How to cope with chiari

[Sexybare]

I have had this static/ringing in my head/ears for a lil over two weeks now,i never feel good anymore because I get nauseous out of no where. I even noticed a few dys ago I get motion sickness. In the car, sometimes watching tv. Of course the ibs. Slight headache all the time. Im just starting to get fed up. I mean is this what I have to look forward to everyday, forever. I need some tips on how to cope with this everyday. Any comments or tips would be awesome and appreciated. Thank you much!

[net72]

Thanx honey!!! and yes, belive it or not i feel bllessed that i have  chiari, because i knew exactly what to do and had to push for the MRI for my son when i saw the symptoms.. and believe me, as you know...they all thought i was crazy til they saw the almost 10mm on the mri...isnt that ashamed? But yes, there is such a comfort knowing that he doesnt even have to finish a sentence and i "get it" , and such a comfort knowing that my experience can help my son...experience i wuld necer even be able to grasp without having it myself :)  anyhow...you should DEFINATELY ask for an extension on your time off!!!  i dont care what you have to say...numbness, stiffness , dizzines...whatever... dont let the fact that a neurosurgeon has to feel like his /her job is done and magically you should be ready..to thier defense..they really have no clue what it feels like...its up to you to tell them..and if they dont listen..find another.. i ll pray for you...and keep in touch.. if i dont respond right away..remember..i dnt have internet..have to drove to get wi-fi

[Sexybare]

i give you alot of credit. you are going thru alot with your son and yourself. but you and your son can relate to one another with your illness. im sorry to hear about your sons chiari,you dont wish this upon anyone, especially not your own babies. no matter the age they are still our babies. i am scheduled to go back to work mon the 31st and am thinking of asking my ns for more time off. i do not feel i am ready, if ever to go back to work on an assembly line building car gears. im not sure i can do it anymore?! good luck and god bless you and your son.

[net72]

hey there!!  I worked in orthopedic srgery and sports for 15 years and you are definatel doing too much!!! my son had the surgery, the drs all wanted to hurry and say he cld go to skl in jsut 2 weeks!!!! waht!!! anyhow , we waited an wxtra week,, and it was STILL too soon!! all the hard seats, sitting and looking down was too much and we had to pull him again...fortunately the school wholeheartedly agreed...i understand your need to get things done..REALLY i do...and i knoe if you dont noone will..  but this is just one of those times you have to just let that go and let it pile up becuz its just not worth compromosing your recovery and or undoing waht was done...trust me..... good luck, ill be praying for you God bless..  p.s.  i have 7mm and no surgery yet, i live in michigan also, and am very internet stupid,  i am trying to get my profile done correctly, but i oly have little time due to having to loog on to wi-fii at mcdonalds in order to chat or get anything else done for that matter so...if i seem like im spelling wrong or not making sense,  its cuz im in a hurry and will log on as soon as i ca!!! take care

[net72]

honey you are not alone!! i have the same issue with ppl in my life livng in oblivion...and family members who dont bother getting the whole picture of your life and what you live with yet love to get the sympathetic attn from others by saying "my loved one has chiari....poor me.."  outside of this forum, i tend to keep my dealings to a few  handfull of ppl, and yet becuz of this "feel sorry for me" stories from certain family and friends, i find myseld in situations where im approached by complete strangers and ppl i barely know asking me to explain etc...and as you all well know,k it impossible to get it all in briefly so..i usually try and dodge the Q..  recently i have learned to try and share our story in ordoer to get ppl around my son to help him best they can. . teachers, friend, etc. you must remember, aside for the gossip and drama junkies, there are jsut as many ppl out there who genuinely want to help, and you should let them in..it took me some time to do this, but we do live in a wonderful community that all pitched in and helped our family duringthe time of my sons surgery,,, cooking meals for my teen and hubby while i was @ the H with my son,k  cooking for us 3 xs a wk for a few months becuz they knew were in a bind with me not working and having chiari myself(Which they only earned upon my son needeing his surgery)_ This was one of those times where i do not regret opening up and sahring the situation a little in order to help my family.. and i never ignore my turns and opportunities to help in return...these ppl were a true blessing from God..and i had to remember why i got in the medical field in the first place was to help others because it made me feel good, and it would be hypocritical of me not to let somone do the same.   On the issue of  ppl not getting it, or wanting to..On a lighter note..some...especially men ..do have a harder time admitting their wife is in pain...its easier to live in denial.  they dont want things to change and in my husbands case,  still wants me to do everything..becuz thats how i am ...always doing for others...and i have nooo regrets about that..but i did have to understand that part of this "need" in him  was my own fault for never asking for help.  so...i have had to have many converstns wth hubby about this..in a very calm and "plz understand me" tone.  but its truly sad that nothing has really changed.. just beucause i am willling to take some of the blame for allowing it for all these years, doesnt mean that he cant stand up, pick himself up by the bootstraps and realize that i need him and didnt ask for any of this:(  after all...i do have two sons that are following  his lead, and i dont want to have to ask for help,  i just want it to be offered!! sometimes i get scared because i dont feel like any one is lookig out for me, and im so stubborn that i dont do  very good job of **** it myself!:)   i almost hate it when i get told...oh just go lay down leave the laundry , or the floors, or the dishes etc when he sees im in pain doing it...its his way of not feeling guilty i guess...yet noone proceeds to get up and help!! and if i dont.. it creates just as much stress ....if i dont get it done...it just sits there and piles up and creates even more stress!!!  so we are fighters...we have to use what we have when our bodies let us, and noooooone understands what that intails.  It IS so hard becuase ppl look at you, and they cant SEE what youre feeling...and if your anything like me...i dont want them too..and i dont want that to define how they remember me... i was once very vibrant and strong and athletic.   i find myself literally fighting my awkward gait or weakness so that noone sees....and therefore of course..."whats her problem..she looked like she was doing fine"...but it doesnt  matter what ppl say...as long as you know your truth...and unfortunately, it is a lonely place to be...which is why we are all here venting to each other...so that we CAN have our moments that others understand and we dont get tossed off like its a pity party or that were crazy!!! :)  My goal is to remain strong in front of my boys so they see me as the strong person that doesnt give up...but maybe just maybe, im starting to let go a little and remember that family needs family, and its ok to ask for help...so that maybe my sons wives will get more help that me.. and this is not to look down or complain at my hubby...he pretty much had everything done for him as far as worries go,  he did always go to work and make a living which i admire... but all the worries and bills and tasks and dr appts etc the yard the pool,  all done by me, and before me, it was his mom..so ...like i said, hes not a bad person, just a little clueless ithink...( (and i must say i do hate it when i hear " I work"  ..well so did i up  untill a few years ago..10 hour days, and still had to come home and get all the tedious stuff done...and what i wouldnt do to be there again!!)but i also think after  more than 5 yrs of me going through this, and our son having the decompression, that i pray God gives the strength and knowledge for him to realize that its high time to make the steps to change...not himself, but how some things need more attention.  sadly, i find myself complaining a lot, and thats not "me"... im not happy about the fact that i need help, cuz i did it all before on 3 acres by myself...grass, garage, maintenance, and i enjoyed my selfsufficiency before we enen married...its hard enough that i find mysellf admitting that i cant do it all anymore without help or putting myself into bed for a day...i doont want to have to beg or be angry that the one person in my life whos there everyday has to be told this...:(  it s like..he sees it, he knows it...took my son being diagnosed for him to admit it for me...and yet he still wants to see me as the "old" me.  im still in ther, im still strong,  just a different kind of strong is taking over..i actually told him one time that if it werent for how stubborn i am...he'd really be in trouble...i COULD be a whiner, make excuses and lay in bed all day, but i refuse!! not that there arent days that i dont have a choice,  but there are those times, and he does know that if i say im laying down, or verbalizing a complaint, it must be bad...becuz i just dont like to do either one.  
I know..another book by net72!!! huh,... guess  i needed to vent..having a bad week..weather changes up the wazoo....anyone else have this issue??bloody noses too... it makes sense with the barometric pressure and sp fluid etc..
sexybare,  i havent even had the surgery and i have a problem moving my neck in all directions...did you have this before??  

[jiggle93]

WELL SAID!!!!!!!
As women, and parents we try to be superheros! This is wonderful advice - we are nothing without our family, so take the time to put ourselves first (even if its just temporary) so that we can be our best for our loved ones. They will thank us in the end!

[selmaS]

  Get it right...DARK Chocolate!!! LOL... : )

  And we do have a list of abbreviations in the health pages ....lol....http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

[ChiariWolf]

I'm with you! I'm not a person who uses a cell phone to txt all the time. My extended family does and of course expects me to know what they just said! I use just a few acronyms from my old days on the bulliten boards [that was before most knew what Internet was :-) ]. Such as JMO or JMHO was one of my favorites as written text is just so impersonal. So when I write something like the comments above I prefer to remind the reader {This is just my opinon} or {This is Just my humble opionion}.

And when I don't know... which is often... google is my favorite tool! :-)

Hey! If Sugar is the only thing you can't recall are you certian you have CM? Or did you forget? :-) I've been only my way to bed since ... wow almost 4 hours ago .... keep forgetting to go to bed. :-) Life must go on, but never without CHOCOLATE!

CW

[linnielou232]

I just want to coment and say thank you for the abbrev. definition.  I just asked the other day what some of them meant.  I write them down now so I know what all of you are talking about LOL.  This Chairi abbrev. is awful when you CRS.  (Can't remember Sugar)  LOL!!

[ChiariWolf]

Look at it this way, your body is obviously saying 'Whoa!' in a loud voice.

We can all laugh it off and push ahead because we want to get on with life. Heck, look through some of my old posts two years ago. I was and am as stubborn as they come. Had to learn the hard way and belive me IF I had it to do over again there is no one or anything that would get me to rush the recovery. I seriously belive that some of the issues I deal with now are because I did push it. I'm not a sit on my duff kind of guy, never have been and hopefully never will be.

That said, you mentioned Kids.... They NEED you to let this heal so that you can be Mom again some day. Give yourself a break, take some time and heal. JMO but if someone expects you on an assembly line that soon.... well sorry but they are full of it and don't understand what your body just want through.

JMOs above, wish you the best,
CW

[Sexybare]

you are right on. i appreciate everything you say. i have a good family but ya i dont look sick, therefore i cook dinner, take the trash out and everything else. its just agggrevating ya know! thank you so much. and then my boyfriend wonders why i get pizzed out of nowhere, lol

[linnielou232]

Just reading all that you are doing scare's me, let alone going back to work.  I know I started doing thing's at my 1st surgery and I thought Oh I'm fine, so my family thought I was fine. Wrong.  Went through 3 more surgeries due to not listening to the doctor and ecspecially not to my self and my body,  believe me.  If you don't slow down you will be worse off and your time of healing will take longer.  I was a person who done every thing and any thing for my self and I  believe God has us suffer for our choices and I did suffer and now I am no longer able to work.  Just little chores around the house and I know going though all this.  It is O.K. to tell me and ask people for help.  It was a hard lesson for me to learn.  I am 1 year post op and I still have difficulty with  bending #1 and driving.  As someone else stated on here avoid the sisuation's you are used to.  When we have this sugery we just need to find different way's of doing thing's.  I used to love to sew, crochet, but right now I except that I can't do it so I don't.  It's one of the hardest thing's to do is except the thing's we can no longer do.  We all can still do them we just need to find different way's in doing them.  If I am having a conversation with someone who is standing up instead of looking up I stand up.  I use my mirror's more now while driving.  We all have those day's when it feel's hopeless.  I had one the other day and with all of your love and support it help's us heal.   So who know what tomorrow will bring for any of us, but if it's your laundry, or cleaning of a floor, call a family member or a friend.  I'm sure they would do it for you if you ask.  Having Chairi is really a hidden  illness.  I hear all the time.  "You look so good".  So letting people know that your not is fine.  They will understand your illness better as long as you are honest with them and yourself.  My daughter said to me the other day. (God bless her)  "It's o.k. to have bad day's.  We all have them".  I never let any one see them before.  Just as Net 72 said.  We have to except the thing's we can not change.  Excepting is achieving.  It's been a struggle for me and it might be tomorrow too. As far as your pain.  I still have to call my Dr for pain med's.  it's flustrating but there is nothing more we can do.  I just had steroid's injecton put in the back of my head and it seem's to be helping.  Maybe your doctor could direct you in that direction.  I don't know how long it will last, but I had the shot's 2 day's ago and I am tender, but not throbbing with pain.  I wish you the best, but If I was you.  I wouldn't be in a hurry to get back to work.  If your having problem's as far as house chores you sure don't want to put more on you with a job.  Love your self first.  Sound's like you have a lot of people who love and need you.  Take it easy

[jenshead]

Reminds me of a friend of mine a few years ago...I had to have surgery on my knee and I told all of like 4 people about it.  2 were my parents and 2 were friends that were helping me out after.  Then this other friend of mine sees me on crutches a few days later and says to me "Why did you have surgery if nothing was wrong with you??"  Because clearly, since I didn't ever whine, I was never in pain.

I'm pretty sure that friend (he truly is a friend, if a little naive at times) will never say anything like that to me again LOL. He got an earfull!! Personally I'd do the same thing to any family member who acted like that...maybe that makes me mean, but it sure did make me feel better!

People who have never felt ill like us never do quite get it

[selmaS]

  I would deff say so...and have ur family pop on here to see what chiarians go thru....u should not have been doing that now let alone at 10 days post op.

There is no cure, just treatment to restore flow and slow progression...but, u have to be careful bcuz what u do can cause things to flare back up.

Let ur body heal...just bcuz the scar is healed does not mean u r.

Every now and then my DH forgets that I still have issues with depth perception....I feel I should not have to continually explain myself...it is upsetting at times....

  I am with bookworm with this issue but u don't look sick so u should be able to function...really frosts me....ugh

   Let ur family know, that some of the issues including still being on pain meds is due in part  that u r doing too much .

[bookworm79]

Sexybare, your words upset me so much about your family.  I'm not saying your family is bad at all but I can see my family acting the same way if I have to have surgery and it drives me nuts.  I bet you're one of those people who puts everyone before yourself, who never asks for help, who had no idea what it's like to hear someone say to you "here, let me do that for you," just for the hell of it right?  And then who cares if you had surgery, you need to get some stuff done for them right?  I don't have kids and have a good marriage...but the rest of my family, they don't care about anyone else's needs only their own.  I thought about this on the way home from work today.  I was thinking if I do have a severe enough issue and have to have surgery, do I tell my large family or do I just have the surgery and let my husband take care of me?  Because 1 - if I do tell them, they'll scramble to be all up in it...not because they care but so they can get the info first, so they can tell all their friends and work so they can get sympathy words and time off and paid this and that.  If I DON'T tell them, they honestly wouldn't know for AT LEAST 2-4 plus weeks because I live a couple of counties away and the only time they call is if they want something.  I wish I could take all the folks going through this (like you) and give them a nice recovery retreat fully stocked with 24 hr awesome empathetic nurses for full recovery.  

I do apologize because I'm having a rough day and don't mean to sound negative but it pizzes me off to no end that if you don't LOOK physically sick in the eyes of everyone else, then you better get your azz in the kitchen and get some grub going and the da*n house painted while you're at it.  Argh!  

[Sexybare]

So would you agree that im not ready to go back to work on the assembly line on the 31st? Im having a hard time deciding. I dont want to hurt myself by going back too soon. Do I just let my dr know I need more time?

[Sexybare]

Kind of funny you say that. See ive been doing all these things since 10 days after my surgery. If I dont, it dont get done. Family thinks im fine. Not like I had brain surgery or anything, lol. Not really funny tho. Thanks for understanding and chatting with me. Its nice to have someone understand and help me.

[selmaS]

   It is too soon to be doing daily chores like that...to do laundry u have to lift.... I think u should slow down and let urself heal some....

U get a timeline from the Dr as to when u can do things, but u have to listen to ur body and urs is saying something.

  I can not imagine doing those things at that point in recovery.....granted I have a few other issues going on.....I am 2.5 yrs post op and still have issues looking up.....

Try and go slower and only do what need s to be done, get someone to do the lifting, rest when ur body says to...and slowly step off the meds, they will mess u up big time.

  Patience is what we need post op.....and so do our families when it comes to the daily chores.

   "selma"

[Sexybare]

just the usual daily activities, getting the boys off to school, dishes,laundry. but usually need a break in btween everything. looking down bothers me, so does looking up. looking to the side bothers me after a few moments also. i tried stopping my meds but couldnt take it any longer so i started again. i take vic and diazepam.

[net72]

sorry, i think i was responing to someone else about me holding out for surgery and trying to live with it.... anyhow.. my son had the decompression, did great for several days, and worse therafter for a while.  you must remember that you were very well drugged for a time, and those wear off slowly, and then comes the time that you held  your neck stiffly to protect yourself which is natural and we often dont realize were doing it.  they cut through a lot of dense muscle tissue in your neck to get there.  also. neurologically, symptoms can take up to a year or longer to completely dissapate.  be patient, this should  pass.  just like any surgery, when you dont lose it , you lose it.. you need to rest to heal...and yet all that rest tells your brain you dont need it for certain things..your neck muscles take a beating and stay sore for a while..try to continue gentle motions to keep circulation going there..gently massage it too..very important. my son had this issue, it became more apparent 2 months after, due to holding it in one place for protection,  he also still had some issues with his legs huting and feeling heavy for a while..and has since gone away.  he still hold his neck more stiffly than before, but its a small price to pay considering he hasnot had anumb face of lightning bolt diabling pains since the surgery...its been a year!!! Good luck

[net72]

yup!! bending over is the worst!! i also find that excercise tends to make my ears hiss and ring along with neck and jaw stiffness.. and then comes the "my spine feels like jello and everything hurts thing..  the ears thing makes sense because your auditory nerves cross at the same junction at the base of your skull.  everything else cmes from the csf being blocked and squishing the brain and the fluid not feeding all your organs includig your muscles properly.  unfortunately thusdoes not show up on MRI when you are relaxed and laying down so i dont give the mri 100 % value.  find a dr that will be brave enough to acknowledge that..I too am waiting and holding out with the surgery,  i havent had a dr confident enough to tell me it will make things better...i am a candidate at 7mm, yet they have not enough research to link all the symptoms to chiari to fit into their little box of answers..they need to think outside the box.  the only ones that seem to do this are the pediatric neruosurgeons...thank God for my son, who also has it and had the decompression due to quick progression of painful and numbing symptoms...there were some days he couldnt even put his pants on due to the  pain in his legs...which i belive came from the tightness in his spine...toe-walking is also common with chiari, and tethered cord due to the "pull". anyhow. He is doing much better, but still having the seizures, which i hve no doubt were triggerred from the crowding and blockage, which by the way did not show on csf study, but when they went in,,,there was bruising, atrophy and anemic tissue to that area of the brain...Mri only shows "laying down"..not upright, holding breath, excercising...which increasies csf pressure and gravity pushes brain downward etc.   They really need to perfect these studies.  anyhow.. ive also been told my symptoms may not be irreversible due to how long it took them to  find it=3yrs.  so yah,  i gave up softball, volleyball, a lot of gym excercises,  but i never quit on finding other ways to reinvent myself in order to LIVE!!!...pilates, yoga(some i cant do because of bending etc....you gotta just do what you can!! God gave me 2 arms 2 legs, and my mind about me(most days lol) and i dont care how much it hurts, i keep using them til i cant...and believe me, there are days that when i do too much,  it puts me out for a day..and they are happening more often..sometimes i just cant even hold my head or myself up from sheer pain and weekness... but you just gotta learn and pick your battles until you see that you not "living" anymore...thats where the documentation, diary and a good dr come in.. because there may come a time where you do the surgery..or if you cant get a Dr to look more thoroughly into what constitutes surgical intervention other than just an inaccurate csf flow...or waiting for a cyst etc..which by the way i dont believe in...you know the fact that they say youre other symptoms will only be present if you have cyst or syrinx... some dya they will get on the horse and take the gut s to specialize in chiari...its much fore difficult to be taken seriously as an adult..so if your child can be corrected before they end up progressing and in our shoes...look heavily into it

[net72]

That's the spirit!!! I had to make the choice to live with it for now and not proceed with the surgery...my only problem is finding a darned doctor that will help to continuously document my progress and sypmtoms accurately and stop trying to pass the symptoms off as something else!! as this is key to continued treatment and future decisions..   I also wish to express that  you ask to be weighed, and measured at quadricep and bicep areas for starters, as i have experienced quite a bit of artrophy in the past several years and the only one documenting it was me!! and the dr. only writes it off as subjective, because he wasnt the one doig it!! ugh---yah i know, i need to keep looking right?? anyhow, only you can help yourself, so that the drs can help you.  you must keep a stiff upper lip, yet dont border on denial, at the very least keep a diary....there may come a day where youve decided enoughs enough, and you;ll need the documentation to help support you when the time comes.

[selmaS]

  Ok..so u r in the early stages of recovery....

What do u do daily?...what meds r u still on.....??

It is typically around the 3 month time frame that many will have symptoms reoccur....they should not be as bad as b4 surgery, and u should report ne that r or that r new.

     The MRI will show if there is nething to be concerned with, but so mention all these issues with the NS....

  "selma"

[Sexybare]

thank you. the last thing you said is what i need to really do. not let chiari run my life, but let me live my life. i appreciate that and i need to remember that on the bad days, thank you very much!!!

[Sexybare]

i am 10 wks post op. due to go back to ns on tues the 25th for head mri with csf flow study.