2nd Follow-up with NS today

Met with NS today - They did the first post-op MRI

When I met with NS he said MRI looked good no problems- When I told him about how severe the headaches are that i am having: he said that I shouldn't be having them- He prescribed another round of steroids; pain meds etc

When I described the headaches that they feel like pressure within my skull- he began to think that it may be that pressure within head could be too high- the only way to get this is by doing a spinal tap.

The surgeon could not get the needle "deep enough" (The Spinal tap was very painful!)

He made me an appt. to have the radiation dept. next week my NS said they are better equipped and can knock me out too!

If the CSF pressure is high then we will talk about a shunt-

I also have an appt. with a Headache specialist a few days after my spinal tap in case the tap comes back normal

So all I can do now is wait-

they can do a CT scan, or MRI and see if your ventricles have to much fluid that would be so much easier and a whole lot LESS PAINFUL!

My understanding is they think there too much CSF fluid around the brain; causing high pressure in skull.

Kenny...

so sorry you are having this problem...In my thoughts and prayers.

Lisa...thanks for the info on the CT and MRI.....didn't know that.

Kenny, maybe you can ask NS for a CT or MRI..instead....unfortunately...the lumbar puncture is cheaper to do....the docs seem to hate ordering costly tests. But, I would ask..give him a call on the phone today...doesn't hurt to ask.

Peace,

Lori

The MRI cannot measure the csf fluid pressure. As I understand it, only a spinal tap can measure the CSF pressure.



Lisa W said:

they can do a CT scan, or MRI and see if your ventricles have to much fluid that would be so much easier and a whole lot LESS PAINFUL!

I hope you get some answers and results soon. It is no fun to be pain....

Hi Im 4 weeks post op now and I too have the same pressure headache as you.So far Ive had 6 lumbars! the last one was on 17 opening pressure,which is ok,previous ones were on 36,30 etc.They put mine down to the chemical meningitis but am still suffering.Seeind the NS soon so hopefully he can shed some light.I know what u mean about the pressure,its like a contraction!!Im getting mine when i stand up or turn my head,do you?

No an MRI or CT can not measure CSF pressure can only "see".. didnt mean to insinuate it can measure.

They Did my puncture and I was at #18- which is a normal but on the high end. My the pressure in my head feels much better. I went to headache specialist last week (I think my surgeon is about to hand me off to her for the rest of my treatment) She ordered some more test and freaked out on why Im am taking so much Percoset. So she h=gave me a handful of new RX's and I'm weaning myself off so much percoset.

Once I get into the routine of the new meds I hope to get better- I still have the numbness on 1/2 of my left hand (2 wks now) Surgeon say its "aseptic Meningitis) and will go away with Steroids (on already on my 2nd round of 'roids) But HA specialist has me set for some kind of electric nerve test just to be sure......

So how long post op before the pressure came down in your head? mines 6 weeks now and it still really bad.They say its the chemical meningitis? could this be right? dont mind if it is because I know it will get better,just couldnt stick this pressure for ever,making me so ill.

My decompression was Oct 24, Pressure wasn't so much an issue until a few weeks ago, it seem to be lessening. I don't if Chemical meningitis is the same as Aseptic Meningitis. But all my issues my surgeon is calling "Aseptic Meningitis" which I know is better than "septic meningitis" for sure!!! problem is the steroids aren't seeming to be the "Magic cure" that he keeps claiming!

Mine was the 8th Nov,think aseptic meningtitis is the same as chemical.i had another lumbar yesterday that confirmed I still have it!! after 6 weeks.Has given me a 4 day course of steroids but feel no different as of yet.Am back to see neuro surgeon next weds,they mentioned that you can get scarring at the back of the brain after this op,its rare but can happen.have had a n mri 4 weeks ago and all seemed ok but on about doing another.have u heard of this? my presure was 12.5 yesterday,totally normal! so why does my head feel like a pressure cooker that feels like it going to explode? any ideas kenny? how u feeling?

Denise,

Im feeling a bit better, trying to slowly reduce the percocet use and get adjusted to the meds that the HA specialist put me on. I still have the numbness/tingling in my left hand- but have a EMG scheduled for early Jan- Ive been on my 2nd round of steroids for almost 2 weeks with no improvement on hand issue???

My pressure seems better, but energy level is still in the tank!

Merry Christmas everyone!

Merry Christmas Pastor Kenny....

I am glad you are feeling a bit better....Let us know about the EMG when you have it..I too, have mine in Jan.

I was on steroids for my hand and arm due to a severe fall...did help me with the swelling ..but made me nuts emotionally....sometimes folks need a 3rd round.

Merry Christmas!!!!

Lori

Kenny,

I am praying for you! I hope that they find out what's going on quickly, and can help ease your pain!

Hoping you get relief soon!

God Bless,

Katrina

Kenny glad you are feeling some better and found some relief.

Denise if they are saying its not pressure related and you have no scarring could it be medication related,OR possible BP related? I do have BP issues and I know when my BP is up my head does pound a lot more..(I do have a shunt)- I dont know sometimes I like to think outside of the box