Brain Aneurysm Support Community

Finally a diagnosis and a team to work with me!

#1

I consider this a success- I went to Wake Forest Voice, met Ms Fields, two doctors and another person who is an expert in aphasia. They have accepted me as a patient , just waiting on insurance to give the okay. I have been officially diagnosed with Foreign Accent Syndrome. I won’t lose the accent, but I can learn to soften it:). I am really happy even with the little headache from concentrating so hard. Remember you must be your own advocate, never settle, keep trying and never give up hope

Today is a major hug day!

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#2

Moltroub...you have an excellent result...pleased for you...

Hope you can/will bear w/my Qs bc of your apx 2 years (?) since rupture/initial procedure(s)...

When did you notice/ask a doctor about your status?

Was it immediately following the initial procedure(s)?

Any changes (w/more procedures ) or just angio check-ups?

Did you notice advancments, declines B4/after more angios?

Being our own advocate is critical...tho some of us cannot read/comprehend...and/or speak clearly...or have memory of any of it?

Being our own advocate is highly critical...tho having family/friends...or professional advocates may be far more critical...when any of us cannot express/explain... and, our abilities can/cannot be assumed, imagined by our advocates...spouse/partner/family/friends...and, sometimes...the PCPs...

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#3

Moltroub...a P.S....

Can you share how you tracked/traced data to get to some group somewhere for assistance?

Was any of it noted in your basic brain...recovery brochure?

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#4

Wow that's really interesting! I have heard of that syndrome, always found it fascinating. Goodluck with everything.

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#5

I lost everything I typed Ms Pat, let me see if I can answer all your questions…

Yes, I ruptured 11/2013 with a Fisher level 3 bleed (>1mm blood in subarachnoid space), vasospasm 26 days, 28 days Neuro ICU. Second aneurysm also coiled 6/2014, no complications, over night stay. One of the CCU doctors suggested I had interacted too much with the Filipina RNs, thus my accent during the overnight stay.

I don’t think any was in the basic brain info that was posted, but I may be wrong.

Upon intial awareness, I was stuttering and would lose my words (aphasia). Can’t say I was worried about either, just would get frustrated. Am not knowledgeable enough to say if some of the stuttering wasn’t due to the aphasia. I seem to stutter even now when my brain doesn’t come up with the word, and if I am tired or overstimulated. I couldn’t remember what some words meant, I would use words in the wrong context.

I did decide to put myself in Speech therapy. I contacted my triage nurse, Jennifer, who spoke to Dr. Quintero-Wolfe who wrote the prescription. I took this to the Outpatient Rehab at CVMC, my local hospital. I worked on speech, cooking, and counting with SLP Stacey. I believe we worked for a couple months together. It wasn’t easy. I was exhausted and would get headaches more severe than when I went in. She made it fun and was always encouraging, always able to find a positive in my work which I really appreciated. Sometimes, she would note that I may not have been forthright with my headache level and we would have to end the session early. They usually ran about 45-50 minutes. It was the first time someone mentioned aphasia that I can remember.

Each time I would have an angiogram, the anesthesia would set me back. Dr. Q-W explained it would take awhile for the anesthesia to wear off and its effects on my brain. It seemed every time I was getting back to where I was it was time for another angiogram. I haven’t had one in several months as the last one showed the open neck had been resolved by the blood flow rerouting. Since then I haven’t had set backs. But speech and words get lost with stress and exhaustion. It still means I have a baseline to start from.

I found out about Wake Forest Voice through Stacey. She suggested I contact them as she cannot give a diagnosis. Stacey would ask about it or I would let her know my status as I had to get her records to Wake Forest Baptist Health. Eventually everything was worked out and Dr. Q-W’s PA got the order to Wake Forest Voice. I think it took me a couple months to get in.

I met SLP Amy who spoke with me and my partner, had me say things in a microphone that recorded my voice. It shows up as waves on the computer screen. She worked with me on softening some sounds as I say really hard sounds often followed by an a sound ( Ima going as opposed to I am going). I think she said something about teaching me to speak lazily - drawing sounds together instead of saying them crisply and with the a or ah sound.

I realized I had to do something after this last year. Some people find it very difficult to understand me, I don’t know if they’re not listening or get fixated on a sound that they can’t identify. It was very hard for me to communicate with all the medical professionals I dealt with for my parents and then having my father’s death with all that entails. Most people have a harder time understanding me over the phone and my mother had decided I was going to do it all. From contacting family, friends, making funeral arrangements, and all the business that has to be done. Then she threw away all my copious notes…

I think the final straw was getting cussed out by someone when I was out with my partner. I had had a really bad day and the guy said things out of ignorance, I was exhausted and had let my guard down. It ended up with me not being able to communicate well. This led me to go back to see my Neuropsychologist who told me I was telling people I had a SAH for the shock value and I thought I was just explaining. I’m not sure he understands completely how hard it is for me. He says he understands me fine, my diction is far better than his. But we live in a relatively small rural Southern county - about 150-160,000. People speak differently in each of the counties in the area. I don’t speak like any of them;). It was this that drove me to talk to Stacey in the waiting room one day.

I think if I lived in a bigger city, or back in California, this may not be such an issue. But it just might be. Since I started hearing my thoughts, I sound like I did before I ruptured.

But I think SLP Amy will help with or have the aphasia lady help me with my aphasia. I recall one of the members had issues with aphasia. He was an attorney. I couldn’t find his post, it was from several months ago. When a person makes their living with words, it is very hard to learn to live without them. I’ve found ways to get around it, but not at a level I could work. Most people try to give me the word which just makes me forget my line of thinking. It doesn’t help at all! Unless of course I ask the. I have given my brain time to stop. If it’s the wrong word that’s supplied, it’s worse, my brain becomes an u solved Rubix cube.

And of course Ms Pat, you are correct. We must advocate for ourselves. I like the other member can type much better then I can speak. I still lose words when I type and I have noticed that my thoughts aren’t flowing like they used to. I will skip several paragraphs and write a paragraph on something that should be placed elsewhere. But this is how my brain works now and I usually see the errors long after it’s been posted.

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#6

Moltroub...thank you for all you shared.. .

I had wondered if that "Recovery Brochure"...you put in the "resources" may have helped you grasp some ideas... because I think that could be so helpful...especially to spouse/partner/family... to help in the
"symptoms" they observe and share here...

Even tho we may have a diff named (artery) of our aneurysms...they are all essentially in a small entry area of our brain...

I so remember all that you have noted...and I have not overcome many of them..my worst is the aphasia...I can see the words floating in my brain...and, cannot say them...I haven no way to reach in and pull it out...I still read/type better (improved over the years)...but am yet so slow at the initial reading/comprehension...

The advancement of my vision failures...followed both the first f/u and then the next/last...

What really drags on my thoughts...are that the "neuro-whatever"...titled docs have all been trained in it...and, if they have not , they likely/presumably should not be using the title and performing the varied practices.... One of these days,. I will recap a sentence or 20 from each neuro-doc...

I am so pleased for you to have your therapy beginning... will love to know yours results...and, for some of the steps on the way...

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#7

I will do my best for you Ms Pat. I was astonished that someone could continue to work on their aphasia. I had no clue. I will have to go back and look at that entry on basic brain information. It may have sparked something…

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#8

Moltroub... My Comcast is burping...the first time in days..so may get shut off/down...

When sharing issues of learning and memory...

In 08/2014, this DumbCaller spent 6-10 months shifting to a SmartPhone...and ending landine/internet...w/change to Comcast for internet... bcof my memory, I overlapped this change... This weekend...I made no calls nor received any...Late Monday (this week)...I needed to call on something (I had been into my heavy research all weekend)...my SmartOne was clearly on...and, did not dial. After a couple of hours, I had sense to run to my T-Mobile...the young man quickly turned it on...with "restart"... and showed me how to hit the "off and restart"...If I had been told when I bought, I do not remember it...did not even jog some memory...

And, I was impressed...his first request to me was my id to check as he accessed their owner data..

RE: memory issues...getting a SmartOne...I was so impressed w/my self-thought...I got a Tracfone...in case I lose/break my SmartOne...I got it set up to get the tel # assigned; gifted 60 minutes as a new member; experimented w/it a few times. It is in my purse...w/a couple of small minute cards...Now I wonder if the phone #'s is still us able by e//well over a year...so I need to relearn that, too..

The overlaps in my current (began in November) research....each one opens another door...(Should I call that another structure...or a fissure/cistern or the artery supplier of it) or just somehow it all jogs memory cell regrowth? We do know of neuroplasticity...and not which toxicity and/or injury prevents certain parts/areas of cell regrowth...and, each step has a new word...that drives me crazy...in my attempt to comprehend and remember...worse having to remember which structure it belongs to that I learnedthat "new" word...and, its connection and its function...

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#9

Ok, this was all fascinating! Moltroub I am so happy to hear you found someone to work with you (especially after reading your story). I have never heard of Foreign Accent Syndrome. I know I mentioned to you that although I speak Spanish, my husband said my accent is slightly more pronounced now after surgery. Funny since I don't speak Spanish much. But it must be more pronounced because people will ask me where I'm from and when I say Chicago they look at me like 'yeah right...in your dreams'. I think when I'm tired I slur more and roll my words into each other. Anyway, truly great information here and wish you the best in your new endeavors with Wake Forest.

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#10

Very Happy for you, finally getting the help you need to move forward. What a comfort when our needs are addressed.

Was just talking to a member about: are we all recommended to Brain Rehab? I was given script for OT/PT for healing help/eye issues, etc, but was unable to go since doing hand rehab I thought came first. Couldn't drive, Dr. appointments, hand cast changes & hand/wrist PT/OT too much for something else. I pretty much floated for awhile. Looking back on it all, I could have benefited from the Rehabilitation. I hope everyone gets this option. You are an inspiration Moltroub...heal on.

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#11

Starbirder - good question for a new discussion, how many of us was told about brain rehab? I’m not even sure who’s supposed to do the referral! I am going out on a limb and say I think for those of us who live in rural areas it would have to be the PCP. How could my Neurosurgeon even take a guess as to what is available in a county an hours drive from her office? I often wonder if it was supposed to be the Social Worker assigned to the Neuro ICU. But she never talked in depth to me and her work day was over before my partner could get off work and drive to the hospital.

I really hope you start a new discussion, maybe we can get a lot of useful information from other members.

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#12

Harlylena, girl, I can barely remember any Spanish much less roll my r’s! I envy you. But maybe I just need to tell folks “Don’t mind me, I’m not from around here”. It’s a little regional joke roflol!

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#13

Ms Pat, I’m really glad you have your phone worked out! I believe the medical community can do scans and see which areas of the brain are no longer viable. However, I recall in my studies that although one are can stop functioning for a myriad of reasons, another part will pick it up. I even remember this self healing was supposed to stop around age five but then shortly before I ruptured, I learned in a training that the brain can continue to do this phenomena until the day we cease. Good reason for us to keep working it with things like Lumosity, memory games, just speaking to others.

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#14

Congrats hugs

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#15

Thanks Ms Lisa! First of ten appointments this Friday! I like to joke that she is going to teach me to talk right!

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#16

Moltroub...you are absolutely right...our brain cells were never really more restricted in re-growth

than our body., bones and organs...and, blood...but it all depends on what goes thru it and how it traverses it.. I imagine when we get any injury/illness...it all varies on the volume and how it arrived and/or left ...our system...

As for certain things being "re-paved" in our brain... I learned that statement when taking PositScience Brain Fitness (2007)...regarding redevelopment of some of our hearing to help memory..."can't hear it - can't remember it"...

Even tho I had regained reading/comprehension...I was sooo slow (still am), I took a local class on Brain Fitness (vs buying a CD for home use)...to avoid my struggling reading to complete the next step of Brain Fitness. ....

RE: out brain structures/cells..I would say..."another part can/may pick it up...if it has the right training"...just my opinion...Well, I could say a lot more...and, will be 'quiet'...for a awhile...

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#17

Moltroub...once more...found a really neat website...on our Central Nervous System and its connection to our peripheral nervous system... easy to read and has a great list definitions..

www.faqs.org/health/Body-by-Design-V2/The-Nervous-System-Design-parts-of-the-nervous-system.html

It covers the pituitary / hypothalamus ...limbic system... it is by Dr. Susan E. Leeman who granted permission to this faqs.org...it is so much easier to read/comprehend (for me???) my biggest challenge will be my memory tomorrow+...

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#18

Here is a video that talks about what foreign accent syndrome is…

http://youtu.be/AR_HyIyTSZg

Cheers,
Lisa

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#19

Ms Pat, reading your link was like being back in bio-psych with Dr. Norman (I even remembered her name!). Thank you :slight_smile:

Lisa, thank you, it shows so much. I did not watch that video until you posted it. I really feel lucky that I have not lost my friends, I can only imagine the young woman who lost hers feels very isolated. I found it amazing no one in the video had an SAH. NIH has about 40 articles on FAS.

I know the video didn’t talk about it, but the only thing I can do without an accent is curse. But having worked with ischemic stroke patients, I know not to go down that slippery path. LOL. I will have to ask the SPL about that on Friday. Perhaps it’s because cussing comes from a deeper emotional level. The first curse word I used was when they were putting a central line and an a line in me at the same time. It hurt really, really bad, worse then those shots they put in your stomach so you don’t clot. Nurses were proud of me, one of the doc’s was not. She had also been a patient in Neuro ICU. I trusted her as much as I trust my Neurosurgeon.

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#20

Maybe cussing is universal lol!

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