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Posts (22)

Sep 9, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Hello again, I came back from my visit to Mayo in Fl last week. I will have my next surgery for the implant in Dec, I still have some fat in my vocal chord. My problem is how much saliva and phlem I have. I am taking Robinol 1 mg 3 times per day, its helping but not as I expected. I had my phlems yellow so the doctor prescribed me amoxicilin 500 mg 3 per day, but after finished my 14 day treatment the color and taste of the phlem came back so now I am taking levofloxacin 500 mg 1 per day for 5 days. Hope this controls the colour and horrible taste of my phlems. A little issue in my feeding tube but everything under control. Now I am doing my therapies at home by myself. My weight is more stable and my energy level is much better. I am taking lots of vitamin and carb supplements and that is working for me. Hope you are doing well 🙂

Jun 29, 2019 · Anyone heard about therapy with VitalStim for swallowing problems? in Ear, Nose & Throat (ENT)

Thank you luckyhunterjs for you reply. I have a swallowing therapist twice daily and she is the one that has recommended it to me. We live in Peru and we don’t have it here so I would have to travel to the Stafes for my treatment, I am willing to do it if it will help me.
I am in a feeding tube and starting to eat Gerber consistency food. I feel I need some extra therapy and she suggested VitalStim since she has been 2 tines in Ryan Child in Chicago accompanying patients with excellent results. I am willing to give it a try but that means to move fir 1 month to the States and all the cost that is involved.

Jun 21, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Hello @hopeful33250. My left vocal cord was paralizad after the big surgery (they told me this happens many time when they intube you for anesthesia), now it is not only paralized but has collapsed. Just had fat Inyected and they hace recommend to do what you have done in the near future. Did you have good results ? How was the surgery ? Any side effects except not able to talk for a week or so ? One of my problems is that a have so much flems and saliva that trying to eat is complicated. I end up spitting almost everything I eat but I keep doing with my therapist so my muscles get practice.
My horner’s Syndrome is also from the surgery. For that I have orofacial therapy every day and my eye is much better. Apparently this makes the side affected I your face dry and that can affect the cornea. Will still have my appointment with the specialist in August. This was also because if the surgery.

I have lost lots of weight but now I am in my limit, can’t loose more. I am changing nutritionist next week. I was on Isosource 1,5 with fiber for 5 months and it was hell for me. Continues nausea and vomits. I month ago I switched to a blend diet at home and it is much much better. I feel better and with much more energy. My diet has everything plus supplements. I do recommend that strongly, eat food not supplements.
Hope this helps 🙂

Jun 21, 2019 · Anyone heard about therapy with VitalStim for swallowing problems? in Ear, Nose & Throat (ENT)

I have read wonderful reviews about treatments using VitalStim. Shirley Ryan in Chicago is one of the best and I know JH does it as well and with good reviews.
I asked my ent doctor and they don’t do it in Mayo, and when I asked why they told not good reviews and I haven’t read any bad review so far! At the end they told me to do it if I want but but with no endorsement of amago Clinic. This is an amazing treatment with electricity to help the internal muscles to swallow.

Anybody has had any experience ?

Thanks

Jun 21, 2019 · ENT Issues: I don’t know what to do. in Ear, Nose & Throat (ENT)

For me that is sinusitis. My daughter had that and after many years they had to operate her to clean her “senos nasales” ( I am sorry my mother tongue is Spanish) which are the holes under your eyes that keep acumulating flems. With that it was ended. Hope this helps

Jun 18, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

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 🙂