Chiari Online Support Group

Newly diagnosed December 6 2019

My neurologist is not helping me with any explanations to my questions. His nurses called me didn’t tell me anything other than I need to see a neurosurgeon I had go to my patient chart online and Google what I had. Chiari Malformation Type 1. I have severe headaches on my right side of my head 24/7 I was only given baclofen 10 milligrams. Nothing for pain. I cry all the time. I’m dizzy and I don’t sleep but maybe 2 hours a night. I have night sweats every hour on the hour. They are worse at night. I have ringing and roaring in my head. I hurt from head to toe. My neck is stiff and my shoulders hurt. I’m a hot mess, jacked up from the floor up. I’m scared half to death. Is this what my life has come to? I can go on and on with more symptoms but I’m just glad I have found a support group. I don’t want to give up .

Mia, don’t give up. Your neurologist seems to be suggesting that surgery for decompression is probably needed. Based on the severity of your symptoms, I would say this will probably be the suggestion of the neurosurgeon as well. The decompression should help many of your symptoms, but it could be months after the surgery before you know exactly what all is relieved. In the interim, you may need something to help with your sleep and anxiety. Your brain is already irritated. sleep deprivation and increased anxiety and just terrible culprits adding to an already desperate situation. I hope your neurosurgeon visit is soon and goes well.

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Mia, I’m newly diagnosed too & afraid. I’m grateful to have an answer but I have lots of questions. You are not alone. I’m so grateful that this group popped up in my search!

Thank you dragonfly for your encouragement I appreciate it. Have you had the surgery yet? I am scared to have it.

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I haven’t even been able to find a doc to speak with me about it. I don’t know anything other than I have low lying cerebellar tonsils at 5mm. I faxed medical records to a neurosurgeon today in Hope’s they’ll schedule me to talk! How far along are you with your diagnosis?

Don’t feel bad my neurologist didn’t even tell me anything he just left it on my patient portal to access online I had to Google what Chiari Malformation was. His nurse called and said I needed surgery I asked her why and for what and she said she couldn’t tell me. I have been referred to a neurosurgeon over a week a go. I called them the day I was diagnosed which was December 6 2019. I still haven’t heard anything. Meanwhile while I sit and suffer. I have horrible headaches and night sweats along with a boat load of other issues. I wish you well and hope they don’t leave you hanging.

That’s awful & sounds almost like the way I found out. My PCP messaged me through our patient portal & told me to speak with a neurologist about it. I’ve been getting info from google search & YouTube & I’m grateful to even have that!
My previous neurosurgeon treats CM but when I went to him back in Sept, he told me nothing was wrong with me & referred me to PT & Otarynology. He wouldn’t talk with me about symptoms except to say it wasn’t my neck, never even looked at my brain or spine MRIs with me. Needless to say, I don’t want him anywhere near me now!
Please know that I’m here for you if you ever just need someone to listen. I don’t know much about our condition right now, but I do know how to be there for someone else. :two_hearts:

Hey, Mia…! Yeah. Don’t give up. The fact that you have actually been diagnosed with Chiaris is half the battle! (I went misdiagnosed for 10 agonizing years in Idaho - and I was months from dying, I’m sure) Chiaris is becoming more well known, but it’s a crap-shoot whether or not neurologists know anything about it or not. For me, the decompression surgery was a total game changer. I recovered 75% - still have some re-occurring symptoms - but that is WAY better than the total vegetable and brain dead zombie I was prior to the surgery. All your symptoms I had 24/7 as well - and more. Your brain stem and spinal cord are getting pinched off with Chiaris. Since the Central Nervous System (CNS) affects the entire body, your symptoms are going to show up everywhere. However, I highly recommend Googling a Chiari specialist. There are places and doctors that deal with nothing but Chiaris. It is so well worth it. My neurosurgeon in NC (who is now retired. Sadly) did nothing but Chiari decompression surgery. Post-surgery recovery took years. Little by little, automatic brain stem functions returned. Some never will, but I’m so happy about what I DID get back. About medication, I found that nothing worked prior to the decompression surgery because the cerebral-spinal fluid flow was being blocked with the Chiari pinch. I don’t think medications were even getting to my brain! (Prior to surgery, I tried 1,500mg of Gabapentin for the nerve pain - didn’t do a thing. Post-surgery, I couldn’t even handle 10mg w/o being snockered off my feet!) I do hope you continue to research Chiari neurosurgeons and all.

Hi! I also was recently diagnosed, I have been offered surgery, but just not sure! Anyone have an idea what long term success rates look like?? Where I could go to find the info??

Medical journals. Medical libraries associated with universities can have a programme designed to help lay people find what they are looking for. Keep us posted with what you find!

Gabby, I don’t know how to do this, any ideas. Going to Mayo

Phone your closest University that offers programmes for medical doctors, nurses, rehabilitation therapists. The university will have a medical library on campus to service those students. The university that I went to also had staff that was able to assist the public in navigating the medical journal catalogues. Sometimes there are students their offer their services in a structured programme. It is not a passive process. No doubt you will be looking for meta-analysis studies on Chiari surgery out-comes. Your definition of “success” and “success” from a neurosurgeon’s point of view is going to differ. Be clear on what you are looking at!

@Mia519 How are you? I’ve only peeked in on the board a little bit lately. My mood dove pretty low but I’m turning it around now. Yesterday, I finally met my new neurologist after months of searching & “interviewing” them! lol She said that my Chiari could be causing some of my symptoms but she’s referred me to an ENT to check for Meniere’s disease. She also drew labs to look for the Myasthenia Gravis modulating antibody as that was one I forgot to request from my PCP. She’s absolutely wonderfully compassionate & was impressed because I had already requested & had many of the tests performed that she would be performing! The MG diagnosis is still a possibility because I do have many of the symptoms.
Just knowing that I actually have a neurologist that is taking me seriously has lifted my spirits! I guess this is what hope feels like?! I agreed to try sertraline because she says she uses it with other Chiari patients to ease neuropathic pain. She actually wants to help ease some symptoms while we figure out what is going on with me!
I met with a new neurosurgeon a week ago who said that my Chiari doesn’t need to be decompressed & I was so happy to hear that since I’ve had 3 spine surgeries within the last 8 years! Please let me know how you are when you can!

Oh my goodness, I can totally relate. When my neurologist called to tell me about my Chiari, she only told me some vague symptoms to look out for and that she was referring me to a neurosurgeon. When I called to schedule an appointment with the neurosurgeon, his secretary/nurse literally asked me what kind of surgery I need. I didn’t even know the first thing about Chiari Malformation (and still don’t know a whole lot). The medical staff run around is SO frustrating!