Can I have a hand hold? Emergency surgery tomorrow

[WorryingWombat]

Evening all

I have been stuck in Hospital for days I have Ideopathic intercranial hypertension (IIH) A condition which mimics a bran tumour.

I have had this for years suffering with headaches dizzyness and needing regular lumber punctures to relieve the CFS pressure

But now it has affected my vision the build up of CFS is now affecting my optic nerve so the risk is losing my sight

I was admitted on thus and have had many tests many scans to find I have reached the end and they have to operate and place a VP shunt

I knew this was coming and I thought they would book the surgery for a few weeks but no the Neuro surgeon has just come now and I have signed a consent for emergency surgery tomorrow!!!!!!!!!

I am so scared and know I won't sleep now

It's to late to ring family so I wondered if anyone was awake for a hand hold??

Oh I’ll keep you in my thoughts!

I have IIH too, I’ve had it for 10 years, luckily I’ve been able to manage with lumbar punctures and medication. Though I’ve been told one more flare up means shunt time and I’m crapping it.

I hope it goes well, you should hopefully feel some relief instantly when you wake up.

Are you in the IIH support groups on Facebook? We are very friendly!

I’ll keeo everything crossed, try and not to worry too much (I know it’s hard not to) and go with the flow.
X

Ah I didn’t rtft. I’m glad it went well!

Really glad to hear you’re doing so well with your recovery....I’m sure the scan will be fine too.
Onwards and upwards now

Great to hear you're doing ok. You sound really positive which I'm sure will speed up your recovery. Just make sure you take it easy and get the rest your body needs.

That's good to hear things are going ok. Hope you manage to escape today.

Great news that you may be well enough to go home today. I'm sure you can invent a new hair style to cover your bald patch, you could be a trend setter ! Hope the recovery goes well, you sound pretty calm now your unexpected ordeal is over.

WorryingWombat, glad to read it went well and good luck with going home soon!

Oh that would be brilliant if you can get home today!

Pleased you are on the mend.
In a couple of weeks your hair will have grown a bit and will make the patch a lot less obvious I'm sure.

Well I am still waiting for a CT scan! Hope they get it done today and I can leave but the later it's getting the more unlikely it seems

I have been fine today kept on top of pain relief I do not tolerate strong pain killers well so Coping with paracetamol and Iberprophen

My body kid of gave up at about 3pm I was put on the roof garden with the kids and i just went so tired like falling asleep in the chair! Think it was my bodies way of saying enough! I have had a little power nap and feel good again

Sounds like you've been the perfect shunt patient! So glad to hear you may be allowed home soon and you can cover your patch with a pony!

Hope you rest up and are allowed home tomorrow.

Hope you have a restful night Wombat.

Checking in. Hope you have s restful night wherever you are Wombat.

Well it's almost been a week since surgery and mostly I am healing well!

I have washed my hair! 😂 It was amazing!!

And my scars both in my head and my abdomen are healing well

Unfortunately I am suffering from low pressure headaches

My Cfs pressure has been so high (last messured at 36 should be around 8 to 15?) that my body is not tolerating the new low pressure the shunt is giving which means whenever I sit up or stand up straight after a few mins I develop a crushing headache like nothing I have ever felt before

The pain is so bad it reaches a point where you think you will pass out or throw up if you don't lay down

I have been slowly raising myself with pillows throughout the day to try and combat this and while I am making progress I know that this could carry on for another week to 10 days

But I keep smiling ☺

Thank you to all that held my hand in the wee hours and got me through this event!

Oh gosh poor you. Hope it continues to improve. Glad you have washed your hair!

Oh I'm sorry to hear that you are still so poorly. I do hope you recover very soon. You are so brave!

poor wombat x sending best wishes

Wombat hand hold and cuddle. You're doing amazingly well!

Sounds like a tough side effect.
Glad you are managing to cling to the positive- clean hair is a wonderful thing!!

Just came to check on you Wombat!
DD's pressures were 30+ too, it had been unchecked for years. Someone missed it. Unfortunately her damage is irreversible. I don't think she's taking to lower pressures too well either, she's quiet and sleepy often. I imagine it takes a while to settle.

I'm sorry to hear you have headaches. It's fascinating to me that you've had the same surgery done, like I'm getting an insight into how it actually feels. I don't know anyone else with a shunt.

Hope things settle down soon. Glad to see an update! Hurrah for clean hair!

Mama - Hi honestly ask any questions you like, I like to feel I am helping in some way to think that a little one had to go through this is just awful PM if needed

I understand the quiet and stillness it's feels at the moment like when I move my head my brain moves seperate makes me feel dizzy and sicky I like to keep still! Plus. I can feel the shunt so that is an odd feeling and I also feel like there is an annoying hair or something around the back of my ear then I remember it's the drain under the skin I am feeling

I went out today! Whoop!! to asda it was like a sensory overload it was such a strange experience everything seemed to busy and too loud which I appreciate as my youngest has ASD so it was strange to realise that this is proberly how he experiences things

After the shop I was so very very very tired it was shocking!! Like. I had done 100 miles!!

Little bits at a time is how I am taking things

Next mission is uniform shopping tomorrow and slimming world group on Thursday!