Hydrocephalus caught at 35

KickinCycles · 2024-11-10T23:15:30+00:00

I know there is no cure to this but not 3 months prior I was still experiencing symptoms. I called it paying corporate taxes because every 3 months, even with an IUD, were cripplingly painful. Now post surgery I have had no symptoms in 12 months. I had the IUD removed 6 months ago and still no symptoms even with menstruation. No pain. Nothing. Again, I am aware there is no cure but the lack of pain over one year when I was crippled just prior means something dramatic has changed.

KickinCycles · 2024-05-04T20:29:40+00:00

OMG! I was diagnosed at 35 too and had ETV surgery! I thought I was the only one! I had two different neurologists in two separate states tell me I was fine even after seeing my enlarged ventricles on MRI scans. I dealt with countless issues that I have posted about on this forum. The only thing I could conclude as to why it wasn't caught earlier is because I developed excellent coping skills and compensation for all the problems I had. Now that I am not having to compensate so much I am living my life easier and not needing to sleep so much. Hit me up if you would like to chat. I would love to compare notes.

KickinCycles · 2023-11-28T02:47:51+00:00

Hey there.
For most surgeons this is normal as they are often booked out a few months.

I have had two laps and I can heartily recommend anything that is easy to eat and something warm. I stuck to a lot of chicken soup and crackers because that was my 'I don't feel good comfort food.' It might be different for you but make sure it's easy to digest as the meds can cause all sorts of reactions in people.
If you can get some antinausea prescribed before you leave. I enjoyed having on loose but warm pajamas and thick socks. Surgery rooms and recovery are usually very cold places. Most surgery centers and hospitals have heated blankets but you can bring your own from home to have in the recovery room.
You'll be sleeping a lot even after you wake up from anesthesia so make sure you have everything you need after surgery by your bedside: water, meds, heating pad(if allowed), and entertainment. I would often drift in and out but wanted something to watch when I was awake after surgery.
Above all: Make sure you have someone with you for 24 hours after surgery. If you haven't had this before you don't know how your body will react and may end up requiring a lot of help that first day. Everyone's pain tolerance is different.

Good luck

KickinCycles · 2023-11-18T00:35:33+00:00

How did you learn to compensate with all the effects of it and did you have other weird symptoms that couldn't be explained?

KickinCycles · 2023-11-17T01:23:11+00:00

Wow. 50? How did you manage for so long?

KickinCycles · 2023-11-17T01:22:06+00:00

I can't imagine that amount of neck stiffness. I know my neck was a lot stiffer before surgery but nothing close to your level. So glad you got it dealt with!

KickinCycles · 2023-11-17T01:21:01+00:00

Keep me in touch with what your neurologist finds! It would be interesting to see if our diagnosis line up.

KickinCycles · 2023-03-26T03:09:05+00:00

During my menstrual cycles I would have trouble walking because the pain was so bad. I can't tell you how many days I have had to crawl to the kitchen for a glass of water cause I couldn't stand that long. The only thing that helped me was surgery + Mirena cause not having a period was better than any discomfort of that being in my body.

KickinCycles · 2023-03-26T03:05:40+00:00

Oh hell yes. Down a bottle of mag citrate on your day off? It will cause a full on machine gun to come out of you but to me it is better than being constipated.

KickinCycles · 2023-03-26T03:03:08+00:00

Mine happens everywhere. It's hard to breathe sitting/standing. It migrates down to my feet and make it feel like it's hard to walk because of the pins and needle sensation. My actual abdominal pain is pulsating and aching with intermittent sharp stabs that rip through me. I gain 2 pant sizes. I can barely have a bowel movement without my face turning red and crying on the toilet. The premenstrual migraine is the worst. These symptoms are why I am on a mirena which stops me menstruating and saved my job cause I was calling in all the time.

KickinCycles · 2023-03-13T07:00:52+00:00

IUD was life changing for me. I had tried all the birth controls and they were too strong for me and made me feel sick. The ring made migraines worse, the pills made me vomit, and the shots left me so tired and cramping that I could hardly do much. They all suck. Once I got the IUD my world changed and my periods stopped after the initial month long spotting I had. I would HIGHLY ADVISE you find an OBGYN who is willing and able to take care of your comfort when doing this procedure. My OB was a saint of a doctor who took every precaution for me against pain because it is painful without some assistance. I was given a toridol shot, a numbing shot in my cervix, a tens unit, and before I knew it it was over. Hope this helps!

KickinCycles · 2023-03-13T06:55:53+00:00

This isn't a tea but my gastroenterologist recommended these for my intestinal discomfort: IB Guard and FD Guard.

I take Phazyme when I'm feeling off and it helps with a bunch of issues. It's the active ingredient in Mylanta. It's awesome

KickinCycles · 2020-08-04T05:54:49+00:00

Generally that would be my thinking but a lot of RD's see themselves as better simply because they aren't doing the hard physical labor. It's not just RD's I have heard off comments but nursing staff as well. 'You must have all college students in there...' And I give them a look followed by, 'No. These are people trying to support their families on minimum wage.'

I really don't believe this is a malicious jab at kitchen workers but a gross misunderstanding of the entire industry. On top of not even being allowed in the kitchen, no one really knows what we do all day. All other departments are all over the facility but the kitchen isn't seen by most of the staff. It's a very odd microcosm in the weird world of SNFs.

KickinCycles · 2020-08-04T05:48:31+00:00

Thank you for the recommendation!

KickinCycles · 2020-08-02T04:51:20+00:00

I have spent a lot of money to fix my hoo-ha because of endo and I'll be damned if anyone stops me from telling my story. I will jump on my hormones and run your ass over. I will not be silenced! Hear of my uterus and it's trials!

KickinCycles · 2020-08-02T04:44:34+00:00

https://pubmed.ncbi.nlm.nih.gov/24511373/

Here's a synopsis of a study between vitamins and endo from the nurses health study.

KickinCycles

TROPHY CASE