My recovery is progressing and improving, but not in a linear fashion, of course. Recovery is always "2 steps forward, 1 step back." It's very frustrating, but overall, I can tell that even with multiple setbacks and plenty of symptomatic days, I'm still getting better overall.
Friday 9/10
Pupils functioning fully.
POTS symptoms much better.
Exercise tolerance improved.
Intractable headache
Walk: 2 laps
Walk: 2 blocks
Saturday 9/11
Walk around golf course: 23 minutes
Active day
Headache
Sunday 9/12
Walk: 2 blocks
Active all day
Headache
Pain, neck and head: 6
Monday 9/13
No activity all day
Bike: 8 minutes
Headache
Lethargy
Nausea
Tuesday 9/14
Headache
Walk: 18 minutes
Headache worsened: 7
Bike: 6 minutes
Wednesday 9/15
Physical therapy
Bike: 12 minutes
Thursday 9/16
Grocery trip
Heart palpitations/pounding
Nausea
Walk: 30 minutes
Tuesday, September 14, 2010
Thursday, September 9, 2010
Three Weeks Post-Op
For some reason, by the time we got home from the hospital, it looked like my recovery was going to be one of those rare quick and dramatic recoveries; a sharp contrast to the long and drawn out recoveries that I'm used to.
For ten days, my body surprised me. Besides the surgical pain and the post-surgical "quirks," I was symptom-free. Really. No headache (again, besides localized surgical pain). No nausea, no facial pain, no POTS symptoms. I was amazed.
I certainly wasn't expecting this when it happened. It seemed too good to be true. I tried not to get my hopes up. But it really seemed the the surgery had very quickly solved all of my major complaints.
Then, Tuesday happened. Blackouts, collapsing, low blood pressure, pupils not working, tachycardia, palpitations, arrhythmias, the old headache, body aches. They all came back, and have persisted.
Now, I never expected to be symptom free, at three weeks out, or ever, really. But for ten days, I was. It's hard not to wonder why I was doing so well.
Especially something like pupillary constriction. That was immediate after surgery. It was perfect. And now, it's sluggish and incomplete. What changed to make this happen, along with other symptoms coming back so abruptly? My blood pressure hadn't been noticeably low since surgery. Now, it seems to be constantly low.
However, I know to expect a long recovery. I expected not to see symptom relief for a long time. Twelve months is a good guess for recovery time from symptoms for this operation. POTS recovery can take longer than that, and it is not expected to be complete.
But for those ten days...I had such a feeling of well-being. It felt like I had a new body. I just wonder what that was about...
------------------------------------------------------------------------------------
I had my first physical therapy appointment on Wednesday.
The script from Dr. B only had one instruction: "Optimize neck ROM" (range of motion).
So, when I went to my appointment, that's what we started doing. Stretching. I left with quite a headache. I wrote to my nurse, to find out if this was okay. She said that no stretching is to be done. Just massage, warm compress, and later, ultrasound, and TENS. Quite a contradiction to the script. Hopefully, we'll get this straightened out.
I also hope I can find a physical therapist that can give a good massage. He seemed to be scared to touch me. I need to get to a massage therapist, and fast!
------------------------------------------------------------------------------------
I really wish those ten days hadn't happened. They got my hopes up and left me disappointed with my current condition. I'm actually having a good recovery. I'm still in pain (between 4 and 7). I have a lot of trouble finding a way to rest my head on a pillow at night. But I'm getting out for daily walks. I'm able to get in and out of bed easily. I still have a lot of fluid. Once that is absorbed, the pain should decrease. It's still much better than I expected. I know it's good. I'm working on readjusting my expectations. I knew it was too good to be true. That's why I didn't want to admit just how well I was doing. I didn't want to admit that my headache was gone. But I was really ecstatic. Now, I've actually been crying for three days straight. It doesn't make sense, because I know how lucky I am, still. I guess I just really got my hopes up that things were really going to stay so drastically better so early on. I wish I could stop crying. I know it's ridiculous. Oh well, I will adjust my expectations again, in time. I've done that enough times in my life; I'm sure I can do it again.
For ten days, my body surprised me. Besides the surgical pain and the post-surgical "quirks," I was symptom-free. Really. No headache (again, besides localized surgical pain). No nausea, no facial pain, no POTS symptoms. I was amazed.
I certainly wasn't expecting this when it happened. It seemed too good to be true. I tried not to get my hopes up. But it really seemed the the surgery had very quickly solved all of my major complaints.
Then, Tuesday happened. Blackouts, collapsing, low blood pressure, pupils not working, tachycardia, palpitations, arrhythmias, the old headache, body aches. They all came back, and have persisted.
Now, I never expected to be symptom free, at three weeks out, or ever, really. But for ten days, I was. It's hard not to wonder why I was doing so well.
Especially something like pupillary constriction. That was immediate after surgery. It was perfect. And now, it's sluggish and incomplete. What changed to make this happen, along with other symptoms coming back so abruptly? My blood pressure hadn't been noticeably low since surgery. Now, it seems to be constantly low.
However, I know to expect a long recovery. I expected not to see symptom relief for a long time. Twelve months is a good guess for recovery time from symptoms for this operation. POTS recovery can take longer than that, and it is not expected to be complete.
But for those ten days...I had such a feeling of well-being. It felt like I had a new body. I just wonder what that was about...
------------------------------------------------------------------------------------
I had my first physical therapy appointment on Wednesday.
The script from Dr. B only had one instruction: "Optimize neck ROM" (range of motion).
So, when I went to my appointment, that's what we started doing. Stretching. I left with quite a headache. I wrote to my nurse, to find out if this was okay. She said that no stretching is to be done. Just massage, warm compress, and later, ultrasound, and TENS. Quite a contradiction to the script. Hopefully, we'll get this straightened out.
I also hope I can find a physical therapist that can give a good massage. He seemed to be scared to touch me. I need to get to a massage therapist, and fast!
------------------------------------------------------------------------------------
I really wish those ten days hadn't happened. They got my hopes up and left me disappointed with my current condition. I'm actually having a good recovery. I'm still in pain (between 4 and 7). I have a lot of trouble finding a way to rest my head on a pillow at night. But I'm getting out for daily walks. I'm able to get in and out of bed easily. I still have a lot of fluid. Once that is absorbed, the pain should decrease. It's still much better than I expected. I know it's good. I'm working on readjusting my expectations. I knew it was too good to be true. That's why I didn't want to admit just how well I was doing. I didn't want to admit that my headache was gone. But I was really ecstatic. Now, I've actually been crying for three days straight. It doesn't make sense, because I know how lucky I am, still. I guess I just really got my hopes up that things were really going to stay so drastically better so early on. I wish I could stop crying. I know it's ridiculous. Oh well, I will adjust my expectations again, in time. I've done that enough times in my life; I'm sure I can do it again.
Tuesday, September 7, 2010
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.
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.
Tuesday, August 31, 2010
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.
Sunday, August 15, 2010
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
http://www.caringbridge.org/visit/carolynrichardson
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.
"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.
http://www.caringbridge.org/visit/carolynrichardson
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
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