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??

Are they doing/have they done the scan tonight?

Think of if this way, you won’t gave weeks to worry. It will all be done this time tomorrow.

It's true I need to start looking at the positives.

To have the symptoms of this Condition relived will be amazing!

It will take time for the flow of the shunt to be determined at what is the best rate for me but it will be wonderful to see properly again

I should the good results of scan scans show that while the optic nerve is swollen causing the lack of vision they know now that the nerve is still "alive" and viable so my vision should return.

I am so lucky for that

Sending a hug. I had a couple, of scary surgeries last year and know how the waiting the night before is. See of you can imagine yourself somewhere nice and relaxing, like a beach in the carribean, on the top of a mountain, looking at the view. Then feel all your senses there. Take deep breaths and zen out (for want of a better description). The only thing you can impact for tomorrow is to go to surgery in a relaxed and positive frame of mind, so that is your job for tonight.

Oh what a shock for you. All the very best for tomorrow!

You will be fine. It will be over this time tomorrow. This time next week you will feel so much better and your quality of life will be so much improved going forward. Good luck!

Mama - that info is amazing thank you so much and I hope your daughter is doing better

I did not even ask what type of shunt, I have so many questions now the dr has gone! What he was here I could only gape at him in shock!! 😂

I am making little memo notes about questions I have to ask tomorrow or later if I see him during the CT

Thank you all So much! Feels like I have people with me!

Just had my last drink now fasting

Handhold from me too. Any chance they could write you up for something to help you sleep?

Hope you get some rest and that the shunt resolves this horrible situation for you.

Please dont be too scared about your time in theatre. I worked in theatres for years, and can promise you that you'll be really well looked after by a trained team of people caring just for you the entire time.

All the best and lots of

best of luck for the op

sending a hug xx

Good luck, xx

Hand hold. What a shock, hopefully as it’s so soon the process will be swift and carry you through, and you’ll be on the recovery side. If you can, sleep, or have some music or radio in your earphones if not.

From now on others will take care of you.

One from me too and it’s NEVER too late to ring family.

Just as something to make you feel better, my Dsis had this operation at birth and had to have it again in her teens, and it has always been fine and recovery has always been smooth.

Good luck

Hugs.
You're right, it will be wonderful when you can see properly again.
Hope you get to sleep soon so the time before surgery passes quickly, and best of luck for tomorrow

The news that your sight Venne saved is amazing.

My nephew had a brain tumour (thankfully benign) and it was found when it was pushing on his optic nerve.

It had brnngrofibg for years si once removed he had to adjust to normal vision - including seeing new colors.

I hope that after your op your symptoms will go and your sight will perfect.

Oh gosh op. Will be a relief to have your vision back but can totally imagine how crap you feel right now. Hope your nurses are nice.

Definitely write down all your questions!

I've done pages and pages of reading online, hours of scanning forums for experiences due to DD being unable to communicate how she feels. Exhaustion afterwards was mentioned quite a lot, I imagine it's the pressure changes and recovery. DD is most definitely exhausted quite a lot but still manages full days awake.

I also read the pain of the shunt settling can be quite bad. DD doesn't show pain in the normal sense so has been on regular paracetamol since leaving hospital.

Obviously you may not have the same recovery feelings as I've read about but you're right in thinking things will take a while to right themselves and your surgeon may want to adjust pressure thresholds etc. They'll bring the kit round to show you- that part was impressive.

I do hope everything goes smoothly. DD had a lot of morphine in theatre so night number one wasn't the easiest but it was only one bad night, hopefully yours will be even less troublesome than that.

I've been anesthetised three times and by the second I quite enjoyed it (odd I know), theatre staff are always so lovely, you're going to be absolutely fine. I asked DDs surgeon how many VPs he'd done- 4000. It's their bread and butter. It's very easy for me to say but don't spend the night worrying, neurosurgeons are in a different league to us mere mortals. You're in good hands.

💐

Handhold lovey

Another late night hand hold from me
No advice but thinking of you x

I hope it all goes really well for you tomorrow, keep us updated when you can. Sending you a very big hug 💐💐

Thinking of you. You'll be grand.

Thank you all again I have taken the advice and just called my husband I am so relieved I have and have had a little cry feels good to get it out.

I have asked for a sleeping tablet but they cannot do anything while waiting for this scan but the nurses here have been fantastic so I am sure they will sort me out after the CT

Mama- that's all good to hear I am expecting pain and have read that the stomach can feel worse than the head

I so feel for you and your daughter not been able to communicate her pain must have been so stressful on you all.

The one thing my husband has just said is take the rest he knows I will just want to get home ASAP And then will keep going instead of resting he said he telling the docs tomorrow to keep me all week! Sure it nothing to do with him getting all the bed and been In charge of the TV for once 😂

I’m not supervised you are nervous. I certainly would be. Hope everything goes as well as possible.

🌸🌼🌺🌸🌼🌺🌸🌼🌺

Surprised not supervised 😬