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!

Autopsychotherapy and MS Cognitive Aids

I made that word up! Wait... I coined that word. Sounds much more impressive. After writing my last blog post, I went straight to my word processor and wrote my little heart out. And my head. Who needs a psychologist? ;)

This is what I wrote:

Thoughts March 10, 2013

I don’t know why I am so upset or why I am crying.

I think I am tired. I am worried I will not be able to sleep. I am worried that my sleep problem will never improve. I cannot be functional without sleep. Even with Ambien CR, I am not sleeping well. I am worried that my sleep therapy is not working. It’s not changing anything.

I wonder if I can increase my Ambien CR dosage. I wonder if there is another medicine I can add. I wonder if I should try increasing my Celexa dosage.

I wonder if I am traumatized by my surgery. After all, I was awake and felt them cutting. The wire hitting my dorsal nerves was incredibly painful. Then I had the fear of them giving up.

But they didn’t give up. They tried a little more and got it.

Maybe I am feeling sorry for myself. Maybe my tears are coming easily today, since I am so exhausted. That is normal for me.

I think I am anxious about the week ahead. I am so exhausted already. I was not able to rest, since B was here yesterday. But I love to see B. Can I not have anything I enjoy anymore?

OK, time to look for distorted thoughts.

Worried that I will not be able to sleep. This is fortune telling. Worrying about it might make it worse, because I might be anxious at bedtime. I don’t know what will happen in the future. It’s true that I might not be able to sleep. I can talk with Dr. Rob about it. I can talk with Dr. Eric about it. But I might sleep better again tonight. I hope that taking Flexeril tonight will help.

I would like to speak with Dr. Eric about my behaviors of speaking dream dialogue and acting out dreams. Also the weird breathing—is it snoring? Also fragmentary myoclonus—my finger twitches. I learned that sleep groaning is not from an emotional or psychological disorder. I learned that SSRIs (like Celexa) can exacerbate periodic limb movements, like sleep myoclonus. Maybe speak to doctor about discontinuing Celexa for a while. I keep seeing that clonazepam is used to treat fragmentary myoclonus. Can I try this? The fact that Flexeril helped me sleep makes me wonder.

Wow, researching Flexeril made me hopeful. It has helped a lot of people sleep. It has been shown effective for fibromyalgia, and I can’t help but compare that with MS—both being neurological.

About my possible traumatization from the surgery. I could bring it up with Ruth or Dr. Eric. Probably Ruth, since she knows me better. But isn’t all well that ends well? I don’t know how much it really bothers me.

About my fears of not making it through the week ahead. It certainly will be a busy week. But again I am fortune-telling. It is true that I might not be able to do everything. Or I might be exhausted. So I might need to miss some work. I would like to see all three kids on Monday. I must see J on Tuesday, and I must go to R's meeting. But I can miss R and maybe P. Rest up for R's meeting. On Wednesday I can go in late, start with C's meeting at 11:00. Thursday I should work all day. I know “should,” but it kind of is a should. I missed the last two Thursday mornings, and I would love to pull the boys for their 9:30 session. On Friday I can just go to Head Start for 45-60 min then rest before the pain clinic. That schedule should be manageable.

L will definitely drive me to the hospital on Friday. She can’t drive me to work on Thursday. Maybe A C and D can. Or just A C. I wish I could get a ride to St. Augustine on Tuesday.

I need to make appointments with the MS Clinic and the dentist. The dentist is definitely a need. I don’t want that broken tooth getting infected or breaking more. I would like to call tomorrow.

I am worried about working with A. His mom is so crazy. (Labelling!) But she does love me. Hopefully that love continues. I am really good at getting kids intelligible. She is excited to get back to Cycles therapy, since A has stagnated in the last month or so. I will probably need to coordinate targets with K, which may be difficult, since she dislikes me and is disinterested in trying Cycles. I can let A's mom fight that battle. I hope I can keep A interested and working with me for a full 45 minutes. If not, we can cut it to 30 minutes. I can work on Metaphonological skills, if A will cooperate.

Back to the dentist. Friday midday would work. Or next Monday afternoon. Or Tuesday afternoon, missing the Pals meeting.

I feel so much better. Points of action (as much as I can handle of this):

• Dentist appointment for 3/15 midday, 3/18 pm, 3/19 pm, or after work
• Plan A's session (mom wants to begin with /s/ blends)
• Put out the word that I am looking for rides on Tuesday and Thursday.
• Speak with Ruth about surgery
• Speak with Dr. Rob about Flexeril (possibly start), Klonopin (possibly start), Celexa (possibly stop), bowel issues
• Make an appointment with Dr. Rob (see above availability)
• Speak with Dr. Eric about speaking dream dialogue, acting out dreams, fragmentary myoclonus, groaning, possible snoring, relaxation homework, results of the intake paperwork I filled out (rating scales), chicken and egg with depression and sleep—seems insomnia comes first bc I am only depressed when I am exhausted and sleep deprived
• Look up MS memory strategies. Oops, forgot.

Here is what I found on MS memory strategies

• Memory exercises on a computer? (no evidence or testimonials that it works)
• Home or work strategies with notebooks, organizers, or filing systems to help you remember things

These were strategies that people with MS suggested on a message board:

• Notebooks for doctors
• Print out weekly calendar pages, take notes on them, keep in “go bag”
• Make a place for bills to live before being paid.
• Say it out loud, then write it down.
• MS memory problems or cognitive problems are often attention/concentration problems.
• When trying to remember a list of things that you need at the store, you can visualize the items.  Picture a room in your house, like your foyer.  Imagine a place where you would set items, like the foyer table.  Visualize the item you need on the table.  Visualize another item you need on that table, underneath, or in a weird location in that same room (maybe hanging somewhere in the room, tipped on it's side, etc..  Do this for all your items.
• A variation of this is called method of loci.  Imagine the item in a familiar place or route.  "Pick up" the items when you visualize yourself either walking through your house or driving your car.  You can memorize your shopping list, etc. this way.
• There's many other tips, using other senses, like auditory.  Songs, rhymes, hearing you say the words, lists, nams, etc.  Then there's organizational techniques, like mnemonic devices--  For example:  My Very Earnest Mother Just Served Us Nine Pickles.  This acrostic is the planets in order from the sun out:  Mercury, Venus, Earth, etc.
• Another one that I like a lot is to make an association to remember names of people.  My husband gave me this tip.  He's the world's best at remembering names of people.  I had a friend name Stuart and I couldn't remember his name to save my life.  When I saw him in the grocery store last, I was sweating bullets to get his name out to introduce him to my husband.  He took the pressure off of me and introduced himself.  After we left the grocery store, my husband told me that this was an easy association.  Stuart "Little" because Stuart is not little he was big.  I still remember his name to this day, and have no problems with that.    Associations are big in education these days.  Association and making connections is key to remembering  what you read.  Connect when you see something that you should remember.  That reminds me of . . .
• I've found that when the brain is working its working, when it goes on holiday and forgets to let me know, it doesn't matter what i know, um all the tricks are packed away in the bottom of the suitcase, probably still going around and around the luggage carousel waiting for my brain to claim it lol. 
• I would recommend checking out the ADD, Dyslexic or even CAPD (central auditory processing disorder) community or information sites, lots of usefull information to be found.
• The other problem is a total lack of recall of fairly important conversations. One would think that given the importance of the subject and length to which it was discussed, someone could trigger my memory, but NO. – So true!!

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.

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

Hello Aubagio!

I said a not-terribly-fond farewell to Avonex a month ago, and today I received my first shipment of Aubagio. I guess I should not have been surprised at the small package, but of course it is only a few pills. Exactly 28, to be highly exact. I find that annoying, because a prescription should be for 30 pills--30 days. With 28 pills in the pack, I will need to refill it more often, which means paying a bit more each year. Whatever, at least I have insurance.

Click to Enlarge

If any of you MSers stumbles across this blog, it took exactly three weeks for my insurance to approve Aubagio.

I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.

My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....

I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.