I am excited to say I finally had my appointment with a neuropsychologist because of memory and rationalizing problems. Though I absolutely love my pcp, who has saved me multiple times, she has also stated that middle age memory problems are common, especially if you have been through cancer treatment. I did convince her finally that I thought my impairments were not the result of middle age and she referred me to a doctor who I think really knows what he is practicing. He is a psychiatrist that specializes in neuro-psychology. I absolutely really like this doctor (besides, what doctor can you not like whose family helps with training the wild wolves at the local zoo?) All that aside, so far I really think he knows what he is doing (https://www.nanonline.org/Default.aspx).
I won't have my testing for another month, then there will be several more appointments According to the literature that they sent me before the appointment: "a neuropsychological evaluation typically involves assessment with a group of standardized tests that are sensitive to the effects of brain dysfunction. Unlike CT or MRI scans which show abnormalities in the structure eof the brain, or EEG, which shows electrical abnormalities in the brain, neuropsychological assessment is used to show the ways in which a person can or cannot perform certain functions or tasks that are dependent upon brain activity. These functions or tasks form the necessary building blocks of successful living in the individual's daily life. Impairment in many of these functions may exit because of brain abrnomalities that cannot be detected on CT or MRI scans. Therefore, Neuropsychological assessment is a procedure with a unique purpose; it can be used to reveal or diagnose brain dysfunction when no structural brain abnormalities can be seen. Furthermore, when structural abnormalities halve been found, neuropsychological assessment provides a way to determine what functions may be impaired because of the structural defects and to determine the degree to which they may be impaired.
I absolutely really like this doctor (besides, what doctor can you not like whose family helps with training the wild wolves at the local zoo?) All that aside, so far I really think he knows what he is doing (https://www.nanonline.org/Default.aspx). I won't have my testing for another month, then there will be several more appointments.
He did say today that anytime something is done with the brain, there can and probably will be disturbances. This was so good to hear - as someone who did not have a rupture (not that I discount what anyone with a rupture has gone through), that my brain might also be affected.
I will not know much until well after the testing, which is scheduled for April 7th (almost the whole day) and then the doctor said that our next appointment for the evaluation may not be for another month after that. I will keep everyone informed - I know several people who probably should have had this done (much more than me) that have not. I want everyone who might want this done to know how it comes out - after all, we have all been through a lot of tests and are wary of going through more if not needed or if they will not be helpful. My hope is that I may get a "roadmap" to improving the way my brain is now functioning, but if that is not possible, to just be thankful for being alive and able to help others .
I hope the evaluation is enlightening, Sherri. I know a lot of members on the AVM community have been helped by neuropsych evaluations. Keep us posted.
Sherri thank you so much for sharing! We really didn’t get any follow up neurological care although there hsven’t been any obvious indication of impairment. Looking forward to reading about the tests and your results and additional recommendations for you. I love that you are a strong woman with an open mind pushing through our difficult health care system in search of answers! I know many on this site will benefit from your comments.
Hi Sherry, I have had the testing done. Have to say it was extremely annoying and the more I would do the more annoyed I would become. Lol it tests all your cognitive skills, your ability to understand what is written as well as reasoning and memory. It was by far the best thing I did that helped me understand the true scope of my injury. I completed over 2 four hour sessions and would not recommend trying to complete it all in one. It’s just information overload. At the end be sure to share how your life has changed as everything doesn’t show in the testing. Wishing you all the best.
I had to go and see a neuropycholgist, my aneurysm burst i was in hospital for 4 weeks as i also had two strokes, physically i coped ok afterwards, just the tiredness, confusion no energy...but I had the worst nightmares, which all related to the SAH the operation, the treatment afterwards, I also had flashbacks during the daytime. Plus deep depression. I went for monthly appointments to see my Neuro Psychologist, I did all the tests you have mentioned, however i will say that a day to do these in would be VERY HARD. . I had 3 appointments that lasted for two hours, to complete the initial tests....after one hour i was totally worn out, i could have slept So they kindly changed my appointments to 45 mins each session.
The results were so good, I did not feel stupid anymore! it was understandable to have felt the way i did, i was taught how to handle it, and know that my mind would just shut down in certain occasions when things got too confusing if i was tired, my family all understand that now too. It can be an excuse to get out of some things too ha ha. Go for it and hope you feel clearer afterwards.
My neuropsychological testing was very useful as it formally demonstrated some of the specific areas I had trouble with and was enlightening to my employer. Before that people didn't really believe me when I said I had problems as i looked and sounded entirely well. It was useful to have some formal demonstration of my 'invisible' disabilities. My neuropsch split the testing into 2 hour sessions as I had big problems with fatigue. In followup I was given useful advice in how to work round some of the difficulties.
I don't think the testing I went through (which was about 6 hours of tests over 3 days) identified all my areas of difficulty as I was much more disabled than the results suggested I would be. I suspect the testing is still not refined or detailed enough to pick up all the subtle areas of difficulty.
I also found the neuropsychologists to be supportive as they were the only professionals I met who had some real understanding of my situation.
Ask him about a Portable Neuromodulation Stimulator (PoNS) as described in the book The Brain's Way of Healing by Norman Doidge. It appears to assist one's brain to heal itself!
Apparently used in Canada. I have not been able to find one on-line in the UK.
I'm on a waiting list to see one, it's 2 yrs here in Mtl. Unless the insurance company will pay to send me privately, I'm still waiting to hear back from them.
Hi Sherry
I went to a Neuropsychologist shortly after being diagnosed with a 2 mm Annie. I had been having strange symptoms for a couple of months before my diagnosis. The Thing that scared me enough to go to my physician was an incident that made me think I was having a small stroke. Although they told me they didn’t think I’d had anything, my memory seemed affected for months. I had been seeing a Nuerologist for over a year for strange symptoms and I’d had an MRI but not an Mra or a ct scan. She referred me to another neurologist an expert in brain damage caused by disease and he finally diagnosed my Annie and we got a baseline from a Nueropsychologist for future reference. The baseline tells the docs where you are ( brain function) in case something happens such as a rupture they can identify which part of your brain had been affected.
Unfortunately my tests took months and several different testers because I was unable to focus for more than 2 hours at a time. In the end they all believe I was just fine for my age. Some minor issues but I was pleased with my results and I know my physician will know how to help if anything happens.
Hope I’ve been helpful. Take care.
Lydia
Hi Sherri,
Six months after my surgery, when swelling had subsided I was sent to see a Neuropsychologist. The test was four hours with many breaks. My aneurysm was clipped and then obliterated in the optic nerve chiasm on the front left side of the brain affecting my cognitive thinking and responses. After the test and evaluation I saw a speech therapist at Kessler Institute three times a week for three months. I was so surprised to learn that even though I did not have a problem with my speech I was shown different ways to perform mental tasks to get through the day without becoming frustrated. Most importantly I learned that there are at least four different ways to go about even a simple task. I no longer multi-task. It is frustrating and impossible to do, so I have learned to finish one task before I go onto another. I have also simplified my life- I still keep a list for the week and do not overload it. It will be two years in July and I have learned to accept and love the new me. Took a while kicking and screaming at times, but I am so so much happier. Best of luck. Stay positive to new ways of learning and life!!!
Penny
I just read what I had written and there you go - I repeated a paragraph twice! Thanks to all who have replied - I didn't know that so many of us have had these tests. I don't have the time today to answer everyone - I am dreading that they have scheduled all the tests in one day from what some of you have said. I do get frustrated now when faced with multiple tasks (something I used to never get), and of course, the memory lapses, so one day of tests may do me in.
I too really like my Neuropsychologist. He tested me a couple hours at a time, due to the fatigue. I’d go home and sleep for hours! The longest was the MMPI which he did “for fun” Meaning he did not turn the results in to Minnesota. I had studied it too much in college. Basically it shows I was honest to a fault, literally. He also teased if I hadn’t had the SAH, he would have locked me up on the psych ward. But he had another book for Psychologists that indicated I was just fine for what I had been through. He was also able to debunk the PTSD that a neurologist thought I had and suggested it was just sensory overload. He was the second professional to douse the lights for me. He was amazed each time that my speech and thought processes vastly improved with no lights. The only thing I question now, is was he too nice to me? If I had been pushed more, I’m pretty sure my results would not have been so good. Or if he did not turn off all but one light for him to see? His results did get me my State Employees Disability Retirement. He spoke to my Neurosurgeon personally. I had lost a few IQ points but as he said "You probably didn’t need them anyways"LOL. He was amazed I could do as well as I did, heck he read my entire medical history, which filled a box that holds paper reams. He also delayed my testing for eight weeks because of the second coiling. We paid and then Insurance reimbursed us. We were having a problem with the Insurance Company and Cobra at the time. He recommended OT which I have not gotten yet. Can’t drive to the OT’s office, the transportation in our county is ridiculous! They are sponsored by something to do with disability but they only take those individuals to appointments between 11:00 and 2:00. Around here medical offices are usually closed for most of those three hours. And unfortunately there is no bus stop near our home that I can walk too. We did check in to a taxi but that will cost $40.00 round trip to go the eight miles one way. So I’m waiting for the local college to get a spot opened and will work with a student under the supervision of a professor with her doctorates in OT. She suggested waiting a bit to let my brain finish healing before we put to much on it.
I did my neuropych testing in one day and it was brutal. I was required to have it done for my long term disability. I had to have it repeated after two years, to make sure I have not recovered enough to go back to my very complex, high stress job. It confirmed what I knew to be true. I had gotten better but still have problems working with numbers. I hope that I will not have to go through another one.
I too have an neuro psych that conducted an array of tests. My situation is a little different tho. I had to have it done for insurance purposes. It was conducted over several days due to my fatigue. For me, it was extremely agitating. These tests exploit any pitfall you may have due to your event. It’s extremely accurate in its findings.
I can only speak for myself, but these tests were like a mirror for me. It confirmed what I thought, but was unable to see on a day to day basis because I was not able to work. It was a bitter pill to swallow.
I went to see a neuropsychologist too! I strongly recommend this for anyone who has had a craniectomy. I was surprised by how little my pcp knew about symptoms and issues after aneurysms. He first thought that I was merely seeking attention. Anyways. …it was a very good thing to do and it helped my neurologist in suggesting treatments.
I have been examined by two different Neuro-Psychologists due to my memory and learning deficits - very expensive testing which was paid by the government since I was applying for Disability Benefits (I had been fired from 5 jobs in 2 yrs post aneurysm due to not being able to comprehend and learn new functions. I found the whole process difficult on my brain and very frustrating but in the end very beneficial because other important things were ruled out such as Alzheimers etc... But I am curious to know what the other testing is you are referring to using equipment? keep us posted
I had a neuropsych test after 8 months from the SAH and thought for sure I would have done worse than they said. It was about 6 hours in one day and although its broken down into sections it wasn't as grueling as I expected. I did well in some sections and not so well in others but I really concentrated on each so I feel the results are a little misleading. At least for me anyway. I'm still having terrible , terrible issues with short term memory and some long term as well. At the end of the day, they said I could return to work on a limited basis and work up to full time. Encouraging but I lost my job prior to a return so now I'm lost as to what I'm able to do and what kind of job can I apply for. I'm sorry I had it done. I wanted it so I could find out how bad things were and attempt to return to work and was told it would protect me at work if they tried to let me go for any deficits discovered from the test. Well, that ship sailed and here I am. No job, no income, no idea what I can do for a living, and while it wasn't entirely the fault of the test, it didn't help me at all. I wish my test was delayed because of the second coiling as yours was Moltroub since things got worse after it but I didn't know what the results would be after the second coiling and it took a couple of months to get the first one scheduled. So anxious to get recovery moving along at the time. Sorry for my rambling. I think that is a residual thing I'm stuck with permanently and I find it annoying that I do it. Actually I do recall they said that was a deficit but thought it was great I realized I was doing it when it was happening. I don't find that to be helpful in any way. Sorry too for my anger. I guess I'm at the point that it really ticks me off this happened in the first place. Yes, I'm beyond grateful that I'm here but lately I've been having a big pity party. Doing well enough to get along but not bad enough to meet an arbitrary definition of disability. I don't feel I really have a right to bitch about things when it could be so much worse. On that note, I do wish you the best and hope you find it helpful to you as others have. Please post again and let us know how it went!
My husband had some tests performed by 2 neuropsychologists. They were not psychiatrists. They were nowhere near as lengthy as yours sounds like it will be. I found the information given to be of the bare bones type and with nothing in writing, which was disappointing. One neuropsych was paid for by a Rehab program he was in and I think that was just a test to see if he would benefit from the program, nothing more.The other was paid for by our insurance at that time and all I can remember from that was that he had severe ADD now and tested out 20 points lower on his functional IQ.
I took a class on testing in graduate school and I am sure your memory problems will show up in the testing. Any memory problems would. You will learn how severe they are in comparison with other people your age. Hopefully you will learn more detailed info than that as well. We know more about how memories are formed and retrieved now. I suggest recording the session where they give you the results and demand written results as well. Since you are the subject of the tests the emotional impact of the results will make it hard to remember all the details whether you have memory problems or not. I recorded a session with a specialist once and I was amazed what I picked up when listening to it again. Thanks for the link in your post as well. Good luck and let us know how it turns out!
Congratulations on getting a nueropsych evaluation plus getting a doctor who you connect with! This will help your doctors and therapists help with evaluating your strengths and using this to compensate for your weaknesses. I have had four evaluations; the second one showed improvement then after a bad car accident the next two showed significant decline although my verbal and written skills seem intact and are my strengths. I would suggest the following books: Chemo brain,Your Brain after Chemo:A Practical Guide to Lifting the Fog and getting back your focus,Brainlash,My Stroke of Insight,The Brain that Changes itself. These books were helpful to me in that they gave me insight to my brain injuries and also some practical tips and exercises to help my brain function. The book "The Brain That Changes Itself " gave me hope. When I went to medical school very little was said about neuroplasticity and I was under the impression that a stroke would cause permanent impairment and didn't focus on improvements! So I was sad for my patients that had strokes but didn't focus on improvements,just maintaining the status quo...now my attitude has improved . My motto is riscovery,recovery of what can be salvaged and discovery of new talents,abilities!