We did the EEG, which showed only that my mom has slower brain activity on the right side vs left (from stroke she had at 35). So all good there. He said her vitamin B12 is too low (although the response when I asked the NH about it was "normal range"). So Mom is getting shots to get the number up. He also prescribed Namenda. Anyone have experience with this Alzheimer's drug? My mom is currently taking Remeron, Buspar and Zoloft. Are there interactions with these antidepressants?
Also, when I said this doesn't answer the question about her poor balance and gait, lack of mobility, and incontinence, he looked at her chart and said, "Why has no one ever ordered an MRI for her?" That's been my question ever since I started this rodeo, so we are finally going to get one next week.
The other issue is the replacement knee. The NH did an xray and blood work checking for gout. This knee-in bone scan ony showed postoperative changes. PT hit me while I was there, wondering why she's not had an MRI on the knee. UM when did I become the physician? HTF do I know why it's not been ordered by anyone in the last 2 months? Each hospital visit the complaint has been said and nothing done. Is that the patient's fault or the caregiver's? I'm feeling VERY defeated after yesterday. My mom is trying so hard to recover. She is more cognitively there, which is great, but phyiscally she is still stuck in 1st gear.
The answer to "why no MRI" is "no other doctor ordered one".
When my granddaughter was a newborn, she was hospitalized overnight for jaundice. Various nurses came in throughout the night. Each one told my poor daughter the exact opposite of what the last one had told her (nurse/don't nurse/position this way/etc.)
Just before rounds started, a nurse came in and flipped the baby on to her stomach. The chief of pediatrics walked in with his entourage and bellowed at my 3 day post partum daughter "who the hell put this baby on her stomach?"
I stood up before my daughter could burst into tears and said "the nurse who just left, Dr. B".
The medical profession is just as full of idiots as any other profession. It's NOT you.
My mom is aware enough that she wanted to see the DR notes after the visit. He does mention Alzheimers and Dementia- which she and I have talked about previously. She has improved cognitively and I told her I would not lie to her about anything as we go thru this process. I'm hoping the B12 and meds will help her improve more.
The mobility is like a whole other battlefield. That's the part that doesn't seem to want to cooperate.
I hope that the B12 shots have helped your mom feel better.
Be sure to let us know how the MRI goes.
Did they check her Uric Acid?
DH aunt is on namenda. No known interactions. She’s been on it several years.
normal pressure hydrocephalus. At least this would explain my moms inability to walk.- She went from her terrible gait/falling normal self in Nov to the fractured sacrum and UTI in Dec. At that time she was complaining of pains and PT/family figured she had a fear of falling that was causing her to keep from trying to walk. It seems NPH might be more likely the reason.
SO now we have a "slight staff" infection in her complete replacement knee- that we complained about in the hospital and NH over and over again- finally the orthopedic who did the knee saw us and did a culture. Next week we go to Infectious Disease- hopefully they will load us up with meds to get this corrected. Visit with a neurosurgeon the following to discuss options and if mom is a good candidate for a shunt.
I am finally feeling like we might be getting a finish line in sight. Some real cause/effect answers and can help my mom get back to at least 80% of who she was in November.
Fingers crossed!
Neurosurgeon- dashed our hopes yesterday. He reviewed the MRI CD and all the notes. It is his prognoses that it is NOT NPH. There is brain atrophy ( i believe he said right frontal lobe) and that when there is atrophy there is more room for CSF in the brain. He did do the sensation and strength tests that the Neuro did and when we were at the left arm (the shoulder is in bad shape- only a surgury would repair)- as I mentioned it he mumbled its more than just the shoulder as issue. (I was taken aback by his seemingly cold behavior). I feel like the area in my mom's brain that suffered damage when she had her major stroke at age 35. It would explain her "all of a sudden" left side weaknesses. As in she did not feel the pin pricks on her left arm vs feeling them on her right arm.
She took it very hard but he did say the infection can be part of the overall issues and once that is cleared up there is no reason to think that she cannot continue to heal and improve.
I helped her get from the chair to the bed last night- her back still pains her- from the sacral fracture- so not back to square one but not 15ft forward. Day by day.
So, is there evidence that this is NPH and NOT dementia?
Imo, NPH should always be ruled out before making a dementia dx.
Sad about the staph infection. New York Times Science writer Jane Brody had a knee replacement at a top NYC hospital and complained to her surgeon of terrible pain that she KNEW wasn't post-op. He dismissed her concerns.
She sought a second opinion and indeed it was an infection.
So, question if the dementia drug is necessary.
It feels like we have a light at the end of the tunnel.
We also parted ways with the absolutely good for nothing boyfriend. Helpful to all of us not to have this additional stress over money, is she coming home to me, blah blah blah.. bye bye!
Thanks Barb!!!! We are getting there!
I just said this on another post. I hate hospitals. My PCP knows more about me than a doctor that sees me for the first time. They will not consult with the PCP or the specialist you using. Mom had a Neurologist that had privileges at the Hospital Mom was in. I gave the Nurse a list of her doctors 3 of which had privileges. I always stop at the Nurses desk and she told me Mom was having a Neuro consult with Dr X. I said why would you not call Dr G the doctor on the list I gave. No response. I then told her to get Dr G in. You have to be be an Advocate even for yourself. Question, Question. If the answer doesn't sound right, it probably isn't.
Luckily- when we could not get an ID appointment right away I asked the Charge Nurse to reach out to overseeing NH doctor to get her on some antibiotics to hold us over until then. They did within 24 hours of results and infact called me today to say Dr extended the IV antibiotics to the 5th. Gives us time to get to ID dr and have them also get things ordered.
The NH is far from a perfect place but I have found that when I work with them as my team, it's much more productive and supportive for mom, me and the staff.