My daughter's journey

My daughter is 18 and had her surgery on 09-06-13. She had a TT with bilateral lymph node dissection. She had 37 lymph nodes removed in her neck with 21 testing positive for cancer (papillary). Her next appointment is 11-05-13 with the endo.

She is having problems with her right arm hurting so we went to a neurologist who said she has Lymphedema and recommended physical therapy. Has anyone had these issues?

The surgeon said that the nerves in the right side of her neck must have been damaged from the surgery (she also has Horner Syndrome in her right eye). She was in surgery for 9 hours!

I read that B Complex vitamins and Cod Liver Oil helps regenerate the nerves. I am not a believer in allopathic medicine and I am struggling with having her on so many drugs. I want to try and and help her naturally if possible. She just wants everything fixed yesterday and doesn't care how it happens.

Any insight on this would be helpful.

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I have MTC so its slight different in terms of treatment but overall very similar. I had a TT and partial Para TT (3 of 4) removed in 1997 when i was 13 years old. Then in 2008 i had a neck dissection removing 16 malignant lymph nodes which had also metastasized to my liver. It has been my experience that the nerves will relearn with time. I went through pain, twitches and tingling as the numbness went away and i regained my feeling( i was numb from my ear to my pectoral muscle). I still have some numbness in my cheek but overall i have regained most feeling in my neck.
Good luck to you and your daughter, my biggest help through all this has been to remain positive.
Chad

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cadragon, how are you feeling now? My son had a TT and partial Para TT removed in February of 2013 at age 15. He is now on 175mcg of synthroid and he still has so many symptoms. His skin is so dry, gets canker sores a lot (which may be due to the fact he has allergies/asthma), tired all the time, aches and pains all over, digestive problems, extreme mood swings, difficulty focusing....He tells me he just wishes he had one day where he felt good. He was a straight A student last year, but is struggling with his harder courses this year as it takes so much out of him to stay focused. Any suggestions?

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cmich, I had physical therapy for three months after TT w/RNR to help with right shoulder and right arm movement. I had 11 of 39 lymph nodes to be positive for PTC. It takes time for nerves to regenerate. It took about 6 months before I got most of the motion back. I started on a B complex vitamin to help with nerve regeneration. I continued taking it and I also now take Vit. D, magnesium, selenium and zinc supplements.

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What does the magnesium and selenium and zinc do?

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Magnesium is needed with Vit. D for calcium absorption. Selenium and Zinc are needed for your body to convert T4(thyroid medication-levothyroxine) to T3(thyronine) which is the active form your body uses. That is one reason why they test for Free T4 and Free T3 levels in your blood; to check to see if you are converting enough.

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Tmbriaus- I too go through many of the same symptoms, fatigue, lack of focus, digestive problems and mood swings, its all normal complaints unfortunately. I have good days and bad days, but trying to remain positive and not dread on the negative issues. I have to regulate my digestive tract with Imodium about three times a week. I found that I feel better overall on a higher dose of synthroid, I am on 200 now they dropped me down to 175 at one point and my hypo symptoms were severe so I went back to 200. You can check his tsh levels and ask the Endo if he can be benefit from going up to 200. Also my calcium level plays a big role in my energy levels and feeling "healthy". When my calcium is low I get a ton of symptoms just like when my synthroid is low so that is be official to keep that in check. With the parathyroids being removed it is critical to keep your calcium in check, I take 600mg 3x a day and calcitrol 2x a day as well, missing a calcium dose has never ice effects for me and I can tell right away when it gets low and take an extra 600. The only downfall is that I pass a lot of calcium though my urine and will be at a high risk for kidney stones but I feel a lot better on a higher dose. Good luck with everything with him. Does he have MTC?
Chad

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cadragon - As far as we know he does not have MTC. Thank you so much for the information on the calcium, I will have the endo check his levels. He is currently on the LID in preparation for his next scan. The Nuclear Radiology Tech told us about Thyrogen injections so he doesn't have to go off his synthroid. The last time he had a scan, they took him off the medicine and he had severe symptoms and was so depressed and miserable, so we are hoping that this time will be much better. His endo didn't know about the thyrogen shots, so we educated him about them, and my son will get them next week. Then he gets the tracer pill and the next day the full body scan to see if the cancer has spread anywhere. Of course we are praying that it has not spread and that the last ablation got it. I commend you for your attitude in trying to be positive in a negative situation. Thank you so much for sharing on this site. It has helped me more than any information we got from doctors. It has also helped my son know that there are others going through the same thing. He often says others just don't understand what he is going through. God bless you. I will let you know how his results turn out.

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cadragon- did you have any pain in the area of your liver? My son has fluctuating bilirubin counts and pain in his upper right side, he says under his rib cage and more frequently and recently abdominal pain.

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Yeah as far as pain they call it flank pain and is always on the questionairs they give you.
I get it more on my left side bu the liver is big and can have disease at different spots. With me bilirubin is always elevated, and alt and ast are always within range. I read somewhere that bilirubin was the true marker for liver damage (disease in our case). Did he have any lymph nodes removed and tested? If so and you got positive radiology I would def have them start doing some imaging. In my case I went years before anyone even mentioned the possibility of liver mets being involved in my elevated cancer markers( calcitonin in my case). You have to been your own dr at times and bring everything to the Endo's attention just like you did with the shots. Once are appointments are over the docs are on to the next patient, so we are left to deal with things until the next appt. I always have a list of notes and concerns for each appt. another bit of advice would be to have your son write down and keep a log of symptoms and times as well what he was doing before symptoms started. This helped me a lot going thru everything because you may notice a pattern or situation that will bring symptoms on and this is all valuable info for your dr visits. What type of thyroid cancer was it?
Chad

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I definitely agree with you about having to be your own doctor. I am amazed at how much I have learned from you and how hard it is to get the endo to listen to me. Today my son went for his tracer pill and they didn't receive the right one, so they improvised and gave him the same radiation pill he got for his ablation treatment, but at a much smaller dose. When I questioned him about increased radiation he said it was slightly more than the normal tracer pill and that he now has to have his scan Friday instead of tomorrow. I also told him about the right flank pain and asked them to check his bilirubin again and calcium levels and he told me to have our primary physician do that. 6 months ago, he was mad because I had our PCP do blood tests and the bilirubin was found out of whack, and I questioned him about liver damage and he said in all his years of being an endo that he had never seen anyone with papillary thyroid cancer metastasize to the liver, and only had seen follicular thyroid cancer metastasize to the bone or lung. So I am going to have the PCP do blood testing. The endo said that I also may want to contact a gastroenterologist to see if his pain is from GI problems. Thank you also for the recommendation to start a log of when he has his pain, where, and what he is doing. I think that will be very valuable. I wish we had found this site earlier, it would have alleviated a lot, but I am so thankful we have ongoing information now. His cancer was Papillary, highly vascularized...I don't remember how many lymph nodes were positive, but his tumor was 3.5 cm and the surgeon said it was very difficulty to remove because of the vascularization and it was deep. He was able to save 3 of the 4 parathyroids. The surgeon was absolutely fantastic.

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cadragon - just wanted to let you know that my son's WBS went well today. The radiologist said "everything looked fine" see you in 6 months. I asked him about the Right upper quadrant flank pain, he looked at the scan again and said "everything looked fine" and that I probably should see a GI doctor, so I guess that is our next step. I want to thank you for all of your help. Please let me know how you are doing from time to time. When is your next scan? and just as a side note, how often did you have to get scans?

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great news! Thats the best thing we can hear "everything looks fine"! My next scan is Nov.18, I am in the process of re-staging now and prepairing for treatment. For me i have liver involvement and that rules me out for surgery. So my options are vandetnib (oral chemo) that i would need to take daily until progression begins again, or Embolization which they would go in and burn one tumor at a time until they start to receed. Unfortunitly i have no cure at this point and our goal is to slow the growth and live with "progression free disease" as they call it. Meaning they can not remove the cancer, it will alweays be there we just need to keep it from growing.

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cadragon - we will be praying for you daily and that the scan will show no growth

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