PrincessMommy Posted July 4, 2018 Share Posted July 4, 2018 Some may remember that my dh had a TBI about 6yrs ago from a car accident. He followed protocol and about 6month later he was still concerned about memory loss and I was concerned about his short fuse. Before all that, my dh would probably have been best described as the absent minded, laid back, hippy professor. So, I was less worried about memory because minor details (like people's names) was never his forte. But, he never had issues with anger prior to his accident. Now he was blowing up and losing control over small things - in public places no less! At my insistence, his primary care doctor sent us to a neurologist and it was a joke. He completely blew us off. Said it would slowly get better over time. Just did a few silly exercises and sent us home. Dh was happy..... (he didn't think he had issues with anger). He pretty much stayed the same for the last 6yrs... perhaps got slightly better with anger, but definitely not completely better. His short fuse would come and go... I noticed it was worse when he is tired or stressed. In the last year I've notice a marked change for the negative. He's frequently getting "offended" by stuff and much more grumpy. He's also become mean. It's mostly directed at me, but sometimes to our youngest son. I feel so bad that he has a different dad than the older kids. DH is also having more memory issues. I honestly don't pay as much attention to those as I probably should. He's never had the best memory and he's over 60. But.... We spent a long weekend on family vaca with all our children. He went up on Thurs. with our college daughter and the dog. I went up with our teen son. There was a miss communication about lunch and I got super annoyed and mad and let him know. When we were coming home on Monday he had completely forgotten who he went up with and the incident about lunch. So my daughter came to me this afternoon very concerned. She said she has noticed several other memory issues in the last few weeks. I've been thinking off and on that we need to go see a specialist but I don't want a repeat of the last experience. I suspect my dh will be less willing to go this time, so I want it to count for something. How do I figure out which doctor is best?? I really don't like Dh's primary care doctor, but he's an old friend of dh's, so it's not a hill I'm willing to die on. One thing I want to do is start keeping a log. That way I have more concrete information when we do go to the drs. Any advice or help would be appreciated. 5 Quote Link to comment Share on other sites More sharing options...
Soror Posted July 4, 2018 Share Posted July 4, 2018 I'm sorry I can't help but wanted to give you some (hugs). 1 Quote Link to comment Share on other sites More sharing options...
Annie G Posted July 4, 2018 Share Posted July 4, 2018 Is there a neuropsychologist available in your area? That might be a good starting place. (Hugs) 2 Quote Link to comment Share on other sites More sharing options...
JennyD Posted July 4, 2018 Share Posted July 4, 2018 I am so sorry to hear this. How appalling that the neurologist you saw earlier blew you off like that. I would look for a specialist in neurotrauma. Can you get to a large medical center? The one very near me has a multidisciplinary traumatic brain injury clinic. 2 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 4, 2018 Share Posted July 4, 2018 I don’t have any advice for you, Debbi, but I’ll pray for you and your family. This sounds so scary and depressing, and I hope you can find a doctor who will take your concerns seriously and will know how to help your dh. 1 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted July 4, 2018 Share Posted July 4, 2018 Besides a cardiac work up, I highly recommend a hearing evaluation. TBI and age means he has a good chance of hearing loss. Get a good neurologist. Ask on Facebook and any doctors you trust. Your first one sounds like a donkey’s butt. 1 Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted July 4, 2018 Share Posted July 4, 2018 That sounds really hard for both of you. I don't have advice, but you have my sympathy and best wishes. 1 Quote Link to comment Share on other sites More sharing options...
Selkie Posted July 4, 2018 Share Posted July 4, 2018 No advice, just hugs. I'm so sorry, and I hope you find a good doctor. 1 Quote Link to comment Share on other sites More sharing options...
EmseB Posted July 4, 2018 Share Posted July 4, 2018 How old is he? If there's a chance that he could at all be seen by a geriatric specialist, that might be a way to go. They tend to look at all issues together (memory issues related to cardiac problems, for example). I don't know if it's a thing with neurologists, but I had a family member experience the exact same blow-off treatment despite having very acute, sudden onset memory issues. 1 Quote Link to comment Share on other sites More sharing options...
Annie G Posted July 4, 2018 Share Posted July 4, 2018 1 minute ago, EmseB said: I don't know if it's a thing with neurologists, but I had a family member experience the exact same blow-off treatment despite having very acute, sudden onset memory issues. We had the same problem. Dad woke up one day and couldn’t remember how to make coffee or turn on the washing machine. The neurologist did an MRI and said nothing was wrong and said no need to see Dad again. A neuropsychologist is different. They look at behavior, emotion, cognitive issues AND brain function. Our experience w neurologists is if they can’t ‘find’ something wrong they are stumped. Dear grandson (age 5) has awful migraines. Neurologist said he can’t find a reason and told dd to give him Tylenol. 3 Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted July 4, 2018 Author Share Posted July 4, 2018 Thanks everyone for these tips. I would never have thought of heart issues either. I will check into it. He does have hearing loss. Years of listening to rock-n-roll and playing in bands have done that. Plus both parents had significant hearing loss... so I think there's a genetic component. We live in a major metro area, so I think finding one of the types of specialists people have recommended should be easy. Then I'll need to convince dh. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 4, 2018 Share Posted July 4, 2018 3 hours ago, PrincessMommy said: Some may remember that my dh had a TBI about 6yrs ago from a car accident. He followed protocol and about 6month later he was still concerned about memory loss and I was concerned about his short fuse. Before all that, my dh would probably have been best described as the absent minded, laid back, hippy professor. So, I was less worried about memory because minor details (like people's names) was never his forte. But, he never had issues with anger prior to his accident. Now he was blowing up and losing control over small things - in public places no less! At my insistence, his primary care doctor sent us to a neurologist and it was a joke. He completely blew us off. Said it would slowly get better over time. Just did a few silly exercises and sent us home. Dh was happy..... (he didn't think he had issues with anger). He pretty much stayed the same for the last 6yrs... perhaps got slightly better with anger, but definitely not completely better. His short fuse would come and go... I noticed it was worse when he is tired or stressed. In the last year I've notice a marked change for the negative. He's frequently getting "offended" by stuff and much more grumpy. He's also become mean. It's mostly directed at me, but sometimes to our youngest son. I feel so bad that he has a different dad than the older kids. DH is also having more memory issues. I honestly don't pay as much attention to those as I probably should. He's never had the best memory and he's over 60. But.... We spent a long weekend on family vaca with all our children. He went up on Thurs. with our college daughter and the dog. I went up with our teen son. There was a miss communication about lunch and I got super annoyed and mad and let him know. When we were coming home on Monday he had completely forgotten who he went up with and the incident about lunch. So my daughter came to me this afternoon very concerned. She said she has noticed several other memory issues in the last few weeks. I've been thinking off and on that we need to go see a specialist but I don't want a repeat of the last experience. I suspect my dh will be less willing to go this time, so I want it to count for something. How do I figure out which doctor is best?? I really don't like Dh's primary care doctor, but he's an old friend of dh's, so it's not a hill I'm willing to die on. One thing I want to do is start keeping a log. That way I have more concrete information when we do go to the drs. Any advice or help would be appreciated. I think I would try to find someone who is skilled in interperting SPECT scans of the brain (single photon emission computed tomography). And perhaps google for a neuropsychologist. A neurologist should be able to be of help as well but you mentioned that the last appointment was lackluster - perhaps you could find another one. A neuropsychologist should be knowledgeable of not only brain structure but also function (or deficiencies) and be able to correlate the findings to psychological processes. If your dh would balk at the "psychologist" part, perhaps explain that it is a branch of neurology that focuses on the brain, injuries and repercussions of TBIs. 2 Quote Link to comment Share on other sites More sharing options...
littlebug42 Posted July 4, 2018 Share Posted July 4, 2018 Find whichever hospital is your level 1 trauma center in your city/region. I would look for a neurologist affiliated with that hospital. Those docs are used to seeing significant trauma related issues and will be more likely to take you seriously. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted July 4, 2018 Share Posted July 4, 2018 1 hour ago, Arctic Mama said: Memory issues along with his history would have me asking about cardiac enzymes. But that was one, along with clumsiness and fatigue and random pains, that was undiagnosed heart blockages and reduced circulation and oxygenation in a family friend. He went in for back surgery two weeks ago and ended up having a double bypass two days later, nearly died on the table. And he’d gone to multiple generalists and specialists, none of whom connected the brain and pain issues with cardiology. Also possible symptoms of a blocked carotid artery. Also, is he on any medications? Some, including ones for high cholesterol, having side effects including memory issues. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 4, 2018 Share Posted July 4, 2018 Eliana makes a good point. If there are areas that cannot be "reactivated" it is excellent to have a specific program to develop compensatory tools. A neuropsychologist may be able to pinpoint what those areas are and also suggest appropriate ways to compensate - this is a process not something achieved overnight, of course. Also, the anger, temper tantrums / outbursts are very common indeed with TBI and are likely the most difficult aspect of living with a person who has suffered a TBI. 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted July 4, 2018 Share Posted July 4, 2018 Specialists usually take a while to get into. I'd take him to the GP to start, mention memory issues, and ask for a full physical and cardiac screening, and possibly for a UTI. Then at least you'll know if he needs heart surgery quickly. If all the cardiac indicators are good then schedule something with specialists. If his memory is that poor he won't remember the first visit anyway. Another indicator for developing dementia (whatever the reason) is having trouble navigating new places. Have you seen any signs of that recently? Especially on your trip? Quote Link to comment Share on other sites More sharing options...
J-rap Posted July 5, 2018 Share Posted July 5, 2018 The test you talk about that seemed like a joke is a very standard test doctors do to evaluate neurological conditions. (If I'm thinking correctly.) But, I think it only pinpoints certain more urgent conditions. It is actually the same test that even the head of neurology at Mayo Clinic performs on my dh every year! Which my dh always passes with flying colors even though he has a massive brain injury (due to a stroke) resulting in a lot of very obvious symptoms. Sooo, I've never really understood what that test is about! (It seems silly to me, too!) When it comes to the subtle cognitive stuff, it really is so very helpful and necessary for YOU to be able to explain them to the doctor, in detail, because a short appointment when your dh is at his best will not reveal much at all. If his GP is an old friend, can you call him up by phone (via his nurse, probably)? You can tell either him or his nurse your very specific concerns and why, and ask them how to proceed -- with an initial appointment with that doctor or directly with a specialist. In our clinic, since we've gotten to know the doctors over the years, I'm comfortable just calling them up and talking to the nurse of a specific doctor regarding my concerns. She relays them to the doctor and they discuss and get back to me. Best of luck to you. It's a tough spot, I know. 2 Quote Link to comment Share on other sites More sharing options...
HS Mom in NC Posted July 5, 2018 Share Posted July 5, 2018 On 7/3/2018 at 10:09 PM, Annie G said: We had the same problem. Dad woke up one day and couldn’t remember how to make coffee or turn on the washing machine. The neurologist did an MRI and said nothing was wrong and said no need to see Dad again. A neuropsychologist is different. They look at behavior, emotion, cognitive issues AND brain function. Our experience w neurologists is if they can’t ‘find’ something wrong they are stumped. Dear grandson (age 5) has awful migraines. Neurologist said he can’t find a reason and told dd to give him Tylenol. Neurologists have specialties. My daughter has had migraines throughout childhood and her teen years, so we saw a pediatric neurologist that specialized in headaches and in seizures. Also, her neurologist said most people interested in studying the brain are obnoxious, socially awkward jerks. Quote Link to comment Share on other sites More sharing options...
sassenach Posted July 5, 2018 Share Posted July 5, 2018 50 minutes ago, Homeschool Mom in AZ said: Neurologists have specialties. My daughter has had migraines throughout childhood and her teen years, so we saw a pediatric neurologist that specialized in headaches and in seizures. Also, her neurologist said most people interested in studying the brain are obnoxious, socially awkward jerks. Lol. It’s true. Adult neurology involves a wide array of specialties. Ds was just hospitalized for seizures and the neuro had to completely rely on her colleagues because her specialty is ALS. I like the suggestions of neuropsych. An in-depth report might help him to grasp his own limitations. Quote Link to comment Share on other sites More sharing options...
Annie G Posted July 5, 2018 Share Posted July 5, 2018 1 hour ago, Homeschool Mom in AZ said: Neurologists have specialties. My daughter has had migraines throughout childhood and her teen years, so we saw a pediatric neurologist that specialized in headaches and in seizures. Also, her neurologist said most people interested in studying the brain are obnoxious, socially awkward jerks. This was a pediatric neurologist and the referring doc said he would have experience w migraines. Dd is just frustrated because his only advice was Tylenol. Quote Link to comment Share on other sites More sharing options...
Lady Florida. Posted July 5, 2018 Share Posted July 5, 2018 I don't have much in the way of suggestions but I wanted to offer ((((hugs)))). 10 hours ago, J-rap said: If his GP is an old friend, can you call him up by phone (via his nurse, probably)? You can tell either him or his nurse your very specific concerns and why, and ask them how to proceed -- with an initial appointment with that doctor or directly with a specialist. This sounds like a good idea. And since he's both friend and doctor maybe he can be the one to make the suggestion about seeing a specialist if you don't think your dh would be as open to it if it comes from you. 1 Quote Link to comment Share on other sites More sharing options...
goldberry Posted July 5, 2018 Share Posted July 5, 2018 On 7/3/2018 at 7:39 PM, itsheresomewhere said: Besides a cardiac work up, I highly recommend a hearing evaluation. This can be huge. A dear friend was having trouble with her husband getting angry, seeming to "forget" entire conversations and then getting defensive about it, etc. He ended up having significant hearing loss. Unfortunately, a similar thing happened that one doctor said it was significant, but another told him it was no big deal! He got hearing aids but often refuses to wear them because he doesn't think there is a problem. Now it's affecting his job, and he will not acknowledge it. Very sad and frustrating! Quote Link to comment Share on other sites More sharing options...
Caroline Posted July 5, 2018 Share Posted July 5, 2018 Maybe find a neurologist associated with Shock Trauma in Baltimore? They do some amazing things there. 1 Quote Link to comment Share on other sites More sharing options...
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