michael, I can't answer your questions unfortunately, I think it's best to take advice from the neuros on risks since they deal with these all the time. My anterior comm artery aneurysm was 8mm when it ruptured. I found out I had 3, two have been coiled and one is being watched. I'm female, was 44 when it happened in 2013, was a smoker with high blood pressure (which are risk factors for rupture).
Hi Greeter...
sorry, I'm not sure I know your name and maybe I missed it. Thank you, so much, for your reply, and I'm sorry if I missed anyone else who replied...please do not blame yourself...since I have let people know what is going on with me, people have been telling me their stories...one lady at work, in HR, alyson, told me she had an avm and had surgery at 17, so, for all we know your situation is congenital as well. I'm so glad you had two coiled, so sorry one ruptured...so glad you are here telling your story and I hope the other one never gives you trouble or you can have it taken care of right away and that things keep getting better for you!
I just heard back from the barrow neurological institute, the center with the largest neurosurgical volume in the world and the #2 ranked training program for neurosurgical residents, and the #8 neurology facility in the united states according to us news and world report. for $100, i sent my images, all three test reports and the vice chairman of the neurosurgery department, dr. albuquerque, reviewed my information and sent me a second opinion...he suggests a cerebral angiogram to be definitive on whether or not there are one or two aneurysms and to be sure about their size.
I am beyond pleased...they sent me the second opinion in four days, including saturday and sunday...their normal turnaround time is 7-10 business days! I highly recommend this program to anyone and I say my prayers every evening and morning for everyone contemplating treatment for or recovering from an aneurysm rupture. This second opinion will help me so much in making the case for a cerebral angiogram with my HMO...I have 2 high priority referrals in for a neurosurgeon, for the anuerysm(s) and a neurologist, to rule out MS and other demylinating diseases which my MRI could not exclude.
Peace and love and God Bless!
Mike
I agree with getting an angiogram, it's a pain having to do it, my last one I was in hospital for the day, but it will give the doctors a better view of things. I've seen mine on the neuro's computer screen and it really was amazing the detail you could see, I could even spot my coiled aneurysm (the one that ruptured). good luck
ps. it really is amazing how many people know someone who has had an aneurysm when the subject comes up
sharon g
Thanks so much sharon for the words of encouragement...i want to see the detail and to know exactly what is going on...peace and love to you!
Hi Everyone...
Just an update...just got back from the neurologist and he diagnosed me with Multiple Sclerosis...I guess I will have to find another support group for that and I have my sister for support as well. Please pray that I get better news about the aneurysm(s). Thanks so much and and best wishes to all!
Mike
Mike... you have an added challenge...prayers for you in each step...
Did your neurologist address the anatomy/proximity to your aneurysm area...Also please remember a f/u w/Barrow on their response to you...Wishes and prayers for each of your steps...
Michael Kirk said:
Hi Everyone...
Just an update...just got back from the neurologist and he diagnosed me with Multiple Sclerosis...I guess I will have to find another support group for that and I have my sister for support as well. Please pray that I get better news about the aneurysm(s). Thanks so much and and best wishes to all!
Mike
Thanks so much patioplans...
Just logged on and received your message.
Wanted to update and say that my primary care doctor approved the cerebral angiogram...we are so relieved that we will know what is going on...still have to wait to get scheduled for the test and i will update everyone after the results.
enjoy your day and weekend!
Please keep us updated!
Michael... thanks for this update... Recently (not yet complete comprehension)...
The words/terms: "cross-filling"...(not filing...that readily pops up online) and "intracranial pressure" (ICP) .. A sentence in a record: "left anterior circulation demos several linear defect noted in multiple projections in secondary branches of L MCA/L ACA which likely represent emboli/thrombus...No additional aneurysms or focal narrowing." Further on..."ACOM has no aneurysms"...
Much later..."ACOM is not present" I will have a small ruby (or garnet) placed on my pendant...
The questions I suggest (I have no expertise...it takes me a long time to select stone color)...is asking your neuro-rad docs...about "cross-filling"and "intracranial pressure" (ICP)...and how they monitor / check that status...during angios...or by ultrasound or other procedure?
Prayers for your next steps...and, please keep us updated...
Michael Kirk said:
Thanks so much patioplans...
Just logged on and received your message.
Wanted to update and say that my primary care doctor approved the cerebral angiogram...we are so relieved that we will know what is going on...still have to wait to get scheduled for the test and i will update everyone after the results.
enjoy your day and weekend!
Michele said:
Hi Naisy,
Another point of advice: I would go to the highest ranking hospital and most experienced neurosurgeon that is closest to your home. I must say it is not ideal to have had the procedure in New York and live in DC. I cannot simply run to the neurosurgeon if I complication emerges. Everything is done remotely, which is not ideal.
Why clipping over coiling? I was told by all three neurosurgeons that I consulted at Hopkins and Columbia that my aneurysm was too small for coiling at less than 3mm, as there is no margin for error should the catheter "slip", or just mess up. The risk is that the catheter itself could cause a rupture, which would be hard to fix quickly. All three said that the clipping was the safer option in my case. I have seen literature as well saying that there is a higher risk of rupture when coiling a small aneurysm, although I do understand that the small ones are also coiled.
Regards,
Michele
Michele,
Your advice makes so much sense, except here in Boston. The highest rated hospital is Mass General and the doctor I saw, who has a good reputation, is no longer there, he is now at a much lower ranked hospital, Beth Israel. Unfortunately, I have had atrocious ER experiences there, which adds another layer of uncertainty to the process.
Hi Again,
US World Reports ranks Mass General as number 2 in the country for neurology and neurosurgery:
http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery, with high patient safety ratings. I see Beth Israel's rating is lower, and patient safety is 1 of 5. Just on face value, I'd go with Mass General. But of course, you must have high confidence in your doctor and their facility.
I would ask what is the volume of aneurysm surgeries per year, as high volume centers are shown to be far safer.
In terms of your bad ER experience, I am not sure which hospital you are referring. That said, I personally don't feel you should let a bad ER experience serve as the only measure of a hospital's competency. I have found Columbia has an awful ER, but their neuro unit was very good. Big hospitals will have good and bad departments.
Good luck!
Michele
Michele,
Your assessment is right on. Yes, the patient safety record is a concern of mine, also nocosomial infection rates.
You are right the ER is a different place than the ICU for instance, but it is hard to forget ill treatment. My age is a big fear factor for me-I wish it was easier to compare doctors and facilities.
Updating everyone, as promised...
I just had the cerebral angiogram yesterday and the interventional radiologist told me I have an AVM. So, I will probably shift over to that site for support lol. It has been a pleasure chatting with and getting to know some folks on this site and I wish everyone continued improvement and joy in your lives! I want to thank you for your genuine caring and support during my time on this site.
Be Well,
Mike
Just to follow up...
I was also diagnosed with Multiple Sclerosis on September 30...I mention this, since I mentioned wanting to rule out MS in my original posting and I wasn't sure if I had shared. We hoped to rule it out, but grateful for a diagnosis as early as possible and now I can deal with it and do what I need to do.
Be Well,
Mike
Michael ...thank you for your updates...I think there is an AVM Group here...
And, of course, the MS organization(s)...think I mentioned to you, my one long-term friend was diagnosed w/MS before she turned 40...and, she has done so well...And, she is a fanatic on 'fermented' food...
Regards and prayers for each step...and, I do hope you will keep us updated... and, if Barrow is involved in the AVM a/w/a Annie's...I rather presume a yes on that...
patioplans
Michael Kirk said:
Updating everyone, as promised...
I just had the cerebral angiogram yesterday and the interventional radiologist told me I have an AVM. So, I will probably shift over to that site for support lol. It has been a pleasure chatting with and getting to know some folks on this site and I wish everyone continued improvement and joy in your lives! I want to thank you for your genuine caring and support during my time on this site.
Be Well,
Mike
Good luck Michael! I hope you get the great care that you deserve!
Best of luck to you, Michael! Sending you positive vibes that you will find great care, get the required treatment and that you will feel well for a very long time to come.
Michael Kirk said:
Just to follow up...
I was also diagnosed with Multiple Sclerosis on September 30...I mention this, since I mentioned wanting to rule out MS in my original posting and I wasn't sure if I had shared. We hoped to rule it out, but grateful for a diagnosis as early as possible and now I can deal with it and do what I need to do.
Be Well,
Mike
Thank you for this link!