It's been almost a month, and life has been nothing but a blur of medical appointments. Between me, and Buddy....and the dentist appointments for everyone. I can tell you, even with medical insurance, the co-pays add up! I think it would be different if all we had to worry about was yearly physicals and a sick appointment every once in a while. But with all the injuries and medical conditions and ailments, it gets overwhelming. Anyhow, most of this is going to be about Buddy.
Buddy has been in such pain lately, so much that he has not even been able to make it to school some days. With the most recent day he stayed home, I decided it was about time he went to see the doctor again. Some of you might remember that there is a standing difference of opinion between doctors. "Doctor #2" feels he needs surgery to correct the issue, a break at his L5, resulting in a slippage. The surgeon, "Doctor #3", feels there is no problem (despite the test results) and that my son is obviously "manifesting his pain through depression." Anyone who knows Buddy would know that this is not the case. He is not depressed, and is one of the most goofy and happy kids there is. Of course there is normal teenage drama, but what teenage is not going through hormonal changes or tries to defy authority?
"Doctor #2" thought the surgeon's diagnosis was silly, because he's never seen signs of depression. (Plus, you know, they are orthopaedic doctors, not therapists!) Anyhow, at this most recent appointment, "Doctor #2" decided it was time for another spinal injection, which will be taking place on Tuesday (tomorrow.) In the meantime, because of the degree of disagreement, he is also referring Buddy to a new spinal surgeon outside of their practice. I am hoping that this new doctor will be at least able to give some more insight on Buddy's condition, and maybe be able to end the standoff between the doctors. (Right now it is 2 to 1 in favor of surgery.) He is supposed to be the best spinal surgeon in the area, so... *crossed fingers* Hopefully the injection will be able to keep the pain controlled for now, until they decide what to do surgically.
For those reading who are not up to date, they have tried physical therapy (twice). The 3rd doctor also put him in a back brace, which the second doctor said forced him into a backwards extension. (Which was another source of disagreement. The brace made him hurt worse, which the 2nd doctor said was understandable, because of backwards extension. He honestly did not understand why the surgeon even suggested that! I think that was one of the key factors into the referral to a different surgeon...) He has also had one previous injection, and can have up to 3 a year. I know that sometimes friends, family, and even strangers comment on posts or send emails. I just want to head off that line of suggestions before they start.
But if anyone has any other options, let me know!
He will be seeing this new doctor (which I can now call "Doctor #4"?) next week. Keep him in your prayers and thoughts!
Well, some good news for a change. The insurance mess I mentioned previously has been resolved...kind of. They did (FINALLY) retro us back to January of 2011. (Come on, it WAS their mistake. I don't understand why we had to take it to the union to get them to do that!) But now comes the headache of re-processing all of the old bills to get refunds where we overpaid.
Other good news: a letter came from Social Security yesterday. It was a CC of one sent to my lawyer. SS is reviewing my claim before it goes to a hearing. Apparently, if the lawyer gets all of the information to SS that he has compiled, they might approve it WITHOUT a hearing! This will be SO great if this happens.
As for me, medically, I'm hanging in there. My migraines have been hitting me non-stop for the past two weeks. I am see my PCP tonight, and hopefully I will get maybe a change in meds. Or, possibly, a referral to a neurologist to tweak the meds better. I am still not getting much sleep. Maybe a sleep aid of some sort?
Speaking of sleeping aids, Sierra has the lack of sleep issue going on, as well. The doctor is making her take melatonin. (It is over the counter, but I am afraid to take it myself without having it interfere with all of the other meds. I will have to talk to the doctor about it.)
Brian: He underwent the surgery in his hand to have the plate removed a couple of weeks ago. All went well, and he just got the stitches removed this week. He did have issues I yelled at him about, though. *LOL* The doctor and nurse in the hospital, post-op, said he could not do anything with the wrist until his post-op visit in 2 weeks. Well, my husband decided that working on his boat was okay. He came in the house with oily black grime all over the bandaging, just days after surgery! Considering he could not wash the area, I was so worried about him getting infected. MEN!!!!
Buddy: Still the same on the back issues. The lump was ruled out to be anything bad through various tests. So, they are pretty certain it is enlarged because of his acne. Because of this, he has to be more aggressive at treating it. And it annoys him, because his attitude is "no one cares about my acne except you". To hear the doctor yelling at him about it...it kind of gave me a bit of satisfaction? At least someone is backing me up, because sometimes getting Brian on board to fight Buddy on that subject is like pulling teeth.
Kenzie: She has not seen the doctor yet, because she is not accepting new patients! Wow...now we are in the process of trying to find someone else. The PCP is not much help in this, saying that the doctor we were referred to is the only one they really know of. Complications...
But, because we always need to have something added to the mix, we got served with lawsuit paperwork. Apparently the plow that HIT BRIAN is suing him for "being in the way"? This is all we need right now. Thank God for the insurance company, who is putting the lawyers to work to try to settle this whole thing.
Well, that is hopefully all the is to report for now. ![]()
Once again, it has been a big gap between my last posting and now. But, boy do I have some updates! You know, "You take the good, you take the bad..."
To start with, in general for everyone, we have had a big mess with our insurance. We did not discover the full scope of wrongdoing until this year, but apparently in January of 2011 my husband's lovely employer switched us out of our Aetna plan, which was a MCN, and into a PPO. Naively, we thought that the MCN was just renamed across the board. Over the course of the year, however, we started noticing changes. It started with little things, like physical therapy appointments. We never really paid for them before (and believe me we get a lot of those services in our family) but suddenly we were being sent bills. We chalked it up to the company deciding to make us pay something out of pocket for a change. We were annoyed, but still thought it was in the realms of "normal". The we started getting drastic bills for medical devices and supplies (Buddy's brace, my ankle brace, Brian's sleep apnea CPAP, etc.) It was around January of this year that my husband advised a co-worker that the "new" rules of the plan do not allow for free physical therapy. The co-worker argued about it. When my husband took out his card to compare, we realized the co-worker still had the same MCN we thought had "went away". So did everyone else. Why were we the only ones switched?! When he complained to the insurance, they said we were changed in 2011. So he called benefits...and was informed we WERE changed, but they had no record of us doing anything or requesting it, which we didn't. They outright admitted they have no clue how we were singled out, but it happened. Meaning, everything we have paid for a year has been BILLED AND PAID WRONG! First we were told that since we didn't "notice the mistake" for over a year, we might only get it fixed now going forward. A talk to the union rep told us otherwise. So, first we got it retro'ed to January of 2012, and then finally to January of 2011.
Some good news: the lawyer called me today! It seems he is doing a last compilation of information for my disability trial!!! He said he expects to get a trial notice (which is sent one month before a trial) sometime during March or April. Hopefully we will see the end of the whole mess and finally get an answer, since I first put this in motion in 2009. Seriously, though, how do they expect people to wait?
As for me, medically, I have been to some of my regular doctors appointments. A trip to the oncologist reveals I am still in remission. (*Happy dance*) My numbers are good on my CA125, and physical exam was good, as well. That alone allows me to let out a big sigh of relief. Of course, the breath gets held in again in 6 months, but I can just enjoy these little things as they come. Also, a trip to the endocrinologist reveals my Grave's Disease is also in remission! I am off the meds for that! Everything else? It is stable. I still have all the underlying conditions: Fibromyalgia, CFS, Asthma, Migraines. Also, I am still using the crutch (and also relying on a motor scooter for some day to day tasks) as my foot is not improved. I can hopefully get that physical therapy in now that the insurance issue is settled. (There was no way I was going to go while they would incorrectly bill me!)
Brian: His hand healed nicely. Weak at times, but otherwise nicely. He does, however, have to undergo surgery to remove that plate. Because the break was in a bad spot, the plate had to be in a bad place, as well. Keep him in your prayers!
Buddy: Well, the drama continues. At 16, the doctor feels that surgery is inevitable at some point. However, they want to hold off as soon as they can on the spinal fusion. He is young, and still growing. For now, he had the one injection already (see previous post) and will have 3 per year going forward. He is completely restricted in gym, pretty much for the rest of his high school career. He also cannot lift anything at all. He is in the process of getting special permission to have his backpack eliminated. Instead, he will leave his books in each class, and have his books digital when possible. (One class, which has a college level textbook, will allow him to keep an extra at home.) So we are looking at a tablet for him to make it easier. But, it is hard. He actually stayed home today, as he was in so much pain waking up this morning. Add that to the fact that I took him to the doctor because of enlarged lymph glands yesterday...and he is not a happy camper. (They have been there over a month. Ironically, the doctor is suspecting they are related to severe acne, which he slacks off on treating.)
Sierra: Some good news. Sierra's migraine doctor gave her some meds which will help with the Fibromyalgia. Apparently, the primary care is just acting cautiously by waiting until she is 18. The dose she started on was mild, so not much relief yet. But she is returning soon, and we will hopefully be getting her an increase.
Kenzie: For once, something to report! We are in the process of getting her a diagnosis, as the school therapist feels she has the signs of ADD. So, we will see. But, I am very anti-ADD-medication, so I am concerned on where this will all lead.
And, finally, I happy to report that I have the taxes done early this year.
Once less worry off my mind!
Hopefully more updates soon!
I just have not gotten the chance to update on Buddy. With my last update, I mentioned he was going into a brace. Well, after paying the co-pay on this brace, and having it custom made, he complained the pain was worse. So just like that, the doctor took him out of it, and that pretty much ended up being money down the toilet.
Let me break off and say at this point that I just do not like "Doctor #3" (I will refrain from saying his name, only to prevent any issues in my son's care.) Buddy was referred to this doctor for a surgery consult, and was slapped into a brace, instead! (Which...obviously did not work.) "Doctor #3" just has one of these attitudes, a "holier than thou" and just gave me a bad impression from the beginning. He just has no talking skills or bed-side manner!
This last appointment with him (which, incidentally, will be THE LAST) he told me that my son does not have Spina Bifida, arthritis, OR a slipped disc. HUH? He asked me who told me this. I went on to say.... "Doctor #1", "Doctor #2", the hospital's radiology department, my primary care practice, and not to mention the x-ray report I physically gave this office when I was referred FOR SPINA BIFIDA OCCULTA. He spent like 5 minutes dumbly flipping through my son's chart, and telling me he sees no indication, and that I have been "grossly misinformed". He went on to tell me my son has a "fracture", but his pain is "not consistent" with his issue. He then sent my son out of the room. His condescending attitude actually got worse at this point, and he asked me if my son was depressed. Anyone who knows my son can tell you he is a goofy, wacky, happy-go-lucky person. Depression? Not likely. The doctor says he is "highly concerned" my son is depressed and fears for his life and well being. WHAT?!?! He suggests I take him to my primary care ASAP to get him properly diagnosed. He goes on to say that his "Depression" is "manifesting his pain", and the pain is certainly not coming from his back. At this point, I pretty much had a permanent frown pasted onto my face, and was quickly losing my patience. Last I checked, this guy had a degree in ORTHOPAEDICS, not therapy! *LOL* So he suggested my son go back to "Doctor #2" for a spinal injection not to help but to diagnose. If the injection brings relief then the pain IS coming from the back. If not, then basically either my son is delusional, or they have to try and figure out what is causing the pain. By the time this comes out, I am thinking, "Awesome, let's go back to Doctor #2, because if I have to put up with you anymore, I think I will hit you."
The following week, my son went back to "Doctor #2". He looked at the chart and explained what the injection would do, and that it was pretty much a surgical procedure similar to an epidural. When we mentioned about what this other doctor in the practice said, "Doctor #2" was kind of stunned. He had dealt with Buddy for a while, and never has seen any indication of depression. And he went on to say that the issue going on, the most recent test DOES show a fracture. So the other doctor was partially right. But "Doctor #2" felt that it was the reason for his pain.
So, yesterday we went in for the procedure. Buddy did very well. However, "Doctor #2" came in to talk to us while he was in recovery. During the procedure, they were able to get a much better look at the situation. The "fracture" is a full blown break at the L5 section. That is what is causing his pain. And the break is much worse than the x-rays, MRI, and bone scan showed. "Doctor #2" is almost certain Buddy cannot recover on his own. He will need surgery to fix this. That being said, we refuse to go back to the other guy. So, hopefully, "Doctor #1" will be able to do this procedure.
The whole "too many doctors' hands in the pot" thing is kinda confusing.
I am really hoping we get a resolution to this soon!
A new year begins, and hopefully things will start turning around for us soon. There really is no new progress for me. I will be starting physical therapy again, soon. But there is really nothing as a particular reason. I guess the doctor figures it won't hurt. My immune system is the same...pretty bad. *LOL* I'm sick again, which is pretty bad timing. But, anyhow, it is really just the normal stuff for me. Onto the others:
Buddy: His new doctor actually decided against the surgeries for now. But, he will have to wear a back brace for about six weeks. He just got it on Friday. I dread what he will be going through in school. I guess he is a bit happy, though, to be free of gym for a while. But...it also meant the obvious exclusion of the musical. Obviously, the PT has been put on hold, as well.
Sierra: They've pretty much decided she has Fibromyalgia, as we suspected. All of the tests came out negative for other stuff. Unfortunately, the medication for Fibro is not yet determined to be safe for anyone under 18. So, medication-wise, she has about 3 years before she can get some relief from Lyrica or something similar. For now, they are trying her out on OMT once a week. They are seeing how it works. It is frustrating, as a parent, to know your child is in pain with the same things you have, and you are helpless. As an adult, I can take the medications she is being denied. Simple things that a normal kid takes for granted are an everyday struggle for her. All I can hope is that these treatments will give her at least a bit of relief. Beyond that? She is in God's hands.
Brian: He is doing SO well! The physical therapist is very surprised at just how much progress he is making. He sees the doctor in a little over a week, so hopefully we will get some good news on the healing of his wrist. As for the lump, it ending up being a hematoma. He went into interventional radiology to have it drained a few weeks ago. Unfortunately, he came home with a drain. He is handling the care of it a lot better than I expected. I think, perhaps, seeing me go through multiple drains over the past few years between an abscess and post-op, it puts things in a better perspective for him and he is more capable of handling it. But, the fluids are not diminishing as much as I'd like. So we will see how it goes! He is getting stir-crazy being stuck not working. So I hope his doctor clears him soon to go back to work.
Kenzie: Once again, she is the healthy one out of the bunch! She is also such a big help to everyone else.
And considering she is the only one of us who can bend to pick things up without difficultly, she helps a lot more than she realizes.
I hope to have more updates soon...
:: Next >>