pain when i look up.....anyone else???

Question

hey all - 

ive posted on here before and all comments and notes have been wonderful! i figured this was the best group to approach with this experience since, im sure, someone gets what im feeling...... so im almost 4  months post op (2/11/10) and recently have been experiencing pain in the back center of my head whenever i look up....like at the sky or if im sitting, while having a conversation with someone standing in front of me. curious if its "typical" though i know that really, there is no such thing with this surgery.  im on a bunch of meds and vitamins still and remain with headaches on the right side of my head, tremors, floaters, balance and gait issues......and the list goes on. 
my herniation was 10mm and was MISSED on several MRI's for the past three + years.  . . . . im told by neuro i was mm's from death. . . shew. . . . dodged that bullet, huh?! Not to take any severity from my circumstances, it has been traumatic to say the least.  i was informed that i will have to retire from my career after 12+years of service and im 33 years old! can we say, devastating!?!? so - anyone have this "pain"? its not anything that i noticed earlier, but may be that other things were bothering me more so i didnt feel this one so much.

thoughts????
jilian

selmaS · Answer

HI and welcome to the Chiari forum.

Not sure there r NS's in Baltimore area...u may want to travel to get to one.

I am adding a link to our list of chiari drs, use this as a starting point to research drs.

Check ur insurance to see what u can and can not do in this regard....but in talking to staff members u get a good idea of how frequent they treat chiari, which I feel is very important.

I want to let u know u r not alone in it taking yrs to get a dx....and we r glad to have u as part of our chiari family here, sorry for the reason u had to seek us out tho.

"selma"

just_keep_swimming · Answer

Hello, i am new here... I have been having symptoms for a few years now and just finally diagnosed last week.Its all so much to take in at once but I am thankful to FINALLY know what it is! Is anyone else in the Baltimore area or seen any neuros here? Thanks and best wishes to u all!!

*Stormy* · Answer

Thanks so much for sharing that...it really helps to hear from ppl that are further down the post-surgery than I am (6 months).

I too, know what you mean about being on "auto pilot", I am like that all day and then all of a sudden my body tells me to STOP because you are in pain and I won't let you ignore it any longer!!

What really struck me is how you mention how your have to rest to be able to fix dinner...that is the same battle I deal with often...Either go lie down for a bit and set the kids in front of the TV...or there will be no energy left to make them dinner. Sometimes there is some guilt...but I know that it's something I can't change.

Carolyn

selmaS · Answer

Well u can always send a PM !!
Let me know u r around : )

No reason to be shy tho...we r all friends here : )

"selma"

Lovemygirls2 · Answer

Hey friend!!  I am glad to be back!  New laptop does wonders for solving your internet problems!!!  :)  

I am here more often than you realize!!  Read on here everyday- just don't post that often!  :)  I am even shy on a forum.....go figure!  haha

selmaS · Answer

Hi Stranger....it was so good to hear from u....sorry u didn't have the results u would have preferred, but who of us would have wished to never have to deal with this....all of us would for sure.

I agree, we do compensate on auto pilot  after surgery just as we had prior to even getting a dx.

Listing our Blessings is one way to stay positive : )

Glad again to get an update on u and I hope u stop by more often : )

"selma"

Lovemygirls2 · Answer

I had the surgery Oct 08 and I have to say- I still have trouble looking up.  I also limit bending down.  I am so much better than I was before surgery.  I had difficulty conversing with my family and friends.  Often I made little sense when I talked.  I had extreme head pain (I called them brain pains).  Those things are gone but I would be lying if I said I never feel the affects of Chiari.  I thought at 1 and a 1/2 years everything would be awesome.  However- I think many of the things I just cope with.  I think I have learned how to manage alot of the symptoms sometimes not even realizing I am doing it.  But- I am very aware of daily pain.  I too am young- 34 and I have two young daughters (11 and 8).  I feel all of the same things you guys do. Sadness that mom has to rest in order to fix supper.  But- its just part of it.  We do the best we can and keep on keeping on!  Some days when I am really down- I try to mentally list the blessings I have in my life.  I try to remind myself that I have alot to be thankful for!!  It helps-  I wish all of you guys the best!  I pray that God will bless each of you!

survivor08 · Answer

Yep.  Kills my neck to look up.  In fact I have gotten into the habit of putting my hand behind my head to support it and sorta "lean" back a bit to look up.  I am so use to doing this I dont even realize it anymore.  When Dr. Heffez was doing his exam and asked me to look up, I did this and when he said something I was like "why? what did I do?"  LOL

burdzmom · Answer

it is so comforting to read what all of you have posted. for as much as i cry and talk about how i feel and the loss and emptiness, those im talking to say they are sorry and they unnderstand im sad....but all of you truely get it. all of you are the ones that i can cry to and will really really get it. THANK YOU :)

codell · Answer

Burdzmom- I too tried the alcohol thing.  Yesterday I wanted it to stop and I wanted to have a nice time, so I had a margarita and today I am paying for it.  My head hurts so bad I can barely keep the tears back, but the crying hurts so bad too.  My eyes feel like they are about to pop out of my head and having them open with ANY light at the moment is killing me.  One drink!  I had to clean a mess out of the dryer and now the clutter in my head just won't stop!!!  I also found, it makes me feel better (in a sick way) if I have a drink and am my clumsy self, then they just think I'm drunk.  At least I know I'm not and they wouldn't understand any other reason right now.  I am about to turn 30 and I too am unable to work. I can't get out of bed some mornings, not from depression, but b/c for just a moment, my head doesn't hurt and neither does my back and I know once I stand it will all begin!

northernstarmn · Answer

ok i admit i didnt read all this nor all the responses--just the highlights-
i dont so much have pains (i do but not overly bothersome) I get more dizzy then anything when i look up and like carolyn iam no longer allowed to ride bike,etc...i can go for walks and thats bout it they wont even let me on my tredmill til i can look up without getting dizzy...

TC-Lisa

*Stormy* · Answer

If it's any consolation...it will get better :)

Once I had the surgery, I began to feel some hope...things do go up and down though and some days are better than others. But it has given me hope that one day I can do at least some of the stuff I did b4. I don't know...for me going 7 months barely being able to walk along with all the other stuff...and not knowing what was wrong with me...well nothing now can be worse than that. 

I know the feeling of wanting to just feel calm...but for me alcohol would work at the time but give me a terrible headache afterwards and make me feel awful...so I had to give that up too.

I feel your pain at spilling stuff...every time I go to a social event where you have to stand and hold a cup...I drop it and it is so embarrassing. Somehow I forget that I can't do that...until I drop it. Just happened last weekend at a baby shower...and I had to stammer apologies while they tried to get coffee out of a cream colored carpet!! At least they were good friends of mine and understood...but I felt like I wanted to cry.

You will get to the point where you are not as scared and then you will feel the determination to fight this...

I am really sorry that you had to retire so early....I am 33 and have 3 active boys who I now can't go bike riding, hiking etc. with...I know the place you are at but you will get past it.

Take care
Carolyn

burdzmom · Answer

yep - i too have had the same thoughts. Im devastated that i cant play with my girls like i used too.  i can t jump on the trampoline, i cant run and play tag like i used too. i try and make jokes everytime i trip over my feet or spill stuff( all the time) but inside, it eats at me.  tremors, floaters ....its neverending. i hope it will get better but no doctor can tell me it will.  ive lost my job now because i cant meet the high physical demand and stress that it requires so retireing at 32 is where i am. another devastating place for me. It sounds so terrible to say this, and i again have never shared this with anyone, but i sometimes want to drink to make the "feeling" go away. Not get sloppy but just....calm. the feeling you get after a glass or two of wine....that relaxed happy place type feeling.....but i dont because im afraid. and i guess thats a good thing, but scared that i'll get to the point of not being scared of it anymore.  i told my DH that i spent 100$ at the liquor store the other day but havent touched anything. Im a scatterbrains right now......who knows, maybe my visitors will enjoy a cocktail or two since i look at it and havent touched it. LOL!

ugh.........life........UUUUUUGGGGGGHHHH!!!!

codell · Answer

Hi!  I too have that issue.  I have the floaters most of the time and tunnel vision sometimes.  I have also experienced the vibrating feeling in the eyes.  Currently, when I look up I have  alot of discomfort in my jaws like behind my ears going all the way to the back of my head down the sides of my neck and up my right of my head to the back of my right eye.  If I hold a child on my hip (either side), I start quickly losing feeling below my waist and get really naseuas.  I have the tremors as well.  I haven't had any surgery, yet, but shouldn't surgery help? I'm still learning.  I would think any life after surgery would have to be better than what I am living now.  I really told my DH last night I feel my children would be better off having someone else here with us to help raise them.  I am not functioning the way I should to raise three children in this world today and one of them is dealing with some of the same issues.  I feel I should be able to help them more and be more playful, but I can't.  That devastates me!

I am sorry, I didn't mean to go on about myself.  Have you noticed that big of a difference after the surgery?

codell

*Stormy* · Answer

Yes as you can tell...Selma and me have had this discussion :)

So many times I hear people going through things and I think "I remember going through that at this point in my dx or this point in my surgery..." I think it really helps to know that you are not alone and we all can feel for you when you go through that stage..

The stage of realizing my life had to change and that I may not be able to do the things I wanted and had waited to do (I had children early)...it was and is the hardest thing that I have had to experience so far..
But now..I am moving on to opening myself to all those things I could do or maybe that I wouldn't have even considered b4...
Whenever one door shuts, another door always opens...I really hope that you will find that to be true.
In the meantime, go ahead and cry...it is what needs to be done now, for all the things you lost. I remember several months after I had lost my ability to walk normally, I still had no dx but I realized that there was REALLY something wrong with me...I sat down on my bed after the two oldest had gone to school and the youngest was napping and I absolutely bawled my eyes out. You guys are actually the only ones I shared this with b/c most people know I don't usually cry...but it made a huge difference and once I was done I picked myself up and had the fight back in me..

Hopefully this will inspire...
Take care xx
Carolyn

selmaS · Answer

Hi...I can relate as well after 15yrs at one job I am sitting here at age 50 trying to figure out who I am.....sigh....we will all figure out who we r and what is planned for us.....

Carolyn and I believe there r stages to being post op as well as pre op for chiarians....I am going to start a thread so we can list the diff stages so it can help others make sense of what they r feeling and know it is a normal phase.

So, if u r sad about what u r losing mourn that loss and move forward.....we r right along side u  : )

"selma"

WarriorMomma · Answer

Here is journal I wrote to myself on May 25, 2010. Hope it helps you too....

You are not defined by what you do, but by who you ARE. There is a large difference between SGT Wilson and Michele. Do not let that bother you. Just become something else.

WarriorMomma · Answer

"im told by neuro i was mm's from death. . . shew. . . . dodged that bullet, huh?! "

This made me smile, okay I laughed out loud. You are such a cop! :)

SORRY you had to file your retirement paperwork. If it is any consolation, knowing you are going through the same struggles (a few months ahead of me) is making it easier. BTW, I have been in the army since age 17. In August it will be 13 years, so at age 30 my career will be CHANGING too. 

God has a plan for us, we just can't SEE it now. Sorry love.

burdzmom · Answer

well this is a horrible day for me.  yesterday was terrible.  i was in the pool at my inlaws. tredding water in the deep end, looking up at my daughter on the diving board above me. . . horrible pain, dizziness and just feeling like my eye balls were heavy, where i could feel them actually moving or shaking in my head. very strange and uncomfortable. my gait is horrible today and im just so uncomfortable. on top of that, i had to file my retirement paperwork today and am devastated. lots of tears over here....im just so lost now. :(

*Stormy* · Answer

Selma..I can't stand looking to my left either!!! It makes me feel like my head is going to start shaking....weird...

Carolyn

selmaS · Answer

Jillian..yup here too !!

I really do not having to look to my left either...and that was my worse side herniation wise....so some of the issues remain.
And since u were so bad at surgery I can only imagine that u also have some nerve damage.....

Looking up has always been an issue for me.....

"selma'

*Stormy* · Answer

Hi Jilian

I'm 5 months post op, so just a month ahead of you...

Looking up, especially for a prolonged amount of time, does cause me pain at the lower part of my head as well as my neck. Not just that, it also makes me feel dizzy and nauseated too..I have to keep looking down and then up again, if I have to look up at something (first noticed how bad it was when I went to my son's class after surgery and was trying to look at some of his artwork displayed up on the wall). Honestly, I do think this may have been more noticeable after surgery...

I totally understand the frustration of still having a number of symptoms after surgery...I too still have gait issues but I have found that I did see improvements in that area. Have you seen some relief? I truly hope so.

Take care

Carolyn