Helpless in Louisiana

[Rahe28]

Hello !  I am 27 and a mother to 3 beautiful and amazing young children ages 7,4, and 3. I was diagnosed with CMI 2 years ago. I had been having terrible daily all day migraines that would hurt so bad that I was unable to take care of my children, my doctor finally did an MRI that revealed the Chiari and as she told me the finding continued to look it up on the internet and dismiss me from her practice because she said, I have no clue what this is. After seeing another doctor, I was assured it was really no big deal. I continued to have the horendous headaches and progressively stared to hurt worse and worse....when unable to control the pain or headaches, my doctor reffered me to a pain management specialist. He then proceeded ( knowing of the chiari) to diagnose me with fibromyalgia and migraines along with some serious back problems. Trusting that if the doctor knew of the Chiari and still diagnosed me with these things that it must once again not be the cause of my everday problems. I would always ask and still do to this day...could the Chiari be causing this. 2 years ago, my herniation was 6mm. so after researching on the internet, with no proof of synrix at only a 6mm. i guessed it was not the cause and continued with my pain management specialist. In may of 2011 I had some type of episode that appeared to ba a seizure, but without the flailing as they call it...in and out of conciousness and all together happened 3 seperate times within an hour or two. When it stopped and I came to, I was 2 years in the past. In my mind my children were still small babies, my mother was still alive, and my husband and I had just celebrated our 5th anniversary, only to find out that we had just two days before celebrated our 7th anniversary. My husband took me immediately to the hospital where they proceeded to admit me and run every test under the sun on me, including an MRI, and since I had 2 years of memory gone, i didnt think to tell them of the chiari because I dint "know" it existed. So they came in to tell me that they found a mild case, but that this had nothing to do with it...and that there was no evedince of anything else going on. I had a medical card that stated to medications I was on, includng Savella for the "fibromyalgia" .After being dismissed by the neurologist and being told that 2 years of memory loss was not the problem, he procedded to tell me that I need a neuro follow up in 6 mo. and restricted my driving privlidges and working until further notice.  I came home home and immediately starting researching the chiari ( whice I had apparently already done) to find out that Savella is not a medication I should have been on with Chiari. 2 months ago, I realized I never saw a report of the MRI they had done( now remembering everything, well other than what I forgot that I dont remember..lol). I went and got a report to find that the CHIARI finding were now 1.2cm or 12mm which officially freaked me out because i had never read anything that suggested that the herniation would grow! Now, 2 months later I am unable to find a doctor that even knows of it. My symptoms have gone from annoying horrible headaches to life altering misery just about. I am soooooo tired all of the time, severe neck and back pain...headaches of course, I am constantly dropping and breaking things, or just flat out falling for no reason. If I lay down at night, or anythime...i cant breathe because my throat closes up. I am always dizzy, my ears ring all the time, I constantly have tingling and feel as though something is crawling on me and at times it hurts to even wear clothes....etc. I have so far NEVER been treated for Chiari. Most of my friends and family know that I am struggling but continue to look at me like I'm fine....but I am now here close to fine, and I know it is hard to see a problem, that isnt visible, but I am sooooo tired of feeling soooooooooo bad. I want to be able to play with my kids and go to the park, and clean m,y home wthout hurting evry step of it, without breaking everything I touch. Im even scared to carry my baby girl who is 3 because I dont want to drop her. I am just lost, I dont know where else to look for a doctor .... and I have medicaid, which many dont accept. Has anyone ever had these types of occurrences...problems with doctors...etc. Anything would be helpful at this point.

Yours Truely,
Sheila Rahe (RAY) in Nola

[selmaS]

  Mel I can not remember.....lol...dang Chiari....Tew is a good Dr to give a go.......above she is referring to a Dr E....so doubt it was....????

[Rylanesmom]

Sheila went to a peds NS...Selma was it Tew?

[selmaS]

  Hi and  welcome to the Chiari forum.

When were u DX'd with Chiari?...What testing have u had so far?

We do have a list of Drs, however it may not have a Dr listed in an area close to u, many of us do have to travel...use the list to research Drs as it is not a referral nor an endorsement.....

See the health Pages -http://www.medhelp.org/health_pages/list?cid=186

[ccxcrunr]

Also in New Orleans and in search of a specialist? Had bad luck at Tulane and so far good visit at Oschner with Dr. Ware but would like a third opinion. Thanks.

[Larhaley]

Curious to know what Dr. did you find to take care of you in NOLA? Would you share?

[Rylanesmom]

Sheila this old thread popped up and scared me to death thinking you were doing really bad again!  I hope you are doing okay:)

CCChiari did they try any treatments for PTC?  What other testing has been done?

[selmaS]

  Hi and welcome to the Chiari forum.

  With PTC u need to see if u have a syrinx that formed as well....since it may have caused the chiari to herniate u need to find out if the chiari is acquired or congenital and which came first....

The fact u have "paralyzing moments" I would encourage u to have more testing done to see just how ur Chiari and PTC is affecting u and ur  overall Health.

  We do have a list of drs, as u will want a specalist...not all on this list may be true chiari specialists, but a member here was treated by the dr and liked them...so u have to educate urself and research the Drs, the list just gives u a starting point.

I hope u do continue to post here and keep us current with ur Dr search...know u r not alone in all of this  : )

[CCChiari]

Hi my name is Cabrina Coltonim 29 years old  . I am a wife and and mom to one little girl age 6 . This is my first time ever speaking to another person with Chiair . I was told I had this about a year ago I was also told I have pseudo tumor Cerebri.I have always felt something was not right when I was 14 really bad headaches and fall all time , hands lock ect but it wasn't until last year I had what the doctor beleive to be a TIA.( mild stroke) I found out after test after test docto after doctor I had Chiari and pseudo tumur Cerebri . I was so nervous I had never heard of such a thing............ I started to have paralyzing moments   I seem to have a range of symptoms I'm still working as a hair stylist altought it's hard at times. I've shorten my load but sometimes wonder if I should just stop all together but that will be hard for me.Im not sure what's my next step I stop going to the doctor because I felt they didn't understand and now I don't know what my next move will be. I'm just trusting God to help help come up with a decision . I'm just thankful to have found this site . I'll be keeping in touch .

[Rahe28]

TY for the warm welcome. You have all been so kind. I told my husband about this forum, and I think he was relieved  to see that I no longer felt that this was no big deal and that I was alone. My daughter is 3 1/2 and she weighs 21 lbs, lol she is a little tiny might I should say. I try not to pick her up often, only when neccessary. All of my children really have a good understanding at their young ages, that when Mommy doesnt feel good, they have to be extra good and help :)
Slowly over the course of the 6 months, my memory has returned, I think I remember everything. My dad and hubby always pick on me and ask If I remember what I forgot..LOL !! Sometimes there will be an ah-ha moment that I found I hadnt recovered until something triggered it and I'm like ...oh yeah !  I'm so sorry to hear that so many of you had to wait so long for a dx. My mother passed away in 09, about 3 months before I found that I had Chiari and I tell you, they never did figure out what was wrong, and reading so much of your stories I cant help but wonder if she had Chiari. ALL of her symptons fit so well.
I will definitely let you all know about teh reasoning for the Robitussin, one of those memory issues, b/c I sure cant remember ...alll I know is it works. Hoping that this day finds you all feeling well, I am sooooo very glad to be a part of this new family. Its great to know that there are others that feel like I do and truely understand !

Sheila

[linnielou232]

Welcome to our Chirian family.  It sound's like you have had some serious issue's.  I feel your pain.  I can't inmagine going through this with having little ones at home.  You mentioned your afraid to pick up your 3 yr old because of drop attacks.  I wouldn't pick her up.  Have her crawl up on your lap.  She has to be over 15-20 pounds and I suggest not lifting anything heavy because it can also cause headaches.  My heart goes out to you. I am like Selma I didn't find out I had Chairi until I was 47 and had sugery at 48 after going through 3 different dr's until I found one I could feel comfortable with.  I am so happy you have found this forum.  We all can relate to what you are dealing with.  Just to let you know your not alone.  We all seem to have the memory loss, so for me I might repeat thing's some times, but that's o.k. because no one on here will remember anyway's lol...  That has to be scary not to remember 2 yr's.  Did you ever get that memory back?  You have us all wondering about the Robitus.  Let us know when you find out.   Take care.  Wish you the best.

[Rahe28]

I will have to look and ask my doctor again about the exact reasoning. He told me this about 6 mo ago and it worked, so I never thought more about it. IT's the main ingredient in the robitussin though that helps, can't remember the exacts, but I will ask Dr. E on the 9th for some more specific info, since I cant quite remember. But, it is for the back and neck pain. I thought he was CRAZY, until I got desperate one day for some relief and tried it only to find that something so simple works ! He also recommeneded eposom salt baths as hot as you can stand them twice a week to three times a week to help with headaches, and not that I dont have terrible headaches still but it seems that if I do the epsom bath it does lessen the intesisty of them. Dr. E has all kinds of wierd little tricks that he reccomends. I really thought he was a cook at first...lol.

Sheila

[jiggle93]

Ok Rahe28,
Now you have my attention! I have many disk issues in my C range that include anterior bowing, disc desiccation, bulging, and a torn disc...along with CM1.  i live in constant neck pain, so I am very curious about the Robitussin help........
jiggle93

[selmaS]

  Now u have me curious, how does Robitussin help? Is this for the sinus issues?.....cuz u also mention a hot tub....hmmmm interesting

[Rahe28]

Selma, the flipping a switch analogy makes perfect sense!!! So glad to hear that post op you haven't had any !! That would definitely be considered a success in my book. I also have some bulging disks and a few deterierating disks, so yes...please continue to be careful with those. However, I can tell you that a small dose of robitussin can really help when the back decides to really act up. I thought my doctor was crazy ( this is the pain management specialist i see, whoim I like very much) when he told me to get robitussin cf and get in a hot tub !! However, it really did work ! Just a tip. Hope today finds you feeling well.

Sheila

[selmaS]

  Sheila...I have not had one drop attack post op...which is one way to confirm my surgery was a success : )

The NS said to imagine a drop attack like someone flipping a light switch off and then back on...this is what happens to the signals in the spinal cord they stop and since the signals can not get to the brain ur body drops, and bcuz it goes back on so quickly u may be aware mid fall like I was but it is not enuff to be able to react or respond....

Having the surgery they make more room for the CSF to flow and avoid the obstruction...I do have a bulging disk that can cause this to happen again....and bcuz of that I have to be careful with what I do, and no driving.....but, it has not happened and I will be seeing an orthopedist to see about the disk.....

Ask as many questions this is y we r all here....no worries : )

[Rahe28]

Yes, I do bruise easily and I always have. My mom until the day she died said it was a good thing I was a good dancer, because I sure can't walk without falling and running into walls (pure clumsiness). Oh, that last one sounds awfully painful.

I have always thought of them as two seperate problems, but the last doctor reffered to them both as "drop attacks". Not that I was pleased with anything he did or said, so I don't count that for much.

When I do hit the ground in the drop attack...most of the time I am already on the ground before I have ralized that I am falling. A few times, I realized and could never call for help or brace myself in any way. As though I was just frozen. I am always nauseated afterwards. SInce your surgery, have the falls decreased, or do you still experience them? SOrry to ask so many questions...I have never ran into anyone that has dealt with these spells also though, and I must say I'm sorry that you deal with them, but it is good to know that I'm not alone.

Sheila

[selmaS]

  It sounds like u r having 2 diff types going on...passing out and drop attacks...with a drop attack u will just fall with no warning, in fact u may go out for a few seconds and come back mid fall but not be able to react...this is how my NS said a drop attack happens....

Getting all hot and the ears ringing sounds more like u passed out...due to pressure or something else going on....

  Do u bruise easily?,, get checked for EDS if u do....

   My drop attacks were always with out warning,..,..and I would come back mid fall and wonder y I was falling, I could not react, or respond to neone asking questions...I felt nauseated afterward....that last one resulting in a bad sprain and torn meniscus...

I do have lots of bruises all over too....

[Rahe28]

WOW...that is a long time to wait for a dx. I'm glad to hear that you finally found out though. Normally the drop attacks start with me getting extremely hot and breaking out into a cold sweat and within seconds of that happen my ears start ringing really loudly and then BOOM...everything is black and I normally wake up with people all over. They happen other ways sometimes too though, like I may be walking up my hallway to the living room and I just collapse to the floor. With these I dont normally black out though...I just fall, for "no reason". I mean I could feel just fine and then out of the clear blue be on the ground. I live with bruises and scrapes. THe doctors in the ER even asked me if my husband abused me. I assured them that I really just fall alot. What about yours? Anything similiar?

Sheila

[selmaS]

  I did have drop attacks when I was younger, but nothing was ever done about them...but one I had in May of '07 left me with injuries that required surgery...and my knee surgeon suspected lupus and sent me for more testing, the testing revealed my chiari dx....at age 48....much too long to get a dx when u started with symptoms as a child.

Weird, but my BP was always low, and I was told if I became symptomatic to let my drs know, they just did not tell me what they meant.....

Since I have had surgery my BP seems closer to normal ranges but still on the low side just not as low as they had been.

  Can u describe ur drop attack..what happens to u?

"selma"

[Rahe28]

I wanted to thank you for responding so quickly to my post. Also, ty for the direction in what tests to ask for. I am going to see a regular neurolgist in a few weeks, he says that he has some experience with Chiari, so at least maybe this is a starting point, maybe he can at least help refer me to a specialist. I happened to notice in one of your threads that you experinced "drop attacks" .... I have always dealt with them from the age of 5, the doctors always told me and my mom that it was due to me always have severe low blood pressure....now that seems a bit modest. Did your drop attacks get worse with age? Mine did, and are continually getting worse !

I am very glad to have found you all. It really is hard to got through so much that people around you just don't understand.

Sheila

[selmaS]

  Hi and welcome to the Chiari forum.

U r not the first to get this mis information that chiari can  not be the issue, then sent to several other drs trying to figure out what it could be.....we have dubbed this "the royal chiari run around"....

U want a true chiari specialist., u want all ur MRI's and records and reports....and FYI u may have to travel.

We have a list of Drs that the members have compiled of drs they went to and liked...not all fit the true chiari specialist title, but they have successfully treated chiari, and it is for u to research , interview and decide which one is best for u- the list is not meant as a referral.:
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Do not let the fact that ur tonsils grew freak u out...it can and does happen...the length is also not as important as  ur symptoms and if u have a CSF obstruction....

Do make sure they check u for related issues like a syrinx...in areas of the spine  in addition to the cervical spine...the thoracic and lumbar should be checked....and they can rule out tethered cord, sleep apnea, ICP, ehlers-danlos....among the few....

  Also have ur blood panels done for vit D, B12, magnesium and potassium....these r important in how u feel and how u heal!!

   We r glad to welcome u, but not happy for the reasons u r here.

         "selma"