I had my original rupture on 11-02-12 however I have another anni the said they do not have the technology to reach yet. Since my first was a rupture I did not get to ask any questions about it and I want to make sure I know what to ask when I see my neuro doctor to go over my recent MRI. I know to ask where is my anni and what size is it. What else do I need to ask?
Thank you in advance for responses just in case I forget lol.....
vj...willl you share with us:
1) when you ask where is:...get artery and segment...
2) where is the untreated area: get artery and segment...
3) what do your discharge records cover?
In addition to your info here, to help you with questions is to know more of status/symptoms:
1) how is your vision and hearing?
2) how is your skin /scalp?
3) how is your fatigue?
4) how is your "balance/coordination" ?
5) can you drive?
6) how is your GI system? Same diet?
7) what other symptoms do you have?
Other members may be able to suggest a lot...I cannot unless I have a vague idea of your status/symptoms...
Prayers for much more input from others...
Pat
Hi vj
Here are a few suggestions for questions
1. Where is the aneurysm not yet treated and how big is it?
2. What is the risk of it rupturing in the next year/ 5 years/ 10 years?
3. What is the risk of surgery/intervention?
4. How will it be monitored? i.e angios/scans and how often?
5. Do I need to get family members screened?
6. What can I and can't I do? i.e. exercise, lifting, driving etc.
7. What should the blood pressure target be?
8. If you are not yet back to 'normal' after rupture please tell them what your problems are and ask what can be done to help you.
Judith
Pat and Judith gave you a lot to ask your surgeon...I have nothing more to add...Good Luck...~ Colleen
both of my annis are on my basilar artery. one was coiled the other was in a spot unreachable. they told my husband at this time there in no technology to reach it. they also told him that it is small and at this time nothing to worry about.
thank you for the ?s to ask
thank you for the ?'s to ask.
vj...my P.S.
Did you have an MRI or MRA?
Judith did grand in mentioning "recovery"...and monitoring...
Since mid-February I have "asked the doc" numerous questions / stated concerns... Kathleen of the Board, recently advised they are seeking an expert to do a webinar on radiation...possibly including info on contrast dye... My last response was a beg/plead...because angio/contrast are hand-in-hand...
Our sharing here can so often jog memory...a small example...my right pupil hurt so badly, I did not recognize the damaged condition of my left eye / left facial muscles...dry eyes, dry mouth and more...
Pat
vj....
Did your doc review the angio images ...from the diagnostic, reflecting both the aneurysms, and then of the coil completion?
Were any stents implanted?
You/hubby may want to google together: basilar artery anatomy ; then "cerebral artery anatomy" ...to see, to better understand...to possibly ask more questions none of us think of...
Ask your doc if you have any congenital variances in size /shape of your basilar...perhaps that was done when the doc reviewed/explained the images w/your hubby...
Ask if the odd spot of the second aneurysm is near the R or L vertebral arteries...or if closer to which branch. Likely the aneurysm treated was near the bifurcation to the PCAs; then, did the doc explain if it was closer to the L PCA or the R PCA or the general center of the bifurcation area?
You may also google: cererbal angiograms; cerebral angriography; fluoroscopy; DSA, 3D Rotational and anything else that pops up...
Hope you share back to help others; there are a number who have basilar aneurysms...not mine
Warm wishes and prayers for you/hubby...and that you keep us updated...
Pat
I had an MRI. I also called my doctor to schedule an appointment to got over the results and his assistant told me the doctor will call me with the results. So not only does he make me feel like I am bothering him when I do get into seeing him ( between the many canceled appointments and rescheduling) he doesn't even want to see me after my MRI. UGGGGG. OH n how is he gonna do that if I have the cd???? I am so not liking this feeling of uselessness cuz I can't get upset and yell at that about how they are treating me.
vj...
All your radiogra[phy from angiogams to MRI/MRAs on programmed...stored on the rad unit's comptuer system...including a back-up system...
Call that office and order it...ask for all of the rad from initial diagnosis, to treatment to the most current... MRI or MRA...
Pat
I do not know if it is he is not my actual surgeon who did the coiling. He was present for I think they said mapping but he did not do the coiling. The doctor that did seems to not have a phone number or office. So that just makes me question more of what they did to me and why I do not have as much information as everyone else seems to about themselves and their annies. I do have a cerebral angiogram scheduled with the doctor that performed the coiling at the hospital next month maybe i will ask him all my questions when I finally get to see him again.
Hi vj..
Glad you have an upcoming f/up..
So hope you do some research...and, from that and other suggestions froom here...take your written list in...You may want oto do a cover memo and fax the list in prior...to your appintment...
Take a copy with you, too to write in notes on what he explains...
Happy Easter...
Pat
So here is the list I finally came up with thanks to my sisters help and of course everyone who commented. Can anyone think of anymore? Am I missing anything?
Thanks VJ :)
Is there a help line or hot line where I can ask a certified nurse or specialist questions when I think of them? During my research I noticed that the UK has this service. Does the USA have something similar?
Where is my annie? Note: Get artery and segment.
Where is my untreated annie? Note: Get artery and segment.
What was the size of my annie?
What is the size of my untreated annie?
Do I have Stents?
How many coils do I have in the aneurysm?
Is there room for more coils?
Will more coils prevent coil compacting?
What are the possibilities of coil compacting?
Ways to avoid compacting?
What are the chances of rerupturing?
Ways to avoid rerupturing?
How will both annies be monitered?
Will I need more angio's, scans and often?
Will my headaches ever go away?
Will straining (while having bowel movements) possibly cause rupture of either annie?
Why can't I wear headphones? Note: Makes my head feel funny.
Will I be able to drive? Note: I try to avoid it especially when there is a lot of traffic because it makes my head hurt.
Note: I think thinking effects the above two questions -- Thinking makes my head hurt.
Why does my head bobble?
Are there ways to minimize my head from bobbling?
I have very low energy - Are there ways I can increase my energy?
I have difficulty sleeping at night -- The thoughts of not waking up, my annie rupturing or rerupturing, along with a bunch of other thoughts go through my head including feelings of uselessness. How do I reduce this troubling process?
My ears sometimes ring or things change pitch often - why is this occuring and how do I fix it?
Will I ever be "Me" again?
Will my memory capabilities come back?
What things can I do to increase my short and long term memory?
Do you have any pamphlets or brochures I can take home with me as my memory is not good at all? I need all the information you can give me please.
Do you have any websites you recommend for me to further research my situation or get support for my condition?
Do you know any support groups or websites for family members?
Now that my blood pressure is under control are there any other concerns?
Should I be concerned about my stress levels?
vj...you have a list...
When asking about the artery/segments...ask if the images can be shown w/the explanation...it just helps to start understand (at least for some of us)...that old "a picture is worth a thousad words" and yet, "one picture will not tell the full story"...
Do your blood tests show any protein / other out of normal range...?
Down to strainiing (bowels)...ask about adjusting diet...potential of gluten free (or reduced); about the need for probiotics...any other adjustments to diet...more greens?
Re: driving...do only what is comfortable...and, what the docs say ae acceptable...some of us have to be re-tested...
Your ears...ask about referral to specialist for teting...a number of us have had those...
RE: memory...also ask about referral to various therapies... perhaps referral for neuropsych testing to help establish what types of therapy may help continued recovery... Some can come back...but they take a lot of therapy... may never get to the "old"...what we were so accustomed to...in hpsital rehab, they tested the memory ssues...and, in the following terapes...
For websites for groups...Did you check the main BAF site to see if any support group is listed in yoru location? Ask the doc/nurse, PCP, etc...
If none specifically of anuryems, you may wa to check the websites for the American Stroke Association for local meetings and/ or TBI...t is all brain related...
Prayers and wishes for a successful meeting..
Pat
I did not ask the dr all my ?'s cuz it started giving me a migraine as complex think does now for me.
Is there a help line or hot line where I can ask a certified nurse or specialist questions when I think of them? During my research I noticed that the UK has this service. Does the USA have something similar?
I did not ask but I have this website :)
Where is my annie? Note: Get artery and segment.
Distal basilar artery. My annie is rare as it is before the basilar tip on a branch. to explain more visualize a river that river has a very small branch off with an island in the middle. So the main artery and a usless branch. My annie is on the usless branch.
Where is my untreated annie? Note: Get artery and segment.
Basilar artery was all I wrote down :(
What was the size of my annie?
3 mm
What is the size of my untreated annie?
1 mm and he called it a pecan. I do not remember seeing anywhere the pecan reference.
Do I have Stents?
No
How many coils do I have in the aneurysm?
2
Is there room for more coils?
No
Will more coils prevent coil compacting?
N/A
What are the possibilities of coil compacting?
Highly unlikely because of where my annie is.
Ways to avoid compacting?
N/A
What are the chances of rerupturing?
Ways to avoid rerupturing?
How will both annies be monitered?
MRA's
Will I need more angio's, scans and often?
Yes, He wants to see me in 6 months again :( I dont like MRA's THANK GOD FOR DRUGS.
Will my headaches ever go away?
He does not know why I am still having headaches.
Will straining (while having bowel movements) possibly cause rupture of either annie?
I did not ask.
Why can't I wear headphones? Note: Makes my head feel funny.
He does not know.
Will I be able to drive? Note: I try to avoid it especially when there is a lot of traffic because it makes my head hurt.
He said I can drive but doesnt know why it bothers my head.
Note: I think thinking effects the above two questions -- Thinking makes my head hurt.
Why does my head bobble?
He said that is very unusual and doesnt know why.
Are there ways to minimize my head from bobbling?
N/A
I have very low energy - Are there ways I can increase my energy?
Didnt ask.
I have difficulty sleeping at night -- The thoughts of not waking up, my annie rupturing or rerupturing, along with a bunch of other thoughts go through my head including feelings of uselessness. How do I reduce this troubling process?
Didnt ask.
My ears sometimes ring or things change pitch often - why is this occuring and how do I fix it?
He does not know.
Will I ever be "Me" again?
He said he doesnt know why not.
Will my memory capabilities come back?
He said he doesnt know why not.
What things can I do to increase my short and long term memory?
Didnt ask.
Do you have any pamphlets or brochures I can take home with me as my memory is not good at all? I need all the information you can give me please.
Didnt ask.
Do you have any websites you recommend for me to further research my situation or get support for my condition?
bannerhealth.com locations arizona bannerthunderbird.
I do not know why I have this he gave it to my husband while i was recovering and they went over some more of my ?'s. i see they have support groups but its very far from my home so :( Hubby says its to find a dr but geez i think id rather have a dr closer to home. so i left the dr a message hopeing that the girls that answer are his assistants because he has no office.
Do you know any support groups or websites for family members?
Now that my blood pressure is under control are there any other concerns?
Didnt ask.
Should I be concerned about my stress levels?
Didnt ask.