Tuesday night ramblings

Actually it's Wednesday morning since it's 2:23 a.m. but I doubt anyone is going to argue.

It's just been one of those days. Spinal cord shrieking, lungs crying out to be let go. I was able to sleep and escape for a couple hours this afternoon, which was a blessing.

I crocheted the 6 squares that will make up the 3rd panel of my daughter's blanket. It's coming along nicely and is a good way to try to distract myself from the pain.

I took a poll/survey today with some friends regarding our age. Sometimes the seemingly smallest of things can play with my heart. So I'm 30. My birthday was earlier this year. I'd hoped to have a big day, maybe over the weekend or something. Nothing really happened in that regard but my home group took me and the kids to Applebee's, which was a nice treat.

The poll today though, it's hard to explain. I guess it relates back to the birthday because there's a feeling inside, something I am thinking is jealousy. My friends put their answers, scattered across the decades, and I see them and stare in silence and just wish to reach 31. DH knows though it is not at all costs. Having been on life support before, it is not something I am willing to go through again, especially with this combination of incurable disorders and tumor impacting my brain stem like this.

I should hear from the Dallas surgeon in another day or two, provided the hospital where the cardiothoracic surgeon is located actually faxed the notes. He told his nurse he will call me himself, so I'm very curious. I added a couple of links to the thoracic outlet section on the right--one on quality of life, and other an article from the Mayo Clinic.

Guess that's enough of me rambling in the middle of the night. Hopefully I'll get some naps in later to make up for right now. I have no plans for today, not outside the house anyway. I'm going to check up on the faxing issue and do lots of crocheting.

Vascular surgeon in Dallas

I decided to just call the Dallas surgeon instead of sending a fax over the weekend. I spoke with his nurse, who was very kind. She gave me her fax number and asked me to get the records from the local cardiothoracic surgeon. While I made some phone calls back and forth between the upstairs and downstairs portions of the hospital (seems there is going to be difficulty getting the records sent out, seems as how the surgeon here doesn't have his records dictated, he leaves them as handwritten notes), the Dallas nurse talked to the vascular surgeon about the situation.

She called me back and let me know he was expecting them and once read, he will call me back himself and tell me whether or not he thinks he can help. That way, she says, I know whether or not it's worth making a trip.

We'll see.

For now, I'm trying to make arrangements for all of us that are going to be in Phoenix/Tempe for the National Brain Tumor Foundation fund-raising walk on Saturday. I look forward to all of us being together. I'll try to get some pics of all of us.

I finished the first panel in the Babette blanket for my daughter. Of course, it was the biggest square in the blanket at 12 inches. The rest are of varying smaller sizes. I'm glad this one is over. There are only a couple hundred left, haha. But at least the 12 incher is done. it was getting a challenge to handle. The little ones will be so much easier--well, I think. There is a progress bar at the bottom of my blog to keep an eye on the progress. I will post pics along the way, in between progress bar changes.

On another neat note, my blog was approved to be part of the Medical Blogger Patient Code of Ethics. They have a category for medical professionals and another for patients, and do a review of the websites to see if the code of ethics are being followed by the bloggers. I am really happy to be part of this.

One NY update

I was talking to a good friend today about the conversation I had with one of the neurosurgeons in NY who called earlier. He couldn't believe about yesterday. He said the thoracic outlet surgery has to be done, but that if the cardiothoracic doctor said he wouldn't do it wouldn't of the Ehlers-Danlos, then maybe he was doing us a favor and we'll just find someone else.

He emphasized that leaving this alone is completely not an option. He said the two of them that I saw the last NY visit were "impressed" with the symptoms I had from it. (All they told me then was they were sure I had it and I needed to call a surgeon when I got home; if I knew the extent then I wouldn't have put it off for 2 months.) Hee said leaving this untreated is serious enough that it alters the vascular, arterial, and the neurological system. He said it's the first thing that needs taken care of right now. I didn't expect that.

Cardiothoracic

I called the surgeon's assistant back today since it has been several days since we had last spoken. She'd promised someone would call me the next day and that didn't happen. She put me on hold, saying she would check my file to see if the surgeon put a note in there about me or anything. She returned, saying she couldn't find any of my reports, nada. Can't say I'm surprised. None of my calls with her has gone according to plan. We decided it best for me to come in and talk to the cardiothoracic surgeon on Monday and get the information straight from the source because obviously I'm not going to ever get it from her. He rushed me into testing and for two weeks now she hasn't been able to handle getting him my results so we can move forward to surgery.

Change of plans

I did the chest CT with the iodine and had to the hold the arms-over-the-head position afterward until Dr S came out to talk to me. I quickly had no feeling in them so was relieved when he came in and gave me permission to move. He's the vascular interventional radiologist that the cardiothoracic surgeon from Monday wanted involved. Dr S was not comfortable continuing on with the next component, the angiogram. He had been watching the CT and said there was definitely arterial compression but wasn't sure yet there wasn't something else going on. He asked me what the cardio doc did on Monday and I showed him, also mentioning briefly about the CM/EDS/etc so he tried the test himself and when my pulse disappeared he agreed the angiogram does for sure need done. However he hadn't been aware of the Ehlers-Danlos Syndrome so he still wasn't comfortable continuing with the angio right then, not until he had a talk with the cardiothoracic surgeon about what was going on and getting my full history so it can be done safely. He also wants to talk to him about the possibility of a venogram.

So, for now, the vascular doc and the cardio surgeon need to have a chat and they'll call me and schedule the angio and possibly a venogram.

I came home yesterday and my ICP started feeling messed from up the length of time on the table. With the second decompression the craniectomy was expanded to a pretty hefty size and every since then, anything touching it at all bugs the heck out of my ICP--laying on a pillow, table, comb, whatever. They took quite a few series of scans with my arms in different positions, each time the IV auto-injector releasing more iodine (love the "Did I just pee my pants?" feeling, ugh, but I understand gadolinium just doesn't cut it in imaging like this). I slept a bit and felt worse when I got up, was out of sorts the rest of the night. Feel a touch better today, intracranial-pressure wise. Good thing. I have a committee meeting via phone in about 40 meeting for a CM/SM group.

We have parent conferences for both kids this afternoon. Yesterday before going to the hospital, we had DD's meeting with the teacher, behavioral specialist, and principal to work on her 504 accommodation plan. Hopefully this will help her be more successful in school. Fingers crossed.

I will post when I know more on the testing schedule, and if they tell me any more on yesterday.

Angiogram tomorrow. Denial.

My angiogram that was scheduled because of yesterday's findings at the cardiothoracic appointment is being done tomorrow. I feel like I've been thrown into a whirlwind. I'm trying to drown myself in things around here today. My own little method of denial I guess.

The Golden Girls had a good bit on it once in an episode:

Dorothy: Rose, I am not in denial.
Rose: Yes, you are. You're just denying you're in denial.
Dorothy: Rose, honey, I am not denying I'm in denial.
Rose: If you're not denying you're in denial, then you're in denial.
Dorothy: Look, fluffhead. Why should I deny being in denial? I never said I was in denial, YOU are the one who said I was in denial, and don't you deny it.

Cardiothoracic doctor appointment update

I spent 3 1/2 hours at the hospital this afternoon, being shared between the director of cardiothoracic surgery along with one of the fellows/cardiothoracic resident docs. They confirmed the thoracic problem that the neurosurgeons TCI/The Chiari Institute were sure they found in July when I was out there.

The surprise was that today during the exam something quirky showed up which indicated vascular involvement. One doctor went and got another and took a look. They had a doppler brought in and tried that out. They confirmed that I'm in the 1-2% of people with this thoracic issue that manage to have the vascular form.

They stepped out again to call a third doctor in another department. After coming back in, they said the third doc is interested too (apparently in me as a 'subject') so they are having him do an angiogram. It's basically to make sure that nothing is physically IN my artery causing the compression.

Guess I should backtrack. If I turn my head less than an inch to the right, I lose ALL blood and oxygen supply to my left arm. The artery in my chest near my neck is being compressed, obviously severely. Apparently most with this disorder are bulky, weight-lifters, athletes, etc. In my case, being thin and lanky (and never a pro sports player) they think it's the Ehlers-Danlos Syndrome making my loose joints sag down and compress the artery (and vessels, etc in the outlet). When my head goes just that slight bit but to the left, the flow to my right arm (opposite of what is described above) is diminished, but not in any danger of losing my arm like I am the left.

The Doppler was just amazing, how absolutely instantaneous the loss of my pulse was. The sound of the heart beat in my arm filled the room, and the very second I moved my head over the length of a fingernail...sheer silence. We all just looked at each other. One surgeon said to another, "Did you get that???" They started checking all over my arm with the doppler and there was just none, anywhere. Meanwhile my head was still ever-so-slightly to the right, they're still searching, and the compression was taking its toll. My heart started pounding, heart rate skyrocketed, couldn't breathe. I didn't say anything, just sat there. They had me put my head center and WHOOSH my pulse came flooding back and so they obviously heard how insane my heart rate suddenly was. They had to do a lot of tests with the maneuvering and such but because of what the compression was doing with my heart rate, they kept having to stop and take a listen to my breathing and make sure things would improve.

Before leaving the exam room, the angiogram and CT were scheduled for this Wednesday morning at the hospital. The third doctor they called in is doing it himself. They want to get an up-close look before cutting anything. No argument here. I'm all for good looks before taking out my ribs and sections of muscle all too close to my heart and jugular and all that critical juicy stuff. Good grief.

I'm glad to have answers, and boy did TCI call it, though admittedly I hoped they were wrong since this isn't even a neuro problem, it's a cardiothoracic problem, and a rare one at that. Figures. I don't know any surgery date yet or anything, just wanted to share about the appointment today and that they're getting me in for another test in 2 days.

I was very comfortable with them, as was my friend Nicole who went with me (my Chiari neighbor who also goes to NY/TCI). They were really very nice and completely thorough.

Appt today

I have the surgical consult with the cardiothoracic doc this afternoon. Can't wait to get this over with. I was talking with my husband this weekend about it, saying I feel like after the last few years I'm sure I can go head to head with most neuros, but this appointment has me unnerved. Strange how after all this, a doctor appointment can make me feel like a big baby again.

Cardiothoracic, normalcy, hiding out

I was able to do some straightening around here this morning, just counter top stuff but it was nice to do something "normal." I started a load of laundry, which is the easy part. Getting it finished is always the hard part and who knows when that will be! Could be days, just staying in the dryer until I need it for the next load LOL. It's such a change from my old OCD style. It's funny how things change, isn't it? Life throws you a curve ball and you learn pretty quickly to just do the best you can. And you know what? It's ok. You learn what your priorities really are.

I spoke with a friend of mine yesterday who works at the same hospital where I'll be seeing the cardiothoracic surgeon a week from today. Upon learning who the surgeon is, she had a tremendous enthusiastic response. Apparently he's one of the best docs in the country. I have a great amount of trust in her and feel a lot better now about next week, other than the usual anticipation and nerves. A search this morning brought up tons of links on him. I'm looking forward to getting it over with, though who knows what's going to come of this.

There has been discussion lately at the American Syringomyelia Alliance Project message board on difficulty dealing with things, the feeling we experience sometimes of wanting to just hide away. It has had me thinking of the Third Day song, When the Rain Comes. I go through the same thing as the others, wanting to just retreat. Often I don't want to intrude on others and be a burden, moreso than I already feel I am. Logically I know this really isn't the case, that people do want to understand, be a friend, and help in whatever way they can, even if it's just to listen. It's hard though to break the cycle of keeping things in, of hiding out, even if it's for the best. But the song rings true...

When the Rain Comes, by Third Day

When the rain comes
It seems that everyone has gone away
When the night falls
You wonder if you shouldn't find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do

I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away

When the rain comes
You blame it on the things that you have done
When the storm fades
You know that rain must fall on everyone
So Rest awhile
It'll be alright
No one loves you like I do

When the rain comes
I will hold you