Neurosurgeon let down

[Chloe783]

Hey everyone :0)

The dreaded day came today for my neurosurgeon appointment. He said that Chiari is a symptom free condition and it's something I was born with. He thinks I have something else wrong with me as an 8.8mm hernia would have been present from birth and surgery is only necessary if I had hydrocephalus. He said I didn't have a syrinx, but they only MRI scanned my cervical spine and brain and I have a lot of problems with my legs so I'd appreciate a thoracic and lumbar spine MRi but he said it wasn't needed. He was a lovely man so I don't mean to criticise him, but I really feel that I was brushed off. I started crying and said "so I have to live with head pain, neck pain, loss of feeling in my left hand and tingly feet and legs forever" (that's just the start of my problems) and he said they are nothing to do with chiari. I then asked what the width of the hernia was and he said he didn't know and that the width is irrelevant and only the length matters. I am so confused and feel completely at a loss. I am in the UK and it seems there is far more help and information about this in the USA :0( We are going to get private help in April when I can be put on my hubby to be's medical insurance. That luckily covers conditions you have before you sign up so that's good. Does anyone know of a specialist in Chiari in the UK? I'm willing to travel. I have a very physical job and I asked if I can still lift heavy objects and go on roller coasters as I love them but they hurt my neck and then I'm sick but I haven't been on one since diagnosis. He said I am fine to lift and roller coasters are fine too. Feels so wrong :0( I am really confused by it all. Maybe I am just a wimp after all, but the symptoms feel real to me. Any help muchly appreciated xxx

[Just_Gina_Fair_Banks]

Hey there!  I am formerly from the world of "Heath Information" or "Medical Records," whichever you prefer.  And ICD9 coding/diagnosis is only for insurance billing.  This isn't going to affect what happens with your doctors.  What you need to be concerned about is what he dictates on his reports and what goes to other doctors.  The doctors don't trade information as far as who uses what codes.  If you need something billed specifically for insurance purposes so it's paid for properly, that's where that code comes into play.  Insurances get finicky and he probably knows what gets the job done as far as getting paid, although someone in his office should probably have been able to explain this to you.  

[selmaS]

  Hi...u r welcome : )

No this is not my site, and I am not a Dr...just a person with Chiari like the many here.

I am the community leader....here to help if I can and offer what I do know from my experiences and research I do.

[Harlegal]

so the new neurologist I started seeing put down the icd9 code for migraine yet I have, and have always had, and showed him my previous medical records and told him,  migraine with Aura.  

After speaking to his office girls they said that he stated "migraine is migraine."  I don't like his attitude.  Migraine with Aura is more serious to me and from everything I have read than just migraine.  Any opinions?

[tattooer601]

Sorry for yet another let down... so sorry :-(

[Harlegal]

Oh and yawning!!! I was given a snod remark once in a training session at work because I couldn't stop yawning "Are we boring you?"  If I yawn or sneeze it usually lasts like 20 times.  It just goes on and on.

[Harlegal]

sorry site, not sight.  Still kind of early and have been sick with cold symptoms. :)

[Harlegal]

Selma, is this your sight?  Thank you for the Welcome.  I just saw it.  I am still learning how to navigate on here.  So, I am not very good at it yet.  Are you a Doctor?  and who wrote the article "4 Phases of Migraines"?  I have learned more from you and this sight than I have in all my life of symptoms!!  I have had symptoms since childhood and as I got older they just got weirder and stronger.  I just love the 4 Phases of Migraines!  I get all of those symptoms and have forever.  Especially the strange odors.  I had no idea that was a symptom of a migraine coming on.  I have always got those.  Seems to be like a chemical smell in my nostril.  This sight is just way to amazing!  I was able to find the physicians listed.. so Thank you on that as well!

[selmaS]

  We do have a list of states and cities of Drs that have treated Chiari...however it is not an endorsement for the Drs on the list.....

We do also refrain from saying negative things regarding certain Drs bcuz this is  a public forum.

U can always ask for someone that has been to a Dr to PM u info on the certain one u r interested in,,...there r several reasons, and one is TOS...the other is it is a public forum and a Dr can google their own name and find ur post.

I have found other lists, and many of them had Drs that were retired, or never even heard of Chiari...so, this one is compiled by the members.

We have removed Drs names from the list when we had enuff negative info given on a said Dr....

But it is always good to post a thread...plan on going to this Dr on the list, can neone that has been to this Dr PM me....

It does work, may not be the best solution,,..but that is what we offer.

[Just_Gina_Fair_Banks]

As the first line of defense, then they need to be held accountable to bring light to our need for competent and caring doctors!

[Just_Gina_Fair_Banks]

Hey there...I may be a bit of a "maverick" here, but I hope I can help.  My own path, which I suppose I should get around to posting, has been weird.  Because of what I'm now learning about Chiari, I don't know how much I could have avoided.  To this point I've endured 22 surgeries, 6 of which didn't have anything to do with Chiari.  The rest...well, it's been a hunt for answers that just seem to give me more questions.  As the "saga" has dragged on, I've changed MY approach.  They don't just interview me; I interview them.  I ask questions of the staff, office people, nurses, fellows, PAs.  It's good to see what they say--if they hesitate to give much info, are too robotic.  This is OBVIOUSLY an expanding area of knowledge.  The doctor MUST work with you!  I have even gotten to the point where I'll ask a new doctor if he can work WITH me, give and take, because he doesn't know my body better than me but I need help figuring out what it's doing, and we must work together.  If that's not going to work, then I tell the doc I'm not going to waste their time or mine.  That will usually elicit one of two responses.  They'll tell me they will or won't help me.  The ones that get uptight and give me the "God" complex, they want my money.  The other ones put my fears to rest by letting me know every detail of their plans.  Info should never be difficult to obtain.  That should be a red flag.

I assure you these are usually calm conversations.  Once I had a doctor act very arrogant and stupid, and my normally calm husband yelled at him, but it not only involved me but our unborn child, soooo I had to let him go on that one!  But it's my opinion that the doctors need to be accountable.  When they say they don't know something and just string you along for repeat visits, it's time to start thinking about filing complaints to state medical boards.  It's a lot, but if people like us who have a condition that doesn't have commonly diagnosed symptoms that get us treatment but instead get us antidepressants and antipsychotics

[Harlegal]

Seems to me that it would be very helpful if some website had broken down by geographical areas (city/state) where each person with Chiari could follow and also with that have an area under each city & state of Doctors where we could specifically post if they were helpful or not with Chiari and the Chiarian got out of their appointment what they expected.  I, for one, am sick of spending copays and being treated for everything except for my main condition!

[Just_Gina_Fair_Banks]

Just found you...I know your location!  Our football has taken Class C State 3 years running....our little claim to fame!  Next door to Alma.

[Just_Gina_Fair_Banks]

Ithaca!!  Get out your mitten hand, point to the middle!  If you know where this is, I'm impressed!

[Sexybare]

I am also from mi.....where abouts u from?

[Just_Gina_Fair_Banks]

I wasn't back in here yesterday.  Sorry about that.  I figured that out.  I'll PM you after bit.  Thank you for your help!!  :)

[Just_Gina_Fair_Banks]

I am in Michigan....please tell me more!

[selmaS]

  Hi...have u retried? I sent u another PM...it went thru ok....u just reply and post to the PM I sent u do not need to create a new message....not sure if u saw the way to reply ???

[Chloe783]

Thanks Linda :0) I can do patience :0) I just can't wait to get some help from someone who understands :0) Going to be a fantastic day when that happens!! Xxx

Gins it is disgusting that you've had to put up with all this and to then be laughed at!!! But well done you for carrying on and getting to the bottom of it! We must not give up until we are happy :0) xxx

[linnielou232]

I know the experience of the Chiari run around.  I so looked forward to going to the best faculty around here in MI to find they didn't think I was a Chairi candidate, until I finally found a specialist close to me who listened and explained to me what what going on.  I was very persistant in this journey because I knew it wasn't in my mind, but in my brain.  I had surgery right away.  It is so discouraging to go to a Dr for answers to just be set up for disappointment.  As Selma mentioned there is a Dr. out there for you for answers, but sometimes it takes more persistants and determination from us.  Keep up the good work of getting answers for yourself because it will come to you.  Patience in the key to Chairi.
Linda :)

[Just_Gina_Fair_Banks]

I have tried to respond to your PM.  It tells me that I cannot.  Help?

[selmaS]

  I am meaning to save spending ur time and co-pay for a Dr that may lead u astray....

Not sure u know what I mean so I will PM u : )

[Just_Gina_Fair_Banks]

Just glad to have found "home."  Island of Misfit Toys kind of...I'm not going to mention names unless they've helped me. But I will take my results to them to let them know what they missed....we can't make progress for others if we don't let them know what they missed.  It's their own arrogance if they don't continue to learn, but if we don't help spread it, then we've made the same mistake!  

So...another soldier in the Chiari army!  Yahoo!   I just can't wait til I have more to share!  Thanks for your help!

[selmaS]

  Yeah, those dang florescent lights in stores r murder on us and the Gov has outlawed the incandescent bulbs...I think we should be able to choose....especially since they affect us.

DO ask others about their experience.....as bad comments on certain Drs can not be done on the public boards.....

If u want u can PM me....(private message)

Again thanks for sharing and glad to have u join us, but sorry for what brought u.

[Just_Gina_Fair_Banks]

Thank you for the welcome!  I thought I was going to sit and be and observer...I should have known better.  I've never lived my life on the sidelines, probably until the last 7 years.  The stuff I've been through...and now this past couple weeks, learning what I've learned...had I known all this at the beginning of this past 7 years, I think I may have avoided a few procedures, perhaps avoided a NICU stay with my last son...but what's done is done.  Gotta go forward, and to know the things that I'm dealing with are tell-tale signs excites me!  Doesn't make it any more pleasant, but sure does give me HOPE!!  

Of course, the headaches, which go from mild to leveling me, but never go away.  I can remember my first debilitating headaches as a young girl when I was sick, crying on the couch telling mom my head hurt, rocking back and forth.  Even then, I knew I had to calm myself to get it to stop.  Medicine didn't help.  They'd come and go as I got older, but not until I was pregnant with my fourth child did life go down hill and fast and it's been going down that hill ever since.  I've looked into treatments for the headache.  I've had injections multiple times.  I got an MRI to send to to a doc in PA to see if I'd be a candidate for a procedure for occipital neuralgia, which is what I thought I was dealing with and got turned down with no explanation.  I got the report and found the Chiari malformation dx at 6 mm.  So, I looked it up and found the typical "incidental" description and "no symptoms."  I've had a lot of problem with my eyes, even went to the eye doctor.  They suggested bifocals.  I'm 41.  I didn't get the glasses yet.  I had Lasik a couple years ago, and I wasn't ready to jump back into glasses already!  Ugh!  But I noticed that I had more problem in particular light.  Going into stores was horrid!  I had to go fast and take short trips because the headache would just go bonkers being in there...especially behind the eyes!  To complicate things, the past couple years have been tough on our family as we live in Michigan and my husband is in the automotive industry.  My husband has moved jobs a little more frequently than we'd like, and that has also changed our address a few times, even moving us out of state.  We went from Michigan to South Carolina to Ohio to Michigan.  Rough!  In all this, I'm noticing that I'm starting to forget stuff.  Stress right?  Well...doesn't seem that cut and dried to to me.  I couldn't even walk across the kitchen and remember what I was going to do when I got to the other side (and we're not talking about mansions here folks!  I didn't have to go that far!)  Oh...I could go on.  

So...a couple weeks ago, I wake up with a horrible headache, not my typical headache.  I get it knocked down a bit and carry on with my day.  Later on, just on my right side, my lips are numb and tingly, my tongue, my head, my arm, and my hand.  My mouth drooped ever so slightly.  So, off to the ER.  They said it was due to migraines.  They kept me for the night "just in case."  It subsided.  I went home the next day, but my lips keep going numb...just on the right.  Not my tongue though.  A little bit of it in my head...tingling...no frank numbness.  Since then, I've been dizzy and had some frank vertigo.  The dizziness hasn't really subsided.  I haven't driven, kind of afraid too.  I remembered the Chiari finding and starting checking things out.  I starting listing my symptoms and I'm actually relieved at what I'm finding.  I think that I have answers for the first time in YEARS!  I did go see my neurologist yesterday, and yes, he laughed at me when I asked about the Chiari malformation and its relevance.  He laughed right out loud.  Pathetic.  I'm waiting for an insurance change, which hopefully won't be much longer, and then I'm looking either at Cincinnati or Milwaukee Chiari Clinics.  I'm not sure that one would be better than the other, and if anyone has opinions, I'd love to hear them.  I guess it would be Dr. Tew vs. Dr. Ferrez.  From what I see, you can't go wrong either way.  I love riding rollercoasters, and last summer I rode them, and I was acutely aware how much it hurt.  But...hindsight is 20/20 right?  The things you do for/with your kids....  So that's my story.  I look forward to telling you all about the shocked look on my neurologist's face after I talk to the Chiari specialists.  *GRIN*