Tuesday, August 31, 2010


Well, it's been 13 days since surgery. I would say that this fusion surgery didn't hit me nearly as bad as the first fusion did. I prepared for the worst, again, and this isn't it. That being said, I'm still in quite a lot of pain. The new rods feel terrible, but that's normal. It's quite a weird feeling, having my old rods gone.

There's still a fair amount of swelling. I actually have what feels like pockets of fluid on either side of the back of my head. It's very strange to touch. So, I'm still icing that area a few times a day to try to reduce the swelling.

Also, my muscles are in extreme spasm. The muscle relaxants are helpful, but some intensive massage therapy will be necessary for these muscles to really let go. I use a heating pad on my neck and shoulders to help relax the muscles. Massage therapy and physical therapy will start next week.

Tomorrow, I get my stitches removed. Yay! On Saturday, I'm allowed to wash my hair! That's 16 days after surgery that I will finally be allowed to wash what's left of my hair. Luckily, my incision is closing up really well.

While on my current pain regimen, my base level of pain is about a 6. It's tolerable. Nothing like I expected based on my first fusion.

The improvements I've seen so far:
*Pupil constriction
*I can now stand with my eyes closed without falling over!

The single most important factor that has gotten me this far in my recovery is the amount of support from family and friends during this challenging time. I have never felt alone. I know how lucky I am to have so many supporters to help me through.

Sunday, August 15, 2010

Making the Switch

I'll be switching over to Caring Bridge for the coming weeks, for post-surgical updates.


Thursday, August 12, 2010

How are you feeling about your upcoming surgery?

Am I nervous? No. Not really. I know what to expect. The only thing to be nervous about is that my bones fuse the way they are supposed to this time. What I feel is much more a feeling of dread. I dread waking up after surgery. I dread the time in the hospital and all that comes with a major operation. Mostly, I dread month after month, alone in my bed, wondering if I'm going to feel that horrible forever...seeing no signs of improvement, wondering if I'll ever get any better. I dread that darkness returning, that hopelessness that accompanies unending pain and sickness, when things are supposed to be finally turning around. I dread the dark days.

"At least you know, one week from now, it will all be over with." No. One week from now, it begins again.

Wednesday, August 11, 2010

The end of life as we know it

So, in four days, we're leaving for our trip. If all goes according to plan (meaning, I get approved for surgery based on my traction results), I will go through some very traumatic times in New York. I am really worried about pain management after surgery. In the past, this has been a major concern, because of my allergic reactions to everything. I'm also worried about the usual issue of getting my GI system working again after surgery. It's an even bigger concern this time, because this will be the longest surgery I've ever had (8+ hours).

And, being a female, with very thin hair, I will be sad to lose most of it for this operation. My hair grows thickest in the area where it will be shaved. The area that I keep is actually quite sparse, so I really won't be left with much. I wouldn't care too much, except that I am planning a wedding, and I know it won't really have time to grow back.

Anyway, back to things that actually matter. On Tuesday, I will have Invasive Cervical Traction. This is a surgical procedure. I will be awakened in the operating room, so I can be involved in providing subjective information about the feel of the positioning of the skull. They will also be taking images in the operating room, so they can take measurements to determine precisely the right location for my skull.

If all goes well, I will be approved for a revision of my cranio-cervical fusion. I will be having my existing hardware removed. The bolts will have to be removed from my skull, and the screws will have to be removed from my spine. The titanium rods will come out. Next, they will begin to reconstruct a new fusion, in a new location, with all new materials. The titanium is a stronger alloy than was previously used. They will also include cadaver fibula bone and bone powder. This will encourage my bones to grow around the new materials to form a bony fusion. They will hold it all together with a wire. The goal is for a more solid fusion to be formed and for that fusion to be in an optimal location.

I am mostly just dreading recovery at this point. It's all I can really think about. With POTS (dysautonomia), anesthesia is a trigger that can worsen your symptoms, and it's really hard to come back from. So even though they say there is an expected 2 month recovery, that's not really how it works with POTS. I would say that I still haven't recovered from my tethered cord surgery 2 years ago, in terms of my autonomic dysfunction.

Hopefully, this surgery will be able to alleviate some autonomic symptoms, making the POTS recovery easier than it has been in the past. Even so, it wouldn't be strange to spend the next year of my life working on regaining my ability to be upright.

The thing is, I'm not starting out at the top. I'm actually quite ill going in to surgery, so the time of rebuilding may be very long. One to two years would not be unusual for my autonomic system to require to adjust and allow me to recover fully.

With POTS recovery, you have to walk a very fine line of working enough to start rebuilding your cardiovascular system and working too much. Even working a few minutes too many may cause you to spend days unable to get out of bed. I know because I've already been through all of this before. I've already gotten myself from a mostly bedridden state, similar to this, to a place where I could work out at a gym and drive and work part time. The problem was, I was still restricted to bed much of the time. That's because I was limited by my sub-optimal fusion in my head. This time, there should be no restrictions on my recovery.

However, I still no better than to set really high expectations for myself. I don't expect to live pain free. But I hope that my head pain level is significantly decreased. I don't know if my fatigue will improve. If it doesn't, I can always try treating it again with Narcolepsy meds. I really hope my POTS will be improved, with a combination of surgery, physical therapy, and hard work. I believe my nausea and swallowing problems are the most likely to go away. I don't know if my overall body aches could be improved. I assume joint pain is related to EDS and won't be improved. So, I'm not sure what these means for quality of life. I there was a quality of life scale at TCI. Right now I'm around 45/100. They say you can hope to move up by 20-30 after surgery. My quality of life could improve to 75/100. Is that too much to hope for? I'm so scared to be let down again by another surgery. I'm even more scared to give up another year of my life just to be let down again by another failed surgery. But I must believe that there's a chance, or I wouldn't be doing this. I'd have to be crazy to try this again if I didn't believe that it was going to help me.

But it will all start at the bottom. First the pain. Pure survival. Next, the physical therapy and massage therapy to begin moving again. Then, all the will-power I've got to fight the exhaustion and get my body working again.

These really are my last few days of the status quo. Everything will change.

I will be fighting every day to endure the immense pain caused by the surgery. No one can say how severe it will be, how hard it will be to manage, or how long it will last.

I'm as ready as I'll ever be.

Surgical updates will be posted at my caring bridge page, not here on my blog. That will allow family and friends to receive e-mail updates to keep informed.