Neurosurgeon’s recommendation: surgery is not warranted since my symptoms are not severe. Result of the first MRI results show my tonsils extend 7 to 8 mm below the foramen magnum. Per neurosurgeon, the follow up CINE MRI did not show any cysts or other concerns. I was also told I am beyond the age where most experience dangerous complications. According to the neurosurgeon, dangerous symptoms usually manifest way earlier than age 40. He recommended I continue to see the neurologist for treatment of symptoms. I am not sure what I expected from the neurosurgeon. Initially I felt relieved there were no further complications or concerns, but I am still have these symptoms; pain (head, neck, shoulders), dizziness, fullness/pressure in head and ears, exhaustion, insomnia, poor memory, vision changes, nose bleeds (not sure this is a Chiari symptom). Prior to the Chiari dx, I saw an endocrinologist due to enlarged thyroid. After biopsy and hormone levels came back normal, I was told my symptoms were not at all related to the thyroid. I have made up in my mind that I will just have to live with things the way they are, not an easy task.
Please excuse any spelling or grammatical errors-blame it on Chiari!
Thanks for your input and encouragement. I think I panicked and chickened out when I saw the neurosurgeon. I had a typed list (way more than those I listed above) and a diary recording day to day experiences, but I did not discuss them with the neurosurgeon. I have a follow up with the neurologist next month. Maybe I will be more focused and can ask better questions. My neurologist has been great about making sure I get the referrals to investigate symptoms. Once she saw results of first MRI she ordered the CINE (per neurosurgeon was unremarkable) and referred me directly to the neurosurgeon.
Emmaline said:
Well, that is tough to hear...I would suggest to you that a second opinion is due...get copies of your records and films and take them to someone else. A 7mm herniation is nothing to sneeze at and needs to be addressed. You have symptoms. I'd be interested in the results of your Cine to see how restricted the flow is.
These appts can be disappointing, especially when your hopes get so high...but like so make of us, we hop around looking for help where ever we can find it. For you it would be worth it. And no it is NOT easy. Hang in there. Hopefully the next one will do the enitire run...check for EDS, or connective tissue disorders, cervical instability, and dysautonomia. Those are the biggies for us. And the need to be screened for!
From the information I found on the practice and the neurosurgeon I saw, they do not specialize in Chiari. Unless I overlooked it, that disorder was not listed on their website. I did not agree with a lot of what I was told, but I felt numb, but also relieved he did not recommending I go immediately into surgery. I have experienced symptoms for as long as I can remember-kindergarten had vision problems, horrible headaches and stomach aches. Starting in kindergarten I missed countless days from school and stayed in doctor's office. Teachers and doctors thought my mom was overreacting. Now I know she had no clue what to do. I have to give her credit, she never just overlooked my problems and tried her best to help. There was only so much she could do with the limited resources. I can only recall seeing our small town general practitioner was diagnosed with sinus, allergy, migraines and very painful Gastroenteritis (placed on restricted diet). With much prayer the symptoms became bearable after around 6th grade-on. All this didn't just start at 40, but just seems to be worsening over the last 6 to 8 months. The idea of living with this is daunting at best. I have some pretty good days, but most days I am spend my day trying to get through the day so that I can come home and lay down. This is the only way I have been able to manage work and daily life. Thanks for you input. I plan to follow up with neurologist and discuss next steps.
Beeba said:
I have to wonder - what would you consider severe if you read that symptom list for someone else (say your child or your parent) would you not call that a lot? And my chiari came to a head as it was at 41. Perhaps it wouldn't have killed me but honestly I couldn't have lived with that headache. So indeed it would have killed me. Does the nuerosurgeon you saw specialize in chiari. This is a very basic surgery for almost any ns but the outcomes vary based on the experience of the ns and how many they have preformed. I would consider a second opinion. You can still choose to not have surgery but judging by the assessment I think a second opinion could help ease your mind. Please refer to our dr recommendation list. These are not drs we personally endorse but they come to us based on positive reviews and recommendations of other patients.