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973882 tn?1258681304

Still having migraines after Chiari surgery

Hello Selma and all the rest of the Chiari family, I am sorry for not giving more any up dates sooner than this but between work and dr's appointments there has been very lil time to do anything. Ok now on with my post-op progress according to the NS everything is perfect the surgery went perfectly and there is nothing wrong surgically. But I am still having major pain in my neck and severe headaches and migraines. I saw a headache dr last tuesday and he put me on 3 medicines that i have been on before but never at the same time so I am hoping this combo will help but so far it hasn't i have had a migraine since sat night. I see a pain dr on monday this new pain dr is suppose to be the best in the states he set up the mayo clinic pain center so i am crossing my fingers that I get some relief any info or thought would be greatly appreciated.

thanks,
Marla
21 Responses
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3110588 tn?1341709215
I am amlost 6 years post-op and still experience HA's, neck, and shoulder pain. If I get stressed my neck muscles tighten to the point where I can't hardly swollow anything. I work a strenous job also without a choice of other employment. Pain medications and muscle relaxers help but I can not go to work that way. I had an MRI done once a year for 5 years and my Chiari surgery looks great. So I found the only thing that has helped me is Acupuncture. I no longer take any medications for pain, just my seizure medication. I swear by acupuncture. Helps for 1-2 weeks and completely worth going to every couple of weeks. Try it before you ignore it. I promise it helps.
Helpful - 0
1179332 tn?1297478990
I totally understand and I know that it is not something to take lightly....but it is something you may want to think about and start making small moves towards it. I think you are right to wait to hear what the pain mgmt ppl say...maybe they can give you some tips to ease the pain. I really hope so...let us know what they say..

Carolyn
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
I hear u...I am out of work too...so I do understand....sorry, I wish u had a choice here.....

Helpful - 0
973882 tn?1258681304
my place really doesnt care care to much if they can cut another person they're happy
Helpful - 0
973882 tn?1258681304
i wish I really could change jobs but there arent any to change to at my work and there are new jobs making the money i do at my job. the jobs just are not out there. i'll wait and see what the pain dr says on monday.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Exactly...I also feel it is  ur job...ur brain is getting jostled around...how is it to heal...so u may have swelling and or pressure building as a result.

I get HA's riding in DH's work van as it bounces u all around....I would imagine a fork lift would ride as hard too....

But it is also not uncommon to hear something else develop this far out....so u really need to listen to ur body.

"selma"
Helpful - 0
1179332 tn?1297478990
Hello

I am wondering if you had a problem with floaters before the surgery? I have vision issues and floaters but some of mine are more like lines and they will stay there for a long time, I am wondering if that's what you are having.

I hate to say this but it really sounds like your job may be the issue you in all this. I could not imagine lifting like you do and am only a few months behind you (surgery Dec 29/09). For most days the head pain and pressure are controlled but if I lift a lot or spend a lot of time bending up and down, then the pain and pressure comes on full force and I get this pounding pain in my hea (sometimes almost passing out). I asked my NS about it and he said everything on my MRI is fine and there is good CSF flow now. So why it happens, I don't know but I do know what triggers the pressure feeling. It is a really hard thing to accept, but you may want to think about changing jobs to something that isn't going to trigger these symptoms. I was told it could take up to 2 years to see the final results and we are not even a year yet...

I hope you find some relief!
Carolyn
Helpful - 0
973882 tn?1258681304
no the haven't they all look at me like i'm nuts
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
I have heard of people dealing with pressure HA's  this far post op.....have they done a LP on u?
Helpful - 0
973882 tn?1258681304
hi there,

i work in a warehouse driving a forklift in and out of trailers all day long and forklifts have never heard of the word " SHOCKS" so there is no shock absorbution at all and if a pallet has fallen over you have to clean it up and our work hours are never set in stone the min amount of hours we work is 40 the max can be 70 any where from 5 to 7 days a week i seriously think i am paying for going back to full work duties work would not let me come back unless it was full duties and the dr would not keep me off any longer so i was damned i did and damned if i didn't
Helpful - 0
Avatar universal
wow......lifting after 8 weeks. your a champion. i could barely move after 8 weeks. i am six months post op and still cant lift heavy stuff. (20+ lbs) without nearly blacking out. i always have floaters too. sometimes they are worse depending on my pain level for that day. my vision is definately affected if i overdo it. i find if i go from the sitting to standing or laying to standing positions too quickly that makes me really dizzy and takes me a few seconds to  get myself set before i try to move.
hope you get some answers and your meds give you a little relief. depending on your surgery date, i would think you are having these problems because you went back to work way too fast and way too soon without and restriction, but i dont know any of your "details" so im just assuming. :)
Helpful - 0
973882 tn?1258681304
oct 1st 09
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Yeah, I think it is possible......

when was ur surgery?
Helpful - 0
973882 tn?1258681304
what do you mean by pressure HA? do you mean i might be having pressure building up again in my brain?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi Marla...no tree branch, but I do get blurry vision and still have floaters.....I used to have more issues with my peripheral vision , but post op I have not had those issues return.

I will venture to say u r having pressure HA's and that is affecting ur vision.


I hope u feel better soon

"selma"
Helpful - 0
973882 tn?1258681304
hey selma or anyone who views this post with these headaches i have been having this week i have also notice some serious vision problems very very blurry vision , sometimes it will look a tree branch is in my field of vision but it wont leave anything like that happen to you or anyone?
Helpful - 0
973882 tn?1258681304
well i see a pain dr on monday he is suppose to be the best in the country he set up the mayo clinic pain center so we will see i know this is a Chiari headache i'm having now since i have had it for 5 days I will talk to you more I am going to lay down again talk to you soon selma





Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Oh my...I can only think  u went back to work too soon...lifting boxes...geeze, I know I still can not lift with out pain and I am over a yr post op.

I understand the need to work, but mayb u should look for a diff type of work that is less manual .....

I am not on meds for pain...but I am also not working.....I do from time to time need to take something...but, I feel the extent of ur issues r related to the activities u r doing.
JMHO

I pray this PM specialist can offer u some help : )

"selma"

Helpful - 0
973882 tn?1258681304
I WENT BACK TO WORK 8 WEEKS AFTER SURGERY FORKLIFT LOADING AND UNLOADING TRUCKS LIFTING BOXES WHEN NESSARY. I WORK 40 PLUS HOURS A WEEK I TRY TO RELAX BUT IT'S NOT ALWAYS POSSIBLE AND ALL THE NS SAYS IS EVERYTHING WENT PERFECTLY AND SENT ME TO A NL AND HE SENT ME TO A HEADACHE SPECIALIST WHO PUT ME TOPAMAX, ENDOMITHINCE, AND MAXALT ( I JUST STARTED IT THIS WEEK) HE ALSO SAID THAT I WILL ALWAYS HAVE THE CHIARI HEADACHES AND MIGRAINES THAT ALMOST EVERY HEADACHE I HAVE IS A MIGRAINE AND I SEE A PAIN SPECIALIST ON MONDAY SO I'LL TELL YOU WHAT HE SAYS THEN I DO ALL THE SOAKING AND THE ICE PACKS HEATING PADS AND THINGS LIKES THAT I ALSO GET TRIGGER POINT SHOTS IN MY BACK AND NECK OH YEAH THE HEADACHES DR DID SAY IT IS ALL CHIARI RELATED
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
....oh...and it is possible that u have migraines in addition to chiari, but for now I think we should look at it like i t is chiari related....at least until we see if ur meds can touch the HA.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
HI Marla....so sorry u r not doing as well as anticipated.

May I ask how soon after ur surgery did u go back to work and what activity is required to do ur job?

How many hours a week do u work?

Do u take time to relax?...do u feel stressed?.....have u been checked for other related issues...granted ur post op visit went well, but did the NS say y he thought u may still be having HAs like this?

Try a good soak in a warm tub and a warm heating pad on ur shoulders and neck area..that always helps me loosen up tight muscles which add to the HA's.

I wish I could say more, but with out knowing or refreshing my memory...I really can't say much more.

But I am so glad to hear from u and I hope we can help u find a way to feel better and soon : )

"selma
Helpful - 0
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