Methadone & Medigap

I saw Pain Man on Thursday and thanks to a combination of sleep deprivation, exhaustion, mind-boggling pain, and desperation, he ended up sitting with me for 40 minutes while I cried. Long story short, my current meds schedule (narcotics & muscle relaxers every 4 hours around the clock) is staying the same, but we added Methadone. Hopefully adding the latter to my regular dosage of other opioids will help take the edge off.

So far, there isn't any pain relief with the Methadone but I have been getting some rest here and there. It really isn't at night, which is nothing new, but instead I'm getting an hour here and there. I'm not complaining, I'm grateful. Those couple hours are already making a big difference in my mindset. It takes 5-7 days for the Methadone to build up in the body and reach the level it will stay at, and I only started taking it Friday night so I still have several days to go before I may see a difference in the pain.

On day 8 I add an additional dose at mid-day so I guess I'll go through another adjustment period. But if it works, that's ok.

I am currently in underwriting for a Medigap policy. I don't know how we're going to go without the $184 a month, that's more than our monthly grocery budget, but it's a necessary evil since the only other option is their no-deductible policy, which is $345 a month (the 184 a month has a $1900 deductible). I hope it'll come through and be approved--of course they had to ask if I had any brain disorders--as I need my CCF redone and extended, and it's looking like I'll need the right side taken care of for the bilateral arterial TOS. I knew it would have to come sooner or later but I was hoping for later! I think I ended up accelerating it a bit with all the crocheting I'm doing, but such is life. I'm not giving up my sanity saver.

Oh and boy has this been a great year for contests around here! I won those NHRA drag racing championships tickets a couple months ago, and last week DH won Rage in the Cage tickets! We are so excited! It's this Saturday. It's going to be awesome!

Ehlers-Danlos, Private Enemy #1

Four days ago I started having stabbing pain on my backside, half-way between my shoulder blade and my spine. Yesterday it became tremendously worse. This morning, it was terrible and when I used a mirror to take a look, I could hardly spot my shoulder blade through all the swelling.

X-rays didn't show any fracture but it did reveal that the bones are not meeting meeting together properly in my shoulder joint. One of the bones is also extremely small and thin. They said it needs an MRI and wouldn't be surprised if it needs surgical repair.

When going over my medications they learned I see a pain management physician so they called him to ask what to do about a prescription so as to not violate my contract. He discussed Ehlers-Danlos Syndrome with them some more, and had them wrote me a script to add another narcotic to my daily grind. He's having me come in Tuesday.


Thursday I will see the orthopedic surgeon who handles my hip.

I'm supposed to be immobilized in the sling until then. Don't think so!

"Weird-Ass Diseases" and Mike Rowe

I had my appointment with my pain man today. He is wonderful, very compassionate and honest. First and foremost he wanted to know what happened with my trip to the neurosurgeons in New York. I told him he was right about the EMG test the local hospital did being completely wrong; I said NY redid it, and strongly suspected Thoracic Outlet. He immediately went, "Oh, no no no, you don't have Thoracic Outlet. There are two kinds of it. There's functional, and true. Functional, it's fine and people don't have to do anything. With true, it's really rare and there's a problem with the artery and diminished pulse in the arm."

I looked at him and pointed and went, "THAT'S the one!"

His jaw hit the floor. He said I HAD to be kidding. I told him about last week's appointment with the cardiothoracic surgeon and not being diminished in the arm but have complete and total loss of pulse, Doppler confirmed, the vascular doc and chest CT.

True to his nature--honest, blunt, but always willing to stick with his patients--he just shook his head and said he was just shocked I had this, that "lightning struck" me or something, that he wanted to check his books because although Chiari is fairly common, a "TRUE" (arterial) TO is very rare and he's sure there is no documentation of a patient having both combined.

My favorite quote of today though is when he said this was going down in the "Weird-Ass Diseases" collection.

Sigh. I was given a stack of prescriptions, some pain, some anti-seizure; an order to check my liver function because of all the stuff I have been taking for so long. I'll do the liver panel tomorrow. He's adding (the painkiller) Dilaudid a few times a day to take at the same time as the Zanaflex, a titration schedule to get off Topamax after the last couple years, a titration schedule to add in (anti-seizure med) Depakote. The Topamax will take a couple of months as I'm on such a high dose and I have insurance issues, and the Depakote will take 3 weeks. I plugged in the titration schedules on my PDA because one look at all the varying info, changing every few days, and my brain about had a spasm. I'm just glad at least my other meds stayed the same. I really needed that painkiller change though. Fingers crossed for pain improvement.

Tonight my show is on, Dirty Jobs. I pretty much spend my days baby-sitting my recliner. I read a lot, and help newly diagnosed patients who are sent my way online, but as for the quiet time, the only thing on tv I watch is Dirty Jobs. It's the first show I have watched since Quantum Leap went off the air--ha! Ok, I watched an episode of FutureWeapons this year but all of my friends know it's because my dear brother was on it! You can't beat that! Dirty Jobs though, Mike Rowe just gets me in stitches, laughing until I can't laugh any more and my cheeks hurt all night. In a life where laughs can be few and far between, I take great joy in Mike's sense of humor and new shows on Tuesday night on Discovery Channel (and of course I can't miss daily reruns, no matter how often I've seen them).

Pain as an understatement. DD's sleep study #2.

It's been a horrid night. I had a Chiari headache this morning but thought I'd be able to get it under control. Nicole came over so we could go across the street for our neighbor's Pampered Chef party at 1. I took a few meds and they kicked in quickly. Within about 90 minutes it had rebounded pretty badly.

I went home and reclined for about 30 minutes. I got up suddenly and crawled into bed. I didn't realize I never said anything to my husband, kids, or J until DH came in to see what happened. Next thing I knew, a few hours had gone by. I came out to the recliner again being beaten with a sledgehammer, needing to focus on my speech to get my words out right. I hit OxyContin and after an hour there was still no effect so I added Zanaflex. I can feel a little bit of warmth and tingling from the combination right now, a slight bit of relief but good grief. Getting hit with a sledgehammer would be a good distraction about now.

Distractions. That's what I've been trying to do. Distract myself.

My 5 year old's second sleep study to determine how to get her oxygen levels under control is set for the night of October 3rd. I'm so glad we're finally getting close for some relief for her after all these years. We also had her 504 plan worked on at school with the teacher, behavior specialist, and school principal. It went really well and hopefully she'll have a much better second quarter now that the first one is wrapping up.

Here's to the hope that Sunday will be a much brighter day than today.

13 surgeries and you'd think I could handle anything by now. But here I am at 3:08 am writing this. I couldn't stand writhing in bed in pain any longer. The last 5 1/2 hours of it was enough. It was getting a little ridiculous doing that since the moment I climbed into bed. I'm exhausted, eyelids heavy, but this pain radiating all over my torso and spine is unbelievable.

I don't know what's happening and I'll say it.

I'm afraid.

Ehlers-Danlos strikes again

Well I'm not a whole lot closer to answers. There's a lot of this-and-that so I'm just going to sort of toss it all out there there as best I can from my scattered head.

The mid-spinal issues (below my hardware) is from it taking the brunt of spinal instability. It's safer to leave it as-is than to go back in because of the Ehlers-Danlos.

My testing showed the problems with my hands and arms is not stemming from my spine at all (Tucson thought it was from the above situation but what they put down was apparently so weird NY redid everything b/c they didn't trust the local hospital doctor--neither did my local pain management doctor/neuro) but discovered a problem with the vein/artery in the side of my neck. It is not a neuro issue at all but with me it's caused by the Ehlers-Danlos. It's handled by thoracic surgeons. NY has seen it in a few of their EDS patients; they have never had a patient have the surgery, don't even suggest for most of them to see a thoracic surgeon but said my situation warrants being seen by a surgeon soon.

What was thought to be brain regrowth down into my spine (I'd had that portion of brain removed in AZ) is not regrowth at all but my brain being pushed down into it due to the cyst being so large. This is the first time I have seen it and I guess I wasn't expecting it to be this size, shape, etc. For whatever reason, I was figuring it on being this little bubble or something. Instead it's this tall, long, wide thing and is doing a good job pushing in and down on my brain, particularly the brain stem.

This type of growth is unusual and they aren't really sure why it happened or what's going on. In Tucson I'll do some testing and send it out to NY. If it's not helpful I'll go out there for some more thorough in-patient versions (continuous readings instead of one-timers). We'll see.

That's about it. Thoracic surgeon for nasty bugger going on with artery and nerves. Braces for damage already done. Tests in Tucson to be done and sent out. Possible follow-up test possible in NY. THEN they'll figure out this cyst. The big concern is still they feel there is not a very good chance of success for going in my head again, so they're looking at every possibility here in the hope of finding some answer.

I went out there hoping for some answers and a plan and instead found there's still not a good outlook, and added on another big problem. Not what I was expecting.

I'm glad to be home. My flights were all mixed up again today b/c of weather but boy, there is no place like home, family, and friends--the most important things.