"You do have ACM, but I don't think it's big enuf to be causing you problems."

[Shelltn]

Are you freaking kidding me!?!?!?!? Evidently, I absolutely believe there should be mandatory continuing education requirements regarding the latest studies about Chiari because so many "Medical Professionals" are not aware & could seem to care less about finding out new updated information in regards to the care, treatment, well being, & success in the quality of life of all of us suffering with this condition.  Does anyone know how to even begin to go about opening up the eyes of those who are just so easily dismissing the  importance & severity of the damages(sometimes irreversible nerve damage that we are facing because the ones who we trust & we put our lives in their hands so easily dismiss our concerns & complaints)?


Yes I suppose this could be considered a rant, but I won't apologize if anyone is offended....this is absolutely ridiculous & uncalled for & this is how I feel.

It's pretty sad that in the past few weeks I have told/taught/enlightened at least 4 health care providers more about ACM than they even knew.... I don't claim to know it all, but if it wasn't for my persistence in trying to figure out what has been wrong with my entire body, I wouldn't have gotten this far & my journey has barely begun. I have received just a little bit of self gratification being able to blow the minds of the" not so knowledgeble" medical professionals I've gone to for help here lately & I'm waiting (not very patiently at all) for my out of network referral for Vanderbilt where I'm praying I can finally get the care, understanding, & respect I've been neglected of for the past 18 years while suffering from the unknown condition that I personally diagnosed myself with after many many many months of research & studying hundreds of MRIs online. As soon as I picked up my MRI disc from a NS group so I could take it to another specialist, I immediately got to a computer & I found the ACM within seconds. I broke down crying saying "I knew there was something wrong & nobody would believe me!"  And I also have the MRI reports posted with my pics which does say I have bulging discs from C3 down to C7 & an anterior disc protrusion at C6-C7, but that's just causing paravertebral muscle spasms.....LMBO...well what about my brain that is herniating out of my skull???? Is that pressing on my brain stem/spinal cord & blocking CSF flow not a big deal? Oh but wait, I'm just the patient, what do I know about my body, right?

Ok, I guess that's enuf for now.... I do have a tad bit of experience in the medical field as well as the legal system... I just wonder how many points my IQ  (was 136] will end up dropping if I have to have any cauteruzation of my cerebellar tonsils which absolutely terrifies me to think about.  I do enjoy being a goof off, don't get me wrong, I'm a bigger kid than my 11 yr old son alot of the times. I just wonder if I'll be the same 'ol me after all is said & done...well hopefully a slightly altered non ACM version with the same goofy episodes of nonstop giggles for no apparent reason. :-D

I've texted all this on my phone, so forgive me for any grammatical errors or extra letters here or there....

God bless us who are going  through this  journey..... I don't know what I'd do if I hadn't found my new family....thanks guys....& gals lol

I'm shocked that I was able to complete this without major brain blockage... I guess when something means alot & is this important, my will overtakes my issues I'm having...plus my son is my inspiration to keep posing on through the pain...well my daughter, too, even though she's away in college, but my Skylar is where I get my strength to get up every morning no matter how much I'm hurting or how long it takes just to sit up...

I hope b my phone doesn't screw up when I try to post this.....grrrrrr lol
Shell

[luvmy2grls]

So yeah, those "A" holes should totally be reprimanded however, they are NS and they are better than everyone!!  Ugh well atleast that is what they think..  I was needing emergency surgery as they were talking all this crap and my sister said to the anesthesiologist " are they going to be able to effectively do there job while being so rude to my sister? I mean are they going to be able to do there job as they would on a patient they liked" and apparently the anesthesiologist said something to them and apparently the PA apologized to me, but even when I went to get my stitches out, they were HUGE jerks, I said something about working and he said " I don't even know why your not working now?"  and I thought to myself, because I just had 2 brain surgeries and meningitis, thats why" but I didn't say anything and just left after he was done..  JERK!!!!!!!!!   I should make a formal complaint to the hospital that employs his sorry behind but I just don't have the energy...

I did look at your pictures and I posted on them!!!

Anyways, keep us posted!
Good Luck and Take Care
Jen

[katie162]

they said as of now i do not have syrinx,i have chairi malfirmation1 about 7mm, and i will look at your mri to see if anything looks fimilar as to what myn had shown obviously it wont look just like myn but i will deff look at it....your own nuero didnt even tell you that you had cm? you found it yourself!!? i dont know my self but these docters now a days honestly ive seen 2 NS and still in the process of seeing my neuro which he is making me go for another mri of my brain n spine as well but ive already done three of them one on the brian,ctspine & also brain csf flow study mri and all showed the cm1 and my fluid slower then normal i just dont understand how they still dont know if my symtopms are caused from the chairi its very tough to go thru all of this so girl i know be strong and stay positive and hopefully things work out for the best and you find your answers also.....im in the process of looking for a true chairi specailists you should also and did you have a mri on the brain & spine or did they do a csf flow study on you? if you dont mind me asking also what your symtopms are? take care

[Shelltn]

That dr should be reprimanded in every way possible & then some....did u report  him/her?  Wow... I plan on sending packets of info to all the drs who I've taught a few things about chiari to lol...maybe even something more special to the NS & radiologist that missed it....to be con't lol


Girl rant & rave all  u want...it does help...i think I skipped the 4 steps of diagnosis, denial, anger, etc...

I've just gone straight to anger for all the years of nobody believing me, even family members who r in the medical field....they're pretty shocked right about now I guess...

Have u checked out my mri pics? Any opinions r welcome....

I wish we could have a chiari simulation set up, kinda like don't judge someone for being diff race, or weight issues, or handicapped....maybe then ppl would b a little bit more understanding or compassionate

Thanks ;-)

[Shelltn]

Thanks katie, feel free to check out my pics, profile  rants lol...i always welcome opinions on my mris because theres some diff looking stuff in mine that I've not seen- & still wonder if those are syrinx  since the report from radiologist or even NS said nothing  about ACM, much less a syrinx....my report is even on one of my pics....

Did u have or still have a syrinx?

[luvmy2grls]

I too know how u feel!  Its funny I have already been decompressed and I still had a NS say "You dont' have chiari and I don't know why the hell u have had surgery, you didn't even need it, did you just go doctor shopping until u found one that told you what you wanted to hear and did what you wanted him to do?"  I was soooooooooooooooooo pissed off, really you think it's fun to get ur head cut open and the bottom of your brain poked and prodded at to removed adhesions ect. HELL NO it wasn't fun and I didn't doctor shop, infact I had only seen ONE NS, and he said that he thought surgery would help...

So sorry I turned my reply into a rant too.  LOL  I just wanted you to that I have been heckled plenty by physicians and nurses about this and my decisions...  I say "Until you have walked in my shoes, laid in my bed, felt what I feel daily, DON'T JUDGE ME FOR MY DECISIONS"  That's how I feel!  

I hope you are able to get a confirmed diagnosis and the medical treatment you need to get to feeling better!

Good Luck and Take Care
Jen

[Shelltn]

I just went bk by my pcp& left a msg with a few ?s including about the statement from other specialist stating I do  have ACM & need to be seen by some 1 who can treat it. Plus as far as resting, I'm suppose to go bk to work tmrw (sewing factory where I look down at a sewing machine for 8 hrs straight & tug & lift bundles of tshirts that weigh more than 5 lbs) & I was told 2 diff things by 2 diff drs, my reg dr said to let her know what she needed to write up as far as a medical leave excuse until I can see NS at Vandy& then dr yest said to continue work until I get into see NS but that same dr said he'd call dr at Vandy & hasn't yet...so idk what to do...

I'm suppose to go pick my son up at my sister's (hr there & hr bk) but if I was going to go to ER about my head/ear pain weirdness/drooping eye, then I'd go to ER down close to where my sis is...

I hate not having someone in my life for moral support in times like these... I've been single going on 6 yrs now & getting involved with someone with me & my malfunctionations at the present time is not even feesible or fair or realistic....yea, pity party over here...whoot whoot...grrrrrr

[katie162]

I know exactly what you are going thru believe me! I've been very sick for the past two months with crazy different symtopms and found I had chairi1 and been
Thru MRI after mris and even had the CSF flow study done and they even told me my ffluid was flowing slower then normal im the back of my brian...i am still seeing a neuro and a neuro sergent and even went to a another neuro sergent for a second opinion and NONE of them dont know if all my symtopms are caused from my chairi and its making me crazy! I need to find the right chairi specialists who is going to get down to it all so don't feel like you are alone in this matter at all it makes me very depressed and feel like im at no hope because of it all and feel like im at my breaking point.....but hopefully you find some answers and find the tight soctrt that will help you also goodluck n god bless!

[selmaS]

  U may want to resend a PM to her...not sure when I heard from her last...it seems it has been a while......

  If this pain is a few days, I would give it a few more days to see if it cycles down...chiari symptoms cycle...and u may b in a flare....see if with relaxing and resting it calms down.

[Shelltn]

I think I sent her a PM, not sure when.....as far as pain, I've dealt with both of those types for so long  but this has been constant over my ear for several days, kinda numb & throbbing but sharp shooting if I touch it & my right eye is definitely not opening as wide as my left one & my left one is the one with nystagmus, so I'm really confused & don't want my pcp to think I'm being a hypochondriac since I've been there 3-4 times in the past week...

[selmaS]

  Oh, I thought u meant u knew her....did u send a PM?

Many times post op members go away from being active as they heal...she may be recovering and not spending time online, but by sending a PM she will get a e-mail that someone is trying to get in touch with her.

Droopy eyes r kinda normal or should I say typical with chiarians and EDSers
and I am not sure what type of pain u mean....is it debilitating pain or a nuisance pain?

[Shelltn]

Lol...ummmmm. I was hoping u could tell me about her....I've not been able to get in touch or anything like that with her on here... Sorry if I confused u....listen, I'm having a new symptom, my right eyelid is starting to kinda droop down /feel heavy....kinda really weirding me out...i have had a constant pain over my right ear for the past few days, but as with everything else as far as pain, I've just tried to ignore it &deal with it....could that b a sign of a stroke or am I being  paranoid?

[selmaS]

  I do know lydelia.....how is she doing?

Validation from a Dr that understands all this means soooooo much.....I know....once u get that, the family follows shortly after.

[Shelltn]

You are definitely the momma on this site.... I wish u could do home visits lol... Do u know lydelia? I think she's a patient of DrCheng & that's who looked  at my records &MRI & said get her an out of network referral so we can get her an appt. That's the only type of relief I've had in this entire circus lately is knowing that he saw the need for me to be seen. It  was kinda like a "bright light shining-heavenly host singing 'Aaaaaaahhhhhh'" moment for me... I try to keep some of my silly sense of humor in the midst of tjis chaos :-)  in between my rounds of breaking down & crying....even with the meds my pcp prescribed for my nerves, it really doesn't help that much & she don't want to prescribe any pain meds in fear of masking any symptoms, but I've dealt with nonstop pain for over 18 yrs, so that's nothing new to me....not to mention sunday would've been my niece's 19th bday, we lost her in a car accident dec 30 2008 when she was only 15. She was with 2 other friends, she was in the backseat, the girl that was driving (police reporys say 80-100+) & texting, taking pics of her speedometer & sending pics bragging about how fat she was going, she topped a small hill, went airborne & hit an oncoming truck head on & it literally tore the car in half....my niece & the other girl in the passenger seat were begging her to slow down....the other 2 girls walked away with minor injuries, my niece died instantly from impact of the truck...the girl driving, to this day, hasn't even received a speeding ticket. My daughter was 6 months older  than my niece to the day, they were sooooo close...our family will never be the same.

So I've got other things bringing me down besides my runaround....

Plus I'm wondering if I should continue  working(sewing factory-been off because delivery truck from CA hasn't delivered material in almost 2 weeks)& with finding out about my condition & a nono I've read in several places includes avoid looking down  for extended periods of time....well ummmm...that's what I do for 8 hrs a day at work :-( I'm going to go back out & talk to my pcp after they get  the statement from the group I went 2 where it was confirmed (i had 2 call group & see if they'd faxed statement & of course they didn't,& when I called again, they had sent it to the last group my pcp used to be with years ago &i have them the correct fax #) anyway, I'm going to ask my pcp if that statement saying I do have ACM & need to be seen by someone who can treat me is sufficient enough for me to take a medical leave until further notice. Especially since I don't ned to be looking  down for 8 hrs & pulling & tugging on bundles weighing up to 10 lbs :-(

[linnielou232]

You have every right to be mad.  I also went years before I was persistant enough to know that something was just not right.  I went to many Dr's that sent me to pain clinic's which worked for a while, went through so many injection's trying to deal with the pain.  I do know you will find the right answer's for you, because you are persistant and you have the knowledge that will lead you in the right direction.  As you said.  Keep up with the persistant and finally someone will listen.

[selmaS]

  Take a deep breath....I feel u r overwhelmed and rightly so, but it will make u feel worse.

This has happened to all of us...u r not alone in this journey of Drs not believing in ur symptoms or the evidence in the MRI's..this is y we call this "the royal chiari run around" ...

Drs told me u do not have it, u do have it, u do not, u do, but I can not help u...ugh...it is frustrating and until u go to a Dr that does his own research and treats only chiari and chiari related conditions u will continue to deal with this.

  

[Shelltn]

Ummmm   pushing, not posing lol...my medical transcription editing  & proofing had a flub on that one I guess ;-/