I figured I would just skip the play by play and just catch you up to the here and now so here it is. I had bloodwork done a few weeks ago but I guess the results didn't make the doctors happy so I had to go back and have it repeated the other day. It will be about a week before we get those results back and then we will go from there. I would love to tell you what some of the results of the first set of tests were because some of them were VERY encouraging but I'll wait until we get these second results instead. I just don't want to get mine or anyone else's hopes up.
Over the past month I have been in ALOT of pain that seems to just get worse with time. Right after the surgery everything in my neck was numb so I didn't feel much. As the nerves have reconnected I've began getting shooting pains and feeling like I had fire in my veins. I've also still had some numbness and my right arm likes to go numb on me. I've tried every pain killer I have (which is quite a few at this point) and none of them have even taken the edge off much less stopped the pain.
I informed Dr. BC of this over a week ago and his answer was that most of his patients feel better not worse and he doesn't know what could be causing this. That was followed by oh it is probably the fact that my calcium dropped from 10.5 to 8.5. That MUST be it. In other words, he doesn't know and doesn't care to know. :(
Finally last week I complained yet again to them about the pain (I can't sleep or function normally) and Dr BC's office set me up with a pain specialist. I went to see him on Thursday morning and was given yet another pain killer to try. The doctor was very nice, very excited to get to meet a MEN2a patient (said he'd been waiting 15 years. LOL), and we talked about homeschooling.
He did a thorough exam and made lots of notes so I was happy with what he was doing. I have another appointment in three weeks and we will see if I've made any progress at that time. He says that all feeling should eventually come back and the pain should go away but in the meantime it's not fair for me to suffer so he will take care of me. That's nice to finally hear from a doctor.
No one has said anything about the fact that I gained 15lbs right after the surgery. It's starting to make me mad that it's not even something they feel is worth bothering with. I personally find that pretty important and plan on being a royal pain in the butt until someone says or does something about it!!
Next week is very busy for us. I finally found the kids a Pediatric Endocrinologist and they have an appointment on Monday, July 11th. His name is Dr Frederick Weber in Lake City, Florida and he has had MEN2a patients in the past. He said it's been a long time but hey, at least he's treated them before and that's better than what we usually get. I'm really hoping this works out because I hate looking for doctors for all of us all the time. Nobody gets how draining that is on me.
On Tuesday, July 12th the kids and I have bloodwork at the lab here. Both kids are getting full thyroid panels done so we can check an make sure they are on the right Synthroid dosage plus we will check their calcium levels to make sure they are doing alright. Sis has been stable the last few times we've checked so hopefully she stays that way. Big B was normal last time and I'm really hoping he is again this time. We're keeping our fingers crossed anyway. I'm getting full thyroid panels and I'm not sure what else since the other lab took blood on Friday. If I hear that my thyroid levels are normal I'm going to scream. I really am because I'm having so many symptoms of hypothyroidism it isn't even funny! I'm so tired of feeling like hell all the time.
The doctors also suspect that I am currently hypocalcemic because I have alot of facial and hand tingling. The pain specialist the other day also said he believes I'm hypocalcemic because of something with my reflexes. I don't remember what he said exactly but something about the way my reflexes responded told him that my calcium levels were low. I guess we'll see right?
Next month we all have a Dermatologist appointment on August 11th. Sis will be getting the spot on her scalp checked to make sure it is alopecia areata and that the hair is growing back alright, she'll be getting the spot on her back checked, and she'll have the keloids on her thyroid scar checked. Big B will be getting his keloids on his thyroid scar checked and that's honestly all he needs looked at right now.
I will be getting the works. LOL. I need to have my scars from both surgeries checked, ALL my moles on my body checked because they have all doubled in size since the first surgery, a skin condition I have checked, my acne checked, and some moles biopsied. Basically I'm a skin wreck. :) I figure if we're going to get looked at we might as well get it all done at once!
I'm also suppose to go back down to Tampa on July 25th to have them remove the whatever it is from my forearm but at this point I really don't want to. If I'm having this much trouble keeping my calcium levels up WITH it in how bad is it going to get when they take it out? So I'm not sure what I'll do at this point but I'm waiting until my test results come back before I make a decision.
I just hope the pain ends soon because it is staring to wear on me. It's so hard hurting nonstop. I can't lift things, or hold things, and if the children touch me wrong I almost burst into tears. I don't want to live my life like this. Hopefully once all the nerves in my neck and shoulder heal then I will be back to normal. If not... well I just don't want to think about that right now.