MVD complication/question

General General TN & GPN (Old Site)
1

I am 20 days post-op and my TN pain is almost completely gone except a few random zaps here and there and a little random pain. (yay) But, my incision site still feels like someone stabs it with a knife sometimes and I am getting these headaches that feel like the top of my head is going to burst. It almost reminds me of the worst hangover headache ever. (I haven't drank in years, but from what I remember so that might not even be accurate.)

So here is the thing. It gets better when I lay down for a while and gets worse as I am up and about. It got so bad I ended up in the ER over the weekend and the CT showed no CSF leak. I am not running a fever so they just gave me more steroids told me to drink as much caffeine as possible and sent me home. I talked to the nurse at my surgeon's office today and she said its really strange and she has never heard of anyone having the headaches without the leak. She said continue drinking lots of caffeine and taking the steroids and she moved my post op appt to this Thursday instead of next Thursday.

I am kinda freaking out. I am not usually someone who complains about my pain. I kinda got used to being in pain over the last several years... but this HURTS. I feel like no one is taking me seriously because there is no leak and I don't have a fever. I am used to people not believing I am in pain... it comes with the disease but my head was just cut open and something isn't right...

Has anyone else had these headaches? Am I over reacting? I am on a lot of steroids (and caffeine right now) which could be making me over react... I just don't know what to think or do right now and no one will tell me anything other then take the steroids and drink caffeine which on day 3 of that, I'll tell you its not helping much and surely it can't be good for me...

Thank you in advance for any advice...

Michelle

2

If it goes another day or so, i would demand an MRI

3

I will send on your post to a neurosurgeon friend, and see what he says...

Ping me at ■■■■■■■■■■■■■■■■■■■ if you haven't heard within a couple of days.

Regards,Red

4

Thank you!

5

I received the following input from my friend:

Two likely possibilities:

Positional [headache] is usually related the relative CSF volumes, meaning it may be that as a result of postop brain swelling, the normal fluid movement between the head and spinal sac is temporarily disrupted; alternatively, there is a small egress of CSF not into the wound(which is the most common assumption) but into the boney cavities.

Two; Post op aseptic (non-bacterial) menigitis ,which occurs when the felt and postop blood mix ,and a chemical meningitis ensues. Steroids can help. But more often at this juncture,a spinal tap to relieve the pressure is the way to go,as it seems the medical therapy isn't able to carry the day.

================

Either way, Michelle, I'd like you to contact your neurosurgeon's office first thing tomorrow morning. This may be something that is easily dealt with by a simple spinal tap. But in any event it bears prompt examination and evaluation by a medical professional.

Be advised that I am not a medical doctor. You need to consult with one.

Regards, Red

6

Thank you Red! I know you are not a doctor and that may not be the answer but finally there is a possible answer. I don't know if that even makes sense lol but it makes me feel better. I will call my surgeon's office again today.

Michelle

7

Are the steroids prednisone or similar? They really do a number on your body.........

No clue why you'd want to drink caffeine with steroids.....when I was on 60mg prednisone I could only sleep 2 hours/night and was wired.

For me the prednisone caused dozens of other symptoms, sore joints, headache, black rings around eyes, weird dots on skin, etc, basically feel like crap.

8

OMG !!! I too am three weeks post op MVD surgery. I was in bed for three days straight with the worst headache ever!

I went to the ER but they didn't do any tests. I feel like if I go again or call the Dr again that they are going to dismiss me. My headache is not positional in nature though. I was leaking from the incision but the DR was not worried and it has stopped.

Today is my first day out of bed since Saturday

9

Hi Neeni
How are you doing today?
Keep Heart
Bellalarke

10

Hi Bella
I’m hanging in there thank you for thinking of me
I have bad pain around the incision and still have the bells palsey so I’m a little down

11

Hi Michelle,

It sounds totally like a positional headache, which I've had many of, due to many CSF leaks. Ask yourself this - has your nose been running, sort of a slow incessant drip, drip, drip? Are you having any symptoms in your ear, like a bubbling noise, or, also, a little extra fluid? Ask your doctor to image you at all of the thin, permeable points in your skull and to make sure to check them for breaks - I ended up having a leak in my ear after many repaired leaks under my incision point - he didn't believe me at first, thankfully he decided to send me to imaging to confirm his thinking. He ended up calling me, saying that he had to eat his words, that I really did have a leak there.

Also, if they gave you any spinal taps recently, you could be leaking from there.

I hope that they give you some answers - don't leave until you get one - the symptoms are telling you something and it is up to the NS to find it. Be your own best ally, and take someone with you so that they can pressure him/her as well. My husband was very good at that.

They are making you drink caffeine because it is a diuretic - if they don't find anything after all of this, ask your NS about Diamox, which works better than caffeine.

Best of luck, stay calm and centered, think like a warrior when it comes to getting what you need.

Lily

PS - I just read Red's post - I had aseptic meningitis after my MVD as well, for which I was loaded with steroids - however, when I had it, I was not clearly cognizant - my husband noticed that I was acting strangely, and forced me to go to the ER as I insisted that there was nothing wrong. It all was foggy after that, until they got it under control and I was able to get my wits about me again. So you might check in with someone you know well, to see if you are "off" in any way.

If it is excess pressure, which, AGAIN, I also had, the spinal tap may work, and if not that, a spinal stent, which I also had to deal with, and that meant a week in the hospital to drain my excess pressure, on my back the entire time.

Please check in after you get an answer to all of this - I am PMing you with my personal email if you have more questions. Good luck.

12

I saw my ns today. He said that I still have chemical meningitis. My ct showed no leak and no air bubbles so it is just meningitis. He said I have been on steroids for over 3 weeks now and he doesn’t think they will speed the healing process along anymore. He gave me Fioricet which has caffeine in it and said to just wait it out, watch for fever, and call him next week if the headaches get worse or don’t get better. He also said if the Fioricet didn’t help to call him and he will give me something stronger

13

Hi, I havent been on here for awhile, but i remember those pains after i had my MVD, They do go away after a while, but boy are they painfull....

I got told it was just part of the healing from the MVD.....

but also that if it keeps happening it could be that your trying to do too much and should rest more....

sorry i couldnt be more help.

Sending gentle hugs

Nita xxx

14

i went in to the er a couple days after surgery and the ct scan showed nothing...i was told by the dr that my headaches were not caused or related to surgery...he of course was wrong, i had a csf leak. after that leak was fixed i got better right away. good luck. lol the er dr told me it might be from stopping coffee! wow they just want you out of there i guess.