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Post surgery headaches
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Post surgery headaches

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?
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96 Comments Post a Comment
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The head pain yes............the surgery no..

I hope you feel better soon
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Hi Jenny...sorry to hear u r having these issues after surgery.

Are u going to PT...moving ur neck the way they did while in the hospital?

The only other issues it could be, depending on how bad u rate this HA is over production of CSF and ur body is not absorbing or a reaction to ur patch,

I am getting HA's now thatb r more pressure but I also have TC still pulling down and I have stinosis with a bulging disk creating yet another blockage to my CSF.

Try and relax and enjoy the holidays u will c the dr soon....if it gets too much cll him asap.

Merry Christmas
"selma"
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husband had this and has high pressure in  his head. Ended up getting a shunt two weeks ago. The high pressure was also causing a small csf leak too. Hope you get some help and HA go away
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999891_tn?1407279676
Hi Jenny, Sorry you are not feeling so good, if the pain gets any worse or any other symptoms present you may need to contact a Doctor, I hope it dose not spoil the Holiday Season for you :)


Ray
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thanks guys! my net is down thanks to ice storm! pain is not going away and hurts worse when bending down to get something. Feels like head rushes! i hope this is nothing permenant from surgery! how long after surgery was shunt needed?  I would think 4 weeks nothing would show up-thought 2 weeks or so?
im learning! thanks!
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Kenny had his surgery on Oct  8th. However he never felt like he was getting any better. Headaches became unbarebale. Kenny still gets head rushes, dr said expect them for 6 to 8 weeks
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thanks for info! so it may be pressure as each day gets worse! eyes hurt as well-like a lot of pressure on them!

is there anyone for me to get this to go away? can i get this to go away?
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620923_tn?1413427272
Hi Jenny...if the pressure continues to build I would contact ur dr...but do try to avoid foods that add to inflammation...we do have a list of anti inflammatory foods and with this pressure u want to do what u can  and not rely just on meds.

Healing from this surgery can go as long as a yr or two for benefits....and we r all different as to how long it may take to not feel some of the old pains as I was told it is normal to get them during the healing process.

At netime u think it is not letting up, call ur dr.

Good luck
"selma"
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785584_tn?1273252832
Thanks Selma!  I was thinking that if something were to go wrong that it'd show up two weeks or so after surgery.
But learned else wise!
I'm still having pressure headaches, but if I'm laying on couch I'm fine.  Its when I go to get up it hurts but fades after standing a bit.  Then if I stoop to get something it comes back like a rush.  

I'm hoping to wait till I see NS Jan 7th to talk to him.  

Thanks again!
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620923_tn?1413427272
Well my drs said it could get worse in the first 6 weeks, but, I am almost at 7 months post op and having more issues now than I did at 6 weeks...so u never know.

Yeah, I am getting them like that too.....I was told it is a combo of my TC and my stinosis with a bulging disk that is obstructing CSF flow.

Give urself time to heal, but do tell ur dr how u feel.

"selma"
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I'll most likely call Monday!  It's getting worse.  Really reminds of a head rush but with pain.  I stand and it's such a rush my vision goes blurry.
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Jen, call Sunday if it gets worse...and please keep me posted.

I pray u feel better soon : )

"selma"
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I hate paging him, he is a grump we you page him!  I know that may sound stupid but it's me! :)
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It's worse! Now when I stand it's such a rush I feel like I'm about to pass out!
I will call first thing in morning!
I never had pt - no one did anything with turning my neck!  I'll have to ask about that!
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620923_tn?1413427272
No PT?...wow...I didn't go either, my choice, but I had PT in the hospital and I continue to do the exercises that I was shown in the hospital.

U may have some scar tissue that is causing some of ur issue, but get the neck moving.....if I can upload the instruction sheet from the PT  I was given.Not sure if it will let me  do so as a pic......hmmmmm

I am so sorry u got worse.....relax and stay in bed today.

"selma"
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Well he called and said this is not normal so I will need a MRI.  We shall see!
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620923_tn?1413427272
...yeah, I didn't think it was not normal....keep me posted on the MRI.

And relax!

"selma"
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Well all! The office never called today about MRI.  I messed up on missing the time to call them in the afternoon.
I've now developed a large bump or mass not sure what to call it on my head....looks and feels like a small hill.  I'm going to guess I've got spinal fluid building up.
It's almost 4am and I'm in a lot of pain.  So come morning I plan to call, if I can't get through, I'm going to ER I think!
The lump freaks me out!
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Hi Jenny,

Wow, one thing after the other huh?.....I had a spot that was very sore......and it began to ooze after that it scabbed over....and felt soooooooo much better.I did put some antibiotic ointment  on it as b4 the oozing started.

But I know how u feel about it ....it freaked me out too!

"selma"
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Well the spot went down some from me sleeping, so that is good.  It's goes accross my whole neck, maybe it could muscle swollen???  I'm reaching straws here.
I called about my MRI and the receptionist just said..oh yeah I've got that, I'll order it now.  
Then had to call hospital to schedule it, Monday of course!

Just what I want, a deductible starting over!  ARRRGGH!

My family are worried as I come so near to blacking out when I stand that I may agree with them and just go to ER.  

It's hard when you are scared something has gone wrong and they are blowing you off!
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I hear u...did u ask if there was a possibility to get it b4 Monday?.....sometimes if u explain about the deductible they will squeeze u in.......

Oh well mayb it is a muscle......mine was right on the scar.......hmmm ........

"selma"
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Well my husband just called from work and said we are going to ER, because he is worried and said he'd feel better knowing.  
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Jenny, let me know what u find out...at least they should do a MRI now!!
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I hope nothing to serious is going on...
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Hi jenny! I'm sorry your having these problems but i'm with the hubby at least at the er they have to look at you and hopefully do something! I hope your feeling better soon and like selma said keep us posted!  -- Shannon
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Still in er! Just had MRI and then they did cat scan!
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Please keep us posted Jen!!
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Well after nine hours of sitting in er room, poke and prodded, a mri followed by a cat scan they think they figured it out!  
They said it appears to be a post surgical seroma.  They put me on different pain meds so i can now sit without pain but when I go to stand I get that massive headrush with pain.
I almost fell and the Dr. had to grab me.  
He said he was still concerned about that, but at this time I just need to keep eye on tempture and if the mass changes.  
It was bigger then I thought, it covers my whole incision.  

So if it really is a seroma, should be fine.  My only concern is why the head rushes and pain still from standing?  Hopefully I'll get a big surprise and start the new year off without that!  
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So glad it wasn't anything really bad! Just keep a watch on it like they said and rest! Also just a thought... since you cant see it you might wanna have hubby take pictures of the incision every day or other day so you can check the size and then you have documentation for the doc too. Hope your feelin better soon and hope this new year brings you pain free days!  -- Shannon
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Thanks! That is a good idea!!
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Hi Jen...sounds good that u have an answer.....may I ask, did u have a drain?.....it makes me wonder if what I had with all my oozing is a seroma too?


Praying this is taken care of 4 u and u can continue to recover : )

"selma"
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No drain.  I've been throwing up all day.  Dr called and said that he thinks there is a small leak and told me to stay resting.  If throwing up continues I'm to call and of course fever.  
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Oh Jenny I pray it stops soon....wow how long has this been going on now?

R u drinking caffeinated drinks? and lots of H20?.....I know I must sound like a broken record....lol.....but lying flat and doing those 2 things is all I know for a possible CSF leak.

I had a leak after giving birth to my DD and I know how awful that feels........

I am so sorry u r going thru this.

"selma"
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Well I had this around the first of December then I got better for 2 weeks or so ...not sure??  Then about about 10 days ago it started up.  With the issues of feeling the head rush with head pain upon standing.
The throwing up got worse yesterday and is constant today, it's occur on the hour.  So that time in between I feel pretty good.  
I've been drinking caffeine, which is maybe why I'm not sleeping, ha ha ha!  

I think all the fluids, caffeine and laying down is what go it to stop for a while but I didn't give it long enough.  

I keep telling to keep going through this as it will not be forever!
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Well Jenny, I had to lie flat for 5 days to get mine to resolve on it's own and the need for the blood patch was no longer needed .....I was glad bcuz that was in '84 b4 they tested blood for AIDS and b4 they used ur own blood for the patch.

I hope u can lie flat long enuff to allow it to seal and that it will : )

"selma"
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Hello!  Wanted to tell you all that if you think you have a leak, really listen to the advice of laying flat and drinking caffeine!  

Met with surgeon today and he said that I did have a small leak.  I told him I'm feeling great!  I stayed down and did the caffeine.  After almost two weeks of pain, it's over with!

So surgeon told me to keep my activities minimum for another month to allow it time.  So far it's looking good.  If by chance it decides to come back with all the symptoms I had, then he said he would go back in to find the leak.  Ick...no thanks!  

Thanks for the advice, really paid off.  
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Sorry you had to go through all that but so glad its better! Will continue to send well wishes your way! I pray this is the only "bump" you'll have on your road to recovery! --Shannon
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Marissa went to the doctor and she told the doctor that her head felt stuffed up like a cold. He said that was because her brain is still swollen. He said totally normal and as her brain heals it will go back to normal. That was good to hear!
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Jen I am sooooo glad to hear it paid off for u....I know it worked for me when I had a leak....and I know how awful that feels...it is a chiari HA times 10......not a good feeling at all.

Now listen and no bending or heavy lifting...so slow : )

"selma"
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I had surgery over a year ago and i'm what they call failure decompression surgery.  I have headaches on a daily basis with numbness.  There are time when i feel or look drunk.  I slur my words, fall over and just have no cordination at all.  I agree with others that it sounds like you have a leakage some where.  I would have them look again or get a second opinion.  
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Just curious, when you mention a leak, are we talking about the brain fluid leak that can happen to 2/400 patients that have the surgery?
Alex
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Not sure, he just said a very small leak which can happen but they heal on their own.  

If it's rare, then yeah it would be me.  Considering I have had two brain surgeries for two different things, that are supposed to be rare.
Last year I had a rare allergic reaction to a vaccine that almost took my life. Was told that was very rare....with a nice sorry.... So if this is rare....I'd have to say yeah!
Sorry...need to have some humor for myself with all of this! :)

He made it sound like it often happens and goes away on it's own.  
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I have never heard that it goes a way on its own.  That is scary to think that you have to deal with it.  When ever i have looked it up they have to fix it but i could be wronge.  
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He said it can heal itself and I've heard from others whom say the same thing.  But I too worry, did it really go away?  Every time I stand up, I get nervous, dreading that I'll get that headache back.  
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My surgery failed for me and i have had major headaches since my surgery and they do not know what to do with them.  I pray that it is true that they go away for you.  My problems are worse now than before surgery and i just wish there was something that comes my way and they do find something.  For me my headaches did not go away,

LJ
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Lovage, that is so sad, I can't barely function with these headaches I can't even imagine what it is like for you. I've been on/off pain meds since this started, but two weeks ago was given rx until surgery, this is the only way I can function and I know meds are only temporary, if my surgery doesn't work I know I will not be helped with pain meds, I can't imagine how people can get up or do anything with these headaches.
Praying you find relief
Alex
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Jen,
I know exactly what you mean about rare things happening to you, seems the story of my life.
My husband had a vasectomy after my third child was born, 14 months later along comes number 4, in this case a blessing, doctor said we were his first couple who got pregnant and he'd been practicing for over 30 years. My husband's body healed immediately even though cotorized and cut, doctor said, changes of being hit by lightening and hitting the lottery were higher lol. Two and a half years ago had a hysterectomy, great surgeon shouldn't bragged, was his first mistake in over thirty years of practicing also, he stiched my ureter blocking my kidney, what a nightmare, worst part was he didn't believe me, since waking up from surgery complained something wrong, he thought I was drama queen that couldn't handle a little pain.Well, that nightmare took about going under 3 to 4 times to fix problem.
So yeah petrified of leak, especially since I'm going to be alone with my two little ones, my husband travels M-Thur, won't have much support around.
Alex
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Hi Selma,
Maybe you would know, I'm going to call my insurance company today.
Since this is a major surgery, wondering if could get a visiting nurse or even home health aid to come to the house.
Alex
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Ouch you do have some bad luck!  I blame my husband for my bad luck, he he he!  We got married and went on honeymoon, hurricane!  Since then every year something bad had happened.  We yet to have a quiet year!  However I'm praying this is our year!  LOL!!!!

When are you having surgery Alex?
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My brother got marriee to his high school sweet heart and every year after ther anniverery she ended up in the hospital.  About 3 years after they got married she ended up with a heart problem and died.  It was so sad.  He felt like he was bad luck to her, but things just happen and you can not do anything about it.  I have had surgery every year for the past 4 years.  This year i'm planning on have no surgeries.  LOL we will see how long that last.  I do know that some insurance companies will cover a nurse to come and help out after surgery but you have to call and ask the right questions.  They will not just give out the information to you.  I'm doing what i can to try to get insurance again, things are hard to figure out when you either make too much money or you can not just get it.  It ***** that the goverment is so stingy.  Maybe the goverment will do something good this year!!  LOL  yeh that will happen.  
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Do any of you get dry skin on the surgery line. It's gross, a bunch of hard stuff.  I was it off when shampoo and rinse good, but when i wake in morning it's there again.  grrr!

loveage that is so said about your brother!!!

It's hard with insurance and such!  
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620923_tn?1413427272
Hi Jenny,

I think what u r referring to may be scabs that r still forming...I had that too .....I did not try to remove them as I did have oozing.But I think u just may still have enuff to form the scabs......I may be totally wrong...JMHO :)

"selma"
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I wondered if it was still scabs from healing, but wondered if that would still be going on still.  
Hm, funny stuff this healing process!  
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Well Jenny u know I had it up until around 6 months post op....not sure what the average time frame is.....I know I am on the odd side with the EDS slowing the healing....but it could very well be scabs.......??

I was also told to only use J and J baby shampoo and no other products as it can dry the skin and cause it to pull.....were u told to be careful and use this shampoo and avoid hairspray?

"selma"
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No, i was told the baby shampoo for first couple of weeks.  Then they said I could use my regular.  
Hmmm?
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well since u have this issue, mayb try the baby shampoo a bit longer?......
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Lovage, so sorry about your brother and his wife, how is he doing now?

As far as insurance, I called mine yesterday and I do have home health care coverage, full coverage thank God, but here's the funny part, they said my pcp needs to send them an authorization, I even asked not the surgeon? they said no, the pcp, so I called them yesterday and they say the surgeon has to authorize it, wish people would keep it straight, anyway, have my pre op tomorrow, so hopefully will remember to ask all the right questions, think I'm going to write it down now, I know me i will forget and remember as I'm already driving away lol.
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If the PCP will not do it and asked that the surgeon do it then maybe you shoud have the surgeon call the PCP and let them know that it is  good idea to have it and that they need to do it.  That might get them to do it instead of you saying it.  That is what i always have done when i do not get my way.  

My brother is not doing emotionally good now.  My dad is very sick and as of yesterday he got transfered to a convalesant home to get 24 hour care from the nurses.& doctors.  I figured that he will only last about a month if that.  It is the hardest thing that i have ever gone through in my life and i know that it will send me into a depression.  I do know that the suffering will be done but i'm being selfish and still want him around.  It is just hard to deal with.  We are trying to support each other but i believe that this will break our family apart becasue my dad was what was keeping us together. .  

I have to warn everyone about this one.  Last night i had to go to the hospital due to throwing up blood.  I have ulcers and a hernia at the opening of the stomach.  Well the doctor said that everything was irritated from all the medication and me being sick from the medication.  Itwas horrible that i could not leave the bathroom before leaving for the hospital.  Just make sure that if your on alot of medicatio like me that your doctor givrs you something to keep your stomach from getting bad like mine.  They had to put me on something stornger for my ulcers and i'm on bed rest now.  It did not help that my head hurt so bad and they kept lifting my head up and down to put in IV's and draw blood or check my stomach.  That really got to me, so before i left they had to give me something for my headache on top of it.  So sad that you have to have medication for something and then more for the side effects.  
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Loveage, hope your ok!

Well tonight I was laughing hard with kids and that stupid pain came back.  I'm going to be soooo mad if I did something and that patch is not healed!  So mad :(
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Advise Please,
I have my pre op, I think I asked all the right questions, anything I wanted to know I wrote down so I wouldn't forget.
My first question was what kind of patch he used, the name is dura something, which he explained is real material the hospital buys from donated dead people, he says he likes that because it's real strong and he's never seen a rejection, infection yes but he doesn't think it's because of the actual patch, he also told me that some people get freaked out about that and if they prefer he can make a bigger incision on the head and get the skin patch from there or from my thigh. Does anyone here that's had the surgery have advise going by their own experience?
Also, my God, the pre op is so involved as far as alot of information and details. I shouldn't have complained about their lack of information on the surgery lol, when I visualized the surgery I pictured them making an incision and going straight to the skull, didn't realized all my neck muscles attached from neck to skull would have to be separated, yuck yuck, I knew about the craniectomy from you guys, and the leminectomy, but they had never mentioned the leminectomy so figured wasn't having the leminectomy, wrong. When I say that I can visualize all these procedures in detail non stop in my mind I am not kidding, so so freaked out, wish I could just not think about it but that is all that goes through my mind for most of the day, have 10 days to go.
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Hello!  So your getting the cadvier dura patch then, I have heard good things about that.  I have a bovine patch (comes from cow heart) and am having no rejections.  I'm 2 months post op.

I have had a craniectomy for something different 3 years ago and honestly it was nothing compared to this.  I think because of the neck muscles being affected.  It is hard to move and talk to them about getting rehab for this.  Something I didn't get and still think I need.  I can not get my head to go back/up, however ya word it.  I've lost a lot of range of motion.  

I did not have leminectomy but he did talk to me about it.  My chiari was not touching the C1 or C2 of spine so they left that alone.  

You'll do fine!  So don't get to freaked out, as you need to keep your stress down for your immune system!  So try to relax, easier said then done, I KNOW!  

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Relaxing is esier said than done.  I do not know what that is right now.  I guess for the update is that my dad will not make it through the night.  He has gotten very bad since the week started.  He has gone from getting oxeygen to not geing able to breath on his own.  He is now in a Hospice home just wating for the final minutes of his life.  It is so sad to go through and is hard deal with too.  I do not want to but i'm going to because that is my dad.  Talk about having a headache all the time.  
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So sorry Lovage, it is so sad to lose one's dad, been there, but at least didn't go through the agonizing part of watching it.
Alex
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My thoughts and prayers are with you and your family at this sad time.

Ray
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Oh I'm so sorry Lovage!!  
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I just wanted to update everyone that has prayed for up and given us our thoughts.  My dad passed away this morning at 3:40 am.  We are glad it is over but sad that we have lost someone so special and close to our hearts.  He was a great man and was always there for his children not matter what.  I want to thank everyone that prayed for our family and we are glad it is over and we can relaxe that he is in a better place.  
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So sorry to hear this. Prayers are with you and your family

Ray

Togetherness

Death is nothing at all.
I have only slipped away to the next room.
I am I, and you are you.
Whatever we were to each other, that we still are.
Call me by my old familiar name, speak to me in the easy way you used to.
Put no difference in your tone, wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me.
Pray for me.
Let my name be the household name it always was.
Let it be spoken without the shadow of a ghost in it.
Life means all that it ever meant.
It is the same as it ever was.
What is death but a negligible accident.
Why should I be out of your mind because I am out of your sight?
All is well, nothing is lost.
One brief moment and all will be as it was before.
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HI

I am little worried, I am 3 weeks out of surgery and have pretty much had the headaches you describe before and after. What really strikes me as the same is it involves pain in my face, temples, scalp and under my eyes. My eyes also start feeling like they are burning. Lately, I have noticed that I am getting more of that headrush feeling and almost wanting to pass out. I've also developed a section of swollen gland all at the base of my neck. Did you have those too?
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I do not know about the swollen glands, but i do feel like my face swells up a lot. There are times that i think that my face is bigger than my body and i can not feel it.  I have passed out because of my headaches and they just tell me to calm down and relax and that i'm doing to much.  So i stoped working and started to stay home.  You would think that my house was clean due to me staying home but it is not so do not worry about that. I do things how i feel like doing them.  Some time the headaches feel like you have a sinus infection or headache and they take over your whole head.  It is horrible.   I do have problems with seeing things.  My eye sight is blurry and can not see as good.  There are times were the sentence is in the wonge place.  

LJ
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Thank you for that.  It was really nice to read.  This has been really hard for our family becasue he was the rock of our family.  He was our life and always tried to do things as much as we could with him.  

LJ
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So sorry for your loss LJ! You are in my prayers! (did you see the other thread of people praying for you?) Shannon
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Avatar_n_tn
so sorry for your loss!

cmoeller- my husband had those issues after surgery and had a csf leak, and also high pressure in his head and eneded up getting a shunt put in to relieve the pressure. Hope you get some relief, but I would let your dr know. He also had swollen glands
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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.  
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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!
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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
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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.  
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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!
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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
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bumping up for rosemarie
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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
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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
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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
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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
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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
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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
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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
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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"
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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
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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
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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
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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"
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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
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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
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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"
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Was this ever resolved.... Just had surgery 2 weeks ago and feel EXACTLY like you.
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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.
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