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elleng

(130,732 posts)
Tue Jul 12, 2022, 08:03 PM Jul 2022

The time may have arrived. Diagnosed with a condition 10+ years ago,

few significant symptoms (including balance issues,) but now, becoming daily burdensome, particularly my gait.

THIS is the condition, moved from Headline: hydrocephalus

Have avoided 'brain surgery,' and neurologist I first saw wasn't enthusiastic about it, but the time may have arrived. Am otherwise healthy senior, 4 young grandkids, but may look for a 'shunter' soon.

https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604

62 replies = new reply since forum marked as read
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The time may have arrived. Diagnosed with a condition 10+ years ago, (Original Post) elleng Jul 2022 OP
Peace and healing XanaDUer2 Jul 2022 #1
Ellen I am thinking of you. These chronic conditions are so hard. Please keep us posted. emulatorloo Jul 2022 #2
Best wishes to you, elleng. brer cat Jul 2022 #3
hoping for your best outcome rurallib Jul 2022 #4
Wishing you all the best whatever you decide, elleng. Diamond_Dog Jul 2022 #5
Best wishes. Bristlecone Jul 2022 #6
Best wishes in... 2naSalit Jul 2022 #7
Hang in there, Ellen... TygrBright Jul 2022 #8
Thanks, Bright. elleng Jul 2022 #12
warm wishes and hope for a healing outcome CurtEastPoint Jul 2022 #9
I'm so sorry you're having to deal with this, Ellen. Sending healing vibes, along highplainsdem Jul 2022 #10
I wish you health and happiness. And whatever you need to get better Maraya1969 Jul 2022 #11
This message was self-deleted by its author Chin music Jul 2022 #13
I am hoping and praying you will manage this and it will be questionseverything Jul 2022 #14
Sending good thoughts and I am confident you will make the best decision for your treatment. MLAA Jul 2022 #15
Very best wishes. usonian Jul 2022 #16
All my best wishes, Ellen. Solly Mack Jul 2022 #17
Good luck. multigraincracker Jul 2022 #18
Good, that's what I want to hear!!! elleng Jul 2022 #19
Sorry to hear. I hope you get well soon. Pepsidog Jul 2022 #20
I hope you get treatment soon Demovictory9 Jul 2022 #21
Warm wishes for a successful surgery Fla Dem Jul 2022 #22
Sending strong, strong healing vibes to you. Hoping all works out fine. LoisB Jul 2022 #23
ellen.. wishing you a rapid recovery Peacetrain Jul 2022 #24
Thanks. Good for your niece. elleng Jul 2022 #25
You'll be fine. c-rational Jul 2022 #26
I wish you a speedy recovery should you decide on surgery. You are so valued and your alwaysinasnit Jul 2022 #27
Sent up some healing vibes for you @elleng. Blessings to you. n/t iluvtennis Jul 2022 #28
All the best to you, elleng LNM Jul 2022 #29
Yikes! I hope this gets better with minimal treatment Wicked Blue Jul 2022 #30
Thanks, Blue. elleng Jul 2022 #31
My mother had to have shunts put in when she was 70. BittyJenkins Jul 2022 #32
Thanks! Excellent! elleng Jul 2022 #35
My sister has one. It made all the difference alfredo Jul 2022 #33
Good to hear; happy to hear WHENEVER they work! elleng Jul 2022 #37
Healing vibes to you, my friend FakeNoose Jul 2022 #34
As far as brain surgeries go, this one is farly low risk and high benefit. Warpy Jul 2022 #36
Good to hear the low risk and high benefit, elleng Jul 2022 #39
Welllll, shiiiit. Warpy Jul 2022 #46
Great, from Hopkins, around the corner! elleng Jul 2022 #48
Oh man. Please know... MontanaMama Jul 2022 #38
just focus on the benefits NJCher Jul 2022 #40
OH Cher, cataract surgeries were SO 'good!' elleng Jul 2022 #42
Wishing for the best tosh Jul 2022 #41
I am sorry you have to deal with this mgardener Jul 2022 #43
So sorry to hear this ellen. Docreed2003 Jul 2022 #44
All the best to you elleng. rubbersole Jul 2022 #45
I'm so sorry you are going through this Ellen PatSeg Jul 2022 #47
Oh elleng, how difficult it must be for you question everything Jul 2022 #49
I know the prospect of such major surgery is scary. ShazzieB Jul 2022 #50
Thanks, ShazzieB. elleng Jul 2022 #52
Oops, I posted twice. ShazzieB Jul 2022 #51
That sounds intense wendyb-NC Jul 2022 #53
You are lucky. My dad did not get diagnosed until it was too late to put a shunt in. applegrove Jul 2022 #54
Oh GOLLY! SO sorry. elleng Jul 2022 #55
Best of luck! applegrove Jul 2022 #56
A family friend had this surgery. Afterward, it never bothered her again. nt eppur_se_muova Jul 2022 #57
Good to hear! elleng Jul 2022 #59
Tough situation... sorry to hear you're going through this, elleng. JudyM Jul 2022 #58
FINALLY have appointment to begin whatever process @ Johns Hopkins, elleng Dec 2022 #60
All the best, let us know how things go. Marylanders are steady & strong as you know! appalachiablue Dec 2022 #61
Thanks, a'blue. elleng Dec 2022 #62

TygrBright

(20,755 posts)
8. Hang in there, Ellen...
Tue Jul 12, 2022, 08:25 PM
Jul 2022

The surgery is well-understood and usually helpful, although do not be surprised if a repeat is necessary with this condition. You can get it under control and even beat it - The DH and I have a friend who made it through.

Holding you in the Light for strength and healing!

encouragingly,
Bright

elleng

(130,732 posts)
12. Thanks, Bright.
Tue Jul 12, 2022, 08:30 PM
Jul 2022

ONE of the aspects that's 'encouraged' me to avoid/delay was the fairly common need for repeat.

E

highplainsdem

(48,910 posts)
10. I'm so sorry you're having to deal with this, Ellen. Sending healing vibes, along
Tue Jul 12, 2022, 08:27 PM
Jul 2022

with prayers and hugs.

Maraya1969

(22,462 posts)
11. I wish you health and happiness. And whatever you need to get better
Tue Jul 12, 2022, 08:27 PM
Jul 2022

I hope you find it easy. I wouldn't be afraid though - modern medicine is far too amazing!

Response to elleng (Original post)

questionseverything

(9,645 posts)
14. I am hoping and praying you will manage this and it will be
Tue Jul 12, 2022, 08:40 PM
Jul 2022

Bothersome but not overwhelming

Cause you are the best!

MLAA

(17,250 posts)
15. Sending good thoughts and I am confident you will make the best decision for your treatment.
Tue Jul 12, 2022, 08:45 PM
Jul 2022

You are a treasure here and I enjoy and appreciate your posts.

Fla Dem

(23,586 posts)
22. Warm wishes for a successful surgery
Tue Jul 12, 2022, 09:16 PM
Jul 2022

And a quick recovery.

After all, DU couldn’t get through the day without “elleng’s” contributions.

All the best Ellen. You have all of us pulling for you!

Peacetrain

(22,872 posts)
24. ellen.. wishing you a rapid recovery
Tue Jul 12, 2022, 09:26 PM
Jul 2022

if you have the surgery.. I have a niece that has had numerous surgeries to remove non cancerous tumors from the brain.. she has done very very well with them.

alwaysinasnit

(5,059 posts)
27. I wish you a speedy recovery should you decide on surgery. You are so valued and your
Tue Jul 12, 2022, 09:44 PM
Jul 2022

contributions to our digital community are much appreciated. Please keep us updated. We will be thinking of you.

LNM

(1,078 posts)
29. All the best to you, elleng
Tue Jul 12, 2022, 09:54 PM
Jul 2022

I don't post much but am here daily. I treasure you Metropolitan Diary posts and your posts in the Travel group.

Wishing you well.

Wicked Blue

(5,819 posts)
30. Yikes! I hope this gets better with minimal treatment
Tue Jul 12, 2022, 09:55 PM
Jul 2022

((((((((((((((((((((((((((((((((((( ))))))))))))))))))))))))))))))))))))))))0

I read the adult symptoms and saw that I have several of them - balance, gait etc. But nobody's ever thought I had hydrocephalus, just nerve damage to the inner ear.

elleng

(130,732 posts)
31. Thanks, Blue.
Tue Jul 12, 2022, 10:01 PM
Jul 2022

don't know about 'minimal treatment,' as a shunt into (or around) my brain doesn't sound minimal, but I hope so!

Interesting that over time, after having heard the diagnosis, it occurred to me that I'd had symptoms from the time I was a kid, like 'trying' to study ballet, @ around 8 years old!

BittyJenkins

(408 posts)
32. My mother had to have shunts put in when she was 70.
Tue Jul 12, 2022, 10:06 PM
Jul 2022

She was seventy and had a colloid cyst blocking her cerebrospinal fluid.
They took out the cyst and put shunts in. She felt so much better after the surgery.

Wishing you the best.

alfredo

(60,071 posts)
33. My sister has one. It made all the difference
Tue Jul 12, 2022, 10:06 PM
Jul 2022

I have dizziness too, but it is from brain damage from radiation treatments

I hope the shunt works for you.

Warpy

(111,141 posts)
36. As far as brain surgeries go, this one is farly low risk and high benefit.
Tue Jul 12, 2022, 10:16 PM
Jul 2022

and recovery is usually very rapid, with improvement in gait and balance occurring quickly.

Here's a good article on the surgery, write down your questions so you;ll have them when you meet the neurosurgeon.

elleng

(130,732 posts)
39. Good to hear the low risk and high benefit,
Tue Jul 12, 2022, 10:18 PM
Jul 2022

tho I've read they have to be repeated 'fairly' often.

Plz attach article.

NJCher

(35,619 posts)
40. just focus on the benefits
Tue Jul 12, 2022, 10:19 PM
Jul 2022

best way to get through it. And who knows, it might be a positive experience. I never dreamed cataract surgery would be a nice experience, but it was for me.

elleng

(130,732 posts)
42. OH Cher, cataract surgeries were SO 'good!'
Tue Jul 12, 2022, 10:25 PM
Jul 2022

This one? Who knows??? Several have suggested good news.

Docreed2003

(16,850 posts)
44. So sorry to hear this ellen.
Tue Jul 12, 2022, 10:33 PM
Jul 2022

You will definitely be in my thoughts as you pursue treatment. Best wishes for a safe and speedy recovery.

PatSeg

(47,260 posts)
47. I'm so sorry you are going through this Ellen
Tue Jul 12, 2022, 10:36 PM
Jul 2022

It seems that when we get older, so many of our 'parts' don't work right anymore. Hope all goes well if you decide on the surgery. You still have so many years to enjoy with your grandchildren.

question everything

(47,434 posts)
49. Oh elleng, how difficult it must be for you
Tue Jul 12, 2022, 10:54 PM
Jul 2022

but reading comments on this thread it is bearable.

Please let us know if and when you will undergo this procedure.

I certainly will miss your gorgeous weather photos.

ShazzieB

(16,273 posts)
50. I know the prospect of such major surgery is scary.
Tue Jul 12, 2022, 11:03 PM
Jul 2022

Last edited Tue Jul 12, 2022, 11:54 PM - Edit history (1)

I remember how freaked out I was 4 years ago when I found out I needed to have my aortic valve replaced. I have never not wanted to do something I desperately needed to do SO much. The risks were very scary, but in the end, the decision pretty much made itself. The choice was between taking that journey into the unknown or experiencing steadily declining health for the rest of whatever shortened life span I had left. I was not willing to settle for the latter.

The recovery was grueling, but considering the alternative, SO worth it. I pray it will be the same for you if you have your shunt surgery. Wishing you the absolute best of everything!


elleng

(130,732 posts)
52. Thanks, ShazzieB.
Tue Jul 12, 2022, 11:10 PM
Jul 2022

Been avoiding it for years, and until recently, no real NEED, but today, could barely walk from car to Dunkin in less than 30 minutes, usually 3 minutes! (so I missed beginning of J6 hearing! OH NO!!!)

So looked back into symptoms, where I found my recent gait deterioration appeared, and I said GOTTA do something! Will call doc tomorrow.

wendyb-NC

(3,302 posts)
53. That sounds intense
Tue Jul 12, 2022, 11:18 PM
Jul 2022

Hope you connect with the best neurologist/neurosurgeon to make the diagnosis and do the proper treatment.
Sending good vibrations and healing light so you will be back to normal/baseline motor ability. You want to be able to do your photography, and keep up with your grandkids, and everything else you enjoy. Blessings.

elleng

(130,732 posts)
55. Oh GOLLY! SO sorry.
Tue Jul 12, 2022, 11:54 PM
Jul 2022

I was diagnosed around 10 years ago, but have ignored and lived with it since then, until now, when symptoms are becoming too burdensome. HOPE it's not too late.

My neurologist, @ time of diagnosis, wasn't keen on surgery and/or didn't know of a suitable surgeon; also may have thought it wasn't 'critical,' at the time.

New doc now, new location, and hope I can have it addressed without too much difficulty.

JudyM

(29,192 posts)
58. Tough situation... sorry to hear you're going through this, elleng.
Wed Jul 13, 2022, 08:17 AM
Jul 2022

Wishing you strength and a good outcome.

elleng

(130,732 posts)
60. FINALLY have appointment to begin whatever process @ Johns Hopkins,
Thu Dec 8, 2022, 01:46 PM
Dec 2022

January 19!

Start with 10 a.m. MRI, and continue with more appointments including 'physical therapy,' likely to determine extent of 'disability.'

SO ONWARD!!!!

(Overnight before, so can make early appointment AND have dinner in a good Baltimore restaurant!)

elleng

(130,732 posts)
62. Thanks, a'blue.
Fri Dec 9, 2022, 06:58 PM
Dec 2022

Sure will. Been waiting for so long, I almost told 'Lisa' who called with the news, that I 'love' her! Had a pleasant conversation.

This sets up preliminary stuff, new mri and meeting with clinicians. (May stay night before in Baltimore due to early appointment for mri, so good restaurant before!)

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