Things that are better, at least some days:
-waking up at 11:00, naturally, instead of noon
-able to wake up at 10:00 to an alarm one day, with no consequences, no nap
-able to take a shower instead of a bath
-able to shower more frequently
-able to have more active and upright time, on some days
The thing is, good days and bad days are a part of Chiari. They are a part of POTS. Good days are not unheard of. This doesn't necessarily mean anything. So I have to be careful not to get carried away, right? Keeping that in mind...here I go anyway:
I'm feeling like there are possibilities for my future. I'm considering looking into a new career. Am I crazy? I have no idea how plausible this is. I seriously would need to get SOOOO much better. I have no idea how much better it's possible for me to get, or if it will last. But maybe...
Resilience
Hope is a scary thing.
I wish I could stop myself.
Cause I can never handle the let downs
Not another let down
Not this time.
I've done everything.
I've given up everything.
I lost everything and rebuilt.
Then I did it again.
And again.
I've waited.
I've endured.
I continued waiting.
I've been shut down so many times.
I've gone through more pain than I ever imagined I could.
But I did not give up.
I kept going.
I came very close.
I hit rock bottom.
Then I hit even lower.
I waited and endured and withstood even more pain.
This time should be my time.
If there is any way for me, this is it.
There's nothing else to try.
This has to be it.
It must be.
I don't have much left in me.
I don't know how to give much more.
It hurts too much.
I just don't think I could give any more.
But that's never really true, is it?
As much as it hurts, I always find a way.
I persist.
I push forward with might.
I always find new ways to forge ahead.
So it's never really over.
There's no last chance.
As long as I can always find a way to keep trying.
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Sorry for any typos and the unorganized nature. This is just stream-of-consciousness. I don't really know anything about poetry. Just wanted to get some thoughts out.
I dedicate this to all of my Chiari friends that also persist in a daily battle. It takes strength and resilience. I don't know how some of them do it with a smile on their faces! I don't necessarily stay positive. I just don't give up. And that will still get you from one day to the next, which is all you can do sometimes.
In reality, I know that many people have this surgery and get better. Other people have this surgery and don't get better. And others have this surgery, get better, and then get worse again. There's still not enough research. It's still so early. There's no explanation for the outcomes. The doctors are doing their very best to help us with limited information. And I am very grateful that there are doctors out there willing to try.
At the very least, I have recovered from the side effects of the surgery at this point (no more crazy autonomic instability--back to normal POTS). Surgical pain is mostly gone--still some sharp pains in my head at times. My skull has healed in a strange way--it's got a pretty large protrusion that is very sore and sensitive. My scalp still has very strange sensation (hypersensitive and partially numb at the same time). My hair is growing back at the usual rate.
But I also feel that the number of good days is increasing. It's nothing dramatic. If I'm improving, it's at a very slow rate. I would call it incremental improvements. But that's good enough for me. I wish I could see into the future to know how much better I will get and how long it will take. Then I could plan better. I could decide if it makes sense to choose a new career and go get the necessary training. Will I ever be able to work a real job? How many hours a day? Would I be healthy enough to work reliable hours? I'd like to work. I'd like to contribute financially to the family, and feel like I have a purpose.
I will save the more long term question of having a family for another day...
For now, I will just keep going. Living every day as best as I can. Trying to be upright and active without overdoing it. Keeping track of any improvements without expecting too much of myself and my body. Being grateful for wherever I'm at in my long recovery process, and trying to be patient to find out where it will end up. Trying not to get carried away and be accepting of wherever I may land.
Never giving up. I must remember that recovery is not a linear process. There are always steps forwards and backwards. After the busy holidays, I should expect some bad days to follow. But I must remember not to be discouraged by the bad days, even if they last for a few weeks. The good days will return, and ultimately, recovery will progress forward.
Of course, I must also keep in mind that we have no idea how far this recovery will progress (thus, not getting carried away).
Okay, I've said way too much, which tends to happen this late at night. I will probably not be waking at 11:00 tomorrow, as it is 3:00 here. My body is used to 11 hours. A bit less tonight I guess. Just got carried away again.
Wednesday, December 22, 2010
Wednesday, November 10, 2010
Finally, A Response.
Xray of my new fusion
MRI showing the suspicious fluid which glows bright white
So, I finally heard from my doctor, and I did get some surprising news.
He looked at the scans. He said that the fluid in the picture is not spinal fluid! I don't have a leak. It is actually chemicals that were put in during the fusion. And my fusion looks exactly how it should look at this point in my recovery! So, everything is healing well. That part is a relief.
As far as my return of symptoms, my surgeon believes that they are being caused by my cardiovascular problems. He believes that I will need a pacemaker to stabilize my heart rate and blood pressure. He believes this would alleviate many of my symptoms.
I also talked to my local cardiologist today, since my 30 day event monitor is complete. He is referring me to an electrophysiologist. He also suggested that I may benefit from a new type of pacemaker.
Coincidentally, my POTS doctor, Dr. Grubb, installed the first in this new generation of pacemakers this past June. It is particularly advanced, and especially able to help stabilize both heart rate and blood pressure. [Correction: This is a false statement, which will be amended in the next blog entry.]
Here's a brief article describing this pacemaker: http://utnews.utoledo.edu/index.php/06_03_2010/patient-travels-from-dc-to-receive-new-generation-pacemaker-from-utmc-surgeon
My next step will be to contact a local electrophysiologist and to schedule a consultation with Dr. Grubb. I understand, of course, that there will be another waiting period.
Wow, I sure get to practice patience a lot.
In the meantime, I'm going to try to keep a good record of my heart rate and blood pressure. I find my current situation to be quite difficult to describe. Also, it's complicated by the multiple medications that are helping to raise my blood pressure, which stabilizes my heart rate, to some extent. It's hard to know how severe my situation would be without these medications.
That's all for now. It's a relief to know it's not a leak. But I guess the saga is never really over, is it? I don't want a pacemaker. I don't want heart surgery. But I would do pretty much anything to feel better at this point, obviously.
MRI showing the suspicious fluid which glows bright white
So, I finally heard from my doctor, and I did get some surprising news.
He looked at the scans. He said that the fluid in the picture is not spinal fluid! I don't have a leak. It is actually chemicals that were put in during the fusion. And my fusion looks exactly how it should look at this point in my recovery! So, everything is healing well. That part is a relief.
As far as my return of symptoms, my surgeon believes that they are being caused by my cardiovascular problems. He believes that I will need a pacemaker to stabilize my heart rate and blood pressure. He believes this would alleviate many of my symptoms.
I also talked to my local cardiologist today, since my 30 day event monitor is complete. He is referring me to an electrophysiologist. He also suggested that I may benefit from a new type of pacemaker.
Coincidentally, my POTS doctor, Dr. Grubb, installed the first in this new generation of pacemakers this past June. It is particularly advanced, and especially able to help stabilize both heart rate and blood pressure. [Correction: This is a false statement, which will be amended in the next blog entry.]
Here's a brief article describing this pacemaker: http://utnews.utoledo.edu/index.php/06_03_2010/patient-travels-from-dc-to-receive-new-generation-pacemaker-from-utmc-surgeon
My next step will be to contact a local electrophysiologist and to schedule a consultation with Dr. Grubb. I understand, of course, that there will be another waiting period.
Wow, I sure get to practice patience a lot.
In the meantime, I'm going to try to keep a good record of my heart rate and blood pressure. I find my current situation to be quite difficult to describe. Also, it's complicated by the multiple medications that are helping to raise my blood pressure, which stabilizes my heart rate, to some extent. It's hard to know how severe my situation would be without these medications.
That's all for now. It's a relief to know it's not a leak. But I guess the saga is never really over, is it? I don't want a pacemaker. I don't want heart surgery. But I would do pretty much anything to feel better at this point, obviously.
Monday, October 25, 2010
Here's an email I sent to my surgeon that summarizes my post-operative struggles:
I had the MRI and xrays done this week that Dr. B requested based on my post-surgical cardiological problems. I wanted to make sure that Dr. B has a full picture of my post-op symptomatology to consider, along with the images, when they arrive.
My cranio-cervical fusion revision was August 19. My time in the hospital went smoothly. Immediately after surgery, we noticed a complete improvement in my pupillary reflexes as well as my swallowing. I flew home on August 27. I experienced dramatic symptom relief in the following days. I experienced relief of all of my POTS symptoms, my headache, and my fatigue. My balance was very steady, and my "brain fog" was gone. I woke up every day feeling energized and light. I built up my pace and endurance on daily walks very quickly.
September 7 was the first day I noticed a change. When I went from sitting to standing, my vision would black out. This caused me to check my blood pressure. It was 90/70, which was quite a bit lower than it had been when I was feeling good (around 120/80). I also felt a headache this day. In the following days, I had low blood pressure (as low as 80/40), vision blackouts, legs giving out, palpitations, nausea, chills, and fatigue return.
On October 5th, I went for a walk with my heart rate monitor on, and noticed my pulse get very low (HR=38). This happened several times in the following days, in conjunction with reduced consciousness. During a reduced consciousness time, which can last for several hours, or even much of the day, I experience limpness, lethargy, reduced awareness, reduced alertness; and trouble focusing, understanding, and producing words.
In addition, my dysphagia, which had gone away, has started to return, which choking on water and pills.
My baseline headache has gone and returned.
My fatigue and flu-like feeling have gone and returned.
My autonomic dysfunction has gone and returned, however, it used to be strictly POTS. Now, my blood pressure can be too high or too low; my heart rate can be too high or too low. So, my POTS doctor doesn't know how to treat me, and my cardiologist is considering a pacemaker, pending the results of my 30-day event monitor. I have marked heart rate lability and blood pressure lability. In addition, I experience shortness of breath, and my lips are often blue.
I expect this recovery to be a long one, so I don't mean to complain. But I did want to alert you to the seemingly complete elimination of my symptoms in my early recovery, followed by the return and even worsening of many symptoms right now. It's hard to understand and hard to explain what has happened.
I cannot remember anything happening to my head or neck that could have caused any damage.
Thank you for considering my situation.
I had the MRI and xrays done this week that Dr. B requested based on my post-surgical cardiological problems. I wanted to make sure that Dr. B has a full picture of my post-op symptomatology to consider, along with the images, when they arrive.
My cranio-cervical fusion revision was August 19. My time in the hospital went smoothly. Immediately after surgery, we noticed a complete improvement in my pupillary reflexes as well as my swallowing. I flew home on August 27. I experienced dramatic symptom relief in the following days. I experienced relief of all of my POTS symptoms, my headache, and my fatigue. My balance was very steady, and my "brain fog" was gone. I woke up every day feeling energized and light. I built up my pace and endurance on daily walks very quickly.
September 7 was the first day I noticed a change. When I went from sitting to standing, my vision would black out. This caused me to check my blood pressure. It was 90/70, which was quite a bit lower than it had been when I was feeling good (around 120/80). I also felt a headache this day. In the following days, I had low blood pressure (as low as 80/40), vision blackouts, legs giving out, palpitations, nausea, chills, and fatigue return.
On October 5th, I went for a walk with my heart rate monitor on, and noticed my pulse get very low (HR=38). This happened several times in the following days, in conjunction with reduced consciousness. During a reduced consciousness time, which can last for several hours, or even much of the day, I experience limpness, lethargy, reduced awareness, reduced alertness; and trouble focusing, understanding, and producing words.
In addition, my dysphagia, which had gone away, has started to return, which choking on water and pills.
My pupils only work sometimes.
My baseline headache has gone and returned.
My fatigue and flu-like feeling have gone and returned.
My autonomic dysfunction has gone and returned, however, it used to be strictly POTS. Now, my blood pressure can be too high or too low; my heart rate can be too high or too low. So, my POTS doctor doesn't know how to treat me, and my cardiologist is considering a pacemaker, pending the results of my 30-day event monitor. I have marked heart rate lability and blood pressure lability. In addition, I experience shortness of breath, and my lips are often blue.
I expect this recovery to be a long one, so I don't mean to complain. But I did want to alert you to the seemingly complete elimination of my symptoms in my early recovery, followed by the return and even worsening of many symptoms right now. It's hard to understand and hard to explain what has happened.
I cannot remember anything happening to my head or neck that could have caused any damage.
I am continuing with my Forteo shots at this time, and to the touch, it feels that my skull has filled in with bone.
Monday, October 11, 2010
Bradycardia, Reduced Consciousness
I know. I'm a delinquent blogger. It's just hard to know what to say when things are going wrong and not looking up. So, I'll simply report the facts.
I've been having a new symptom, and some more worsening symptoms. I've had some spells of prolonged bradycardia, as low as 38 beats per minute. I haven't lost consciousness. But I have had many different levels of reduced consciousness, and it feels like I'm never fully awake anymore. I am often in this state at least 6 hours a day: reduced awareness, reduced alertness, unblinking, limp, lethargic, difficult to rouse. I've reported this symptoms to my POTS specialist and my neurosurgeon. I'm now on a 30-day holter monitor to try to catch the bradycardia episodes (of course, the lowest I've recorded is 46, but we're getting closer). My heart rate is also hyperreactive to anything I do, but the monitor is really able to catch that. The most it can record is 2 minutes and 15 seconds a day. I would need more of a 24-hour holter for that type of problem.
The POTS specialist says that this is not related to POTS. Tachycardia is typical of POTS. Bradycardia is not. So this is a new and unexplained symptom.
My surgeon also ordered scans of my cervical spine that we're arranging to have set up. I guess he's worried about the bradycardia episodes being related to the fusion.
I also need to have my Lithium levels tested, although my dosage has been constant for a long time.
I still haven't actually had an appointment with a doctor about this new problem.
During the bradycardia episodes, and actually most of the time, my state of consciousness has been reduced. I've been really out of it. Staring. Limp. Weak. Tired. Short of breath. Not very reactive. Can't think much (Reduced mental status).
Besides all of this, essentially every symptom I've ever had has returned or gotten worse.
Sunday 9/26
Fatigue/Lethargy
Pain: 3, Achy
Walk: 30 minutes, up and around the hill
Monday 9/27
Fatigue/Lethargy
Aches/Pain after walk
Chills at night
Exercise: 27 minute walk, 20 minute bike
Tuesday 9/28
grocery trip: bad, caused a spell of reduced consciousness
Fatigue/Lethargy
Aches
Chills
Headache: brain, especially at the back--definitely Migraine
30 minute walk w/ ankle weights
Wednesday 9/29
Fatigue/Lethargy
No appetite
31 minute walk, 25 minute bike
Thursday 9/30
Fatigue
Achy
No appetite
Migraine
Exercise video: 40 minutes, Heart rate: 170
Friday 10/1
saw a movie in the theater
GI distress
Saturday 10/2
Collapsed when climbing stairs
Unable to move all day: restricted to bed
Sunday 10/3
bike 15 minutes
Monday 10/4
bike 20 minutes
Tuesday 10/5
Migraine
Nausea
Fatigue
Muscle aches
Bruised feeling all over
Joint pain
Reduced appetite
22 minute walk
Reduced consciousness spell: weak, tired, out of it, short of breath, palpitations
120/76-HR 48
126/81-HR 47
134/88-HR 44
134/83-HR 44
138/90-HR 39
136/89-HR 42
134/81-HR 42
Lasted at least 3 hours
Wednesday 10/6
Recumbent cross trainer-10 minutes
Reduced consciousness spell
135/92-HR 39
145/94-HR 40
Thursday 10/7
after breakfast, resting
feeling "normal"
102/67-HR 81
102/64-HR 88
Later, out of breath just talking
108/72-HR 53
Friday 10/8
Begin 30-day Event Monitor
Rest after exercise: HR 52
Saturday 10/9
Decreased consciousness most of the day, HR low was 46
Sunday 10/10
Decreased awareness, decreased alertness, weak, tired, HR low was 48
Monday 10/11
Zoning out all day. Low so far around 52. Will probably get lower later, as it usually does. It seems to trade off between low blood pressure and low pulse, so I'm always symptomatic, but always just barely conscious.
It seems like I should see a doctor, but the cardiologist just gave me this monitor. Don't know who I should see.
I've been having a new symptom, and some more worsening symptoms. I've had some spells of prolonged bradycardia, as low as 38 beats per minute. I haven't lost consciousness. But I have had many different levels of reduced consciousness, and it feels like I'm never fully awake anymore. I am often in this state at least 6 hours a day: reduced awareness, reduced alertness, unblinking, limp, lethargic, difficult to rouse. I've reported this symptoms to my POTS specialist and my neurosurgeon. I'm now on a 30-day holter monitor to try to catch the bradycardia episodes (of course, the lowest I've recorded is 46, but we're getting closer). My heart rate is also hyperreactive to anything I do, but the monitor is really able to catch that. The most it can record is 2 minutes and 15 seconds a day. I would need more of a 24-hour holter for that type of problem.
The POTS specialist says that this is not related to POTS. Tachycardia is typical of POTS. Bradycardia is not. So this is a new and unexplained symptom.
My surgeon also ordered scans of my cervical spine that we're arranging to have set up. I guess he's worried about the bradycardia episodes being related to the fusion.
I also need to have my Lithium levels tested, although my dosage has been constant for a long time.
I still haven't actually had an appointment with a doctor about this new problem.
During the bradycardia episodes, and actually most of the time, my state of consciousness has been reduced. I've been really out of it. Staring. Limp. Weak. Tired. Short of breath. Not very reactive. Can't think much (Reduced mental status).
Besides all of this, essentially every symptom I've ever had has returned or gotten worse.
Sunday 9/26
Fatigue/Lethargy
Pain: 3, Achy
Walk: 30 minutes, up and around the hill
Monday 9/27
Fatigue/Lethargy
Aches/Pain after walk
Chills at night
Exercise: 27 minute walk, 20 minute bike
Tuesday 9/28
grocery trip: bad, caused a spell of reduced consciousness
Fatigue/Lethargy
Aches
Chills
Headache: brain, especially at the back--definitely Migraine
30 minute walk w/ ankle weights
Wednesday 9/29
Fatigue/Lethargy
No appetite
31 minute walk, 25 minute bike
Thursday 9/30
Fatigue
Achy
No appetite
Migraine
Exercise video: 40 minutes, Heart rate: 170
Friday 10/1
saw a movie in the theater
GI distress
Saturday 10/2
Collapsed when climbing stairs
Unable to move all day: restricted to bed
Sunday 10/3
bike 15 minutes
Monday 10/4
bike 20 minutes
Tuesday 10/5
Migraine
Nausea
Fatigue
Muscle aches
Bruised feeling all over
Joint pain
Reduced appetite
22 minute walk
Reduced consciousness spell: weak, tired, out of it, short of breath, palpitations
120/76-HR 48
126/81-HR 47
134/88-HR 44
134/83-HR 44
138/90-HR 39
136/89-HR 42
134/81-HR 42
Lasted at least 3 hours
Wednesday 10/6
Recumbent cross trainer-10 minutes
Reduced consciousness spell
135/92-HR 39
145/94-HR 40
Thursday 10/7
after breakfast, resting
feeling "normal"
102/67-HR 81
102/64-HR 88
Later, out of breath just talking
108/72-HR 53
Friday 10/8
Begin 30-day Event Monitor
Rest after exercise: HR 52
Saturday 10/9
Decreased consciousness most of the day, HR low was 46
Sunday 10/10
Decreased awareness, decreased alertness, weak, tired, HR low was 48
Monday 10/11
Zoning out all day. Low so far around 52. Will probably get lower later, as it usually does. It seems to trade off between low blood pressure and low pulse, so I'm always symptomatic, but always just barely conscious.
It seems like I should see a doctor, but the cardiologist just gave me this monitor. Don't know who I should see.
Sunday, September 26, 2010
Some bad days, Days in Bed, A Plateau
Friday 9/17
Switch to hypomanic
Awoke with heart pounding
Sharp pains in right rod
Nausea
Chills
Spell: decreased conscioussness
Saturday 9/18
Nausea
Hot/Cold
Body aches
Sensitivity
Fatigue
Heart pounding
Lethargy
Chest pains
Couldn't get out of bed all day
Walk: 10 minutes- excruciating
Sunday 9/19
Fatigue early
Better energy
Less pain
Reduced consciousness spell
Heart feeling better
Monday 9/20
Lethargy improved
Heart improved
Reduced consciousness spell
Low blood pressure all day
Nausea
Abdominal pain
Chills
Low pain level: 2-3
Bike: 20 minutes HR 120's
Tuesday 9/21
Flu-like symptoms
Hot/cold
Lethargy
Nausea
No appetite
Migraine kept me up at night
Exercise video: 20 minutes- HR 120's
Wednesday 9/22
No appetite
Flu-like symptoms
Walk: 20 minutes
Thursday 9/23
Nausea
Hot/cold
Headache: Top of head/forehead
Friday 9/24
Migraine woke me from sleep
Flu-like symptoms
Walk: 34 minutes- HR 130's/140's
Saturday 9/25
Sick
Pain
Headache
Back left upper skull pain/throbbing- 8
Bed day
Walk: 5 minutes- excruciating
Switch to hypomanic
Awoke with heart pounding
Sharp pains in right rod
Nausea
Chills
Spell: decreased conscioussness
Saturday 9/18
Nausea
Hot/Cold
Body aches
Sensitivity
Fatigue
Heart pounding
Lethargy
Chest pains
Couldn't get out of bed all day
Walk: 10 minutes- excruciating
Sunday 9/19
Fatigue early
Better energy
Less pain
Reduced consciousness spell
Heart feeling better
Monday 9/20
Lethargy improved
Heart improved
Reduced consciousness spell
Low blood pressure all day
Nausea
Abdominal pain
Chills
Low pain level: 2-3
Bike: 20 minutes HR 120's
Tuesday 9/21
Flu-like symptoms
Hot/cold
Lethargy
Nausea
No appetite
Migraine kept me up at night
Exercise video: 20 minutes- HR 120's
Wednesday 9/22
No appetite
Flu-like symptoms
Walk: 20 minutes
Thursday 9/23
Nausea
Hot/cold
Headache: Top of head/forehead
Friday 9/24
Migraine woke me from sleep
Flu-like symptoms
Walk: 34 minutes- HR 130's/140's
Saturday 9/25
Sick
Pain
Headache
Back left upper skull pain/throbbing- 8
Bed day
Walk: 5 minutes- excruciating
Tuesday, September 14, 2010
Four Weeks Post-op
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
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
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...
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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!
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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.
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