I was recently diagnosed with a aneurysm distal to the ophthalmic artery arising from the cavernous carotid. It is pressing on my optic nerve. It was detected by a neurologist that I was seeing for a different matter. During my check up he noticed that my left pupil was twice the size of my right pupil so he sent me for an MRI/MRA on 4/18/12 that is when they found the aneurysm. From there I was sent for a CTA on 4/30/12 to confirm the findings of the MRI/MRA. It was confirmed so off I went to a Neurosurgeon, Dr. Coon at John Hopkins on 5/7/12. I am now having an angio done at Hopkins on 5/23/12 to determine the best way to treat this. From what I understand it is in a very difficult place to reach, but the Surgeon said it had to be dealt with as it had grown in the two week period between the MRI/MRA and CTA and because it is pressing on the optic nerve he said I would lose my eyesight in that eye. I have 6 children, one of which is 14 years old and profoundly deaf, we communicate via sign language..so losing my eyesight would be quite difficult to communicate with her as my right eye has extremely poor vision.
Has anyone else had this type of aneurysm and if so which procedure was performed?
I just wish things would move a little quicker, knowing you have this in your head is concerning. I am of the feeling, you know it is there and something must be done so just do it so that I can get on with things. As you can tell I am not a very patient person and just really want this dealt with.
I am so happy to have found this site, I see that you are all very supportive and have a wealth of knowledge. Bless you all.
Hi Caroline and welcome, I cannot comment on your type of aneurysm I had two one burst in February 2011 a very scary time the second which was found at the time of the first was operated on in March 2012, the waiting was stressful knowing that it might burst at any time but it is now coiled and stented and I have never felt so positive about my future, I hope your upcoming angio goes well and this will soon be sorted out for you, you have come to the right place for help and support we all understand what you are going through Jill xxx
Hi Caroline...like you from the time my aneurysm's were found and actually had my coiling...it was almost 3 months...I felt like you...by the time I had surgery...I was ready to get this show on the road...but you will learn patience...because the journey is long...I think you are going to a wonderful facility "John Hopkins"...so keep it positive about your eyesight...
Prayers going out to you...esp for your appt...let us know what they say...Cyber~prayers and thoughts ~ Colleen
I’m sorry to learn of the challenges you are facing with such a difficult aneurysm and your concerns about your children .
One thing we can all tell you if you are lucky enough to find an aneurysm before it bursts, having some patience when evaluating treatment options, selecting those who will treat you, making arrangements for the care of your children during convalescence, etc., will be a blessing to you.
May you be blessed with a competent and caring cafe team and the resources to care for your children while your convalesce.
Thank you all for your replies and support. Paula thank you for the letting me know of another option, glad to hear yours went well and that you are on the road to recovery. I will look in to this and speak with my Dr. about this option.
I am extremely lucky to have a great support system in place for myself and my children. I feel very confident in my Doctors which is so very important. Now I just have to work on being patient. I do feel very lucky to have had my aneurysm found this way and not once it has ruptured. This way I get to pick the Doctors, Surgeons, hospital and get everything in order before the surgery..for this I am thankful.
This site has been a wealth of information and very helpful in helping me understand what I am dealing with.
I had mine in my right carotid artery, cavernous sinus segment. Had all the same tests..but, couldn't decide what to do until I finally had the angio which showed it had grown out of the cavernous sinus and had a baby annie on it. Made it much more urgent to treat. I also had the PED that some have mentioned below. I had contacted Dr. Coon, I consulted with 5 doctors and all but one said they needed an angio to see the better picture it affords. I did tons of research, and I mean TONS. Walked into each office with a 4 inch think file of study's, research, pictures...drove my family nuts, but I was PREPARED. Dr. Coon was my second choice, had an appointment with him, but canceled as it was just too far to travel. Went with the #1 doctor I first saw, but had a few missteps with his front office, so lost confidence. But, after all my research, I went back to him. However, I would have felt fine with Dr. Coon. He has a great background and is with Hopkins! He just did a Pipeline on another member on here, I just hung up from a conversation with her husband, and she's fine! I can't speak to your specific issue with your eyesight, but Dr. Coon is top notch. Of course, I think my guy is too, and I will go wherever he goes. He saved my life! Good luck to you, and don't hesitate to ask questions. I even tape recorded the doctors (they weren't keen on that, but didn't tell them till after! Used my smartphone! Was afraid I would forget what they said, and my husband couldn't go on all the appointments!) Be an informed patient, that's the best advise I can give you. And if you're not comfortable with what you hear, get a second and even a third opinion if you need to. It's hard, but I am glad it's behind me. Have my 6 month angio coming up in July to see if the PED did it's job. I feel great and am thankful to be alive!
Hugs and prayers going out to your during your journey.
Had my angio yesterday and all went well. The angio took over 2 hours and it took them 60 minutes to get the bleeding to stop.
I have extensive bruising, wrapped around my thigh and even my pubic bone is purple. Did anyone else experience this type of bruising? Laying perfectly still flat on your back for 6 hours was challenging, never realize how much you move until you are told you can't.
I go for the results and to discuss surgery on 6/4/12...hate all of this waiting, it seems as though everything is moving in slow motion as I wait to find out how we will be dealing this.