We all have stories to tell…each is different . but there are is not enough information out there and what is is very misleading…most aneurysms are NOT the old and infermed…statistics show most are women(not that the fellows are’t affected too) but are women between the ages of 30 to 50’s…there needs to be faces put with this…and more needs to be done with research…most here would gladly participate to “educate” the physicians…cause they don’t know it all…no matter how GOOD they may be…How do we go about getting this issue out there…??? we…as survivors can help to educate the public…and the Dr.'s…SOOOOOO I am challenging everyone to e-mail shows…send letters…contact local news…what ever it takes…to get this out there…who is with me???
Judy…it will take a lot of effort…forwarded Awareness and Texas…there are some others, too…remember one from CA and another from Michelle in Texas… so hope you can all coordinate / share ideas… for educating the public…
judy, im with you i tried a year ago,but never got anywhere read my old blogsand i still agree with the blog about guinea pigs you were right on the money.letme know if you come up with something thanks linda
Hi Judy...my neurosurgeon has been working on a "study"...for annie's...it is done in May of this year... I participated...they took my DNA...and the questions were pages long...although I think it is good to find causes for the annie's...I find there is not enough out there about what to do to get help...ie., finding correct Doctors...and once you decide on a process (surgery) for the annie...all the effects...I am still at a loss why Doctor's don't see a pattern ... I am dealing with this since Sept...2010...and I see so many similarities in all of us...not "rocket science"...
Colleen
Hi Judy,
Can't agree with you more. That's what we here at The Brain Aneurysm Foundation try to do everyday, get the word out, make people more aware.
Dr. Oz just did a show on brain aneurysms where he featured the stories of young women affected by brain aneurysms. We were able to help them find guests, one a young woman who had lost her 33 year old sister to an aneurysm, as well as two survivors from one of our support groups. It was great to be able to reach so many people with such an important message. Dr. Oz had also done a previous show on aneuyrsms.
We released a video "Early Detection:Life or Death" aimed at educating the medical community about the symptoms of brain aneurysms and how to screen for them and detect them before they rupture. We shipped over 4,000 copies to every hospital emergency department in the country. We are investigating new avenues to continue to educate the medical community so that the proper diagnosis can be made effectively.
Each walk or event across the community promotes awareness. We work closely with walk organizers to help publicize awareness of brain aneurysms in their community.
These are just a few of the efforts we are working on here. We are a small foundation and we couldn't do what we do without the assistance of people like you and all the wonderful people in this community.
I am…do what it takes
Colleen,
I am still looking for a Sully piloting the angiocraft who would select the correct arterial tracts for take off and landing...to set the right pattern for results...
We can pray for your study w/beneficial results...as so many of us have the results of current care.
Pat
Judy...I just read your recent message ...your status...and, I kept thinking / thinking...finally broke enough memory loose...how to look up a member...and I found this...We yet need so much promotion/marketing...
Are we ready to f/up on this?
Pat
Right now Pat I just found out I am going to have to have surgery on my cervical spine( that’s the top part of my neck) for pinching of my spinal cord so I will be down for a while…but I have sent messages via twitter and email to TV personalities and to Oprah and Dr. Oz…willing to help try again as soon as I am able…
Maybe when whe have these walks,car shows,dances etc. someone could call the local newspaper or tv stationsmaybe even the local town tv stations.
Judy...
I am so sorry you have to have one more surgery...when are you scheduled?
Did you have any success in the twitter and email?
Many prayers for your recovery of this next surgery...
Pat
Hi Judy, I have been thinking about this as well, we have just had a show aired about someone having a brain tumor and I thought maybe this is the way to raise awareness, get it onto a soap/big show that reaches lots of people, I am definitely with you on this one, have a good day, Jill xxx
Jill,
Some years back (memory fails)...there was a brief tv soap...a male annie survivor...ran for some months...and gone ... apparently limited interest...
I recently bought/read the books on the BAF main website:
Brain Aneurysm and Vascular Malformation by Dr. Eric Nussbaum
The Brain Aneurysm by Dr. Robert Spetzler and Vini Khurana, MD, PhD...
We so need to learn more...and spouses/partners/family/friends/associates/other professionals... those books can do a lot...I personally recommend Dr. Nussbaum's as the first...
Part 1 (69 easy-to-read pages) on Aneurysms; Part 2 (about the same page #) on Vascular Malformation w/cross-refs to aneurysm...I will be gifting it...including my eye doc, dentist, chiropractor, acupuncturist, massage therapist...any others come to mind...
We have just as much, more, to learn...as we hope family/friends learn...and of the treatments is so important (more so, in my personal opinion)...
It would be great if all members here (non-rupture)...having to make decisions would share with us, what written material (patient guide) and references were provided to them on their initial diagnosis... as they were entering their decision-making of their procedure...
Again, that book, because of its Part 2 on the other Vascular Malformations...likely in Dr. Spetzler's book and my memory has blanked already...We have had a few members w/other Vascular Malformations...
Pat
Hi Pat, it is sad but true that unless it draws an audience it is deemed unnecessary, what a shame, I have read the first one of these books but haven't read Dr Spetzler's book, I thought I had read everything there was to read, just goes to show, well I will keep educating myself and those around me and spread the message as wide as I can, there are no support groups/sponsored walks or the like here in the Uk which is why I come here to update my knowledge and get my support, have a good day, Jill xxx
Jill,
I finally ordered four books yesterday to begin my gifting...
Our groups are scattered across country...effective when in process...driving distance / weather that may limit attendance...So the idea, the intent, the time involved for the leaders...what they are so wonderfully giving /providing still cannot reach many of us city to city...and more...
However, I still have concern that the walks do not really provide much more than "brain aneurysm" to the public...Even when the BAF site has their annual walk-a-thon...I have not yet seen it w/mammoth media coverage... I have been so promoting those books...
May I ask you to share what the benefits were to you in having read the one... And, did you have it before or after you made your decision, had your treatment? Have you had family/friends read it?
Hugs and thanks...
Pat
Pat, I found it inspiring and informative to read this material. I was astounded when I was discharged from hospital with zero information, nothing to say what I should and should not be doing, some women on the ward with me had had a c-spine operation and had a large A4 30 page booklet to take home with do's and don'ts nothing for those being discharged after aneurysm surgery.
I first started reading these books after my first aneurysm burst in Feb 2011, I wanted to understand what had happened to me as my memory of that time was very, very sketchy, I was facing a second operation in April 2012 and it wasn't the books that made my decision to be coiled a second time but the fact that I had been coiled the first time and come through the operation with little deficit, I also had a stent the second time round as the neck of the aneurysm was quite wide. My family and friends have not read these books, I think they still find it distressing to think that they may have lost me when my aneurysm burst, I happen to think knowledge is power and I talk about what I have read all the time.
Here is another astounding piece of information, I thought I would try and get the second book from the local library so I searched on line to see if they had it in stock, they didn't and more so they only had one book on aneurysms and that was a fictional book, I went on to search libraries in the local area and none of them had anything on aneurysms, I guess I will have to ask if they take donations and donate my books to them.
I hope you have a great day, Jill xx
Jill...
Thank you so much...for your feedback on the books...and, for the 30 page book you note from your ward for spinal surgery discharge... Highly suggests spinal surgery is not marketed as minimally invasive...
On my DC for home health care (HHC)...the form listed dates/doc names for upcoming outpt f/up; aspirin, psyllium, nimodipine, (DC'd before it was done) and a page of hand-diagram of brain...Sections of brain noted as: Precentral gyrus; Central sulcus; Postcentral gyrus; Supramarginal gyrus; Occipital pole; Calcarine fissure; lateral fissure; Frontal pole;...in the center of the diagram... 41 & 42 Sup temporal gyrus; (Gosh, I do not remember any of these terms in the TWO BOOKS)...
Circled in blue ink: occipital pole and calcarine fissure... "visual processing"
Arrowed in blue ink...Left temporal lobe..
Arrowed, encircled in red ink: Sup. temporal gyrus "language center"...
Now...here in the USA...who could possibly expect more info for 24-hour HHC?
Of course, the "cognition" portions were not noted anywhere...nor encephalo-malacia...of that red-lined temporal lobe...
Family was given prescription for the nimodipine...two major pharmacies did not have it in stock...Family had to make another round trip to hospital for it...at $585 dollars... and the first delivery of it to me was delayed a couple of hours...
What more could a one hour speech therapists need?
The transfer form (10 pages) did note: allergic to iodine; "low-acid diet"..."hearing loss...hemorrhage in left MCA cistern...Left ICA aneurysm, Right visual field deficit and aphasia..." (I have decided the plural of stented is stunted...my "new life" has become Dilbert's secretary...An old classmate told me I write/talk like I did in JR Hi...(13-14 y/olds)...)
Pt goals: 100% comprehension of conversation, express complex ideas and needs effectively...effective cognitive communication status for independent living...
The 24 hour HHC were not advised of any of this...especially the iodine allergy... and "low acid diet"... So did the hospital staff expect that the one hour speech therapy sessions took care of the diet to prevent more allergic reaction?
By the way...massive iodine is the base of the contrast materials... the info not being presented to patients making their decisions...
I like your idea of the release record info of the woman in your ward...
It could readily be programmed for the adjustment per patient; w/pt name, aneurysm artery/segment, clipped or coiled, stents (artery/segments), required drugs...like nimodipine... if new severe allergies and diet restrictions...
Could also include the coding w/space to type in primary, secondary, etc...ICDs to CPTS, HCPCS, blanking on the two-digit one added to CPTs...
Perhaps some of the highly rated hospitals already do these types of helpful data for HHC...even when the patient is transferred to a nursing home, hospice, or a Rehab facility...to better help spouses/partners/families/friends to learn and understand about brain aneurysms/injury...
Please get your family/friends to read your books before you donate them...Jill, thanks so much for all you shared...
Have a great day / week...
Pat
maybe you can find a sponsor.
i tried to talk with my husbands gi dr and the nasty response was oh did you go to med shool i said no experience and awareness. not for annie something else.
Laurie...
Please tell the GI...that you expected, because he/she presumably has been thru med school, they would be qualified in med and humanity to explain / respond to the questions...
Frankly, from my own experiences, I am not at all surprised of what you received...
What I have learned recently from:
PCP-Internal Medicine (GI essentially same) have told me they are not qualified to address the aneurysmal issues/images...Recently told I need to be back to neurologist...
Neurologist asked why I came in...told her PCP referred me...asked questions about abdomen/GI issues/dry mouth ...She advised she is highly trained in the nervous system...not the abd/GI/other...
So may I assume the PCP /neuros do not know the nerves relate to our organs/other?
Laurie, please remember I have no expertise...just a zillion questions, too...a number on "ask the doc"...
Pat