When I was 8 years old (1979) my father died from a brain aneurysm due to improper care and medical attention. At the age of 23 (1995) I survived a rupture and had no reprecussions due to expert care at Swedish Medical Center in Englewood, Co. I am now 41 and have just been diagnosed with another brain aneurysm.
The ER doctor at the first hospital said it was a 7 mm x 6 mm x 4 mm located near my other annie and felt that due to the it required immediate attention. Since I have Kaiser I was transfered to their facility. They did a LP and thankfully did not find blood in the spinal fluid. The ER doctor at Kaiser then sent me home. I have spent the last 3 days trying to get in to see a specialist and trying to find out what is going on. The soonest Kaiser's Neurosurgeon can see me is 10-19!
I have seen my gp who has advised me to be extra cautions- no exercising, coffee, alcohol, nothing to elevate my blood pressure. He has also put me on blood pressure medication. He explained that the annie is located in the proximal right postrior communicating artery (no where near my original annie, which was behind my right eye). The diameter is 8mm. He explained that it is not a typcial shape but rather the entire walls of the vein have stretched. In '09 I was told there was no treatment for this type of annie. Has anyone had anything similar?
At this point I have very few answers, why did the ER docs talk about two different sizes? Why did the ER and GP each say they were in different locations. This is very frustrating!
As if worrying about myself was not enough, I have two small children ages 1 and 6, the thought of not being here for them panicks me!!
Fortunately I have point-of -service plan that UCLA Medical Center accepts, this is where I did the follow up following the clipping of my first annie. I am trying to get in to see someone there and hoping to get my answers soon!
Hi Natalie....wait until you see your Neurosurgeon...he/she can usually tell exactly location, size, type and treatment...The surgeons see the aneurysm's much more then the ER Docs and Gp...sometimes the best test for surgeon...will be angiogram...I know it is hard waiting, but your Gp gave you good advice ...
hi Natalie- hang in there-i hope you get your medical attention soon, my heart goes out to you, this must be most difficult for you in light of your fathers early passing-but remember soon it will be fixed-think positive that their course of action will result in 100% success. I know it's hard to do but you can do this! Be strong and take care to not smoke or strain like the drs said,Our thoughts & prayers are with you. Praying now for quick successful medical service to ease your worried mind! Please keep us posted when it is appropriate to do so. Hopefully I'll stop being worrying about my issues since they are minor in comparison. Thank you for taking the time to share-we are here for you!
Praying you get an appt. soon. Knowledge of what is going on will help you right now not to worry so much. The neurologist should be better at letting you know location and if operable. I saw one neurologist who did not think mine was operable, went to Emory and the neurosurgeon said "piece of cake". I had clipping done 10 yrs. ago. I know when they say inoperable that is scary. MIne was behind my eye and wide necked. The first clip he used didn't work, so he tried another and it did. Keep trying to find the right doc and we will pray God leads you to the right spot where insurance will cover. You have come to the right spot for help. Keep us posted.
So, I'm not so sure how this works, but I hope everyone who
Replied to my first post will see this. Thank you to everyone for their well wishes and prayers. I definitely feel them. I saw a Neurosurgeon today and found out my Annie is in fact 7x8x4 km which incorporates the origin of
The right communicating artery. Basically it is one of the main veins supplying blood to the brain.Unfortunately he does not do coiling so
he referred me to two other Neurosurgeons that do.
I asked what could be done if coiling would not work and he said they can close off that vein and graft a new one and hope for a full recovery.
I also asked about the likelihood of this rupturing. He let me know there was a study that found anything under 10 mm typically did not rupture.
He added that most Neuros don't believe it because you can't measure
The volume or pressure of blood inside the Annie. He told me I should keep
my blood pressure down by not getting too happy or upset.
I am so glad that I now have more answers. Surgery is certain, the type has yet to be decided. My next appt. With a NS is 10-19. I'm still also trying to get in to UCLA NS. For now Im giving lots of love to my babies. I will keep you all posted.
Denise, thank you for sharing your story. Thank God for advances in medicine. I can’t even imagine what it would be like walking around with a 10 mm annie! What does PED stand for?
Natalie
Thank you. You were right I saw a Neuroradiologist at UCLA last Thursday and he mentioned that he could do PED. He is reviewing my records to see if it has grown since '09 . Due to the location and the fact my father died from an Annie and I have had a rupture he will discuss PED even if it has grown .5 mm. How are you? Do you recommend the procedure? I'm thinking it is better than full surgery or no treatment. I'm just so glad there is something they can do!
To update everyone, I was able to see a Neuroradologist at UCLA and he was able to tell me PED will work. The moral of he story, don't take no treatment for an answer! There is hope! The Doctor is reviewing my records t see if it has grown in the past 3 yes. if it has we will discuss risks and benefits of PED.
Natalie, that is great news.I am fine. I am having some problems with the plavix and aspirin that I need to take for 6 months. I have terrible bruisiing and I am tired when I do to much. Too much as in not normal too much.You will see lots of information on the PED page. Remember too that there are hundred and hundreds of people that have had the procedure and are nOT on the sight..my dr. says STAY OFF THE COMPUTER INFORMATION, but..this sight has given me info my dr. passed right over.sincerely, Denise ■■■■■■■■■■■■■■■■■■■■■■■ email me if you would like.
Thank you so much for the information and further direction. I'm sorry to hear that you get tired easily and are having problems With the meds. I was thinking the surgery sounds too good to be true, but I'm glad there is something. I was trying to find the recovery time, what was yours?
I’m excited that you are able to get a pipeline! I’m 8 months post pipeline and my aneurysm is totally gone now. Only med I take now for it is a baby aspirin daily. Good luck with your procedure. Did you set a date yet?
Hi Natalie...this is so much the journey of annie's...and I am not sure I understand why? When they find them...everyone (hospital, Doct's, etc.,) seem to panic, but then it takes forever to see a Neurosurgeon...it is frustrating...and you will see many of us encountered what I call "the system"...just be safe...then sorry...it is good you have a GP to help you and any changes immediately go to ER...
I could not agree with you more! When I had my clipping in Colorado back in '95 the doctors would not even allow my family to enter the room I was in because they had stated that my brain would know that they were there and it would make my brain active and they wanted it to completely rest.
That was so nice of your husband to sweep you away. I have a 6 year and a 1 year old, so I won't be able to have a sheltered recovery, however, I have a great family support system. I found out the aneurysm has grown " a few mm in the past few years " so my doctor has scheduled an angiogram next Tuesday. I should have more info on how we will proceed after that time. I hope you are feeling good and doing well.
me too!! As of now the doctor has confirmed that is has grown so he has scheduled an angio next Tuesday to get a better look and determine an appropriate course of action. I will keep you posted!
I am not sure if you are able to see my replies to others, if you have this is repetitive, but the doc has determined it has grown a few mm in the past three years so he is concerned. He is doing an angio next Tuesday to determine the next steps. I will keep you posted.
How are you doing. I saw a recent post that looked like you were having problems on the side of your brain that has the coiling. Did I read that correctly? Did you have a new coiling or is it not uncommon to have those sorts of problems post coiling?
I am writing to update my post- hopefully this is the best way to accomplish that goal.
As people on this site recommended I did not take "no" for an answer. I kept pushing until I got in to see a Neuroradiologist who had answers other than, "there is nothing we can do". The Neuroradiologist has viewed all my CD images from scans in 01, 08, 09, and 12. He determined that the aneurysm has grown a few mm in the past few years. SIGH. He is out of the Country now, and will be back next Tuesday. My angio is scheduled for Tuesday at noon. We will determine a course of action after that time. I will keep everyone posted!
