Sunday, November 26, 2017 – I’ve thought a lot about whether to republish this blog post about the second to last visit to my previous brain doctor. Also the next one about the very last visit to this brain doctor. I’ve decided to share it again in case it will help even one patient avoid this doctor. These personal blog posts were shared originally in between posts about other dementia related info. I’m going to post my personal blog posts in order after this one and will then get to the remaining non personal dementia posts.
Original post from April, 2015: TODAY’S BLOG IS ANOTHER OF MY VERY WORDY, LONG BLOGS. I WANT YA’LL TO KNOW ALL THIS AND I AM WRITING IT FOR MY OWN RECORDS. IF I WROTE THIS WHEN I GOT HOME YESTERDAY IT WOULD BE MUCH LONGER (HA!) AND MORE EMOTIONAL. A GOOD NIGHTS SLEEP HELPED THE EMOTIONAL PAIN SUBSIDE SO I’M TRYING TO KEEP THIS FACTUAL.
Tuesday, April 8, 2015 – First let me say Happy 36th birthday yesterday to our oldest son. Second, a big Happy Birthday to my sister Harriett Roussel!
Dr. Morteza Shamsnia is my neurologist whom I’ve seen for about four years now because of my brain. He was highly recommended by Dr. Susan Andrews, a Neuropsychologist. I went to her after having some odd symptoms of memory loss. She did a very extensive day long test and two separate meetings with evaluations. She determined that I have significant deficits in new learning and short term memory. They were very much in the abnormal range when compared with my overall IQ. She told me all about this brilliant neurologist who used cutting edge treatment and technology and that I’d be so lucky to see him.
I made my first appointment and after he did at least 5 different brain tests he concurred with her finding and said that the deficits were being caused by multiple TIAs and brain atrophy. Visits for the first few years were fine. He was highly recommended and even though I thought he was a little eccentric when I met him, I liked him and felt very blessed to have him as my doctor. I think I even wrote nice things about him in previous blogs. He deserved all of them (except I mentioned nothing in my last one – about my visit there – about his bad behavior.)
There was a 2-3 hour wait every visit the first few visits, but you got to really talk to Dr. Shamsnia and I left feeling better. The last year or more the wait got to 3-4 hours with less and less quality time with the doctor. I saw physicians assistants, nurse practitioners, and residents many times before finally seeing the doctor. However, when I saw Dr. Shamsnia finally it was like I had never told the first ones I saw anything because they didn’t pass it along to him or either he didn’t listen if they tried. I say that he didn’t listen because I saw it first hand yesterday.
During the four hours I sat in the waiting room yesterday, everyone complained about the wait. This always happens but I’ve learned over time just to use this as a time of rest. I bring a snack and my Kindle and read or watch TV during the wait. The ladies next to me were complaining and I assured them he was worth the wait and they agreed. When I left his office I had been there 6 hours and 30 minutes. This is unbelievabl,e but it’s not why I will never go to him again.
You need to know about the wait because no one should ever have to wait that long. Though for a doctor who knows your case, seems to care and spends the time needed with us I’d do it every time.
The visit before last (two months ago) Roy came with me because I need Roy to understand what is going on with my brain. That visit was only 4 hours long but Roy got to meet my crazy little Iranian, but I always give someone a chance regardless of past bad experiences and I don’t stereotype people.
At the doctor’s previous request I asked North Oaks Hospital (here in Hammond) to dig back in their storage vaults for any MRIs I had 20 or so years ago. It took them a while but they got them all. A really heavy thick folder of every type of CT, MRI, Mammography I’ve ever had. I pulled out the two MRIs. One from when I had the first TIA 25 years ago, and then another of my head and neck when I had a tumor removed from behind my ear. I brought them with me along with the CD I recently received from an MRI in December 2014 and one in 2011 when I first began seeing him. HE ASKED ME TO DO THIS, remember this. This was back in the days when he was a good doctor for me.
The Nurse Practitioner that had been in several times kept saying how sorry she was that we were waiting so long. She said she’d let him know exactly what we need but never was given a chance to do that. You can see their office area when in a room with an open door. By the time we saw the doctor he (the doctor) was trying to get out of the office for the day to catch a plane. The nurse practitioner had already told us that all my vitamin and mineral levels were great from the blood work. Dr. Shamsnia spent maybe 5 minutes with us and said he didn’t have time to review the MRIs from 20 years ago to the recent two MRIs I had in 2011 and 2014. I asked if we could do some test to determine what caused my brain to atrophy since it wasn’t vitamins and his response was “You want a test that can cost $500,000 to run and you will no nothing after that.” He told us he didn’t have time to take care of what we came for that day and he left. His words exactly but he did have time to tell us how very busy he was and all the things he took care of – all non patient related.
I thought Roy was going to run after him and punch him but he restrained himself and we went home knowing only that I have dementia (only because I stopped him from leaving and asked the direct question) and that he doesn’t know what kind of dementia it is. He gave me the report he prepared for me for Social Security and I thanked him profusely for doing this since I knew the importance of what he had to say. I learned more from the report than HE HAS EVER TOLD ME. The total extent of what he’s told me the last three visits is – you have dementia, your brain is really shrunk – and that is it. Everything else I’ve learned has been from the report and looking up phrases from the report on the internet.
Can you begin to see how especially frustrating and awful this is for someone whose brain is significantly shrunk and who has lesions in her brain from having multiple TIAs. However, I’m now focused on qualifying for Social Security Disability and I knew I had to see it through with him until that’s over.
About a month ago, one of the packets of info I needed to complete for Social Security included a form for him to say that he does prescribe the two medicines I listed, Aricept and Paxil, and that without them I wouldn’t be able to do the work I use to do. Even with them I can’t do the work I use to do but that’s what the question stated. I sent the form with a complete letter explaining why I needed him to sign and enclosing a stamped envelope addressed to SS. About two weeks later Social Security called me because they received my portion of the packet but not his. I called his office and spoke to his nurse who said she didn’t see it so I scanned it and emailed it to her. He seems to be rarely in the office lately between flying places, building his new huge building next door and teaching at Tulane Medical Center so it was a few days before she got back to me. She said he refused to sign the form and he hadn’t reviewed the MRI’s for difference yet so I’d need to come in. After the last visit I decided that after we went on the road for a year I’d see him again and then transfer to a better doctor but I had to go see him this time to get the form signed.
The rest of this is going to be very long (it is already, sorry) because I want to share all the details of the visit yesterday. I need to go into the house and put a second coat of wax on the stained concrete flooring and while I’m feeling okay and rested I need to do that. I will post this and pick up as soon as I finish the floors.
Be back in a bit! Rosalyn
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