned about any imminent rupture of the 2nd, he wasn't just going to leave it there. I believe your risk of future ruptures significantly increases once you've had a rupture, so perhaps my story doesn't apply to your case at all! Many people live long lives with unruptured aneurysms and die from other causes. Hopefully you don't even need to consider all that now!
maizeymoo said:
How big were your Annies?
They always bridge me if I go off my Coumadin with lovenox shots and I stay on them until I am therapeutic again. The doctor that runs my Coumadin clinic is also the neurologist that is treating me and he has referred me to the neurosurgeon that I am seeing in early June. I won't know anything more until I see him in June.
Right now I am off them for another head pain issue and instead of a full bridge, I am on a very small lovenox dose...very different from normal, but I suspect this is what they would do if I every did this annie surgery.
I have a genetic disorder that causes blood clots. I had a pulmonary embolism after a knee surgery many years ago. When I was pregnant, genetic testing was done to find the anomaly. In June 2010, I had. Triple brain aneurysm with an SAH. The largest was 3cm, then 1.5 cm, then 2 mm. The giant aneurysm was bleeding and was coiled immediately. The medium was coiled two months later, in August, after giving me some time to recuperate. The initial thought was to leave the small aneurysm and just watch as it, it would be coiled only if it grew or bled. But, then the stroke doctor got involved. I cannot have any surgery, or be on bed rest, without taking precautionary blood thinners. I also take a full strength aspirin everyday. Having an untreated aneurysm would make it impossible for the doctors to medicate me with blood thinners as the risk of rupture of even a tiny aneurysm was just too great. So, my third aneurysm was coiled.
In my case, this was the decision my doctors advised us to make. The third coiling was very hard on me and I did not make a good recovery from that procedure. I guess it is better than worrying all the time about the aneurysm rupturing.
I hope this information is somehow helpful to you. Try to get all your doctors to talk to each other if possible, that is a great way for the best decision to be made for you.
I saw the neurosurgeon this week. He said the only way to be sure this is or isn't an aneurysm is to have an angiogram of the brain. He showed me my images and what an angiogram shows and it was quite amazing to see the difference...they are 3 D. He only does them one day a week so it could be a bit before I have this done, probably at the end of July or early August.
As far as the other head pain goes I was diagnosed with occipital neuralgia.
