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I went around the world literally to save my career as I…

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I went around the...

I went around the world literally to save my career as I woke up almost 5 years ago symptomatic with vertigo/throwing up/migraines/vision/balance/memory loss/confused etc etc to find out that I had Chiari One Malformation. Almost 3 years into this journey and after I had to pull out of my job, I had a CINE and all other tests completed and landed in Chicago and had a Craniotomy, durplasty, and a cut down of C1 and C2 and CFS was restored. I felt relief after surgery and worked hard on undoing all the coping measures I had to put into place. I then started to have all the symptoms come back. I still am very much sensitive to light/noise/sudden moves/ been diagnosed with sleep apnea and narcolepsy. I cant make a decision. I have had a major decline with understanding new information or processing it. I still get confused a lot. I cant remember like I used to. I cant multitask any more like I once did. My vision comes and goes. Some days I see okay, other days I cant see at all or its blurry. My balance is off. I still sleep on ice. I still have daily migraines. My personality has changed drastically. I am currently in Speech/OT/PT. I am working on thought processing/sequencing/ and balance and gait. etc. etc. I reached out to my NS at Chicago. I had another cervical MRI and CINE but it said it looked okay. I do not know who specializes in this. Its like I feel alone and I don't know the right doctor to see in reference to these things. I live in Indiana and not a lot of people are aware of CM and a lot of people do not believe so to speak that I should still be having episodes because after all " I had the surgery". I just need help. Any advice would be awesome and to be honest might save me from feeling insane. Thank you

Doctor's Assistant: Is the headache episodic or daily? And what about nausea?

Usually daily at one point or another. Nausea usually accompanies it. My neck/shoulders are always swollen and the migraine starts usually in base of neck and pressures upward

Doctor's Assistant: Anything else in your medical history you think the doctor should know?

I have major anxiety disorder. I know have major depression. I had something rare before a hysterectomy in 09 called Neuroleptic Malignant Syndrome due to one depression pill called Pristiq that landed me in the ICU for three days with temp over 106 and body shut down. I now have what they call atypical bipolar. I cant be treated with SSRI or SSNI due to NMS. Mayo consulted and agreed not to give it to me either. I have R/A diagnosed after hysterectomy. I have osteoporosis. I wear a hormone patch.

Submitted: 3 months ago.Category: Neurology
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Customer reply replied 3 months ago
I also during this journey was diagnosed with AFIB and medicated for 6 months and saw cardiologist who changed it to tachycardia. I was also diagnosed during this journey with a positive test for LYMES disease by my PCP who did several blood tests and was treated with antibiotics for six months. Currently seeing a new PCP. Currently seeing a Psychiatrist. Currently seeing a PT/OT/ST. I am not seeing a neurologist. I live in small town and feel I need to see someone who is familiar with my kind of surgery and my kind of journey and would understand it without thinking Im just crazy
Answered in 5 days by:
3/21/2018
Neurologist: Dr. David, Board Certified MD replied 2 months ago
Dr. David
Dr. David, Board Certified MD
Category: Neurology
Satisfied Customers: 49,749
Experience: Experienced physician in Neurology
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Hello, this is Dr. David. I am reviewing your question now and will be with you momentarily.

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Neurologist: Dr. David, Board Certified MD replied 2 months ago

I am sorry you have been through so much

I'm not sure if you will be able to find someone in your town who can understand all you have been through

after some brain surgery, you may not be the same

there may not be one treatment which can help you get back to where you where

but you may find some benefit from medical marijuana which could help decrease some pain and nausea and headaches and could help your anxiety and depression symptoms

https://www.indystar.com/story/news/politics/2018/01/25/indiana-takes-small-step-toward-legalizing-medical-marijuana-house-votes-study-issue/1049362001/

it is not legal in your state of Indiana yet, but it could be soon.

it is legal in illinois, but you have to be a state resident there to get it

http://earthmed.com/patient-information/get-your-medical-marijuana-card/?agreed=1

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Customer reply replied 2 months ago
I got back my CINE MR MRI Brain report- it noted Adenoidal cystic changes? Also noted- Single focus of increased T2 signal in the right frontal white matter is of great questionable significance. Can you tell me if this means anything at all
Neurologist: Dr. David, Board Certified MD replied 2 months ago

single focus of T2 signal brightness most commonly is due to a small broken blood vessel in the brain which can be seen for some time after it happens. this is usually not a worry

Let me know if you have other questions.
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