Anyone Else Deal With A "Lovely" Nuerosurgeon?

[JCappiello]

So I requested a copy of my records from my neurosurgeon (who told me to go to TCI).  Basically what he says (not in exact words) is that since my Chiari Malformation is only 8mm and I have such complex symptoms he is unsure of why.  Then he goes on to say since I have a history of anxiety and depression that my symptoms may all be psychological!!!!  How dare he??!!  I am so upset because he NEVER once mentioned that to my face, but made sure to put in in my medical records.  Yes, I do have anxiety/depression, but I am not crazy, nor am I manifesting my own symptoms in my head.  Reading this report really pissed me off!  I am so happy I decided to switch from the neurologist in his building to a different neurologist.

[JCappiello]

These doctors don't seem to be up to date with Chiari at all!  It is not the size that matters its the patients symptoms and whether there are other issues like CSF blockage and so on.. My Chiari is 8.5mm and the NS was basically like ah no big deal and in my medical records documents may be psychological because I have anxiety and depression!! HAHA I have had anxiety and depression since 2007 . . which is well under control with medication... ugh what arrogant people we must deal with... unbelievable..

[JCappiello]

Yes, my neurosurgeon also made the situation of the Chiari Malformation I had to be like it was nothing - even when I explained to him the various symptoms and my decline in life quality.. It was an unbelievable experience - I wouldn't recommend him to my worst enemy..

[JCappiello]

Yes it is definitely very very frustrating... when I read the false report I nearly hit the floor - I kept thinking how dare he write that stuff when he didn't even touch me or see me walk!  I am putting all my hope in getting to TCI to talk to some professionals!

[JCappiello]

Yes I see that many people are having problems with the ignorance of the neurologist and neurosurgeons out there.... I hope to get an appt with TCI in a month or so (keeping my fingers crossed)... I wish you the best of luck with everything

[JCappiello]

Thank you so much for your kind words of encouragement and support.

[Harlegal]

Ok so I am on a roll to find out some answers myself.  Original MRI (Film) in 1999 said I had 5mm.  I have had so many weird neurological issues come and go throughout my life that the average person has not had 1 of these things happen to them.  Follow up MRI with Cleveland Clinic made no mention of the Chiari.  Then another follow up MRI with UH also did not mention the Chiari, but did mention a possible small syrinx.  I called the radiologist at UH that read my MRI.  He did call me back and was very nice.  So Kudos to him for even calling me back!  He said that to him the right tonsil is about 4mm therefore they would not make note of Chiari Malformation unless it was 5mm.  He said it was very conceivable that my films said 5mm but he is seeing it at 4mm.  I am still waiting for the Cleveland Clinic radiology Dept. to advise on why they make no mention of the Chiari.  The UH radiologist did state that he can follow up with a note on the readings that the tonsil is seen herniated at 4mm.  I said I would appreciate that.  I think these places are being ultraconservative on giving out any type of diagnosis.  From all I have read and studied.  Syrinx is more likely with those that have Chiari Malformation.  If previous MRI says 5 mm and UH radiologist sees a possible syrinx and Chiari (although debated at what level) to me Chiari should be noted on the report.  

[tattooer601]

Its ruff..
My first NS told me I had s syst on my brain I was born with and he saw no need to worry...
  3 days later I was diagnosed with Chiari, Ddd, rupture of 5-6 with stenodis ......the difference in a ns that cares

[AshtonL]

I had the same problem with the second neurosurgeon I seen. The MRI report clearly stated that I had a 10mm herniation but the neurosurgeon only looked at my actual MRI and said that he could barely see a herniation at all and he wouldn't even consider it a Chiari Malformation. I was convinced that he was right until I started having all of the symptoms of Chiari. I now have an appointment with another neurosurgeon that will hopefully be more helpful than the last one.

[cynderski]

OMG, just read your post and it was exactly like my situation. The neurologist I initially saw (2 years ago) when first diagnosed with Chiari also put all normal assessment findings on my visits with him. Leading to my denial for long term disability. During my appointments he sat across the room in a chair and talked to me for 5 minutes and never put a finger on me.
When I called his office to discuss his "normal findings" when he never touched me, he never called back and I looked for another doctor. Thank God I found a competent NS to take care of me but I am still fuming about him!
Cindy

[Kris808]

I spoke with a NS once that was arrogant and basically told me he felt I hadn't suffered enough and I should "learn to live with it."  That was 4 years ago.  At the time, his attitude caused me to not want to speak with another surgeon.  Since then, I've tried educating myself a little more on Chiari, concentrated on trying to take care of other health issues, and 'put my neuro probs in the hands of my NL'.
  The past year (8 months or so) has been VERY difficult! Last summer I was feeling SO HORRIBLE I couldn't even make it in to see NL ---  I've tried to 'just ride it out'.  Fall came & I couldn't take it any more & have had multiple appts -- not just NL but pcp, eye doc, ENT, tons of blood tests and mri's, a visit to the ER, MORE MEDS (ggrrr!) and I'm sure the list goes on.
  I finally realize the advice of fellow Chiarians and am taking MY healthcare into MY OWN hands!!  I discovered the NL I've relied on has seen 7 other chiari patients in his 30+ yeas of practice!  That's when I knew it was time.  I now have an appt with a chiari specialist NS in 3 weeks.  Will need to drive about 2 1/2 - 3 hours but I've got to try to make it, I really need a doc who knows just a little more than me when it comes to the chiari!!
  Sorry to go on, really; I just wanted to let you know you're not alone in the ARROGANT NS department!!

Take care,
Kris

[linnielou232]

So sorry to see you had to read about all that which shouldn't of been put into your report.  I had a similair experience a couple times through all of this asking me more or less if I needed someone to talk to.  I cam straight out and said NO this is caused from something out.  I have a blessed life and I'm not crazy.  You will find someone out there for you that will listen.  I was blessed with a very understanding NS and now he is helping me through the process of SS.  I just received my slip the Dr had to make out for my hearing and he states everything in there I think that will help my case.  We will see.  I also went to a pain clinic and they thought I was just there for the drugs and I never took a pill in my life before all of this.  I highly suggest to people to have a health partner so they can vouche for you.  I had my DD with me on this day and I was crying with pain and she got angree and told this guy right off.  So having someone by your side to help listen and understands helped me in my journey.  Hope this helps you.  Also as for any counseling we need.  We have each other right here who understands, so what that Dr stated in his letter I would throw that away and not think about it again.  We are here for you.
Many blessing and smiles sent to you today.
Linda :)

[JCappiello]

OK. Thank u

[selmaS]

There should be info in ur local phone books or contact ur state rep to see the best way to report him.

[JCappiello]

No definitely can not send that to TCI.  How would I go about making a report to the medical board because this guy really needs to stop making false reports that could cause people not to been seen by specialist or possibly cause them to be denied SSD.

[selmaS]

  Then do not send that to TCI....leave it out,...what a jerk...oh and report him to the medical board and tell them just what u said here....he needs to know from his peers he can not do this.

[JCappiello]

I also was already sent to a phychiatrist in July of 2012, who basically told me - yes you have anxiety and depression, but you are medicated and seem to have no other problems.  I went about 10 times and she basically said there is no need to even see me anymore! So that was that.  This neurosurgeon aking me think I am crazy when yesterday I was diagnosed with POTS which has a myraid of symptoms.  I wish I could call the neuroseurgon and tell him that I am not psychotic and was just diagnosed with POTS which cause many of my "made up symptoms". I was referred to him by my neurologist - it is not like a just went on my own, which makes it even worse because I feel he is not only doubting me, but also the severity of which my neurologists feels about my condition.

Another thing I failed to mention is that in his report he said I have a steady gait, normal reflexes, normal eye movement and so on BUT he never even gave me a neurological workup - never tested my reflexes, gait, eyes or anything! I sat on a chair he talked to me and then he left the room!  So he basically lied on my records as well!

[selmaS]

  Hi, that is the problem with getting our records we read them...but keep in mind, he has no idea how to help u bcuz he has no idea how Chiari can affect us, and those  that do can read btwn the lines and figure out what is going on, and many times refer to the MRI's and not the reports....

Long b4 I ever got a DX I was sent to a shrink...in fact I was in High school....they all want to believe we have anxiety and nothing more, but it is the Chiari that causes the anxiety...ugh...such a vicious and crazy cycle...but once u get to the right Drs they will be able to help u figure it all out.