Chiari answers please!

Posted , 4 users are following.

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

    Just left the Nuero And I quote, "I don't think your Chiari will get any worse since you're already an adult normally if it would have gotten worse it would be in childhood or as a teenager." Surgery is too risky and doesn't always work and medications won't help we can do physical therapy and try to help." Now off to find another doctor who will actually listen and try to help.

    • Posted

      Geeze, that trully not wright,  when I was diagnosed, it was not that bad, but after queeing for a decompression surgery waiting list, I ended up becoming a house bound and fainted each time, so it is getting worse, but the good thing is...IT IS GETTING BETTER AFTER DECOMPRESSION, AS LONG AS you take an advice from them, not to do too much too soon after surgery - it is taking 6 - 7 months before you can do your normal life... but be persistent, get a second opinion if need be and last but not least go to ombudsman
    • Posted

      After my Nuero appointment yesterday I had another appointment with a new GP thanks to the owner of the company I work for. He is getting me referred to the Mayo clinic or Emory which ever will accept my insurance and be able to help. As of now he's given me quite a few different medications to try and help for the mean time. I'm just glad to have a doctor finally listen and take it seriously.

    • Posted

      BS!!!  I'm freakin' 57 years young and mine just went bad this past year. Shows that your Neuro is clueless!!  Surgery is NOT too risky, although it may not take care of all symptoms since things have already been squished inside your skull so there may be residual symptoms. Definitely go find someone else. I think some of these jerks just blow us off because they don't actually know what they are talking about and don't want anyone to find out!

       

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