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@patriciagsr

Hello, my symptoms were dizziness, tiredness and some headaches. I live in Peru so my GP ordered an MRI and CT Scan and when he realised it was a paraganglioma he directed me to Mayo since, as we all know, it is a very rare tumor. Has my surgery on Dec 2018 and still struggling with the side effects. One paralysed and collapsed vocal chord (so far got 2 fat and restylane inyection) and my voice is much better. I could swallow so I had a gtube placed for my whole nutrition, liquids and medicines. Still with the tube but being able to swallow things like Gerber baby food but not enough to sustain me. I also got Horner’s Syndrome. I am recovering, very slowly but on the right track. I do all my follow ups in Mayo so I travel there every 3 months. Sometimes a little fed up with all these but keeping up. Dr Pirgousis eas the surgeon and now Dr Casler sees me, Dr Amy Rutt for my voice. I August I will start with an eye doctor and dermatologist (both due to Horner’s Syndrome). They check my swallowing with a barium fluoroscopy. They have told me some symptoms may be permanent or not. Time will tell. Now I do 2 hours daily of swallowing and orofacial therapy. Voice therapy 3 times a week plus acupunture (this is something I added by myself with good results). Everything counts 🙂

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Replies to "Hello, my symptoms were dizziness, tiredness and some headaches. I live in Peru so my GP..."

I appreciate your sharing more of your health history, @patriciagsr. You certainly do have complex health problems. I'm glad to hear that you are able to go to Mayo periodically for treatment. Your doctor was wise to refer you there. It sounds like given your circumstances you are doing a lot to advocate and help yourself. I do admire that.

I am glad to hear that you are involved with speech therapy. If I may ask, how did the paralyzed vocal cord become a problem? Was it a result of the surgery or another problem? I also have a paralyzed vocal cord as well as atrophy in both cords. I had surgery to put a silastic implant in the paralyzed cord. Has this been suggested to you?

Could you share a bit more about Horner's Syndrome? When was this diagnosed and does it have to do with the surgery as well?

I'm guessing that because of your nutrition issues you may have lost a lot of weight, is that correct? How is your energy level?