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elleng

(136,071 posts)
Tue Jul 19, 2022, 03:09 PM Jul 2022

DARN, just heard

'the clinic is currently not scheduling new patients till September or later;' this is the hydrocephalus clinic @ Johns Hopkins, so my gait declines daily (no pain; mostly re: balance,) but been hoping to begin process of having a 'shunt' inserted so things can begin improving.

re: https://www.democraticunderground.com/114228450

28 replies = new reply since forum marked as read
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DARN, just heard (Original Post) elleng Jul 2022 OP
Im sorry you have to wait so long. redwitch Jul 2022 #1
THANKS, redwitch, and so glad to hear of your SIL law's progress AND about the doctor! elleng Jul 2022 #2
Sorry to hear what you are going through Ellen, and wish you the best. September doesn't seem JohnSJ Jul 2022 #3
Right, sweating in July! elleng Jul 2022 #4
............ JohnSJ Jul 2022 #7
Best wishes for your procedure in Sept! Nt spooky3 Jul 2022 #5
Is there another facility ? SheltieLover Jul 2022 #6
MIGHT be, but I suspect Johns Hopkins is 'preferred,' and most experienced. elleng Jul 2022 #14
what about cleveland clinic? mopinko Jul 2022 #17
Not going that far! Maybe Georgetown. elleng Jul 2022 #18
it's not that far. make a nice trip. rrhof. it's a nice town. mopinko Jul 2022 #19
Maybe Philly? redwitch Jul 2022 #28
Sorry to hear you are having this issue, Ellen. SheltieLover Jul 2022 #23
I don't think there's anything 'STAT' about it, sadly; elleng Jul 2022 #24
Did you ask your dr? SheltieLover Jul 2022 #25
Spoke about it with neurologist who diagnosed it 10 years ago, elleng Jul 2022 #26
Neurologist is likely doing telemed now SheltieLover Jul 2022 #27
that sucks. barbtries Jul 2022 #8
Yes, will get on list as soon as I complete 16 page new patient info form. elleng Jul 2022 #13
lol barbtries Jul 2022 #20
They know NOTHING about me, elleng Jul 2022 #21
oh, oh oh barbtries Jul 2022 #22
I hope you have someone close MuseRider Jul 2022 #9
Thanks, Muse. elleng Jul 2022 #11
Really sorry for the wait and frustration. JohnnyLib2 Jul 2022 #10
I don't know about another facility; will ask my Doc soon, but elleng Jul 2022 #12
Ask for any cancellation iamateacher Jul 2022 #15
I'm sorry you have to wait so long to get an appointment, elleng Diamond_Dog Jul 2022 #16

redwitch

(15,081 posts)
1. Im sorry you have to wait so long.
Tue Jul 19, 2022, 03:12 PM
Jul 2022

My SIL was born with hydrocephalus and the Dr. who invented the shunt saved her life when she got a shunt at 18 months. Adult shunt went in at 18 years. Hang in there and take care!

elleng

(136,071 posts)
2. THANKS, redwitch, and so glad to hear of your SIL law's progress AND about the doctor!
Tue Jul 19, 2022, 03:16 PM
Jul 2022

I WILL hang in there/here; right now, I'm SWEATING, just returned from grocery store, and the back and forth to/from the car in 87 degree weather, with what feels like HIGH humidity, is a real nuisance!

JohnSJ

(96,546 posts)
3. Sorry to hear what you are going through Ellen, and wish you the best. September doesn't seem
Tue Jul 19, 2022, 03:16 PM
Jul 2022

like that far off. We are already in the middle of July

Wishing you a quick recovery when they do the procedure


SheltieLover

(59,611 posts)
23. Sorry to hear you are having this issue, Ellen.
Tue Jul 19, 2022, 04:30 PM
Jul 2022

Maybe your doc can order a STAT procedure? I'd try that route first.

elleng

(136,071 posts)
24. I don't think there's anything 'STAT' about it, sadly;
Tue Jul 19, 2022, 04:35 PM
Jul 2022

need to drain the accumulating fluid from wherever in/around brain it accumulates.

elleng

(136,071 posts)
26. Spoke about it with neurologist who diagnosed it 10 years ago,
Tue Jul 19, 2022, 04:44 PM
Jul 2022

and have lived with it (for a long time, imo,) but is only now burdensome; affecting my gait. Neurologist wasn't enthusiastic about it, at the time, but may have been because she didn't have anyone to refer to AND was clearly not 'urgent' then.

THAT neurologist's office was/is 200 miles from where I live now, and the 'remedy' requires 'surgery,' fairly unusual speciality.

barbtries

(29,794 posts)
8. that sucks.
Tue Jul 19, 2022, 03:21 PM
Jul 2022

can you get on a list for cancellations? I recently had an appt for a CPAP that they scheduled for OCTOBER (this was in May or June), and when I called back I lucked into an appointment the very next day. Hopefully you'll get in sooner than September.

barbtries

(29,794 posts)
20. lol
Tue Jul 19, 2022, 04:20 PM
Jul 2022

16 pages to reiterate everything they already know, right? I hope you're as lucky as I was.

ETA people opposed to universal health care like to point out how long people wait for appointments in the countries that have it. they got nothing on the for-profit model we all suffer under here.

elleng

(136,071 posts)
21. They know NOTHING about me,
Tue Jul 19, 2022, 04:21 PM
Jul 2022

VERY new patient to Hopkins. They need full history, which I have to provide for them.

barbtries

(29,794 posts)
22. oh, oh oh
Tue Jul 19, 2022, 04:26 PM
Jul 2022

I go to Duke and they still make me go through hoops for each appointment even though i've been a patient there for several years.

I have worked at Johns Hopkins on a clinical trial. I hope your doctor is as capable and caring as the one I worked with, she is a lovely person and very dedicated professional.

MuseRider

(34,370 posts)
9. I hope you have someone close
Tue Jul 19, 2022, 03:22 PM
Jul 2022

who can look in on you in case you do fall. Being a senior myself I have to chuckle still at the "Help I've fallen and I can't get up!" ads but as I have my own problems with my heart and see my own balance getting worse I feel a little different.

I do not know your living situation so, if you think it may get significantly worse see if there is a program for people to check on you please. I would hate for you to fall and not have the hope of someone who calls each day or more.

Many supporting thoughts go to you. One small bit of advice as I saved myself from laying in the gravel for hours, take a cane with you everywhere you go. I fell coming out of my horse barn, about 1/4 mile from the house and not visible. I had just had a stroke after a procedure, my phone was broken and with my cane I was able to get up and over to the car and get back to the house somehow. I know you get around taking pictures so if you do not have one it might be a good thought about getting one and having it in case, just in case.

I am sorry you are dealing with this.

elleng

(136,071 posts)
11. Thanks, Muse.
Tue Jul 19, 2022, 03:35 PM
Jul 2022

Yes, 'plenty' peeps around here, daughter, son in law and other family members, AND neighbor/landlord who is very cooperative. Will refill rx for osteo meds soon, @ nearby CVS, too.

I DO take walking stick everywhere, AND phone, small flip phone so easy to keep in pocket. GOLLY, no adventures such as you experienced likely, no horse barn! and car @ my door, with easy access to paths, neighbor's house, and roads.

elleng

(136,071 posts)
12. I don't know about another facility; will ask my Doc soon, but
Tue Jul 19, 2022, 03:37 PM
Jul 2022

I do like idea of going to Johns Hopkins due to their experience and reputation.

Diamond_Dog

(34,641 posts)
16. I'm sorry you have to wait so long to get an appointment, elleng
Tue Jul 19, 2022, 03:56 PM
Jul 2022

It’s so maddening. Why don’t we have more doctors in this country??

Please take care of yourself.

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