19 days after surgery

Day 14
Day 19


I've had some strange "side effects" from surgery that I expect to wear off after some time. Some have already begun to wear off.

First, my voice was very weak, strained, and hoarse after surgery. Luckily, this one has already improved dramatically.

Also, my jaw cracks on the right side when on open it. This is also happening less.

My right ear has been behaving very strangely. At first, it would vibrate and buzz at certain sounds. Now, it just echoes my voice and amplifies sound sometimes. Getting better.

There is a strange clicking sound and feeling in the back left side of my head with the impact of walking. I wasn't sure if this would improve, but during today's walk, for the first time, the clicking decreased in frequency.

The back of my head is still full of fluid. It is one large pocket of fluid. I have trouble resting my head at all, because of the pressure of the fluid. Still waiting for the fluid to be absorbed and the pressure to go down.

In the time from pre-surgical testing to the time I got my stitches removed, I lost 10 pounds. That wouldn't be hard to gain back, but I'm hoping to gain back more muscle than fat, so it could take some time.

On Saturday, September 4th, I took my first shower. Washing my hair was near impossible. My head and scalp are so sensitive to the touch. Just moving my hair around is painful at this point. Unfortunately, as I did wash my hair, I noticed it falling out in chunks. It was distressing. Luckily, I wasn't left with nothing. This was apparently an effect of the eight hours of anesthesia. Hopefully, I won't lose the rest of it! It seems to come out at the lightest touch.

Sunday and Monday, I began having new, sudden, sharp pains in my head. I'm sure that's just part of the healing process.

Today, I had a bit of a rough time. My vision has blacked out three times. I collapsed once. My blood pressure has been low today, around 90/70. I've also had palpitations, tachycardia, and the feeling of a very reactive heart.

I'm also feeling very achy today and my joints hurt more than they have been.

I've been feeling emotional today, too. Knowing that the POTS recovery will take a long time, and certainly wasn't "cured" by the surgery. Everything in its own time.

Recovering

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:
*Swallowing
*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.

Making the Switch

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

http://www.caringbridge.org/visit/carolynrichardson

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.

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.

http://www.caringbridge.org/visit/carolynrichardson

Big News

I have a surgery date. I am booked for Invasive Cervical Traction 8/17/10. If the traction test is positive for instability, they will go through with Cranio-Cervical Fusion Revision on 8/19/10.
My pre-surgical testing is 8/16/10. So, we will be flying into New York on 8/15/10. It is uncertain how long I will stay in New York after surgery at this time.

That's the schedule.

There's a lot of pre-operative planning to be done. All of the paperwork is done online now, so I can gradually chip away at that over time. I need to get a pre-operative physical with my general practitioner and I need cardiac approval with an echo-cardiogram with my cardiologist. I'm also supposed to have at least a few weeks of physical therapy. We'll see how much there is time for.

Plenty of preparation.

In terms of my feelings, I completely understand that this is good news. The best news I've gotten in a long, long, long, long time. My stagnant life will finally move forward. Something will change. In the big picture, this is a good thing, because my quality of life is likely to improve...eventually. When I first got the news, I was ecstatic. However, my enthusiasm was short-lived.

Please don't accuse me of being pessimistic here, because we all know that would be the worst thing in the world. I'm just human. I'm facing the scariest surgery I've had so far. I've been through a similar operation in the past, so I know approximately what to expect...torture, a living nightmare. Remember, I'm allergic to all of those wonderful pain meds that ease the process for most. And the allergy meds don't seem to help me. So I feel the full reality of what they do to my head unarmed. It's a battle.

So I know I should be the happiest girl in the world right now. But I'm scared and anxious. It's making me irritable about the whole thing. I don't like to think about surgery or hear about it or talk about it or plan for it. But I understand that I have no choice. I just don't want to be happy about it right now. I'm so glad that the time has come to get it over with. But am I really happy about giving up my mobility for the next year of my life? About facing pain levels above an 8 possibly for months on end, like last time? About being restricted to bed for several months, maybe more? After the fusion surgery, the never-ending pain pushed me to suicidality after 5 months. It's hard to be happy when facing this again.

Now, my life has been so restricted for so long. With many symptoms and much pain. And I'm about to tell the doctors to go ahead and make it worse?

By the way, if a patient does not have POTS, the recovery from this surgery is expected to be about 2 months. Unfortunately, I have POTS, which is a chronic illness. It may become "easier to manage" with this surgery, but no one expects it to go away. Any surgery causes a POTS relapse: the more invasive the surgery, the worse the relapse. This is an 8+ hour reconstructive cranio-spinal surgery. They will remove my current hardware and replace it with all new hardware and bone, completely rebuilding my cranio-cervical junction. This essentially "resets" the nervous system. That's as invasive as it gets for POTS.

No risk, no reward. Right?

So, I completely understand that this is wonderful news. I just don't feel it. The long-awaited surgery has just become very real.

Trip to New York June 18

June 18 was the big day. It was officially 2 years after my tethered cord surgery and my previous invasive cervical traction test.

Gustavo and I went on this trip. We stayed at the Variety House.

In the early morning of the 18th, I went to get new imaging done. 2 MRIs, 2 CTs, and several x-rays. Of note, we did a flexion and extension x-ray. I was surprised to find that during the extension x-ray, I was able to extend my head back all the way until it was touching my upper back, despite having an intact skull to C-4 cranio-cervical fusion in place. That's EDS for you. Super flexible!

Anyway, my appointment at The Chiari Institute was scheduled for 3:00, so of course, we went in at 6:00. We talked with Andrea, a very nice nurse practitioner for quite a while. We discussed all of my symptoms and my current condition. After that, we waited a bit more. Then, we finally went in to see Dr. B. It was his last appointment on a Friday evening, so he was very relaxed and making jokes. We got to meet with him in his main office instead of an exam room. During the visit, I did not feel pressure to prove myself to him at any time. Instead, he just explained what the next steps would be for me, in detail.

1. Need a good DEXA scan. Good means borderline normal, or a T-score at or above -1.0.

2. Need to continue treatment for bones now and after surgery.

3. Invasive Cervical Traction needs to test positive for instability.

4. Cranio-Cervical Fusion Revision will be performed.

Dr. B said that no bony fusion formed between the skull and C2, so the area has collapsed, due to osteopenia. That is the reason why the symptoms never got better, and have even gotten worse.

This is why it is so important to have strong, growing bones at the time of fusion.

Instead of one solid mass of bone and titanium, I have just naked rod connected to my bones. The area never filled in with bone.

The newest revision technique has been very successful at preventing this problem. It involves replacing 90% of my hardware. It also involves using a cadaver fibula in the shape of a V along with ground up cadaver bone, all tied together with titanium wire. This all encourages a bony fusion to form.

This surgery has been successful for many people and formed solid fusions for them.

It felt like a very successful visit, and I feel like there are not many roadblocks left on my way to surgery.

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Next, I went to my general practitioner this week. He listened to the update, and he immediately prescribed Forteo for me. Awesome. I started it on Monday! So I'm back in the bone-building game.

He also ordered a new DEXA scan to be done, which I had done yesterday. We got the results today. Unfortunately, the results were not what we were hoping for (-1.5 and -1.7). I believe very strongly that the difference has to do with slight differences between machines. My former endocrinologist told me that every single DEXA machine reads differently from every other machine, so you should try to stick with the same machine. Also, on the DEXA results, it says that changes of <5% are not statistically significant on repeat scans.

So, my current plan is to continue DEXA treatment for 2-3 more months, and then have a repeat DEXA on one of the other two machines that I have been using for treatment, whichever one I can get in to use. I truly hope that that makes the difference in the results that I need. When we're looking for such small changes, it seems like anything could make the difference. Hopefully, it really is just the change in machines.

The hard part will be convincing insurance to cover another DEXA this year. But it's so important, I would do whatever it takes to get another one this year. I can't put surgery off forever, not when I know how good it could be. This is just one more frustrating delay.

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My roommate at the Variety House was recovering from this exact surgery. And she was doing remarkably well. She felt so much better. She looked so good. She sat up by choice. Her post-surgical pain seemed minimal. She went into the city to see a show! Her success is my new inspiration to keep going until I have this surgery.