Post surgery headaches

[jorlex137]

Hi Guys!

It's been 4 weeks since surgery for the malformation.  Did pretty good and was seeing improvements.  
However this past week I've been having pressure headaches.  A pulsing sort of headaches that radiates to my forehead and even face.  I get a shooting odd pain when I turn my neck.  Also lower head to past my neck burns at times.  

I've tried to eliminate other things, caffeine headache..no  I also took sudafed thinking maybe a sinus headache...nope!  

So now what?  I see surgeon again on Jan 7th, but I worry he may just tell me, surgery has been done so you should be fine.  

Anyone else have this sort of headache after surgery?

[selmaS]

Hi and welcome to the Chiari forum.

I am sorry to hear u r having issues post op.....it can be from a number of different things...

I know u addressed ur post to jorlex, but she has not posted in 2 yrs...if u want to contact her,send a PM(private message) as this will generate an e-mail so she knows someone is trying to make contact.

There have been several members that had post op headaches and there have been several diff answers to y....

Post more info on what all was done during surgery and what symptoms u have b4 and what is going on now, I am sure there r current members that can offer u some insight.

[Amma71]

Was this ever resolved.... Just had surgery 2 weeks ago and feel EXACTLY like you.

[selmaS]

Hi...u may want to try what we recommend for those with acid reflux...elevate the head of ur bed to eliminate the flat position....it may be helpful for ur pressure HA's.

I am like Carolyn as I have the constant ringing and buzzing in my ears...I also notice if I am sitting for a while and get up too fast I get the fullness feeling in my ears and head...weird sensation.

Good luck with the sleep position

"selma"

[*Stormy*]

Tricia.

That is the way it is with my headaches and has been ever since the surgery. As soon as I lie down I start to feel the pressure and pounding in my head...it is really bad when I first wake up after falling asleep. It takes a minute or two after I wake up and then it's like everything really starts flowing and pounding and my ears really ring loudly. Like you said, mine eases when I sit or stand up though it doesn't go away completely.

I read something once that the characteristics of a low pressure headache (csf leak) are pounding when standing up and relieved by lying down. A high pressure headache is pounding when you lie down and relieves when standing up. So I guess it's all in what pressure you are facing!! I'm taking it that with us we are still dealing with some built up pressure issues. For me my ears still constantly ring and feel full like I have to clear them...I get throbbing in my temples and face too.

I have an MRI in 3 months to see where things are at regarding if there is any reblockage so until then I wait..

Carolyn

[tlongbook]

It's so helpful to have read over everyone's entries. I had my surgery on 3/2/09 and got out of the hospital 48 hours later. For about a 10 days I felt amazing, then I hit a wall and have had daily headaches and pressure in my head. It's 'good' to hear that others experience that pressure and 'fullness' in their sinuses AND that it will go away.
I found that if I bend to far forward and my head bends down, I pay for a few days with nasty 'brain pounding' headaches.
So thankful for the the caffeine advice....that does seem to help.
I noticed a few people's headaches resolve with lying down. Mine seem to be the opposite...I wake up at night with the pounding and have to sit up to get them to go away...has anyone else experienced this?
Take care friends, Tricia

[selmaS]

LJ...I was beginning to wonder where u were.....and so glad to see u r back!!

Did u have ne luck getting to another dr?

"selma"

[*Stormy*]

Loveage...

I just wanted to say that I am sorry to hear of your father's passing...sometimes you do have to become a hermit crab for awhile b4 you can tackle life again.

I agree about catching it early..I do really think it makes a difference. Unfortunately a lot of NS have the wait and see attitude and won't do anything until the symptoms get to being debilitating...which is very frustrating!!

Take care of yourself :)
Carolyn

[Lovage]

I'm glad to hear that there are so many people that have had promising surgeries.  It is nice to know that there is help out ther for people for others that are going to have the surgery soon.  I have come to the conclusion that i have had a lot of problems before i had surgery that were my surgery did not help like they wanted it to.  If  they can catch it in time before all the other things start to happen i believe that you have a better chance of having a good out come.  

I know that i have not been on lately due to my dad's passing and all, but will be trying to get on more often and getting life back in my house more and more.  I started to become a hermit crab and just did not want to do anything or talk to anyone.  Well i'm coming out of my shell a little bit at a time when I feel like it can cope with it.  

Thank you for everyones support and time with their prayers, thoughts and time to talk with me.  It shows what this site is all about.  Sticking together as a Chiari family!!!!

Thanks,
LJ

[*Stormy*]

Hi Alex

For the most days I am feeling pretty good too...I think I am 10 wks post op?? I'm losing track now!

I'm pretty sure I was about where you are when I felt like I had finally crawled out of my hole and felt somewhat human again!! Glad to hear that you are feeling better :)

I did and do some stupid things too...usually there is a day or two of consequences but I haven't had anything too severe. It is so much harder when you start to feel better b/c you naturally want to do more!

Good luck on your first day back to work!
Carolyn

[selmaS]

Hi Alex...good to hear from u...even if u r driving urself nutz...lol....we all tend to overdo at times and out chiari body lets us know about it.

What type of job do u have?

I hope u do not lift at work.....

Try to relax and know that lifting will always have some limits for u and  it will take time for u to feel better......

Good luck with ur next post op visit!
"selma"

[Alex265]

How is everybody feeling?
I am now six and half weeks post op and feeling pretty good finally. I have a second post op on March 29th and should return to work the following day. I still get headaches but not as often or as bad as before, hoping that these also go away eventually. The one real bad thing I did was lift a really heavy bag today, wasn't thinking, could real kick myself for it, just hope I didn't do any damage, I can't stop thinking of everything that could go wrong from heavy lifting that I'm giving myself panic attacks. Let's just hope nothing comes of it, keeping picturing new headaches, new leak, busted stitches etc, like I said driving myself nuts lol.
Take care, Alex

[*Stormy*]

Alex- Don't feel too bad I think that all our kids have been there!! I had my surgery on Dec. 29th so you can imagine my 3 boy's Christmas holiday was a little boring and they had to spend New Years without me. But I figure New years day was bringing a whole new life for me! My surgery was supposed to be Dec. 11th and got cancelled though so it could have been worse.

Your stories after surgery are exactly what I experienced as well (no swelling or leaks though) but I had the headaches (still do sometimes) and the dizziness and headrushes and it did finally get better. I think some of it is due to just trying to get up and do things, you have to just do a little each day and then it starts to get better.

Rosemarie- I can't believe you are working either, especially with kids and all the noise that comes with it!! I know you said you didn't have a choice and I completely get that but still you are a real trooper!! It's funny about the head cold, I got a real doozy about 1 week after I got home, I really thought I was going to die!! My youngest had somewhat of one but my older kids never got it and now I am wondering if it is a product of the surgery? (Or just cuz immunity is down). Promptly, after that all 3 of my kids had the flu at different times and so I spent 3 weeks trying to recover and clean up the mess and I decided to add toilet training into that too!! At one point I was running from the one vomiting to the other peeing on the bathroom floor! Sounds funny now anyway lol....I only had a stomache and nothing else from that one...I guess I did have a little luck anyway..

I hope you both keep on the path to feeling better!
Carolyn

[pdxmomof3boys]

Please be good to yourself! I still get horrible pain and am so tired that my kids run wild all morning since I can't even keep my eyes open, let alone stand up. The coffee helps a lot -- I don't even drink water anymore, just coffee and I truly believe that has prevented a leak. If I had a choice about work, I would stay home, but my kids are so little that it's more work! The day I had the stomach virus I laid flat as much as I could and the day after. My husband had to work, so I still had to push through, plus sick kids...just take it easy and the small leak should go away. Hard times, but we will get through. My swelling and pain is mostly on the right. I have a bad head cold now that is complicating things. Lots of pain in the incision and pimply things from my hair growing back in after being shaved that is so uncomfortable! NO ENERGY! Coughing hurts my neck muscles, but at least no chiari spasm headaches like before!

Sorry your girls are going to get a stinky vacation, but I'm sure they'd rather have a healthy mommy! Take good care and rest up!

Rosemarie

[Alex265]

Wow sounds like we're having the same problem, I can't imagine how you can work I can't stay up for long periods of time the hammer people as I call the pounding headaches come banging on my head, I spend most of my time on the couch. I did call the NS yesterday and they agree with me that I must have a small leak going on based on my symptoms, swelling on back of head is not bad, but there is some on the left side, plus the pounding only happens when I'm up, within minutes of laying down it goes away. They're having me lay down this weekend get up only when necessary and I am to call them on Monday to see if it healed itself, otherwise have to go back in and probably get a drain, this mega stinks. My husband is finally going back to work on Monday and won't be back until Thursday and the kids are on school vacation.
Feel bad for my girls, what a stinky vacation they're going to get.
Alex

[pdxmomof3boys]

I still have lots of ear pain -- my post-op ear pain is now a full blow cold! Lots of sinus pressure and a sore throat. If I were still pre-op, I'd be in bed from the head pain like last time, so thank God for that! Antibiotics should help a ton.

I am finding the leg numbness thing too! But just my left leg, really. It was so bad, especially when we all had stomach flu last week! I spent lots of time at the toilet! Hopefully it will resolve itself.  Try leaning back and putting your feet up on a small stool (my kids have a step stool in our BR) -- helped me a bit :)

I know what you mean about falling -- 2 weeks post-op (just like you) I went to the fridge to get a drink of water and got dizzy and lightheaded and thought I was going to pass out...I thought to myself, I should slide to the floor before I just fall and hurt myself. As I started to slide down, I hit my head on the ledge of the shelf that was behind me and then plopped down. The ledge got me RIGHT on my incision and I thought I'd faint! I cursed so much my hubby was laughing. Just be careful.

I'm back at work and SO TIRED! I can hardly talk or walk or MOVE. Took pain meds and muscle relaxers last night and it helped LAST NIGHT but can't take those when I'm at work and tylenol isn't cutting it! We'll see...almost the end of the week!

Take it easy and heal,
Rosemarie

[Alex265]

Thank God I come here alot and listen to the advise here. Today makes 2 weeks 1 day post surgery and boy it was the most painful day ever.
Not sure if I have a small leak, I have the head rush and mega pounding whenever I stand up or bend down, it is the most horrible pain. So remembering what Jortex went through I took my meds, continued with the caffeine and just went to bed with an ice pack, once I lay down I'm fine, still have pain but the kind I can handle. I ended up falling asleep for six hours straight, that's a first for me. I also have an ear infection going on, I had my stitches out on Thursday and had them look at my ear because it hurts, they said no infection yet but that I did have alot of fluid was told to start a decongestant, that helps a little, last night the other ear started hurting so now I'm 99% sure it's turned into an infection, the doctor called in an antibiotic. Tuesday I see my PCP, having another problem, not related to surgery I am told, but only when I sit on the toilet my whole left leg goes numb, somehow something about that position must be pinching something, it's weird, it's numb from hip to toes, I actually fell when getting off the toilet right into my bathtub, I can laugh now cause i didn't get hurt, but I really could have, my ribs hit the side of the tub making the fall slow down, thank god i didn't hit my head.
Enough about me, how is everybody doing?
Take care,
Ales

[pdxmomof3boys]

Thanks Shannon :)

I remembered this thread, and that's why I called this morning, but my NS says that since I had a stomach virus with my kids it's tough to tell. I don't have a fever and the swelling (because of what he saw at my last visit) is probably my lymph nodes still reacting from surgery. The ones in my throat and the back of my head are all swollen. No more vomiting (isolated to the virus I had past two days I think). Also, he says depending on how much I am doing, I will either feel really good or really bad. I have been doing a lot this past week because the kids and hubby and myself have been sick, so it could just be not resting enough. If it doesn't get better or anything changes I am to call and they will see me right away. They don't want to put me through another CT without real cause.

I also realize that since I started feeling sick to my stomach I stopped drinking coffee. Haven't had any for the past 5 days -- I was drinking TONS of it before, thinking I'd be proactive and stave off a leak. I am making a pot now and will force it down :) Usually I can't make it through the day without it, but that nausea was awful.

I trust the NS and his PAs because they have already called me back twice today to check on me and see if I've worsened. If they aren't worried, then I won't worry and maybe it will get better if I don't stress :)

Thanks again Shannon -- how are YOU feeling by the way?

Rosemarie

[shanmomof3]

bumping up for rosemarie

[Alex265]

Glad you're feeling better cmoeller, how long since your surgery? My NS told me to really take it easy, to not even carry a laundry basket until he gives me the all clear. I do have little ones and to top it off my husband travels for work Monday-Thursday(which I love lol except on situations like this). Found out my insurance pays full coverage for Home Health Care so the hospital registration guy that called me today give me a number to call on Monday so I can have it set up before I go in for surgery. Make sure you continue to take it easy, head rushes are not supposed to happen so keep track of them.
Lovage, I really hope your situation gets better, I can't imagine living with that kind of pain for so long, for me it's been 4 months and I can't take it anymore praying this surgery works for me. I hope that you at least have some kind of pain management.
Take care,
Alex

[*Stormy*]

Don't worry about scaring me, I can do that all by myself!!

Luckily, my situation has improved somewhat in the last day or so. The glands seem to be going down and I am not getting headrushes as bad as I was. I still get the bad headaches by the end of the day but I did mention it to my NS and he didn't seem too worried for this point in my recovery. Thanks for the advice though, if any of it returns I will go to the ER. I think it may be a case of doing too much so I have started to take it a little easier.

It is so hard b/c you never know what to worry about and what to just wait out!!

Good luck Lovage, I really hope they figure it out for you!

[Lovage]

I agree with the leakage.  I heard the same thing.  They told me that i did not have one, but i think different.  I was told that even a small one would creat problems too.  I would go in and get checked for a leakage or a blockage.  If they tell you there is nothing that they can do i would find a specialist to help you.  I'm currently waiting to see the specialist on the 8th of Feb.  I will be so relieved to see them.  My right hand is so numb that i burned myself not knowing it.  I was told that is not normal and that can be a sign of a blockage or leakage of some type or it could be pressure that is still there and they did not make enough room for me.  Like we said, go and get check ASAP it could do you some good.  

[Alex265]

Hi there,
I don't want to scare you but you need to go the emergency room right away. I had my pre op last week and went in with a list of questions/concerns about the surgery and post op complications, one of my questions were how would I know if I have a cfs leak and your symptoms are exactly what he told me, he said if that happens to go to the emergency room at where I had the surgery and not my local one or even my gp cause they wouldn't know what to do and then he would be called. They have to drain that leak, waiting to long can be dangerous, until then lay down as much as possible and have lots of caffeine, that's what helped one of our members here just recently.
Good luck..................Alex

[*Stormy*]

Thanks everyone! I guess that I should probably call my GP, I don't have a very good relationship with her b/c she didn't believe me for a long time about my symptoms (said it was stress).
The high pressure feeling really comes on when I lie down to have a nap, when I wake up it takes over and feels like me head is going to explode. It seems that the more I move around it gets better it gets until the evening where the whole sinus feeling headache comes back.
Lovage- you described my headaches 100%, I haven't passed out but I get headrushes when I stand up and feel close to it. I did have the headaches before surgery so I guess that's why I'm wondering if I should worry about it.
Majerus- My glands seems to go up and down but when I look in mirrior I can see it sticking out of my neck. Did it do that with your husband?
I will probably call today and see what they think. Thanks!

[Lovage]

They were talking about putting in a shunt but if you have no insurance they like to pretent that it does not happen.  It ***** but that is the way it works and that is why i'm switching doctors now.  We will see what happens with this new doctors.  I'm kinda scared about then doing a shunt, i have no luck with surgeries for the past few years.  I have heard mixed stories about a shunt.  My husband is kinda mixed up too and does not know what advice to give me but of course he is not the one that has to do it and that is what he says.