i hope everyone is havin a pain free week.its 3:13am here in Texas & i as usual am still awake.i have a few questions 4 u all but 1st heres a lil about myself.im 34yrs old,a wife and a mother to 2 sons from a previous marriage & a step-son with the marriage im in now.they r absolutely amazing boys!my yr old son has severe adhd & a form of high functioning autism called aspergers syndrome.my 9 yr old also has adhd.so needless 2 say my life is a whirlwind lol.2 of our boys play select soccer year round so we stay busy.well i used 2 stay busy.ive had issues with migraines & other things for quite a few yrs now almostyrs ago i started seeing a dr at a health clinic as i dont have insurance.the dr ordered an Mri & Eeg but never told me the results of either just prescribed anxiety meds & stated i was havin issues understandably because of my adhd/autistic child.i took the meds 4 a lil while & stopped takin them because they werent helping when i was given no help from my dr i stopped going & just dealt with it until 2010 i couldnt anymore,it was all gettin worse.so i began seein a different dr at a different clinic.he ordered a copy of my Mri report & right there on the report it stated arnold chiari malformation 1 with a herniation of 15mm.i was than refered to UTMB in galveston tx 2 the neurosurgery dept.i was approved on the income based program,i pay 40$ everytime i see the NS.the 1st & only appt i had with the NS he looked at my mri 7 of course wants new mri's done of my head & ordered others of my spine & neck hes afraid i have a syrinx & other things because i have drop attacks,heart palpitations.skipped beats fast beat etc..well my copya 4 the mri's is 1,200$!im like so many other americans who lives paycheck 2 paycheck with no benefits,i dont work due 2 not bein able 2.so needless 2 say no mri's have been done 7 im gettin worse!the only thing my reg. dr & Ns can think 4 me 2 do is apply 4 disability.in TX u cant get medicaid unless u make less than 200$ a month,r low income & pregnant or disabled.my dr is going 2 write down everyyhing i have going on so it hopefully helps me get approved.i know it might take yrs though 7 am afraid im just gonna get worse while i wait!my symptoms r progressin & my GUT" is tellin me its gettin bad!i daily am in some sort of pain or im nauseated!my stomache gets upset 4 no reason 7 i vomit 4 no reason1i also have GERD so that doesnt help.its impossible 4 me 2 b still its like i have resless leg syndrome all over my body!my dr is also afraid that the "pulling"sensation i get might b seizures.i have constant pressure fluid like in my mainly right ear,i stutter now at times,cant find my words which sucks cuz im a poet!well i was b4 chiari!i was a really good speller now not so much i forgot how 2 spell the word thought earlier!i cant get my words out can b lookin at what i want 2 say but cant get the word.i fall get light headed,vision is insane,double vision,floaters etc..all of what u all get.i in the past month have developed a spot in the outside of my right thigh that stays numb,the past few days im havin more probs with my right leg.im clumsy as hell!muscles r weak.constantly tired even if i sleep.brain fogged, forgetful, moody, short tempered,lump in throat.problems swallowing at times i chocked on a tiny ibuprophen.and now i cant sleep on back im havin difficulty breathin when i do.i can b lyin in bed which is where im usually at & i feel my heart like skip a beat or get a double beat it knocks the wind outta me when it happens scare the crap outta me!ive also had the right arm go heavy & numb almost prickly feelin & the right side of my face feels almost numb like its droopin my eye feels all poofy but doesnt look like it in mirror.i guess im just gettin worried cuz its all progressing,sorry this is such a long post1 i tend 2 ramble ALOT!!!LOL!!!does anyone have any ideas is this just normal CM crap?not that havin CM is norm lol or should i worry that things r gettin risky 4 my health?i dont go 2 the ER cuz well i live in a small east TX town with 1 hospital & they have no idea what 2 do im sure lol i guess im just gettin scared i dont want anything 2 take me away from my amazing kids or husband b4 its my time & i know now isnt my time!i can no longer participate in my kids lifes like i did due 2 all this & i hate it! i hate chiari!im thankful i know what i have now but doesnt make me hate it any less!& now my gut is tellin me that chiari has caused other issues and im worried!grrr i just needed 2 vent i suppose thanks 4 listening again so sorry so long!Blessed Be 2 u all!
Hi Danellle,
WOW......you have a full plate..your post brought back memories for me..like word-finding and spelling..so weird,huh??
What did the NS say about the MRI findings??? and all your Sx's??? Does NS want to operate??? Tx has a crappy healthcare for lower income it seems.
Have you checked out with the hospital as far as medical assitance??? Sometimes hospitals will give 'free medical care' based on income and need...look into the Hill Burton Act...i think thats what it is called.
I am glad you vented and let us know a little bit about you....we are all in this together..we are here to support, listen, have empathy and share lifes struggles.
PLEASE keep us posted.
Love,
Lori
lori:ya my NS said even without seein recent Mri’s he wants 2 operate but cant without knowin exactly whats goin on in my head & back.i can get the Mri’s with 1,200$! thats my copay!its all based on my income 2 get surgery ill have 2 pay around 4,000 4 my copay at least that!so im at a stand still right now.and it really sucks!i had me another fall about an hr ago.i was standin up & went 2 coughing when i got a flash of light in my eyes then it went black & i hit the ground!but i must say i love my 5yr old pitbull!i know a lil off subject lol but when i fall hes there 2 check me out & will even try 2 help me up.i think sometimes he can sense when im gonna have a fall or somethin cuz he gets glued 2 me follows me everywhere than when i fall he leans down beside me so i can use his back 4 balance whil he stands up helpin me up!hes a big pitbull not the short type so bout 95-110lbs & people say pits r bad dogs!ok so that was very off point lol
lori said:
Hi Danellle,
WOW......you have a full plate..your post brought back memories for me..like word-finding and spelling..so weird,huh??
What did the NS say about the MRI findings??? and all your Sx's??? Does NS want to operate??? Tx has a crappy healthcare for lower income it seems.
Have you checked out with the hospital as far as medical assitance??? Sometimes hospitals will give 'free medical care' based on income and need...look into the Hill Burton Act...i think thats what it is called.
I am glad you vented and let us know a little bit about you....we are all in this together..we are here to support, listen, have empathy and share lifes struggles.
PLEASE keep us posted.
Love,
Lori
susan:thanks 4 listenin & i think i might have 2 start goin 2 the ER it really scares the crap out of me at times!again thanx 2 all of u 4 this site i get on here & read everyones posts 4 some insight & its helped so much
Blessed Be
Susan Erickson said:
danielle,
I can relate to everything your saying. Trust me. I'm waiting on DSS, ssdiasability, andother veteran assistance and have no medical either. I also live in a snall town. I have to go to another city to even get to the hospital. Its close but maybe it will take a couple of ER trips, and maybe they can refer u to the other hospital or at least do the full spine MRI in the ER. That's the first place I had mine done. The paralysis can go bad really quick. Mine started with ny legs. Then one day, I thought I was having a heart attack and had to go to the ER and couldntt feel anything and had the numbnedss/tingling on my whole body. It scared me to death. That's why they did the full spine MRI. I was feeling the paralysis all over. Way scary!!!! I know its hard when they want money to fix you and you just don't have it. That's why I mentioned the ER. That's what ultimately got my NS to consider surgery. Was the fact that I was going to the ER, they kept referring me and I kept calling telling them I was getting worse. Don't give up pushing the NS. Please don't. Cuz the paralysis can come on so fast and if it goes long enough, some of it could be not fixable. Let me know what you think!!!!
I've got you in my thoughts and prayers my friend!!!!
Much love,
$usan
thanks so much ladies!Susan i think next fall i will have my husband take me 2 ER,im just very stubborn lol
Danielle,
Just hoping you are doing ok. thinking of you.
Blessings,
Lori
hi ladies,im doing ok,thanks 4 checkin on me.ive had a rough couple days,my mother-n-law suddenly became ill & passed away monday night.so ive been busy with family,than viewing than funeral this morning & visiting wirh family all day till about 6pm.so i can feel my Chiari screaming at me!ive been suckin up the pain,weakness,tiredness etc…because i had 2 keep it together.but man i can feel it creepin up on me.Im actually afraid 2 go 2 sleep(like i sleep much lol) i just know im gonna wake up feeling horrible!!!ahh i hate bein me lol
Oh Danielle...I am so sorry for your loss. My sympathies to you and your family.
please, when things calm down after the funeral and such....post and let us know how we can best support you....
Love,
Lori
thank u so much!ive pushed ut this past week than finished it off with Easter!im really starting 2 feel it now.Neck/shoulder area real tight,hands r shaky blah!!!here we go!!!
lori said:
Oh Danielle...I am so sorry for your loss. My sympathies to you and your family.
please, when things calm down after the funeral and such....post and let us know how we can best support you....
Love,
Lori
Good advice, Julie. We should all be able to get free care when we don't make enough to pay our copays on these ridiculously outragously priced tests! Unbelievable. I know this probably won't help you, Danielle, but I just got approved for disability. I was denied twice and then got an attorney, had a hearing with a judge and got approved. The whole process took about 20 months from my first filing until I was approved. I was then eligible for Medicare. I live in Indiana, but disability is federal thru social security, so I think the process is similiar in most states. I used to work in a hospital that had a program for those with low income or no income. It was a foundation set up that people donated to and the funds were used for the indigent. Have you looked into that at all? It only takes a phone call to ask if the MRI place has a program for low income. They are either going to say yes or no, and if it is no, say thank you, and move on to the next facility. After I had my surgery, the hospital looked at our tax return and all of our monthly bills and determined that we qualified for 100% discount. So they wrote our entire portion of our bill off. We owed nothing! There has to be some help out there for you! Call a disability attorney's office and ask how to apply for temporary disability. Is it possible to apply for temporary disability while filing for permanent disability? Did you leave a job because you got sick? Were you working prior to getting your diagnosis?
I know this is a lot of questions, but I am concerned about your health and symptoms. I wish the healthcare system was different! We really need socialized medicine or better coverage for those that can't afford the high premiums for insurance coverage. We need to all write to our congressmen and senators!! (Just a little political plug - Sorry!)
Love you all and wish the best of luck to you, Danielle.
Carla