I am so happy to have found this group. When you get a life changing diagnosis it is comforting to know you are not alone in your fears and concerns.
I received my annie news a few weeks ago after having an MA to try to determine my sudden sensorineural hearing loss (another story) and dizziness. Neither my neurologist or my radiologist noticed the aneurysm. I had asked my neurologist if I could look at the MRA, he was explaining the brain to me when I innocently asked what the berry looking thing was sitting at the joint of two veins. He said it may have just been a blob in the imagery. I didn't like that answer to much and asked to see other angles. It became clear it was something more. I insisted he call and talk to the radiologist which he did. The radiologist came back with a 6mm aneurysm. My innocent bliss was suddenly gone. My neurosurgeon specializes in the coil but is concerned the neck is too big and the vessels leading to it are too small for a stent. That would leave clipping which terrifies me. He also said you could just leave it and watch it. I can't help but wonder if it is a time bomb just waiting to go off in my head.
Where do you start to find the best neurosurgeon. I'm willing to travel anywhere in the US. Any thoughts or recommendations would be greatly appreciated.
Hi, I was diagnosed in September & had my coiling in November. My Dr was Robert Breeze in Aurora, CO @ CU hospital. My dr gave me the choice of coiling or clipping. While clipping is much more intensive & has a longer recovery it was the option my husband & I chose.
It has been a roller coaster experience both before & after surgery but this group has really helped me.
Good luck, keep asking questions
If you look up top and click on BAF website...there is more information on Brain aneurysm's and many Doctors through out the country that are the Board Doctors...that may be a start...also, if you have a Doctor whom you really respect ... call and ask...if it was their spouse, who would they go to? if this isn't an option...I am sure there are many good qualified surgeons in California...others here have gone to one's in California and hopefully will help you out...~ wishing you a good day ~ Colleen
It sounds as though you missed your calling in life, since you located something that a Radioligist did not notice nor did your Neuroligist think twice about either..wow! Impressive!
Evidently your Neuroligist hasn't referred you to a Neurosurgeon (or if he has the Neurosurgeon wasn't suited to your particular situation-)-whatever the case is, how is it that you found the Neuroligist, was he referred to you by your General Practitioner or your insurance company? and depending upon where you reside, well, there are many excellent Neurosurgeons out there -- and at 6MM, I'd think that you would want to have this taken care sooner rather then later (or the watch and wait scenario--I can't imagine at that size of an annie,, how a watch and wait consideration was even on the table or considered an alternative means of dealing with this..)?
where do you want to be treated? some of us need to travel 'outside the box' for our aneurysm issues, but most of us don't have to travel that far away from home, not typically at least. Anyone here who has undergone a clipping surgery (or two or three of them), has a name and number to their surgeons office, so getting those names and numbers shouldn't be difficult. What you didn't mention is, where is your aneurysm located (which artery) and do you have a copy of the MRA on a CD (That way you can send it to any qualified Neurosurgeon before you make the jaunt to his/her offices), and lastly..has anyone been able to help clarify whats going on with your dizznesss and hearing issues? Best of luck to you in your quest Michelle, fortunatley you're a good study otherwise this may never have been found until a disaster made it well known to all. Peace to you, Janet
Thanks Janet for your reply. It is a 6.0 mm anterior communicating artery aneurysm. Both my ENt and my Primary care Dr referred me to a neurologist because of the passing out/dizziness. It's weird though in that happened back in June, fainted a few weeks later and again a week after that but NO episodes before or since then. My neurologist referred me to a neurosurgeon here in San Diego that only does the coil, it is his specialty. He did put the watch and wait scenario on the table, said it may never rupture and was considered small. I have an angiogram scheduled for the 13th to see how big the neck of the aneurysm is and the vessels leading to it. If I am not a candidate for the coil (which is likely) then he will have to refer to me a neurosurgeon that does other treatments. I am waiting for them to send me the copy of my MRA. I work for Southwest Airlines so can travel anywhere to get the best treatment.
The hearing loss, passing out and abnormal EEG have all taken a back seat to this.
When I found out that coiling was not a good option for me, I asked the Neurosurgeon who he would recommend. He gave me several names. I also researched top docs in my state. I contacted several people in the medical field for recommendations. I also talked to people that were going to specialists if they could get recommendations.
After choosing several doctors, I made appointments to "interview" them. I went with a list of questions. My husband went with me to all appointments. We would sit down afterwards and discuss their answers and our opinions of them. After a successful surgery and recovery, I am VERY happy with the surgeon I chose.
My doctor was Dr. Laligam Sekhar at Harborview Medical Center, Seattle WA
I would suggest Minnesota Neurovascular and Skull Base surgery in Minneapolis, MN Dr. Eric S. Nussbaum he is a neurosurgeon but has a partner that does coiling. I think every survivor would speak favorable of his/her Dr. In hindsight I would have been better off foregoing the first coiling at another hospital and neuro interventional radiologist and gone straight for the clipping and bypass of a Giant RMCA aneurysm due in part to the wide neck that it had which could never be totally occluded because of the wide neck. A second opinion is always a good idea. A tip I can give you is to always make sure that your insurance company pre-approves additional MRI/MRA or CT scans well before you arrive to have them.
A second tip would be to always get a copy of the CD and radiologist report for your records. I do this and take the most recent ones with me when I travel in the event I would be involved in some type of accident or pick up a virus of some sort.
Michelle, welcome....and, it is amazing...so pleasing...you saw and brought forward your questions to the specialists...you are, you were, blessed...
A member, Tony Perricone...(sp?) had an ACoA aneurysm...and, pictures here on site...you may want to connect w/him...think it has been a few months since he's been on here...
Later on, this year, I will tell my story of my ACoA...not the home of my natural aneurysm...
The open surgery/clips have apx 5 decades of history...coils have limited hx...however, a chunk of current hx is the compaction of coils...requiring more coils be added...For each addition, f/up is added...which means far more radiation and contrast dye (agents, materials, medium) in our systems...
In this forum...I have so promoted Two Books that are on the BAF main site pages...
In "ask the doc" of this forum, 02/19/13 I began asking about radiation and contrast dye...including gadolinium in MRAs...
The hx of coils...the initial design was geared for use where open surgery was essentially impossible... Over time...highly marketed as minimally invasive...quick discharge/far lower cost...
Michelle...I have no expertise at all...just experiences...of the minimally invasive...I expect to soon post an image or two...
Prayers for your comfort and right decision for you...
It was a pleasure talking with you in the chat room today. The timing that I came on while you were on was perfect. Here is the link to my surgeon again just in case you didn't save it. http://www.scripps.org/physicians/6651-rene-sanchez-mejia-md What a small world that you are already seeing Dr. Olson at Scripps Green. Please keep me posted and I will also keep you up to date on the support group as it gets started. I am looking forward to it. Prayers are going up for your angiogram. Also, please let me know if you have any questions about the angiogram - would be happy to help. I know I was quite nervous about the angiogram, too.
When I had my Annie, I was living in AZ, to me, the best Neurosurgeons are at Barrows Neurological Center. I was flown there when mine ruptured. I was there in ICU for 3 weeks, my doctor was Dr Mcdougal who did my coil, and than his partner, Dr Alburquque placed my shunt. It will be 2 years on 2/18, a day I will never forget. But without this team, and God. I realy don't think I would have been here today.
Let me know if I can offer anymore info. All the best to you Michelle.
On Feb 14th I had all three aneurysms clipped. I am recovering well and so happy to have made the decision to treat these. The surgery took 6 hours and went well I am told with no complications. I was in the ICU for two nights with one additional night in the hospital and home on day 4. Get educated, stay strong, pray and hope and keep the faith. There is life after this diagnosis.
Thank you SAndra. I too have heard great things about Barrows. I was fortunate to find a very good neurosurgeon here close to home and had the clipping done last week. So far everything is good. Thank you for your reply
So happy to hear that all is going so well for you with the clippings. What is after care with a clippings? Sorry to say, I'm not too familiar. Take care and stay strong.
Hi and thanks for this reply, I don't have a date yet but was diagnosed with an annie on Feb 14th, go figure. It is life altering for sure but I am keeping it is perspective. I know once I have a surgery date set I will then be very nervous.
Glad yours went well and you make me feel better about it.