Bless your heart! Thank-you so much

October 1, 2008 at 7:04 am

Bless your hearts! Thank-you so much for the prayers. I just got home from the hospital yesterday afternoon. I am having a hard time looking at the screen because of a migraine that I have had all week and you might not see me in here much this week because of it.
They removed my thyroid with success but decided to remove a few lymph nodes around the thyroid. Have not been able to talk much and my voice won’t come out but they said that might happen but usually comes back in a few weeks. So I can only whisper right now. Biopsy determined my cancer to be the very good treatable kind with good prognosis and the cancer was inside the thyroid and showed no signs of spreading. Biopsy also reported me being Hyperthyroidism with Graves Disease. I had the Graves disease Antibody. No wonder I have been so sick.

They took me out of surgery and got me to my room and then my tonsils and neck started swelling. Tonsils were bright red. So the doctor had to IV a strong antibotic and 500 mgs were given. Swelling got so bad that they had to rush me into surgery again. They removed the tonsils and part of the swollen tissue and kept me on the pulse steroids and antibiotic. Also placed a drainage tube to keep the fluid from building up. A few rough days to say the least!

Because the thytoid is no longer there and removed I then became Hypothyroid which happens when it’s removed. I was given my first RAI treament and get 1 Radiation treatment next week. This is to bring the levels down for Hypo. On Beta Blockers right now, Antibiotic and still taking steroids but a low dose of that. Medrol pack. See the doctor again on Monday of next week.
Now! The CIDP issue is still unsolved. Could be Graves but could be Lupus or it might be something else lurking. Doctor has written an order at Duke when I go on the 6th of November and he wants a spinal and nerve biopsy done to rule out Lupus or Graves and see if there is a Neuromuscular problem. Since I have two auto immune disorders now, we need to figure out which one is causing the CIDP. Lupus and Graves can both cause this issue. Told me by the biopsy that I have had a thyroid issue for quite some time and it could have caused damage to my nervous system. But so can Lupus. And the CIDP get’s different treatments for each disease. They don’t want me getting treatment for Lupus CIDP if it’s not Lupus causing the CIDP. So we have to rule out which one caused it. Then we have to look at another possible of me having a Neuromuscular disease causing the CIDP. He thinks we have our answers but wants me checked really good first before they treat me for the CIDP. If it was Graves that caused this, then because of my surgery and getting medications for that and treatment now, the CIDP with Graves is usually reversible! Meaning I would start getting better and would improve. Lupus though with CIDP requires more serious treatment. Rituxan and IVIG’s. Or another Chemo drug with IVIG’s. So I am still not out of the woods yet. I hope it was Graves that caused it. And then he mentioned that I too could have CIDP with a neuromuscular problem still lurking. Right now we are hoping Graves and so is my doctor!
My biggest fear right now is knowing how bad I got 3 weeks after my spine surgery having the attack on my nervous system that scared me to death and I have that to worry about right now. I’m doing okay right now except for the nasty sinus type of headache but it’s my surgery that is causing that. Having Lupus too you become a slow healer. What takes a normal person with no health issues to heal fast ends up taking me a few weeks to heal. My hands don’t feel as burny so I am hoping it was Graves that caused this. Keeping my fingers crossed. Ohh! After my thyroid surgery, the first two days were rough but I then started sleeping all night.. with medications though but I actually got some sleep. Yeahh! 😀
Only one other problem. I have been complaining about double vision, blurred vision and one eye hurting all the time. The doctor wants me seeing an Opthalmologist also to check my eyes. Thinks that I might have Thyroid Eye Disease causing damage to my eyes. If so they might have to do another surgery on my eyes to repair the damage. But I might be okay. He seems to be concerned about one of my eyes.
Better get offline now. This computer screen has been hurting my eyes with this headache and makes my eyes watery. Will be back in here soon.
Thank-you Dick for helping with the Football Pool!
Just want to say that I love you all in here. Each and every one of us are so special. And I am so happy that I found such a friendly family in here! If I do get better and my CIDP was caused by Graves and it’s reversible… If I get better! I think I will try and raise some money and donate it to the GBS-CIDP Foundation. I pray that each of us in here may some day see a cure!
Linda H