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

[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.