Recovery

Well, well, well. It has been three weeks since surgery. The recovery road has been paved with thorns, as it were.

I was zonked on Percocet the first four days or so. Pain management. I was surprised how much pain I had. Have. It is tons better, but I still have quite a bit of pain, particularly in the "pocket."

I went back to work after a week, but I probably should have taken longer. I ended up leaving early a few times. One day I only worked two hours, because I could not handle more. Naps have been a necessity; some days I literally could not stay awake. (And I know how to use the word "literally.")

There was one odd happening that I wanted to bring up. I discussed this with both of my shrinks, ha. It was the day I got my staples out.

Exactly two weeks after the surgery, I visited Dr. Willy to have my staples removed. After an hour of waiting, he breezed in (yes, I was annoyed) and pronounced my back pristine. Best wound care ever. What can I say, I am highly compliant--you said to keep it clean...

The dressing was grafting to my skin, with a layer coming off with it. Ow. Orange gunk all over my back. Apparently the grafting never happens (maybe not literally never, but Dr. Willy had never seen it in all his years). I do have issues with adhesives.

When the dressing was finally off and the gauze over the incisions removed, Dr. Willy pronounced my incisions beautiful. Best wound care ever.

My friend took a picture of the stapled incisions and showed me. Surprising. Disgusting. Foreign. And then it occurred to me... How painful would this be?

The staples looked like they were really in there. They were crusted over. It occurred to me that I should have premedicated with Percocet. Dagnabbit. I nervously asked, "Is this going to hurt?" Dr. Willy paused, then responded, "You will feel some discomfort."

Everyone knows that "discomfort" is doctor code for pain.

I pushed my waistband down, exposing my hips. I hunched over, exposing my spine. It was not that bad when it began. Toward the bottom of the midline incision, some of the staples pulled and hurt. Then he started on the pocket incision.

The pocket incision staples were worse than the spine incision staples. Also, there were more of them, despite it being a shorter incision. Dr. Willy pinched my skin a few times. The staples pulled. I have definitely experience worse pain, but the unexpected aspect was challenging. I could not see what he was doing.

And then I had a strange feeling. I felt like I would pass out. I have wondered before how people could say that, how they could know that they would pass out. Now I understand.

I asked my friend how many more. She said, "Several." I told Dr. Willy, "I feel lightheaded. I think I might pass out." I guess I was too quiet; I had to repeat myself. He said there were not many more, that he would hurry, and then I could lie down.

I held onto my consciousness with both hands. The last two staples got stuck. Hurry up! And then I laid down on the gurney. I burst into tears. Dr. Willy gave me tissues and spoke in calm tones. I do not even know what he said. The fellow brought me juice. My friend stroked my hair.

Within 10 minutes, I was good as new. Well, sort of. I was dizzy. But I was not anxious anymore. Another fellow took me back to the procedure room to get some x-rays using the fluoroscope. He found that my left wire migrated a wee bit (it was halfway up my 10th thoracic vertebral body, a slight change from 1/3 of the way up), and the right wire also migrated (it was at the top of my 9th thoracic vertebral body, after starting halfway up). The right wire migration changed the stimulation pattern, so I needed to have my device reprogrammed.

After waiting around some more, the Medtronic rep showed up and reprogrammed me. I left with one program the same and two new.

I have needed SO MUCH REST to recover from this surgery, but it was worth it. My pain is down to 3-5, from 7-9. What a great change!

Trauma?

I wonder if I should make an appointment with Dr. Eric to talk about the SCS surgery. Obviously it sucked, but I did not think it was psychologically damaging until today. Someone asked me how I was feeling, and I started to cry when I thought about the surgery. I considered the possible psychological trauma of the event as I wrote my blog post about it, but I did not feel traumatized at the time. I was surprised, because I thought it was odd that I could be cut open while awake and not be traumatized. Maybe it took some time to hit me.

Or maybe I am just tired. I did not sleep well the last two nights. And yesterday I wore myself out helping an underprivileged kid with a school project. And a Wii project. :) I cannot believe I did not sleep after that!

Tonight I am going to take half of a muscle relaxer, along with my Ambien.

I do not know if I am really traumatized by the surgery or just worn down by the pain and fatigue. I feel like I need to cry. Gosh, I am exhausted.

Spinal Cord Stimulator - The Real Deal

Last Friday I had a permanent spinal cord stimulator (SCS) implanted. That was much sooner than I expected. I only got the trial lead out last Monday. But when a cancellation occurred and a slot opened up, I took it.

However, the time slot was not for Dr. Chris; it was for Dr. Willy. That made me a little nervous, but I had met him and like him. Picture a polite, African gentleman with good posture and elegant hands. Now I want to switch from Dr. Chris to Dr. Willy permanently.

The surgery was insane. Absolutely insane.

First they gave me a bunch of local anesthesia in my back. Then they tried to give me twilight sedation, but I did not react well. I started sobbing! That did not work well, because I needed to hold still, and the sobs were shaking my body. Dr. Hayden, the sweet anesthesiology fellow doing my anesthesia for the procedure, leaned in to ask what was wrong. Was I scared? Nervous? I just said, "I don't know, I don't know." I was a little nervous, but that was not why I was sobbing. Dr. Hayden gave me something to cancel out whatever he had given me, and I stopped crying. That was good, but they still had to cut me open.

I heard Dr. Willy talking to Dr. Amos, the pain fellow doing the procedure (he also did my trial procedure). He was saying where the incision should start. Incision? Now? Oh, boy.

At first I did not feel it, and then they hit a spot that was not numb. AGHHH!! I cried out in pain. They gave me more local. Dr. Willy commented to someone (Dr. Hayden?), "It is going to be hard to dissect down with her awake." That was when I realized that they were making the 4-inch incision they had described to me, in the middle of my back, all the way down to my spine. They continued to give me local anesthetic when I cried out, but I felt a good bit of the "dissection."

It was so painful. Dr. Hayden gently uncurled my unconsciously balled-up fist and gave me his thumb to squeeze. He said I was doing great.

Once the leads were in, it was similar to the trial procedure. Moving them around to find the right spot. Me giving detailed descriptions of where I felt the stimulation. Vaughn from the implant company would adjust settings ("I'm putting 1 as cathode and 6 anode..."), and I would give more feedback. When they moved the leads and hit nerves, I was sometimes stabbed with intense pain. Dr. Amos tried to avoid that.

About an hour in, I realized that I needed to pee. Badly. I had gone right before I went into surgery, but whatever, nature was calling. Finally I spoke up, and Dr. Willy quickly and kindly said, "Just go. Go right where you are. We will take care of it." I thought that I would hold it as long as I could, and I would let it out if I had to.

It took a long time to place the leads. Apparently my body is weird. Most people have the nerves that go to the front of their body running down the back of their spine (opposite of what you would think). Mine are the other way around. So they had trouble getting coverage of the fronts of my thighs, which is where I need it most. Dr. Willy almost called it quits. Finally we got it! When I said, "Good job, Vaughn, you got my right anterior thigh!" Dr. Willy said, "There is a God!" I said, "I don't know about you, but I was praying." He said, "Oh yes, I was, too--I thought you could hear me."

Through the 3+ hours of surgery that I was awake (not exaggerating), Dr. Amos was so calm and patient. Dr. Willy was also great. And Vaughn, who was a great listener. But Dr. Hayden was the best. He was so supportive. He was up near my head, and I was draped, so he was the only person I could see. After hours of trying to place the wires, after being jolted with pain so many times, I was physically and emotionally stressed. Dr. Hayden leaned in and whispered, "You are incredible!" His kindness was touching, and I felt comforted.

When we had settled on good spots for the wires (I had two leads placed), it was time to suture them in place, tunnel the wires under my skin to my butt/hip, place a neurostimulator (like a pacemaker) in my butt/hip, and connect the wires to the neurostimulator. When I heard one of the doctors ask for the suture materials, I was thinking Hello, isn't it time for me to take a nap now? I knew that the plan was to put me to sleep for that part. Luckily Dr. Hayden spoke up before I had to. He asked, "Can I put her out now?" Dr. Willy said, "Oh yes, please put her out."

Dr. Hayden patted my hand, and it was time to go to sleep. I welcomed it!

I woke up in the OR, after everything was finished. There was no room in the PACU inn, so I had to hang out in the OR for a while.

Right away, I had to pee. The surgery had been nearly five hours, and I ended up being able to hold it. I had expected to wake up wet, having gone while I was unconscious. Surprise, nope! It took a few minutes, several pleas from me, and a request from my BFF Dr. Hayden, and then a nurse brought me a bedpan.

But I could not go! Darn anesthesia. It took a good five minutes to go, but then I filled up the bedpan. Ahhhhh.... After that, I did not mind waiting.

Pain control was an issue in the PACU, as was itching control. It looks like I am allergic to one of the dressings. I have issues with adhesives, so it is probably that. Unfortunately, none of the dressings can be removed for two weeks. They kept loading me up with IV Benadryl, which helped some. I have been taking Benadryl fairly regularly since then.

I hated the side effects of the IV fentanyl they gave me in the PACU, but it did help with the pain. Not for long--they kept having to give me more. I had been warned that the pain from the "pocket" in my butt would be excruciating, and they were not exaggerating. But the fentanyl caused extreme dizziness. The nurse told me to close my eyes, which helped.

Vaughn came into the PACU to program my remote. That took a good 45 minutes. It was similar to the tests in the OR, with me telling him where I felt the stimulation and how strongly. He gave me the remote with an "antenna" that I place over the neurostimulator (under my skin). I have a remote-controlled butt! He also gave me the charging belt, but I am not supposed to use it these first two weeks, unless I absolutely have to. It could increase inflammation that disrupts healing.

So now it has been three days since the surgery. I have slept a lot! Between Benadryl, Percocet, and the energy it takes to heal, I have been wiped out. Today I have only taken one nap so far, but I may need another one. On Saturday I think I took four long naps. I felt like a newborn baby!

I went to church on Sunday, but I had to wear a hat. No showers allowed, and I could not even sponge-bathe until Sunday night. Now I can sponge-bathe. On Friday I can take a shower, as long as the dressing cover is firmly in place--no getting the incisions wet. This morning, my friend helped me wash my hair, which was awesome. My hair was nasty, having not been washed since Thursday!

Gosh, my butt incision hurts. I have to be so careful how I move. And nothing can touch it, even lightly. I guess I could take another Percocet, but I like being awake. I am staying home from work tomorrow and probably Wednesday. They have been great about saying to take as much time as I need. They do not know what the surgery was, because I want to keep my disease private. I do not like everyone knowing my business, and I do not want to risk discrimination. There are a lot of wrong notions about MS.

Oh, goodness, I am getting really tired. I guess I will wrap this up.

I am happy that I have my SCS. The surgery was rough, to put it mildly, but I think it was worth it. I am looking forward to continued refinements of the programming, to cover my pain better. I think it will improve my quality of life.

SCS Trial

Today I had a spinal cord stimulator trial device placed. It provides electrical stimulation to my spine, and the hope is that it will block the pain signals.

This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak  with the attending spinal headache and had to have a blood patch.

The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.

And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.

Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.

The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.

The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...

I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.

Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.

Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.

I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.

1/14/13

Still experiencing frequent MS flare ups. Currently:

·      Right side weakness (mild)

·      Burning pain—legs (above knees), hips, pelvis, trunk

·      Difficulty sleeping

o   Fall asleep fine at night

o   Awaken 5-10 times each night, fall asleep quickly each time

o   Daytime sleepiness, occasionally falling asleep during the day

·      Fatigue

MS Clinic – Dr. Rick at 

·      11/9/12  Discontinued study medication (probably Avonex) due to lack of efficacy

·      Continuing in the study with lab work, exams, MRIs, etc.

·      12/7/12  Began Aubagio 14 mg daily

Sleep Clinic – Dr. Goola at

·      9/22/12  Difficulty sleeping began at the same time as a flare up

·      9/25/12-11/15/12  Dr. Rick prescribed Ambien CR 12.5 mg, slept 5-6 hours straight

·      11/14/12  First appointment with Dr. Goola

·      11/25/12  Sleep study

o   No apnea

o   Identified disordered sleep architecture – frequent awakenings, high percentage levels 1 and 3, low percentage REM.

·      1/4/13  Appointment, received lab results from 11/17/13

o   Anemia and fatigue dx

o   Thyroid and CBC normal

o   Referred to sleep behavioral health program at Bayview

o   Recommended start taking iron

·      4/26/13  Next appointment

Pain Clinic – Dr. Chris at

·      12/27/12  Recommended spinal cord stimulator from Medtronics

·      1/8/13  Received psych clearance from Dr. Sally

·      In process of scheduling appointment for trial of SCS

Oral Surgery – Dr. Ned in

·      12/21/12  Post and crown fell out

·      1/7/13  Recommended implant, sinuses and bone look healthy

·      1/16/13  Appointment for implant

Psychology – Ruth in

·      Continuing to see her every 2-3 weeks for counseling

Studying Sleep

Two more nights until my sleep study! And it is officially approved by insurance (took until Tuesday), so it is set. I am sure it will still cost an arm and a leg, but it is worth it.

I am going to upload a picture of my sleep diary. Now I knew that I have been struggling with sleep, but wow, adding up the hours just now made a big impact on me.

{Clickable}

OK, the picture is bad. I don't feel like getting up to turn on the lights, and the flash of the camera made a glare. The hours of the day are across the top. I make vertical lines for sleep/wake, diagonal lines for lying in bed awake, and shading for sleep. On the right side, I recorded the total hours I slept and the number of awakenings (not counting last awakening for morning). Ignore the top line, because I took Ambien CR that night.

Yeah, so 6:30 is better than 2:45, but it is still not functional for a person with MS. For me! That one day I got 8 hours of sleep, but it was still broken up. Not good. Also, I cannot sleep until 8:45 on a work day, so I would not normally have been able to get that much sleep. My alarm usually would go off at 7:00/7:30.

In related news, I am off tramadol as of today. My sleep specialist speculated that it could affect my sleep, being an opioid. (Despite me being on such a low dose that I had to cut the smallest pill on the market in half.) I have been stepping down slowly, and I had no trouble coming off it. I would say that my nerve pain in my left leg/buttock has been worse, but I will give it some time. The sleep specialist said that I would know whether the tramadol was affecting my sleep within three or four days.

Not related but totally awesome: The increased Trileptal has taken care of my trigeminal nerve pain! When I saw my neurologist on Tuesday, he increased it to three times daily. I am only taking 150 mg, which is not a lot. Dr. Rick was ready to increase from 150 mg 2x daily to 300 mg 2x daily, but I asked for the smaller increase. I can always increase more if needed.

Today was rough, which should not be surprising if you look at the sleep I got last night. But I had great days yesterday (Thanksgiving) and the day before--despite doing quite a bit of cooking. My pain has been down, and my fatigue, while not allowing me to live close to the way I did before, has been much better. I am able to sit up through most of the evening.

Tonight I am really trying to stay up until my eyes are closing, like I did yesterday. Which turned out to be 10:30. Whatever. It is so hard to stay up. It means fighting your body's need for sleep until you lose the battle. What makes it so hard is that the pain increased as the night wears on... agh...

Thrust In Your Sickle

When I have not blogged in a while, it usually means things are really good or really bad. Things are not good.

Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.

I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.

Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.

Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).

Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.

Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!

Seriously, the thought of tomorrow is too much sometimes.

Getting Worse... Sigh

I had the pleasure of visiting the gynecologist. My vagina is still there (good thing they check every year). And my yeast infection is not.

Sensory:

-Pins and needles: 5, left let and right side of tongue (NEW SYMPTOM). Rather painful.
-Tingles: 2, up the outside of my left forearm and hand
-Dysesthetic pain: 7, sometimes just left leg, sometimes burning skin on both thighs, front and back. Clothes hurt sometimes. And sometimes ok!
-Paresthesias: 5, electricity, some prickles like bugs jumping onto me

-Numbness: 2
-Vision: 0-1
-Nerve pain: 4
-Hearing: 0? I don't know... never quiet enough to tell. I'm using a fan at night, so it is not even quiet at night.

Motor:
-Walking: 1
-Sore muscles: 3, still that left shoulder

-Spasticity: 2
-Weak muscles: 5, doors keep getting heavier!

-Endurance: 5

-Fine motor: 1, seems like I have a tremor in the morning, and it gets better in the afternoon. I wonder why.

Cognitive:
-Processing: 4, my word finding was bad. "She needs to mess with the uh um the you know thing. (What thing?) Here in um the starter sourdough starter."
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 7
-Balance: 0, not counting in the dark

-Vertigo: 0

-Sleep: 5, I got 7 hours but very broken up. Woke up at least half a dozen times.

-Bladder: 1, from medication
-Proprioception: 1
-Swallowing: 1
-A: 2
-B: 0

Emotions: I don't know if it is emotional, but I cried from exhaustion and frustration this evening. For a few minutes. Yes, I get it was emotional.

Getting Better!

I had another great, low-pain day. That is five in a row--I think I can officially say that the desipramine is working! I am so thankful.

I noticed today how much better I am moving. Walking, signing, everything.. much better.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 2
-Paresthesias: 2, some weird electricity-ness in my legs, also that weird buzzy/pully feeling in my back. Paresthesias are just weird.

-Numbness: 2
-Vision: 0-2
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 1
-Fine motor: 0
-Weak muscles: 1
-Spasticity: 0

-Endurance: 3

Cognitive:
-Processing: 0
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 3
-Balance: 0
-Sleep: 2, eight hours
-Bladder: 1 (medication)
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Calm. Oh, I forgot to say that yesterday I brought up bad dreams with my shrink. I have had a few in the last couple of weeks. She wondered if the anti-depressants were causing them. I did not think my dose was high enough to have that kind of effect, but I guess it might be. It is high enough to help the pain and to cause side effects. 

Bad With the Good

Desipramine seems to be helping my pain, and that is fantastic. But it is not without its down sides. I think it is making my vision a little weird. In a different way than the steroids. Whatever, I can deal. It makes me struggle to pee in the mornings. OK, I can deal. Bad dreams. I am still sleeping enough, and it is not all night long, so I can deal. Some dry mouth. It is not fun, but it is better than when I was on amitriptyline, so I can deal. Side effects stink, but I can deal. The pain is worse than the side effects.

I am so happy that my pain has drastically decreased!

I realized that muscle weakness is one problem, but I also have a problem with endurance. I have regained a lot of strength. Before I could not list my laptop and now I can; before I struggled with grocery bags and now I can carry them. I am getting better at opening doors. Those are just a few examples. But endurance is still a problem. I can pick up something heavy, but my arms turn to jelly after a minute. I can stand for a few minutes, and then my legs turn to jelly. It is frustrating.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 1
-Paresthesias: 2

-Numbness: 2
-Vision: 0-1
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 1
-Fine motor: 0
-Weak muscles: 1
-Spasticity: 1
-Endurance: 4
Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 1

General:
-Fatigue: 2
-Balance: 0
-Sleep: 2, eight hours
-Bladder: 1 (medication)
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 7

Emotions: I had a good head shrinking session. It was emotional, as always, but sometimes the only way out is through, right, Alanis?