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elleng

(136,071 posts)
Fri Feb 10, 2023, 03:17 PM Feb 2023

Following up: Returned home yesterday from Johns Hopkins Baltimore after test to confirm reason

for my unsteady gait, years ago diagnosed as hydrocephalus, in which fluid accumulates in the brain.

'Long' story short, had spinal tap Wednesday morning, NO PROBLEM, NOPAIN, with before and after physical therapy (and woke up yesterday and walking around home today.) Looks like it's CERTAIN, woke up ready to shoot hoops (tho I've never done that!!! LOL!) so I expect to hear 'official' confirmation from the neuro team in a few weeks, paving the way for resolution! (which, holds breath) means/suggests insertion of a shunt in brain after hole 'drilled' to enable continual drainage of fluid so little if any accumulation, so MORE hoops!

That's all folks! (except, daughter who lives in NJ drove down to be with me. She's an occupational therapist so useful experience. My other daughter, who lives near me, had her own Dr. Appt. yesterday, so couldn't accompany me (which was a good thing 'cause the 'girls,' adult parents of youngsters themselves, don't speak to each other. I may have to knock some heads together later (joke?) but sadly I think there are unresolvable problems in this respect.

Staff @ Hopkins is SUPER!

More LATER in February.

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Following up: Returned home yesterday from Johns Hopkins Baltimore after test to confirm reason (Original Post) elleng Feb 2023 OP
((elleng)) blm Feb 2023 #1
Keeping fingers crossed. Please keep updating.. question everything Feb 2023 #2
Yeah! I feel the same way about Mayo. Phoenix61 Feb 2023 #3
REALLY! elleng Feb 2023 #5
Take care, elleng gademocrat7 Feb 2023 #4
Oh best of luck, I will be thinking about you Walleye Feb 2023 #6
{{elleng}}} so-o-o glad you are at Hopkins! fierywoman Feb 2023 #7
Best to you, ellen yorkster Feb 2023 #8
When I was much younger... Dale in Laurel MD Feb 2023 #9
Seems that way to me! elleng Feb 2023 #23
JUST read about Johns Hopkins. IMPRESSIVE. elleng Feb 2023 #40
Interesting. It was suggested my elderly mother may be suffering from this. Freethinker65 Feb 2023 #10
Check it out, if possible, if decent neurologists around. elleng Feb 2023 #24
Wishing you the BEST elleng! Hope the diagnosis is spot on.. CousinIT Feb 2023 #11
Glad your news is good, elleng. Hoping that the future treatment brings you health and peace! ancianita Feb 2023 #12
Best wishes, elleng. They work miracles these days. judesedit Feb 2023 #13
Keep us in the know hugs Ellen. Duncanpup Feb 2023 #14
Thinking of you. Best of everything. Solly Mack Feb 2023 #15
Great happy for you. multigraincracker Feb 2023 #16
Glad to hear you are getting excellent care! MLAA Feb 2023 #17
GREAT! elleng Feb 2023 #25
I hope those weeks go quickly for you to get that confirmation! DeeDeeNY Feb 2023 #18
Digital hugs elleng and wishes for speedy recovery. alwaysinasnit Feb 2023 #19
Good thoughts for BittyJenkins Feb 2023 #20
Yikes! Sorry you have to go througt this. I hope there's a better way to treat it? CaptainTruth Feb 2023 #21
No drugs, gotta re-route the spinal fluid so it doesn't collect. elleng Feb 2023 #26
Well, of course trust your doctors, they know best. CaptainTruth Feb 2023 #38
Thanks, and after (no idea now when THE procedure will occur,) elleng Feb 2023 #39
Love this song and RC. blm Feb 2023 #41
Not a medical person here, but I'm familiar with hydrocephalus. ShazzieB Feb 2023 #27
Thanks! elleng Feb 2023 #29
My pleasure! ShazzieB Feb 2023 #33
It's never too late to learn to shoot hoops. n/t malthaussen Feb 2023 #22
Would be SO neat, and my 9 year old grandson has real skills! elleng Feb 2023 #28
Great news! So glad to hear you're feeling better. ❤️ crickets Feb 2023 #30
Sounds scary. pandr32 Feb 2023 #31
So goad to hear you're doing well and have a definitive diagnosis! ShazzieB Feb 2023 #32
YAY! Thank you so much for sharing good news, elleng - hope the surgery is a great success! n/t TygrBright Feb 2023 #34
Oh my! babylonsister Feb 2023 #35
HI, b'sis!!! elleng Feb 2023 #36
(((((ELLEN))))) SheltieLover Feb 2023 #37
Following up on Follow Up, for any wondering about John's Hopkins: 'My' Physician's Assistant, elleng Feb 2023 #42

fierywoman

(8,105 posts)
7. {{elleng}}} so-o-o glad you are at Hopkins!
Fri Feb 10, 2023, 03:39 PM
Feb 2023

Will be thinking of you, hoping, praying and sending light

Dale in Laurel MD

(751 posts)
9. When I was much younger...
Fri Feb 10, 2023, 03:43 PM
Feb 2023

almost 50 years ago now, I was employed in the nursing division at Hopkins.

Unless things have really slipped in the meantime, you're in the best hands in the world!

elleng

(136,071 posts)
24. Check it out, if possible, if decent neurologists around.
Fri Feb 10, 2023, 05:24 PM
Feb 2023

I suspect I've had it for a LONG time, has gotten progressively worse, and as otherwise healthy, with 4 young grands and @ age 78, I've decided to make the most of my life.

CousinIT

(10,203 posts)
11. Wishing you the BEST elleng! Hope the diagnosis is spot on..
Fri Feb 10, 2023, 04:29 PM
Feb 2023

....and the shunt works so you can get back to normal!



ancianita

(38,559 posts)
12. Glad your news is good, elleng. Hoping that the future treatment brings you health and peace!
Fri Feb 10, 2023, 04:34 PM
Feb 2023
Keep your spirits up.

judesedit

(4,510 posts)
13. Best wishes, elleng. They work miracles these days.
Fri Feb 10, 2023, 04:36 PM
Feb 2023

Hope it's resolved quickly, so we can continue to enjoy your photos. Keep us posted.

Solly Mack

(92,819 posts)
15. Thinking of you. Best of everything.
Fri Feb 10, 2023, 04:43 PM
Feb 2023

My sister had a shunt inserted to drain fluid from her brain years ago and it all worked out. Hoping the same for you.

multigraincracker

(34,077 posts)
16. Great happy for you.
Fri Feb 10, 2023, 04:44 PM
Feb 2023

Doctors are doing a much better job for me now that I ask if my private nurse can come in with me. Also, my new wife.

MLAA

(18,602 posts)
17. Glad to hear you are getting excellent care!
Fri Feb 10, 2023, 04:47 PM
Feb 2023

I was there in 2003 when I gave my mom a kidney. Oddly enough we weren’t a match but Hopkins pioneered a process to do transplants between non matches. She got an extra good 10 years 🙂. The Drs, Nurses and staff were all amazing.

You are in GREAT hands!

elleng

(136,071 posts)
25. GREAT!
Fri Feb 10, 2023, 05:25 PM
Feb 2023

They're doing so many experiments. I agreed they may use my spinal fluid and blood for several different studies.

BittyJenkins

(587 posts)
20. Good thoughts for
Fri Feb 10, 2023, 05:02 PM
Feb 2023

you and good luck.
My mom had to have tubes inserted to drain her spinal fluid and she did fine. You didn’t know she had them unless you touched her scalp. She had mighty thick hair so it was hard to feel them if you tried.
So glad they can fix your problem.
♥️

CaptainTruth

(7,219 posts)
21. Yikes! Sorry you have to go througt this. I hope there's a better way to treat it?
Fri Feb 10, 2023, 05:07 PM
Feb 2023

I mean, better than literally "a hole in the head"? Drugs, maybe?

Best of luck!!!

elleng

(136,071 posts)
26. No drugs, gotta re-route the spinal fluid so it doesn't collect.
Fri Feb 10, 2023, 05:29 PM
Feb 2023

I agree, hole in the head has kept me from rushing into this, but daily life becoming more burdensome, so wanna minimize it as much as possible.

CaptainTruth

(7,219 posts)
38. Well, of course trust your doctors, they know best.
Fri Feb 10, 2023, 08:47 PM
Feb 2023

I just hope it's not too bad for you.

You will be in our thoughts!

elleng

(136,071 posts)
39. Thanks, and after (no idea now when THE procedure will occur,)
Fri Feb 10, 2023, 08:53 PM
Feb 2023

Come Onna My House, and let's PARTY, ALL! (tho draining of fluid will be gradual.)


Note the Hirschfield sketch, and know who is Rosemary Clooney's SON???!!!

ShazzieB

(18,670 posts)
27. Not a medical person here, but I'm familiar with hydrocephalus.
Fri Feb 10, 2023, 05:30 PM
Feb 2023

Familiar enough to be able to state unequivocally that surgery is the best and only way to treat it. You have to get that excess fluid out of there, and the only way to do that is to install a shunt to drain it away from the brain to another part of the body where it can be safely absorbed.

Fortunately, this is a relatively short and uncomplicated surgery and one that doctors have had plenty of experience with. They've been doing it on babies born with hydrocephalus for decades with great success, and I'm pretty sure that doing it on a full grown adult would be a snap by comparison.

Having it done in a world class hospital like Johns Hopkins is just about the best case scenario anyone could ask for. I'm sure elleng is going to be just fine!

More info: https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/procedures/shunts.html

pandr32

(12,170 posts)
31. Sounds scary.
Fri Feb 10, 2023, 05:44 PM
Feb 2023

I'm so glad that it has been sorted out for you. Best wishes for more shooting hoops for as long as you want to shoot them.

ShazzieB

(18,670 posts)
32. So goad to hear you're doing well and have a definitive diagnosis!
Fri Feb 10, 2023, 05:46 PM
Feb 2023

I know contemplating and going through surgery can be scary, but from what I know, this is actually a pretty short, relatively simple procedure, and it should greatly improve your quality of life. Maybe trying to focus on the benefits you're going to get from this will help you get through it. Easier said than done, I know, but that's my suggestion, fwiw.

Keep us posted so we can hold you in our thoughts and prayers when the time comes.

babylonsister

(171,610 posts)
35. Oh my!
Fri Feb 10, 2023, 07:25 PM
Feb 2023

Had no idea you were going through this. I've found, the older I get, it's ALWAYS something!

Glad you went to the experts; seems the shunt will solve all your woes, and I just bet those docs have a bit of practice inserting them.

Hang in there, my friend!

elleng

(136,071 posts)
42. Following up on Follow Up, for any wondering about John's Hopkins: 'My' Physician's Assistant,
Fri Feb 17, 2023, 04:49 PM
Feb 2023

with whom I first met and who last week did the Spinal Puncture, just CALLED me, to find out how I felt the day after the puncture, and how I'm feeling now.

We have a scheduled tele-appointment Tuesday, and will follow up thereafter.

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