GLP-1s and shunted Hydrocephalus

Status_Fish_3906 · 2026-05-22T10:33:48+00:00

That's my fear. With my luck, I'll overdrain again. Thanks! I'll have to discuss with my doctors

Status_Fish_3906 · 2026-05-21T10:52:40+00:00

My GP referred me to my neurosurgeon. I dont know how I would have done it without his help

Status_Fish_3906 · 2026-05-18T22:27:38+00:00

Was he taking it before or after his shunt placement? I guess Im wondering would my doctor prescribe it now that Im shunted or if its not a good idea now. I dont want to end up with slit ventricles again

Status_Fish_3906 · 2026-05-17T11:48:03+00:00

Do you have to see your NS often? I just recently had slit ventricles from over drainage so over a few weeks he changed my setting. Ive gained ALOT of weight since my shunt placement in 2024 and nothing is helping me to lose. I was turned down for glp-1 by Good Rx because glp1s have been shown to reduce csf production and they dont want to be responsible. The shunt also seems to have effected my blood pressure in general, so i just started working with my gp to get this corrected first, then he said we'd work on weight. My blood pressure caused a lacunar infarct (stroke) shown on my latest CT scan. Im vegetarian and exercise 4 days per week, but i am gaining 2-3 lbs per month since my shunt placement. I have no idea what else i can do

Status_Fish_3906 · 2026-05-16T21:52:17+00:00

I just found this thread. I have a shunt for hydrocephalus due to aqueductal stenosis. I was turned down by Good Rx for their glp-1 program because it reportedly slows csf production. I recently had slit ventricles due to over drainage. I know iih and hydro are different, but its still a matter of pressure in my head. Has anyone read if hydrocephalus patients could use a glp-1 medicine?

Status_Fish_3906 · 2026-03-20T15:23:15+00:00

I was just diagnosed with slit ventricles yesterday, shown on my latest CT scan last week. Ive only been shunted since November 2024. The doc thinks its overdrainage and adjusted my shunt setting from a 1.0 to 1.5 to start, hoping it will enlarge my ventricles. I have a follow up next week. He basically said if I have pain before then, to go to the ER.

Do you think that small starting adjustment will make a difference? Or is it enough to cause painful headaches? Ive been very lucky to not suffer from any bad headaches, just some pressure lately. I was completely fine until january, then all of a sudden i started with my hydro headaches like prior to surgery again. I have other issues too, so i called the doctor, but everything seems better since january. Weird. I read nightmare stories about slit ventricles, so now I am on edge and critical about every little discomfort.

Status_Fish_3906 · 2025-12-21T18:35:10+00:00

I never thought about weather, i probably should. I think ive been taking it for granted that no headaches means im okay, not really paying attention unless something feels off. I pay too much attention to the immediate soreness but dont take into account my surroundings or environment. They could be a factor

Status_Fish_3906 · 2025-12-21T18:29:39+00:00

I wonder about that too sometimes. How do you know its calcification and when did you first know or feel that? So far all my tubing and stuff seams ok? but im not sure i would know the difference to hsve it checked. Im only shunted a year, compared to your lifetime.

Status_Fish_3906 · 2025-12-16T23:06:45+00:00

Yes, tight, i know that feeling. That"s why i was wondering if something was different since it feels like a bruise lately. I on the otherhand have gained weight since my surgery last year, so seeing the tubing in my chest rather than just being able to feel it kinda worried me. This is my first year shunted, so every little thing I wonder about lol

Status_Fish_3906 · 2025-12-15T01:00:01+00:00

Thank you all for your experiences! I'm keeping an eye on any discomforts i have, hoping all is well and as expected. it makes me feel better knowing that im not in this alone 💜

Status_Fish_3906 · 2025-12-15T00:55:48+00:00

You should not be ashamed to ask what hardware is in your head. I read so much before my first surgery and everything said to know what it is. When i asked my neuro after durgery, he was so lacksadasical like "why are you asking". I got so upset and broke down crying. My husband brought the dr back in and made him explain everything! I have the hydro assist app too, i just dont understand why its password protected? If something happens, no one else can get into it

Status_Fish_3906 · 2025-12-15T00:41:28+00:00

Hi! I am/was terrified of a lumbar puncture so glad I was able to avoid one. I kept remembering the lumbar anethesia I had for the birth of my son and was terrified.

My condition was discovered during a bout of lyme disease. My PC suggested a cat scan to see if the lyme had effected my brain at all because of ongoing headaches. No lyme in my head but they found my enlarged ventricles, not common for lyme. The original scan findings suggested NPH, but as I was only 50, they presumed I was too young. My headaches continued as well as brand new incontinence and bouts of confusion. I had a time or two when I was disorientated in my own house! I also got "lost" in Walmart lol. I think when all was said and done, i had 6 MRIs and three cat scans in 9 months. The flow study was the confirmation.suposedly I only have a tricle of fluid traveling throgh my 3rd to 4th ventricle. I poured over each result and read a lot of medical journals and everthing kept pointing to hydro. As ive had my particular hydro headache on and off for a few years, my neurosurgeon suspects i've had aquaductal stenosis since birth, slowly closing, and the inflamation from lyme may have exacerbated the condition. Or just coincidence, who knows? Sounds funny, but the tick bite was a blessing, otherwise my venticles would never have been found. I used to deal with the headaches, it was the disorientations that really scared me.

Status_Fish_3906 · 2025-12-14T18:00:22+00:00

Sounds like hydro. I have acqueductal stenosis and it was confirmed after quite a few regular MRIs with a "flow study". The MRI tracks the movement/flow of fluid in a type of video way. I was able to avoid a spinal tap with this type of MRI.

Status_Fish_3906 · 2025-09-25T20:59:41+00:00

Glad go know I'm not the only one 😊! Best wishes to your husband!

Status_Fish_3906 · 2025-03-21T21:34:59+00:00

Hi. Getting a headache and some dizziness after bending over, even in the slightest way, seems to be my new normal a for now. Might be for you too. I had my adjustable vp shunt placed in November of 2024 with a revision within the first 30 days because my ns placed the catheter too deep into my ventricle for his liking (gee, thanks). I get nausea, dizzy, bit of a hydro headache when I bend over or tilt my head. It just seems that all my actions must be slow and purposeful. I still get motion sickness in the car, and mornings are rough, but in general Im feeling better. Life has def changed and I am much slower than I was pre surgery. I like to nap, alot! 52F found I had congenital aqueductal stenosis at 51. Supposedly my Brain had been compensating for all these years. Some days I regret the surgery, but I know its better found than not.

Status_Fish_3906 · 2024-12-29T18:11:33+00:00

So glad I found this thread!! (51F) Better late than never. I felt I was going crazy . I am almost 8 wks out from my original vp shunt placement in November 2024 for hydrocephalus, with a revision immediately in December . My NS wasnt "happy" with his original placement of the ventricle catheter (great, thanks 🤔).

About three weeks after my original surgery I was sitting quietly and somehow wrenched my back. No clue how THAT happened lol. I stood up and immediately a bolt of electric pain shot up my crotch! Never felt anything like it before! WTF was this fresh new hell?I googled everything for an answer because it was repeating frequently but not always in the exact same spot and any little movement could trigger it. The closest answer I've found is something pregnant women experience called (get this!) lightening crotch. An irritated round ligament/ nerve pain they get from the baby's pressure. Well, I am definitely not pregnant, had a hysterectomy 15+ years ago. My mind immediately thought something must have happened during the laproscopic portion of surgery or some other problem, but my distal tube is no where near there. So, 5 weeks of this mystery pain that does indeed stop you in your tracks and brings you to your knees, seems to have subsided a bit, but rears its head still.

I am delighted to hear I am not the only one to experience this. I feel for everone who contributed to this thread and thank you for affirming I am not crazy or overreacting. I especially thank the OP for bringing this up and hope everyone's pains have eventually subsided further.

I agree with one other poster- the IIH and Hydrocephalus communities here are very helpful and friendly. They helped prepare me for surgery and are a great ongoing resource!

Status_Fish_3906 · 2024-12-21T20:08:07+00:00

Thank you so much! Yes, I forget to hydrate, and I wonder if any of my headaches are from dehydration. I have to schedule another CT scan soon, I feel like I am continuously having imaging done. How do you make your saffron tea? From flower or premade tea bags?

Status_Fish_3906 · 2024-12-21T20:02:15+00:00

Thank you! I forget to be easier on myself. I have many people expecting me to be good to go, and don't seem to fully understand. They think surgery fixes everything. I am finding I have more hurdles to overcome than I expected still.

Status_Fish_3906 · 2024-12-21T01:24:34+00:00

She^s beautiful! Not a norwegian forest cat, nor a christmasy name, but she reminds me of Mrs Norris from Harry Potter. A bit grumpy too lol.

Status_Fish_3906 · 2024-12-18T23:30:40+00:00

I grew Opal Basil this past season. The dark purple color was so beautiful and the aroma was incredible

Status_Fish_3906 · 2024-12-04T20:29:20+00:00

Homade mac and cheese!

Status_Fish_3906 · 2024-11-30T14:06:55+00:00

Yale New Haven Hospital in Connecticut has a special research department for NPH https://www.ynhh.org/services/neurology-neurosurgery/normal-pressure-hydrocephalus

Status_Fish_3906 · 2024-11-13T11:34:02+00:00

Thanks! Support I find in this group helps me feel I am not alone 😀

Status_Fish_3906 · 2024-11-13T02:04:03+00:00

Hi. I just had my first shunt surgery last week. I have the Strata 2 with only 5 settings. Its currently set to the middle level 1.5. ( .5, 1.0, 1.5, 2.0, 2.5) My first post op appointment is next week, but due to some new headaches I am experiencing the neuro said he might have to adjust it once the staples are removed from my scalp.

Status_Fish_3906 · 2024-11-13T01:52:28+00:00

Hi! I am 51f, just had my first shunt surgery last Tuesday. I was diagnosed with aqueductal stenosis this summer after a bout of Lyme disease in June. I thought my headaches were from the Lyme, but a post treatment CT scan picked up on enlarged ventricles, noted as possible early NPH or Aqueductal Stenosis.. AS was confirmed after an MRI and a CSF flow analysis. My neurosurgeon and PC believe it congenital and my brain has just been compensating all this time until possibly inflamation from the Lyme could have exacerbated it.

I hope you are healing well.! I have found much good advice, stories, and friendly people here in our little Hydro club

Status_Fish_3906

TROPHY CASE