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.