Hi Caroline,
I had my surgery over a year ago, I am must better and free drug, as you are.. I took the advice of my NS, took it easily up to around 4 months, then slowly increase my activities, but completely change my life style, now i HAVE PRACTICALLY MY LIFE BACK, SOMETIME I GOT TINGGLING NECK AND BACK PAIN, BUT NOTHING TO COMPARE PRIOR DECOMPRESSION, so I will advice to others take it without any reservation get surgery done..then it wont damage their nerve ..chiari if that is too be left ..dont get any better (that is my experience)
Thank you for message of hope!
Won't be same for everyone, but we all need a bit of hope in our lives
Good summary of your current status.
Just listen to your body..!!!! and dont stress yourself up...I promise you..if you listen to the advice of the NS..take a deep breath..keep moving..b positive YOU WILL BE FINE...
Hihi.
Quick thought, as my decompression surgery is Monday, and it's now Friday afternoon...
Lots of people have mentioned getting new pillows to aid comfort post op. What sort did people get? I have looked and there are memory foam, pillows with holes, v pillows, u shaped pillows. What worked for you?
Then i can see if any consensus and buy before I go in to hospital.
Any other post op advice warmly welcomed...
In grateful thanks..
Good afternoon 😊 My son got me pillows from Sainsburys memory foam shell pillow. did the job nicely especially when first out. One thing I forgot to mention was you will probably have a drain in your head, mine was taken out next day before going to normal ward. It's now nearly 5 weeks since having mine & I must say feel so much better than I did a week & half ago....so you might feel it's never ending but it does get better post op....& now just paracetamol when needed.
All the best for Monday, if I can help anyway, then just pop me a line. Take care x
Dear caroline63191
You have Ben very generous with your responses for which I am extremely grateful.
Thanks for quick answer. If good enough for you, it's good enough for me
Bring on the op..
Hi, no worries anything to help! We're all different & deal with things different, hope it helps a little. Please if you want, let me know how it all goes! Will be thinking of you Monday. Keep positive & think of the longer outcome. Where you having the op?
take care x
I appreciate the idea. The neurosurgeon showed us in the MRI that I had a large area for flow and that everything should be fine. I went to dentist today took X-ray of my teeth. He said they were fine. No cause for pain
Good evening
just want to say all the best for tomorrow, all will be fine.
Best Wishes xx
Thank ls for remembering.
Mostly prepped and ready (certainly mentally), and leave home in 5 hours.
The new beard is showing to many silver flecks for my liking, but c'est La vie.
Will speak on other side once I I have joined the cult of the zipperheads.
Thanks for the support
Good news then..huuuhhh thanks GOD for that
Hi caroline63191
Brief msg following my surgery on Monday. Op went well apparently. NS said he had to lob off some of tonsils to make space. Recovery was hard despite morphine and tramadol and others stuff
Vomited 3 times which really hurt. Headaches so powerful can't sleep.
Today better as shower, walk, sleep during day.
Will catch up when at home
All best
Hi Stable2309
recovery is awfull especially at first, my headaches more or less wouldn't budge with all that med either, what made it slightly better some of the time was I had oxygen. Ooo getting tonsils hacked as well. When I finally received discharge letter (3 weeks later) they said on there I had a lamectomy well think it's spelt that way. It will get better even though it seems it will never! Look after yourself, keep taking meds & plenty of bed rest, hopefully sleep.
take care & if you want let me know how things are going x
Hi all
I had a foreman magnum decompression 7 weeks ago and I'm still struggling with high pressure csf, my last LP was Wednesday with an opening pressure of 32. I did have chemical meningitis after the op but was sent home after spending 10 days in the hdu unfortunately it hadn't gone, after being home for a week I was rushed back in with excruciating headaches where my NS put me back on dexamethasone for 3 weeks, I've been weined off them now but I keep getting this headache which is just above my left eyebrow, the best way to describe it is a searing pain, I also get a pain in the top of head from time to time and my eyes feel as though they are strained, awww and this ringing in my ears is driving me crazy!!! So my question to you guys is this normal or am I enroute for a shunt? I'm scheduled to see my NS next Tuesday for another LP and CT scan but I'm driving myself crazy thinking about having another operation to have a shunt. If I do have the shunt, what is the recovery like? Will it have limitations to my daily life? I'm 29 and do a lot of scuba diving, surfing etc and finally will i be left with another big scar on my head? Sorry for the long post I just been driving myself crazy with the what if's.
Thanks in advance everyone and it's really refreshing to hear that most of you had successful outcomes from your surgery.
Hi Hayleybell,
Hhhmm I thought you had decompression awhile ago, anyway, I have exactly what you have - chemical meningitis, my LP was 29..I haad another 3 LPs after surgery, but Dr Flint would not discharged me-- I was staying at the hospital for 6 weeks it was painfu for the first 5 weeks the six weeks was better then I was allowed to go home.
Dont worry, it will soon be OK, but just have another MRI/Scan - I am sure you will be OK, you might to do another LP..just to drain the water (pressure) from the spine..they normally wait ..if you are ok then they will not do shunt..please listen to your health care professionals but tell the honestly how do you feel, I hope every thing would be OK soon.
Dear Hayeybell,
It has been a while that we communicated with each other, how are you doing now after the op. are back to work?, youh ave got your life back.
Hi Caroline
Thought it was high time I followed up on our previous updates to check how your doing so we can compare notes.
Yesterday marked 10 week anniversary since my op. Reality is progress has been slow, and I have to say it doesn't feel like winning yet. There are less headaches, and most of them are a reaction to something else.
I still feel excessively tired in the evening.
I do feel more stable now, but progress is on par with a sloth.
How are you fairing these days?
Best Wishes
Hello, sorry to hear progress has been very slow in your recovery process. Have you had an update with neurosurgeon? Even going at a sloths pace, hopefully its on the up, though must be very frustrating.
Ive now been discharged from St Georges so that's good, still have numbness on the left side of head, he said they had to move a main nerve over in surgery & I might get feeling back but could take a while. I can live with that as all headaches so far gone. Cramps sometimes down back of neck but that's if I hold head down too long & it will go!
I hope hope things start to feel better sooner than later. Still take things easy when you can.
all the best for the future.
Best Wishes 🍷
Hello everyone, I had decompression surgery on 5/10/17 and my surgery lasted 5 1/2 hours!!! I was in intensive care for 24 hours and was in a lot of pain! They rushed me for an emergency ct scan as I was in so much pain and with all of the pain relief I was on including morphing and co cordomol they still couldn’t control my pain! Luckily the ct scan came back all ok but still couldn’t control the pain☹️After 5 days of being in constant pain, struggling to breath, lack of sleep, not eating or drinking, we finally saw the pain nurse! I can’t remember anything but she had put me on some sort of steroids and took my pain relief down as she thought I was on too much! After 2 days I picked myself up and started being able to control the pain and then after 7 days I could finally eat and drink and even go to the toilet which was impossible for me for 7 days! I am home now but I did end up back in hospital with bad chest pains and rushes of pain to my head! One tip! do not do too much! You want to get better not get worse! Good luck to yous all and I hope yous have a speedy recovery X
I am glad you are on your recovery days, wait till at least 2 - 3 prior doing a normal day to day chores, you are not recovery yet, if you still feel the pain without pain killer, so..just watch your step girl.