Decompression Surgery 2 Weeks Ago

Hi there.  I had my surgery a little over 2 years ago and having similar issues with intense pain from light, noise, and even just sitting in a dark quiet room.  It's really hard to deal with this stuff when people can't understand, but I know for me finding this forum is helpful.  I am scheduling time with a new neurologist next week (I've been through a parade of them after my neurosurgeon, who says I'm cured so my symptoms are irrelevant, I guess) and hoping to get some relief then too.  Definitely get in touch with a neurologist or your surgeon if they're still in the picture. I'm also thinking getting follow up MRIs is smart...even if not requested by doctors.

Hi Shanks , sorry to hear you have problems after the operation . Hopefully your doctor can clear this infection up they see these things often as much as it frightens us , I quess it's a mixture of relief and the fear of what we are going through at the timethat's not helping you cope with the pain (I can still feel the fear of that night in my hospital bed ) don't be afraid of telling your doctor if the pain killers are not working try as hard as possible. to think the worst is over , I've faced it , I've done it now the rest will get better .people who haven't got it can sometimes not understand it we look ok so they can only help as much as they can.let them read the literature on it that can sometimes help , hope things start getting better soon .best wishes for a quick recovery , Rae xx

Hi Shanks,

I am sorry to hear about your concern, best thing to do is to go backk to your neurosurgeon, you should be under his treatment anyway up to 6 weeks?, is there any chance to write to them express your concern, or do it to your gp?. 

But saying that, I am on my 6th weeks of decompression, my headache and passing out was eliminated the day after decompression but I still feel terrible itchi and pain at the back of my head where they cut the skull opened.  I am still take my time easily, as my neurosurgeon told me the 2 months is the crucial time, so take it easy, plenty liquid to drinks, gentle exercises (walking) do not lift anything heavy , even hoovering, until 7 month post period, we the chiarian should really be looking after ourself, as other people who were going back for another surgery were the one who cdone it too early, they would not wait to do normal things as they were dying to have their quality life back, hence they have to suffer again...pity you should really listen to your health care professionals. I am not sure if CM is cureable? but decompression definately help to stop the headache, it take time, just be patient, I am one of the lucky one, my operation is successful, however I take my time slowly , I will not rush to find a job until another 6 months (I have to resign from my job due to CM 2 years ago)

Be positive, that you are on the recovery periodI  each day you will feel better, check with your doctor. GOOD LUCK

You should call your doctor and get to the hospital!!! You could be leaking cerebral spinal fluid!! 

A massive thank you to everyone who replied, another persons insight really helps. I was admitted to hospital a few days after I posted the original post because I woke up vomiting and kept passing out, I have CSF and blood stuck at the back of my head behind the scar. My family have been wonderful and I'm beginning to feel better. Placing books under the legs of the head of my bed to raise it up really helped because since I'm not lying flat the CSF and blood can't pool in my head. I'm still in pain every day and finally understand I actually need to take it easy since every time I try to do too much I suffer that night. Thanks again everyone x

Hello Shanks

I had my decompression surgery on the 5th July, I think you are slightly ahead of me.

I wasn't made aware of the pain, shakes & confusion which would follow ( I'm normally really good with pain) This is another level!! after the 3rd day I felt great, on the 10th day I was in agony, they rescanned me and found there was no pooling but, I am delirious with pain. When does it let up???

And when do you start to worry??

Hope you are feeling better now, good luck Shaks c