Neurologist Refuses to Treat

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I was diagnosed with Chiari Malformation almost 2 years ago. I am very symptomatic - migraines, constant pressure in my head that changes with the weather, lethargy, weakness in my muscles, tingling in my extremities, memory issues, pain in my neck and upper shoulders and difficulty sleeping. I finally got to a neurologist about a year ago and they said that the it's borderline and my symptoms aren't from Chiari, it's just migraines and put me on Tpimax and Cymbalta. They told me to have my eyes checked and see a shrink, that I may have PTSD from years of domestic abuse. I did both and both disagreed. I have done research and everything comes back to Chiari being the issue, but no one will listen to me. They say "yes you have it but not enough for the symptoms. It may be chronic fatigue syndrome or fibromyalga." So what do I do? 

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  • Posted

    Oh love again I am hearing the same story of people not being believed that you have chiari and the professional again refuses to see the symptoms are chiari related! Everything you explain is what I feel and I have been lucky and found a ns who recognised straight away that I had chiari and had decompression surgery in November last year. I still suffer with many if the same symptoms which is disappointing and frustrating but assured i won't get any worse. My advise is get a 2nd opinion. My 1st ns who I paid privately for didn't believe me but we have to be strong and get the right Dr to give the right diagnosis. Good luck hunni all us with chiari malformation know what your going through pain wise and poor medical advise

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  • Posted

    Ahhhhh, the worst.  I know the feeling.  I was symptomatic for years and, of course, Chiari is a mystery in the United States.  I was literally tossed around by 5 doctors who didn't seem to give a sh*t, which is sad.  And then they just say "it's your anxiety, you're just stressed out, you need to relax, you have a panic disorder" blah blah blah.  I HAVE a panic disorder because my brain is falling out of my head!!!! I honestly don't understand how some doctors are doctors.  Nonetheless, my advice to you is to find a new neurologist that'll take you seriously.  Believe me.  I've seen a total of 2 neurologists, 2 neurosurgeons and 1 psychiatrist.  Only a few of them really cared about my symptoms.  If anything, call your insurance company and ask them which neurologist takes your insurance and stuff.  I found my neuro doctors by asking other doctors who they like as PEOPLE, not as doctors lol.  Chiari sucks and not enough people know about it.  If you were diagnosed with it and you also have psychiatric disorders it makes everything 10x more difficult.  You can do it.  Find someone else if this guy/lady isn't working for you or taking you seriously.  I'm 11 days post-op from my chiari; I'm glad it's done because I found someone who took me seriously! Find a new doctor. 

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  • Posted

    oh im sorry but i have all of the same symptoms....i had a Craniostomy on Jan 17 and i do feel better....i have researched this matter in depth and I also have a brilliant Dr Plitcher that is experienced in the matter...you need to decompression surgery to stop any further brain damage that is from the constant  pressure and spinal fluid sitting on your brain.....by the time i had my surgery i had no cfs moment...i was in constant pain and fatigue....i still hae a lot of balance issues but my Dr instructed me to study the tonsil area to know your symptoms..and also the pressure affects your short toerm memory which is not recoverable....if you need info for a trained surgeon let me know...i am in rochester ny...and Dr Pilter is thru the University of Rochester...
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    • Posted

      The information for your doctor would be great! There's nobody in Maine that handles this and I contacted a place in New Hampshire and they never got back to me. Boston was my next step but I don't know where to start.

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  • Posted

    Thank you both. That is what I'm running into. The first neurologist I saw gave me 8 different medications for 4 different types of migraines and said I probably had Lyme disease so I asked for a second opinion, which got me to the next neurologist. That was the one who, again said, yes chiari, but nope, it's migraines. So my primary care doctor referred me out of state to Boston and we waited only to find out that doctor wasn't taking any new patients, so he tried again in state with no luck. So my primary care physician has been trying to do everything for me and he's been great, but he's not a neurosurgeon or a neurologist. So now I am trying to find a Chiari specialist/neurosurgeon who will see me.

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    • Posted

      If you join some of the chiari support groups in usa I have noticed that people have good knowledge of chiari drs and are able to recommend Drs to see. It's certainly worth a try. Chiari support and encouragement is a usa site that I use to be part of might be worth a try x

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  • Posted

    Google the symptom or Fibromyalgia and Chiari malformation, whereever you are from if you are in the UK, go NHS and Ann Conroy rust - or Mayo clinic if you are in the US. Write it down all the symptom and show it to the doctor when ever you see them again, ask them to referred you to Neurosurgeon, tell them that the medication given does not work your symptom getting worse, ask them to take responsibility of your health if it is getting worse..ask them to sign confirm it that if something goes wrong with you they will take responsibility of that..be asertive but ask their help, dont forget majority of health care professional have a little knowledge of your condition so you need to increase of level awareness by printing it out what Chiari is..then you really want to get surgery as sson as possible..please this is not disease this is defect just like knee replacement,...etc, its can only be helped by operation, GOOD LUCK
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