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Needing Advise

Posted , 6 users are following.

keli23241
keli23241

Hello, i am a 22 year old female diagnosed in January 2016 with a 6mm Chiari Malformation 1. At that point in time i was being seen for syncope and what my dr thought was absent seizures. My eeg was clear (no seizures). I have also had anxiety and depression and back pain sense i was 13. I didnt often have headaches, but now they are getting more amd more frequent with back and neck pain, stomach problems, forgetting a lot, painful joints, problems falling asleep, but wanting to sleep constantly,sensitivity to certain lighting, tingling in feetfeet, among other problems. I went to see my neurologist this week and he blamed all of my symptoms on caffeine and the fact that im a smoker, but put me on activity restrictions. My cousin was diagnosed with Chiari at age 11 and had surgery,i have discussed with her a lot of my symptoms and most are like hers to a T. He made it sound like the only time you need the surgery is when you have paralysis. Am i over reacting because of the constant pain i am in or is he not taking me as seriously as he should?

0 likes, 14 replies

14 Replies

  • Linleel
    Linleel keli23241

    Posted

    GEt a second opinion!!! Doctors who blow off symptoms on non-Chiari disorders are stupid! So many doctors don't know much about Chiari and blame symptoms on other things. Of course, smoking doesn't help you overall, nor does caffeine. I got diagnosed last Nov and had surgery June 2. My philosophy is if you have a definite Chiari diagnosis (which you have) you can have it checked to see if there is CSF Flow blockage and if there is, have the decompression surgery!!!! Chiari can run in families also!! Doctors spend way too much time on "other tests" to explain symptoms and they actually have no idea who you are from visit to visit until they read your chart!! Get a referral from your GP for a different NEUROSURGEON and skip the Neurologist. I get all my painkillers and other drugs from my GP. Get a CINE MRI to check for CSF FLOW blockage!! My NS told me I didn't have "typical Chiari" symptoms- then got the CINE MRI back which showed complete CSF flow blockage- -and THAT is what causes the symptoms!!!! Typical symptoms: exhaustion, falling asleep during the day, memory problems, balance problems, disorientation, headaches, blurred vision, problems with speaking, sensitivity to bright lights, sleep apnea.

    • keli23241
      keli23241 Linleel

      Posted

      Thank you! I was hoping i wasnt seeming over concerned.
    • keli23241
      keli23241 Linleel

      Posted

      My problem is this is the second neurologist to blow off my symptoms. Today i have had a headache all day and i feel like my brain is literally trying to squeeze threw my skull
    • Linleel
      Linleel keli23241

      Posted

      Skip the neurologist. Get an appt. with a neurosurgeon at a large facility, preferably one connected to a university. Ask them to do a CINE MRI to determine blockage of CSF flow. (You may be able to get your GP to order this up). Neurologists have no understanding of Chiari. Many people don't understand it because there is no external visible evidence.

      Maybe set up appts with several different doctors until u get one who understands. Bug the heck out of them until u get an appt- call every couple of hours!! After you finally get in to see a doctor who understands Chiari, write a review of the ones who blew you off in Yelp so other people can avoid them!!! I saw a NeuroOpthalmologist to check my eyes. He said my symptoms were "all in my head." Since the tests he did were the same as ones my eye doctor and a balance doctor had already done on me, I knew for a fact that I did not have 20/20 vision and he was a complete ass!! I wrote two YELP reviews of his lousy behavior!!!

      I totally understand you!! I do not miss the Zombie Brain Stupor or the Brain Stuffed Head effect! Where it feels like a sinus infection all over your head. Mine went away after surgery!!

      This is one disorder where you can safely say "it's all in my head!"

    • Jenaa
      Jenaa keli23241

      Posted

      Are you in the UK or US?

      And erm I was blown off by every department in the hospital for 4 years so I feel your struggle. I had one neurologist tell me not to come back because the department cannot offer me anything 😂

    • Linleel
      Linleel Jenaa

      Posted

      They don't know what they are talking about!! Skip the Neurologist and get appt with NS!

  • claireabella
    claireabella keli23241

    Posted

    Hearing this makes my blood boil, hi I'm Claire I've suffered for the last 3 years unmediated with alot of ur symptoms. Arguing with doctors that it's not stress or the colour top I'm wearing on a Thursday that's causing the pain.

    4 doctors later I was finally agreed with it was chiari malformation type 2 😭 I had decompression surgery April that didn't work so went straight back for more decompression with duraplasty surgery. You don't have surgery at the stage of paralysis I suppose it all depends on what shows on ur xrays because thats how it's detected a head scan. I'm surprised ur neurologist hasn't requested one. Don't give up you know your own body. Keep going back to ur GP n ask to be referred for a head scan. There's just so little known about chiari. It's disgusting when you go to appointments n you know more than the docs arm yourself with the info. Good luck 🍀 let me know how you get on

  • keli23241
    keli23241

    Posted

    Thank you all! I am from the US, central Illinois. Im calling my GP today to see if he will refure me to a NS. Its nice knowing im not just over thinking it all because of the pain. I just wish neurologist were made more aware of this, and if they dont know about it then sent you to a NS.
    • sherri40334
      sherri40334 keli23241

      Posted

      Keli I am also from Mid central IL!! I am curious where you live? I was diagnosed in July with 7mm herniation. I was first diagnosed in 1994 but have been asymptomatic until about 4 years ago. My headaches and neck pain are so severe that it would leave me in tears. I had my MRI at Advanced MRI in Bloomington and I told them to look for a Chiari and they found it immedoately. I went to my GPA and he wanted to refer me to a neurologist in Peoria and I told him no that I did A LOT of research and I am now seeing Dr. David Frim, neurosurgeon at the University of IL Chicago. He is one of the top Chiari doctors and I highly recommend him!! Best of luck to you....it's quite a journey.

    • claireabella
      claireabella keli23241

      Posted

      What works is doing ur research, docs don't like it but it isn't there body or aloof pain their being put through constantly.

      Get on Google and print off everything to do with Chiari Malformation type 1 & 2 answer take it to every single appointment u have along with a list of all the symptoms. It's so rare n unheard of their quick to brush it off because they know nothing about it. Good luck from the UK 🇬🇧

    • keli23241
      keli23241 sherri40334

      Posted

      sorry it took so long for me to get back on, my 1 year old has been sick but he is all better now. I am from vandalia
  • kallie1014
    kallie1014 keli23241

    Posted

    Your doctor is mistaken. You need surgery if there are significant symptoms and if the herniation is blocking Cerebral Spinal Fluid. Get a second opinion. 
  • keli23241
    keli23241

    Posted

    Today my head hurts so bad i feel like i could shoot fire out of my eye. I literally feel like my brain is trying to seep out of cracks in my skull. It hurts all the way down my neck and into my shoulders and down to my lower back. I swear sunlight is my worst enemy no matter how much cloud coverage we have or if im wearing my sun glasses. Im starying to think it never gets easier.
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