I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed July 2018. I'm struggling mentally & physically with persistent symptoms. Abdominal and back pain, freq. urination, freq. thirst, dehydration, loss of appetite, whole body aches w/burning, night sweats, fatigue, weakness, ringing in my ears. Sometimes nausea, headache, insomnia, indigestion, sore throat, sinuses run or stuffed up. I feel like I'm stuck in a bad nightmare. I do everything I can to eat well, stay hydrated, stay on a sleep schedule etc...but it doesn't matter what I do the problem symptoms persist to the point that I'm very depressed. I even took Elavil for months. It helped my mood but I experienced side effects and I discontinued. I'm so frustrated with my health & doctors.
I'm so sorry to hear of the post-surgery problems you have had. I can imagine that you would feel depressed with so many physical difficulties going on. Since you discontinued the Elavil, have you tried another anti-depressant that might help with your depression?
I'm wondering how the results of your follow up blood work are going. Have you had those levels checked lately?
Does your NET doctor offer you any suggestions for dealing with the symptoms you have?
I'm so sorry to hear of the post-surgery problems you have had. I can imagine that you would feel depressed with so many physical difficulties going on. Since you discontinued the Elavil, have you tried another anti-depressant that might help with your depression?
I'm wondering how the results of your follow up blood work are going. Have you had those levels checked lately?
Does your NET doctor offer you any suggestions for dealing with the symptoms you have?
I last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.
I appreciate your sharing of your experience. On Mayo Connect we all learn from each other. If you are comfortable sharing a bit more about this, could you share: What symptoms did you had prior to surgery? How are you doing since your surgery in December?
I last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.
I appreciate your sharing of your experience. On Mayo Connect we all learn from each other. If you are comfortable sharing a bit more about this, could you share: What symptoms did you had prior to surgery? How are you doing since your surgery in December?
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 🙂
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 🙂
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?
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I'm so sorry to hear of the post-surgery problems you have had. I can imagine that you would feel depressed with so many physical difficulties going on. Since you discontinued the Elavil, have you tried another anti-depressant that might help with your depression?
I'm wondering how the results of your follow up blood work are going. Have you had those levels checked lately?
Does your NET doctor offer you any suggestions for dealing with the symptoms you have?
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1 ReactionI last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.
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1 ReactionMe. I had one in the base of my skull and was removed last December in Mayo Clinic in Jax by Dr Philip Pirgousis
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2 ReactionsHello @patriciagsr
I appreciate your sharing of your experience. On Mayo Connect we all learn from each other. If you are comfortable sharing a bit more about this, could you share: What symptoms did you had prior to surgery? How are you doing since your surgery in December?
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1 Reaction@titansmistress
I hope that a better anti-depressant is found to help you. Do you have an appointment scheduled yet?
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1 ReactionHello, 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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2 ReactionsI 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?
Yes, in August.
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2 ReactionsHow large was your NET (size in mm?). I have same issue 13x14mm
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2 ReactionsSo sorry for your extended problems. Ron
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