Update on Sudden Decline: Several weeks ago... - PSP Association

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Update on Sudden Decline

Baytalon
Baytalon

Several weeks ago, I wrote about my husband's sudden decline-losing his clarity of speech and his inclination to speak, loss of appetite, even worse balance issues. I had assumed that 3 years from the diagnosis of PSP, his relative slow decline had made up for lost time. I was wrong. During one of his multiple falls, he broke his rib. On a follow doctor's visit, I asked about the slurred speech which the doctor has noted. After a quick check for a UTI, he sent us to the hospital immediately for a CT scan. Steve was diagnosed with a subdural hematoma. Our neurologist's best guesstimate was that the bleed had been going on for 3 to 6 weeks...possibly longer. He was classified as a chronic not a critical bleed and so while surgery was necessary, it wasn't deemed an emergency need. That was good news because what the neurologist and the neuro surgeon missed was that Steve has been on anti-coagulants (Plavix and aspirin) for his heart for several years. He was transported for surgery, but then held as his platelet count was far to low. Three days later he was discharged and told to return in a week when his platelets had a chance to regenerate.

On Dec. 18, Steve had what is called "burr hole" surgery during which "small" holes were drilled into his cranium and the blood and cerebral fluid vacuumed out. Some how I didn't expect two "small" holes to require 19 staples to close, but that is what we have. Almost immediately upon recovering from anesthesia, Steve's speech had returned to clarity and animation. The initial surgery removed over 8 ounces of fluid. Over the next 3 days an additional 3 ounces of fluid drained. I guess what we learned is not to assume sudden changes are automatically a progression of the disease. In hindsight, I think the bleed may well have been older than 3 weeks because of the increase in symptoms I had simply attributed to PSP.

13 Replies
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Any falls, especially when there is a head strike should be investigated. I am glad it was found and dealt with.

Ron

So happy your hubby can speak better now... it makes a world of difference doesn't it. Sounds like your doctor was on the ball but know it has been hard on you & hubby. Hope things settle down soon.

I spent tooooo much time in brain injury units after my son's motorbike accident so l love & admire doctors and nurses. (Well l did meet one doctor l wasn't happy with but that's not too bad.)

Sending gentle hugs... Granni B

Thank you for sharing your experience!.

Hugs and luck.

Luis

What lovely news to hear that the problem was identified and rectified and that you have Steve talking with you again. A reminder to us all that things are not always what they may seem. I have a daughter who has had diabetes since she was 6 and I remember her saying to me once that even if she had pain it was always her diabetes that was what they looked at first !! Happy New Year. AliBee

I guess we must then be alert to all falls. I always felt that if CH was not in pain and I could get him up then we need not worry. I can see I was wrong. Although the number of falls have lessened due to more frequent use of wheelchair and me taking no chances it is possible we may get caught out. Thank you for this advice. Another thing to look out for... val

At least it was something treatable.

I am so glad that the doctors were able to treat your husband. Good news that it has helped him too. As you say people think everything is PSP related but of course that isn't always the case. Hope you both have a happy New Year.

Marie x

Wow, thanks for sharing your story

Thanks for sharing this information. I'm glad that it worked out "well" in the end.

Tim x

Great lesson ~ I have been neglecting to go to neuro. Jack has had numerous whacks to the noggin' - He always assures me he's OK.

Dear Baytalon - What great news!! You are so right - there IS so often the reality of disease progression: but so important to check out sudden changes for just this sort of situation.

I'm relieved along with you :-)

Sounds like a good set up for a Happy New Year! Happiness in midst of PSP: Way to go :-)

XXX Anne G,.

Many thanks for the update - a good lesson for us all that whilst PSP/CBD dominate our lives we do need to look outside of that box!!! So pleased that Steve is now able to communicate again . Wishing you both a calmer 2019

Love Tippy

Baytalon
Baytalon in reply to Tippyleaf

Forgive this belated, thanks, Tippyleaf, I'm struggling to keep up lately.

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