Brain aneurysm is a very scary couple of words for us. My cousin had one a few years ago. Thankfully she is doing well now. Our son however had a different outcome. At the young age of 22 years old he passed away December 8, 2011. Shocked, sad, don't know how to do this. How can an a 6'4" healthy young man just be gone like that? Still can't believe this happened and want to make sure it does not happen again to our family if we can. I do have a question about testing though. We asked the doctor if we and our daughter should be tested and were told they normally only do that after there has been 2 close family members that have had an aneurysm! I am sorry but I dont' think one should wait for a second one. My cousin is actually my second cousin since she is the daughter of my first cousin. There has also been strokes in our family. Apparently we can get tested if we wish but insurance may not cover it?! Any advice? Exactly what kind of tests should be done?
Again, Lori ... please accept my condolscences ... I can't even imagine what your family went through and continues to go through with the death of your son...~ So many here on this site are working at getting out information to Doctors, Lobbyist, etc., for more people to be aware of Brain aneurysm's and looking for them...
I am the only family member who has an 2 aneurysm's...one coiled and one watching and waiting...my neurologist told me right away that had I had children they should be each checked with an MRA...(why not just a cat scan?) I had 2 scan's that showed nothing because it doesn't show the area where my one annie was located...basilar artery...only MRA shows all of the arteries, etc., that being said...Neurologist told me all of my sister's should be checked esp one that suffers with migraines most of her life...
I am not sure I understand about the 2 member theory...who is the Doctor waiting for to get another annie and be that member? I would get a 2nd opinion...and insist of them getting this done for you and your daughter and somehow getting the insurance to pay...~
Cyber~thoughts and prayers your way ~ Colleen
Thank you Colleen for your reply. I am learning very quickly to not trust doctors. I hate that because my mom is like that and it really bothers me but I understand her frustration. Even when we were in the hospital with Michael we were given so many different stories about what was going on. I will not let go of this one and pursue getting a MRA for all of us. It reminds me of before we had Michael we had a baby with anencephaly who of course did not live. Soon after that their were reports about how women should take prenatal vitamins before they get pregnant to lessen the chance of neural tube defects by 20%! Hello! Why doesn't every women of childbearting capabilities know this! My daughter is married and taking her vitamins and I have told every young lady I know but this should be common knowledge if it can help prevent this!! I feel this aneurysm thing is just like that. People should know about this!!! Thanks for listening and your help!
Sue,
Thank you for your prayers, we really do need them. This is the hardest thing ever! I will pursue another doctor and get my daughter and ourselves tested. My brother-in-law also had a stroke last year so I am sure my husband would be up for any testing that may help. I will not wait for this to happen again. Thanks for the support and advice. The doctors make you feel like it is not needed quite yet but I feel differently and will make it happen. Thank you!
Thank you Sue. I am going to a Vein care specialist tomorrow for a blood clot that I have. Maybe he will be more willing to understand the need for doing more than my general practioner did! Wish me luck!
Lori--words cannot express how your post impacted me---right to the very core- I am very sad for the loss of your Michael...I hope you are finding the strength to continue on....
I agree with you---2 member theory...??? What B.S.- I wonder how many Doctors would say that if it were their children/family that was impacted...
I, too, have learned (more than I ever cared to know...) about insurance and the medical profession, Dr's in particular...my personal opinion is that it seems like that, while they can make an educated guess to certain things, alot of it is "out of their control" so to say.....Prior to my aneurysm rupture--I had never heard of an aneurysm, or never really paid attention and processed it...As you well know- they are deadly and strike "out of the blue"....It is my opinion that genetics plays a huge part in these types of ailments---I think you are born with them---just my opinion
I agree with Colleen---you all should be checked and try very hard to get your insurance to pay or work out some discount with the hospital/facility doing the scan
My prayers are with you--Dana
Dana,
So true! If it was the doctor's kid you better bet they would be testing their surviving ones and themselves! Makes me angry. Thanks for the encouragement. I have one beautiful 26 year old daughter left and I will do everything in my power to make sure she stays healthy! I can't ever go through this again. I believe genetics has a big part in this also. Michael never had any head trauma, headaches, high blood pressure or any symptoms whatsoever. Keep the prayers coming, I am a believer! Thank you, Lori
Lori, I am so sorry for what happened!
My Dr. said that I was most likely born with this and that my daughter, son, and brother should have an MRA and wrote a prescription for this. I am about to write to my family and let them know about this, so they can decide to get tested or not.
Lori - my heart aches for you. Know you are in my thoughts.
My mom has had two unruptured aneurysms clipped. My dad has lost one sister to a rupture and has two others living with multiple anuerysms. As a result my dad, sister and I were tested. I found out I have one that will be clipped next month. My neurosurgeon told me that my kids should be tested when they are older (they are just one and three now).
I hope you are able to get the testing done. I think it is so crutial. Keep fighting!
Take care.
Lori, my sincere condolences for your loss of Michael; I think you are in my memory; that your son was in FL and military-related. Please forgive my not grasping names.
It is so hard to comprehend the genetics issue...it seems that the genetics study (apx 2005?) that was done should have been able to name/define certain tests for genetics before scans would be needed of the brain... just please remember that I have no scientific expertise.
Do you know the history of family who had strokes? My neuro had recommended to my sisters that they have tests; and, I was the only known family member of aneurysm. It seems like there should be some adjustment based on the size of families for the insurance p[olicies to cover.
The type of test...CT/A, MRI/A, angiograms...usually only after one of the tests indicates more is needed...
If scans are the only reliable source, please think of potential symptoms; i.e headaches, migraines, visual floaters, any pressure behind either eye intermittently; lines of print crossing over one another, any unique or adjsuting sensations; derm issues that are newer; TMJ and any other symptom(s) that have developed; i.e. after exercise/ sports, any minor head injury (i.e. MVAs seeming insignificant), for a fall or bump... and any others that comes up in your thoughts.
Even tho stats say broadly there are few to no symptoms before the "worst h/a" , I have a hard time w/it; i.e. I never had the worst headache when I blacked-out; worse, was not tested at all in emergency; and, PCP f/up of emergency was worthless. It took two more emergencies and major rupture before a basic scan.
Have you reviewed your policy and/or have you called your insurance company re: potential test and how the genetics restrictions are based on the size of families. If your insurance refuses to pay for it; negotiate the price w/your md/facility...When facility/clinic negotiates a contract w/insurance companies, they provide the full rate fees; the contractual negotiations/acceptance results in apx 30% of the full rate...All this does help the employment rate of our country; however, not necessarily those paying premiums. Please remember I have no expertise in this; however, I do have my records on the full rates and paid amounts.
Prayers to you and your family for your recovery of the loss of your son, and in advancing your testing with support of your doctors re: small family limitations based on the history number of genetic potentials.
Pat
Dana...does BS mean the business standard of med managmeent?
My personal opinion is that the weak area of an artery wall where a tiny neck of an aneurysm grows has to be congenital or familial genetics. It makes no sense to have essentially perfect arteries in all the diagnostics except the one with a 3/16ths of an inch weak spot where the neck of the aneurysm is...Yes, some people have multiple aneurysms, but essentialy the same would apply.
There are some books, a/w/a websites, that address the issues of weakness in the artery walls where they bifurcate or branch and where most of the anurysms are. However, I may have misinterpreted medicalese... in forming my personal opinion.
Pat
Kim,
Thanks for your story. I will not rest until I know we are all ok. It is so sad to lose a son so young and so unexpectedly. I will continue my fight today and make sure I am educated and informed of all our options! It is so helpful and reassuring to read everyone's replies. Makes me know I am not being a paranoid mom! Doctors sometimes treat us like we won't understand. I happen to be a biologist, I studied anatomy, physiology, hematology.......................every ology there is! I understand exactly what they are saying and what they are not saying! I will fight on!!!
When I had my rupture the docs told my family that both of my kids should be tested, especially after they found out I lost a brother from a rupture aneursym & a first cousin. Also, they said that annie's do run in families, & all of my brothers & sisters & families should be tested. I am so sorry about the lost of your son. Thinking of you & your in my prayers.
Aggie