Hey all, so I would really like your feedback. I was diagnosed with Chiari a few months ago, 6 mm. I've been reading a lot about Chiari. It seems as though almost everyone experiences excruciating pain/headaches. I don't have much pain. I am very grateful, but it's left the neurosurgeon questioning whether my chiari should be symptomatic. I have a lot of imbalance/vertigo, a lot of grogginess (and sleep apnea), a lot of fogginess (which tends to cause me some surreal anxiety feelings), some upper neck pain, and nausea. I'm also very hypermobile - and cracking my upper neck feels like it relieves the pressure (weird??). The neurosurgeon I saw is at Stanford - he didn't have time for my questions and made me feel crazy that I would feel any symptoms at 6 mm. We were trying for our second baby… but with how I'm feeling and the new diagnosis, I'm not sure I could handle a pregnancy and newborn. I know I've already listed so many symptoms, but I also wanted to mention that I am very sensitive around my right temple and sometimes feel like I am swollen and/or have too much fluid around my head. Your feedback would so be appreciated. I feel down and anxious some days bc the symptoms are so come and go.
Welcome! I’m new too so I am interested in what those with more experience have to say but I wanted to tell you that I Am in a similar situation as you. similar symptoms…and do not have headaches. Dizziness was my first symptom (and I too have a three year old!) we also wanted another but these symptoms have put everything on hold. The most common symptom of chiari seems to be headaches especially with valsalva so it’s strange to have issues from the chiari without the most typical symptom but I do feel like I have to trust my gut. I too was just told by a NS that my symptoms most likely are not caused by the chiari (7mm) but Im seeking a second opinion. Glad you joined the site. Keep us posted on how you are doing!
Am I replying to Nikki or to everyone? I am so hopeless on the computer lol. Thank you Nikki for sharing. Please keep me posted too. I'm not sure what other doctor I'm going to pursue. I saw on this site that Dr. Fraser Henderson is great - so I'm going to call - but he lives on the other side of the continent. I also wanted to say that I experience a weird pressure problem - like my ears are always too pressurized, and every symptoms worsens when I'm standing vs laying and even sitting. And one more thing - I feel like my feet and lower legs aren't connected to my brain sometimes. Which makes me feel like they are numb-ish (I can feel them when I touch them) and out of sorts when I walk - especially start walking or change directions. Okay, enough - sorry the list is so long.
Okay, I just read Nikki's discussion. It was very helpful, a lot of overlap to my questions and symptoms. I also got a Cine MRI and it showed that I have a flow imbalance - the spinal cord is being pushed forward and the flow isn't flowing well in front. So the NS said the same thing to me - that it shouldn't cause any symptoms bc the flow isn't blocked.
Thank you Abby. I'm so overwhelmed! This is just crazy… with no clear path to get on. Thank you for the response.
Abby said:
Seems like you got more than just chiari your dealing with. Ehlers Danlos Syndrome and hypermobility is another issue many of us suffer with. Please make sure your getting tested for this and know that some of the issues may be stemming from these disorders.
Glad your here, please know your not alone.
Please look up Ehlers Danlos Syndrome and hypermobility
There is some really good books out there too, that you can check out at the library on chiair, EDS and connections to other disorders.
I have the crazy pressure feeling too! So glad you found this site! It’s a wonderful community with lots of support and information.
Thanks guys! It feels better to know I'm not alone. I'm still wrapping my mind around the fact that my symptoms are real - I've been told for so long that nothing is wrong and it's anxiety/etc etc.
Yah, Dr. Henderson isn't taking new patients… I can only get on the waiting list. Really a tough thing to hear. I'm ready to feel better. Im sure you all understand! Does anyone know if Dr. Sandhu or Dr. Nicholas Theodore (in AZ) are really good? Or anyone else closer to California?
Okay, one more question (okay, that's a lie, I know I'm going to have a million more. I'm sorry.). Does everyone else have good days/times and bad days/times? Sometimes I feel okay, and sometimes I feel horrible. Like can't concentrate, nauseous, can't focus my eyes well, imbalanced, etc. etc. Do symptoms just come and go like this for other people?
Thank you so much Rebecca. I don't even know how to describe how I feel right now. It's like I'm so overwhelmed and sad and scared by this diagnosis and all the other questions/possible related conditions; and I'm also relieved to hear that I'm not crazy, not alone, and starting to get some answers. Thank you for everyone's responses.
Yes to good days and bad days. A few things that make mine worse are rainy days and days where I do too much-too much activity or too much stimulation without rest/breaks. Also not eating regular meals and poor sleep makes my symptoms worse. This diagnosis is a lot to take in and each persons situation is unique-various symptoms and related conditions. Finding this website has been the best thing I’ve done for myself. I read posts for a while before jumping in, then as I learned more and increased my comfort level with this diagnosis I could admit to myself that it WAS what I was dealing with. Move at your own pace-do what works to take care of yourself. Reach out when you need support-this is a wonderful community of people!
Wolfgirl, Hi, and welcome.
Yes, yes, yes, my symptoms do come and go. Most of my symptoms are always with me, just some days they feel stronger than other days.
My Neurosurgeon is in CA. Wouter Schievink, M.D. @ Cedars Sinai Medical, Los Angeles.
in 2009, he performed a PFDD: Posterior Fossa Decompression with Duraplasty, and C-1 Laminectomy. I used my own tissue for the dura patch.
I am still an active patient, as I have bilateral nerve root cysts from the C spine down to Lumbar spine. Dr. S. thinks one of the cysts is leaking CSF fluid. Uggg!
Dr. S. is a world renowned expert in CSF leaks, and I have a lot of faith in him. He is of the opinion that more than 90% of persons with a Chiari have a connective tissue disorder of some type. After the shock of the diagnosis settled in, I did what you are doing.....research. I did not want the surgery; had 4 consults, all 4 Drs. wanted to do immediate surgery, and only one agreed to follow my symptoms, if I chose to do so.
Like a lot of others here on this site, I would recommend getting tested for CCI, EDS, Dysautonomia, and my personal opinion is to also check for CSF leaks. Full spine MRI, along with CINE MRi (CSF flow). Do this when you are ready. If your condition allows, take things slowly. The main thing is to find a NS that you trust, ...a Chiari expert.
You are not crazy, and certainly not alone. Welcome to the club. There are some wonderful people on this site, and they have so much good information to impart. I have learned a lot from them.
ps: I tried to post a reply to your thread before this one, and my computer froze up, so I apologize if two of them show up.
Chiari has so many different symptoms and affects each one of us on varying levels. My chiari was at 5mm and I was asymptomatic until an auto accident. All things horrible then came to light. I am very fortunate to have found Dr. David Jimenez in San Antonio, TX. He is truly an expert in dealing with CMs.
Good luck finding the right doctor for you. Stick to educating yourself, only you know how you are feeling - even if you can't explain it to anyone else. We are glad you found us and are here to listen and offer our thoughts and support.
-M
Thank you aktrek. I'm sorry you've been dealing with all this. And I am horrible at denial - I'm more of an obsessor. I think we could benefit by trading each other ;) you give me a little denial and I'll give you some obsession. We'd both balance out a bit, lol.
I'm definitely going to look into your doctor. I really need someone who takes the hypermobility issues seriously.
Thank you again for your response, keep in touch,
Laura
aktrek said:
Wolfgirl, Hi, and welcome.
Yes, yes, yes, my symptoms do come and go. Most of my symptoms are always with me, just some days they feel stronger than other days.
My Neurosurgeon is in CA. Wouter Schievink, M.D. @ Cedars Sinai Medical, Los Angeles.
in 2009, he performed a PFDD: Posterior Fossa Decompression with Duraplasty, and C-1 Laminectomy. I used my own tissue for the dura patch.
I am still an active patient, as I have bilateral nerve root cysts from the C spine down to Lumbar spine. Dr. S. thinks one of the cysts is leaking CSF fluid. Uggg!
Dr. S. is a world renowned expert in CSF leaks, and I have a lot of faith in him. He is of the opinion that more than 90% of persons with a Chiari have a connective tissue disorder of some type. After the shock of the diagnosis settled in, I did what you are doing.....research. I did not want the surgery; had 4 consults, all 4 Drs. wanted to do immediate surgery, and only one agreed to follow my symptoms, if I chose to do so.
Like a lot of others here on this site, I would recommend getting tested for CCI, EDS, Dysautonomia, and my personal opinion is to also check for CSF leaks. Full spine MRI, along with CINE MRi (CSF flow). Do this when you are ready. If your condition allows, take things slowly. The main thing is to find a NS that you trust, ...a Chiari expert.
You are not crazy, and certainly not alone. Welcome to the club. There are some wonderful people on this site, and they have so much good information to impart. I have learned a lot from them.
ps: I tried to post a reply to your thread before this one, and my computer froze up, so I apologize if two of them show up.
thank you M!! I will look into your doc as well. Chiari is a strange bird! My symptoms were also aggravated after I started coaching sports again and took a volleyball to the head. I can't believe the range of symptoms is can cause.
Weebleviii said:
Chiari has so many different symptoms and affects each one of us on varying levels. My chiari was at 5mm and I was asymptomatic until an auto accident. All things horrible then came to light. I am very fortunate to have found Dr. David Jimenez in San Antonio, TX. He is truly an expert in dealing with CMs.
Good luck finding the right doctor for you. Stick to educating yourself, only you know how you are feeling - even if you can't explain it to anyone else. We are glad you found us and are here to listen and offer our thoughts and support.
-M
Thank you Mandy, that is so helpful.
Well, I started having some weird symptoms 8 years ago - I still don't really know if that was my Chiari or not. It was like a weird wave would rush over my head - almost like an absence seizure (but I'm pretty sure I don't have epilepsy), like I couldn't do much for about 10 seconds until it was over. Then, I had my son about 3 1/2 years ago and ever since my symptoms have progressed. THEN I actually did get major whiplash while playing basketball (same week I got nailed in the head with a volleyball), this was in November 2014. All my symptoms worsened. I went to an Osteopath to see if Cranial/Sacral work would help. I brought him my MRI from 2012 and asked him to take a look at it, thinking he wouldn't find anything, bc my Neurologist didn't. My osteopath told me the following week that I had at least Ectopia and he sent me for a sitting MRI, which showed the 6mm Chiari! Ps. the Cranial/Sacral work made everything worse! He is a good doctor and was the only one to diagnose me, but the work he did on me aggravated everything. This was before we really knew what was going on. So, whiplash has been a part of my worsening symptoms, but wasn't the thing that brought them on. Hope that answers your question; it's not an either/or answer for you though.
Mandy said:
Hi Wolfgirl,
Here's Dr. Schievink's info: http://www.cedars-sinai.edu/Bios---Physician/P-Z/Wouter-I-Schievink...
Dr. Nicholas Theodore in AZ has experience with craniocervical instability (CCI). Here's a video he did back in 2011: http://csfinfo.org/research/csf-funded-research/csf-ehlers-danlos-s...
Dr. Jimenez in TX is highly regarded by his patients.
Did you happen to read my article about whiplash? A serve/spike would have enough force to really move your head abnormally.
Any herniation is abnormal, and I am really glad you are looking into it! How long have you been having symptoms?
Take care,
Mandy
Hi Wolfgirl,
Hate to tell you, but, you do not need to give me any of your obsessive issues, because unfortunately, I am a bit bothered by that myself, lol. I did like your suggestion about sharing issues for balance. That's progressive thinking! If only it were that easy right? I forgot to tell you that I have EVERY one of the symptoms you listed. Quite a few things got better after surgery, but so many factors weigh in as to what each person's long term prognosis will be. So happy this group exists with people who share their experiences, and research findings.
Take care
Pam
Hi and welcome! It’s been awhile since I’ve been on here. I wanted to share with you guys that when you have a doctor tell you that you cannot be having symptoms from a 5or 6mm herniation, just move on because they don’t have a clue what they are talking about! The more research you do you will see that some people with very small herniations can have many symptoms and others with large ones have no symptoms at all. I have experienced this first hand and almost gave up finding help myself after seeing many doctors that either said I was non surgical or that my symptoms must be coming from something else. I have a five mm herniation and started having a ton of symptoms about nine yrs ago. I kept seeing Dr Oro’s name pop up as a wonderful Chiari specialist in Colorado so as a last ditch effort I sent him my MRI and for a fee he looked them over and wanted to see me. I flew to CO in December 08 and had surgery there February 3rd. My CSF was completely blocked on one side and partially on the other!! We have to be our own advocates and fight for ourselves because we know our bodies better then anyone. My surgery restored flow which is great but I’m still dealing with a lot of issues related to the Chiari. Surgery doesn’t make it go away but it did help many of my symptoms. Unfortunately I’ve had to give up my dream job and go on disability because I struggle with cognitive issues as well as many others but I would do the surgery again in a minute!
Hang in there and don’t give up until you find a doctor who will listen to you 
God Bless,
Susan
Your symptoms are very similar to mine. I have vertigo almost all the time, and lots of brain fog. I don't often get headaches, but when I do they are pretty bad. I saw a neurologist in February and he kind of made me feel like I was crazy and said my problem was all in my ears. ENT doctor says no. I am often anxious, too. Just wanted you to know you weren't alone!
Thank you Lisa! I appreciate that! Let me know if you get any answers that you can actually hold on to, and I'll do the same! I hope you are having a good day.