Frustrated with seeking a knowledgable dr/neuro. I’ve had chiari symptoms for 2.5 years. Just this month i saw a neuro (yes it took my primary care dr that long to finally refer after my persistence) the neuro told me my mri and ct are normal except I have low lying tonsills but that is a normal variation and is not causing my symptoms (dizziness, pressure in head and neck, ringing in ears, fatigue and walking problems began just last week) so I researched the tonsil thing this here I am in this wonderful support group. However, I really need to see a knowledgeable neurosurgeon yet am having trouble getting a referral. I saw a different primary care dr to refer me to a different neuro and he is dragging his feet and not being very responsive. I left three messages for him today asking to send the new neuro the final info they need, yet he hasn’t called back or some anything. So I wait. Trying to play with my three year old and keep our household going, while trying to ignore the symptoms and hope for the best, but I know I need good care. Any thoughts?
Yes, please look for a neurosurgeon that specializes in the condition. I am a prime example of what you are going through and it took my awesome newest PCP to conclude that my problems were neurological and beat down many doors for me to get me to a great neurosurgeon. I too have the descriptive term low lying cerebellar tonsils or tonsillar ectopia. Mine do not say Chiari Malformation ??? Blown off by many doctors for four years until recently. Keep pushing for yourself and good luck.
Nikki- you have the right idea…persistence. Keep going till you know its right. Start researching NSs so you know who you want to see. Look in your state and also be open to travel if you can. I know it’s hard, but keep it up you are doing the right thing.
Jenn
Thanks everyone for your support and encouragement. I’m new and that was my first post and I’m sorry it was so negative. I’m laughing Bc in my profile I said I enjoy finding joy in the little things. Ha! Yesterday was def a low point. This journey is such a roller coaster and I think knowing something is wrong but not having information and a sense of direction/treatment is so frustrating. I called dr oro but the lady answering the phone said they won’t see anyone with less than 5 mm herniation. I only have an mri from 1.5 years ago identifying low lying tonsills. Her statement seems to contradict what the literature says about length not being related to symptoms. I moved on and found dr raymond sekula in Pennsylvania. Seems to be knowledgable about chiari and is publishing/researching in this area. Anyone know anything about dr sekula? I live in St. Louis but will travel anywhere as I have a three year old daughter and she and my husband are my world. I’ll do whatever it takes to be as healthy as I can to care for her.