Chiari answers please!

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Around two years ago I really started noticing an issue in my balance and coordination I have always had little episodes but have tended to over look them as being clumsy. Within the past year it has turned into constantly feeling drunk, horrible headaches, slurred speech, blurred vision, having a fainting episode at work, muscle weakness in my arms and legs with a tingling sensation and now to terrible neck and back pain along my spine.

My mother was diagnosed with SCA1 a type of genetic Atxaia back in 2011. My grandmother had it as well and passed away with it in 2000. In June I decided to go and get tested to see if I carried the genetic mutation as the symptoms were the same as the Ataxia. After the help of my Neurologist and special labs of blood work sent off my test came back that Negative. I honestly was shocked along with my neurologist being such a strong family history but yet I was very fortunate not to carry this disorder.

After this conclusion the doctor then decided he wanted to do an MRI to try and see if we could see what was wrong because he was at a lost. A 2.4 x 2.2 x 2.3 cm superior cerebellar arachnoid cyst with mild local mass effect was shown on the MRI. Since I was having bad headaches at the time I prescribed a low dose of Topamax to try and help. I was then referred to another Nuero Surgeon to see what was the best option.

After speaking with the new Nuero he wanted to get two more MRIs one with and without contrast and a spinal he had mentioned neck disease in our first visit. The MRIs shown my cyst had not grown so he did not see any need to do surgery or where it was interfering with any other part of my brain just suggested we monitor it in a few months to make sure It doesn't grow.

However he did notice on my scans that my cerebellar tonsillar was peeking out and was mildly concerned and mention it being the possibility of Chiari but didn't not want to say that this could be the possible cause of my issues that he wanted to see if my symptoms got Better or worse. He mentioned he didn't see any problems with my spine that right now he wanted to just go with me having a headache disorder.

My official MRI reports came in from my spine a few days after seeing the surgeon. This is what it states:

On the T2 sagittal images, slight loss of signal of the C2-3 through through C5-6 discs

consistent with degenerative disc disease. No focal disc protrusion significant central canal or

foraminal narrowing. On the thin slice T2 sagittal and axial images, there is a CSF intensity focus in the central aspect of the cord coursing from the mid aspect of C6 down to the bottom of the C6-7 disc measuring approximately 1 mm AP x 2 mm wide x 11 mm cephalocaudal. This is just anterior to the central cord on the sagittal and axial images. Mild ectopia of The right cerebellar tonsil into the upper most aspect of the of the cervical canal by approximate 4 mm.

Between the cyst, symptoms, and findings on my MRI I am really concerned and just want the proper answers. When I called them today I told them I was confused and concerned about my report along with the fact of being in pain and I was told that they didn't see anything abnormal on my Spinal and that they had put in an order for physical therapy. Are they just not reading the radiologist report from the MRI? I know something's wrong. And if it is Chiari with the symptoms and findings in my report I want to face them head on and try to do what I can now to help.

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  • Posted

    Jessica stay on your doctors. I went through the exact same thing an it wasn't until I practicality show out on my neurologist I was taken seriously. The pains I have an had are unbareable at times. An I was made to believe after brain surgery I would be back to normal in 3 to 6 weeks an not trying to scare you because all of us are different but it's been since March of last year and I am now being told of a 2nd surgery. An I'm so upset. So my best advice to you is to stay on your doctors and get other opinions is your not comfortable and less pain. ChIarI malformation effects a lot of people different. An I feel that the doctors are just breaking the ice on this genetic disorder. There just recently over the years seeing more people with this. So I really still fee like there hasn't been a great amount of studies enough to treat this disorder. I'm still in pain without medication. I can't move my left side an my side numbness and tingling never went away.

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    • Posted

      Dear Wanda,

      Just read your post, i am sorry to hear that you are still in pain, I had surgery in May it is Septnow, my headache is gone, but my back, arms still paining, after yoga ercise (which my husband bought a yoga mat for me, and on it thats some print out of the exercises0 I manage to walk etc, but if not I am not able to function, what kind of pain do you have, did you have post examination after surgery, I just want to know whether this is the casue of chiari or something else

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    • Posted

      I have Chiari. Malformation 1. I was diagnosed with this February 23 2015. Had brain surgery March 30 2015. After the surgery and me going back and forth an not being paralyzed anymore on my left side with med I still have complete numbness tingling an severe pressure on my head. My 1st ns talked about doing a 2nd surgery which made me get a 2nd opinion.. I felt that whatever needed to be done should have been done with my 1st surgery. Now my new ns wants me to wait another year an has recently diagnosed me with syringomyelia which follows chiari. I'm now just playing a waiting game an praying that my systoms change. But again without med I can't function. I'm back paralyzed if I don't take them. I've had several Mri's.since my surgery that showed a opening still on my brain. That's not supposed to be there. I felt that I was looked at as easy money. For the 1st surgery was 54000. Now the talk of a 2nd surgery to put a larger shunt in I'm sure is more. An I'm upset because that should have been done the 1st time. Now the thought of cutting me in the same area makes me furious since there's still no gaurantees.I'll be normal again. An the pain management doctors just give you med to text me like I'm a gineepig. I just pray for healing and more studies of this disorders. So the doctors can stop experimenting with this rapidly growing disorder

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    • Posted

      The Problem with Neurology and the Brain is that symptoms like dizziness and imbalance could be many different disorders. So while it is confusing for us laypeople, it has to be confusing for doctors. Most are unfamiliar with Chiari as it is a Rare Disorder. YOU may have one surgery and then they have to go back in because you have a leak or scar tissue or allergy to the dural patch. It is expensive- I probably wouldn't do anything if I had no insurance. But doctors do love to dose us up on medicines. What I noticed following my surgery June 2, was immediate improvement in eyesight, dizziness and imbalance. Which made it all the more depressing when I started getting these symptoms back again three weeks ago. So this disorder is about quality of life. If life sucks, there is no quality, so most of us go ahead and get the surgery. Why are my symptoms coming back? Who knows. If its because of scar tissue, that is a viscious cycle. You cut, You get scar tissue. YOu zap that with a lazer and it still comes back again. 

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    • Posted

      Wanda, how are you doing?, I just spoke to my NS, according to him my pain in the feet, back, neck was due to the healing process, I was going to osteo to have discussion on how they aare going to operate me, however both dept (Ortho & NS) said , it is better to wait for another 6 months if I want to havve spine, joint operation, as it could be a neurological issue after decompression, apparently its normal when some one just have decompression and do something silling (I was not aware I should not be walking a mile - at least wait after 4 months decompression), hence this is what happened tome, healing process is taking 7 - 8 months to really properly ok to start exercising etc, but you must keep moving as well but not excessily , perhaps your health care professional is wright to wait... hopefully you are feeling better as the days gone by

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  • Posted

    Dear Jessica, I feel emphathy with your condition, as I had been there, I could not put up with the headache and pain all over my body, so after surgery I am headache free, is best to expalin it to your doctor that your'' quality of life no longer exist'' then your doctor should do something about it, even though I still have pain on around C5-C6 I am managing so much better, I wait for my post surgery check up after that I will then ask to be refered to Ortho.

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  • Posted

    "Mild ectopia of The right cerebellar tonsil into the upper most aspect of the of the cervical canal by approximate 4 mm."  They probably don't think it's an issue since it sounds like the tonsil is only 4mm. However, DO NOT LET THEM DO NOTHING!! THey should meet with you to explain the MRI! Even if there is minimal extension, the fact that any cerebellar tonsil has extended into the foraman magnum is indicative of Chiari. Doctors don't seem to know what to do about Chiari and don't diagnose it very often. 

    I was diagnosed with Chiari in Nov. 2015. I had been having dizziness, balance, blurred vision, mild headaches and I went in to see Dr. I TOLD the resident I needed an MRI of the brain and she (being a resident) went about talking to her superiors and finally came back and had made the referral. Had it done, next day Dr. called and told me I have Chiari. She has only had one other patient with it. Referred me to a NS. I saw him and he didn't think it was that bad of a case and referred me  to a Neurologist.

    Thus began the long painful journey into finding "something else" to explain my symptoms since they weren't "typical" Chiari. In addition to the

    1) brain MRI, I had an

    2) MRI of the cervical spine,

    3) thoracic MRI ,

    4) CT scan of blood vessels in brain,

    5) tilt table test to evaluate blood pressure,

    6) Lumbar Puncture to test for M.S.

    7) audiological eval (balance), and a

    8) neuro-ophthalmologist. 

    The neuro-opthalmologist told me that I had 20/20 vision and my symptoms were likely all in my head. ALL IN MY HEAD!! The phrase that NO DOCTOR SHOULD EVER USE!!!  

    OF COURSE IT's ALL IN MY HEAD!! I HAVE CHIARI. I gave him several reviews in YELP!. 

    Anyway, after that my Neurologist finally referred me to a different hospital system to have a Cine MRI, which videos your brain and can tell if CSF fluid is blocked. BINGO!!  The test showed complete BLOCKAGE of CSF on the right side with a tonsil of 8 cm.   

    In other words, NEVER GIVE UP!! MAKE THEM PAY ATTENTION!

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    • Posted

      Cine MRI scan is a special MRI study used to observe cerebrospinal fluid (CSF) flow. With each heartbeat, CSF is forced out of the ventricle of the brain, into the cisterna magna, and down the spinal canal. 
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    • Posted

      Thanks lineel. I've had an mri with an with out contrast. An their doing them now every 6months. I'm so tired of this though. I was a very vibrant woman. I woke up one day at the age of 38 an my entire life changed. But I am very persistent about my care. As should anyone who knows that it's something wrong. .

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    • Posted

      Wanda I can understand your frustration especially after having surgery. It's difficult for me as well because I'm on my feet and do a lot of activity that requires lifting and various other things through the day at my job. Now it's become impossible to even bend down to pick things up. What makes it worse is coming home to your children and not being able to do the things you want to do with them because you're in pain. I have been depressed, angry, a mix of emotions just wanting answers.

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    • Posted

      HANG IN THERE!!! It SUCKS to have a RARE Disorder that most people have never heard of. I'm becoming an expert in my state!! Which is pretty sad! However, Every DAY A NEW DAY and we SALLY FORTH TO CONQUER NEW DOCTORS!!

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    • Posted

      Jessica don't stop until you do get answers. For I do know that if they catch it early on there's greater chances of living a somewhat normal life. I am a licensed cosmetologist that had a 7 stylish salon. I did hair for 20+years. An I've had to let it go because I couldn't stand up long without severe pain. An thank God my children are just about grown an able to do for themselves. I wouldn't know what to do because there's lack of help. May God give you everything you need to get through this sweetie. . An yes I to suffered from depression anger and everything else. But don't you dare give up.!! You will survive. ..!!! Just keep believing an pressing!!!

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  • Posted

    My original Nuero called this afternoon and had an opening to see me tomorrow morning. Hoping to get answers and the proper diagnosis.
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    • Posted

      Make them EXPLAIN everything in the MRI REPORT and not try to RUSH YOU OUT OF THE OFFICE!!!!!  Have a list of QUESTIONS!!!  I Record them with my iPhone so I can play it back later and then don't have to take notes!!! SOLDIER ON!!!

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    • Posted

      I sure will! Thank you for all the advice and information thus far. I know this is not going to be an easy road ahead.
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    • Posted

      Got my MRI w/wo contrast back. (Had surgery 3 months ago and had recurrence of dizzy/balance issues three weeks ago so pressed them into checking it out!!)  It didn't find anything. UGH. So I have to go see my NS next week to hear him tell me how there was nothing wrong with my surgery and the symptoms I have now are just part of the "healing process" which doesn't explain why I had NO symptoms for 21/2 months.  Also heard from Dr. office that they are recommending PT. For WHAT?? WHAT Is PT going to do for me. 

      On the upside, I got a CPAP machine for sleep apnea, which I've learned is associated with Chiari. EVERYTHING is associated with CHIARI!!  

      So my best guess is that the current dizziness/balance/exhaustion is what is left after they fix everything because even if they decompress, you can have damage to your cerebellum/brain stem from being squished for years.  Or it's just me growing old. 

      THE MOST ANNOYING THING ABOUT ALL OF THIS is being married to a guy with 2% body fat, tennis player, pain in the butt healthy person. He has absolutely no clue about being ill all the time!!!  Can they see EMPATHY pills??  

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