Let's start with a positive: Physical therapy is going well. Today I saw Kate, and after I wore myself out with exercises (honestly not many; I am easily worn out), she worked on my upper back and shoulder. It hurt!! I can take a lot of pain, though. It was not as bad as my MS pain. Or surgery without anesthesia. ;) After working on my rhomboids, levator, and teres for a while, she had my sit up. She asked if I still had pain, and I said yes. The amazing part... She did something about it! My previous PT experience was different. But Kate continued to work on my rhomboids and made the pain nearly go away.
Boo: I have had a migraine for five hours.
Yay: I am recovering from the steroids. Do not get me wrong; I feel awful. On a scale of 0 (great) to 10 (awful), today was a 9, down from 10s last week. But I did not feel an awfulness of 9 when I woke up, so that is an improvement.
Boo: My nerve pain is bad today. I think it is the weather. I have noticed that it tends to be worse when a storm is coming. I am like an old farmer: "My knee says it will rain!"
Yay: My butt incision is finally healing. I know: it has been six weeks! It keeps tearing and gaping. My friend put butterflies on it a few days ago, so it cannot open back up. Hopefully it is not growing MRSA inside of it. I cannot really keep it clean without getting the butterflies wet. I do not want to take them off, because I want to give the tissue a chance to knit together and STAY.
Boo: I am depressed. I am just sick of being sick. Cliched but true. I am becoming reconciled to the idea that I will not be healed. It does not matter how much faith I have.
On Friday, I met with my shrink, Ruth, and I had one big question I wanted answered: How do I not have a stress response when I am too sick to do basic life tasks? I realized that I am becoming stressed and anxious when I am sick in the morning or when I go to bed without having recovered from the day. I am learning how my MS operates and improving at predicting how things will go. For example, if my fatigue is at a 9 at 10:00 am, I am going to be incoherent by noon if I continue to do taxing things like, oh, sitting up.
So I talked with Ruth about that, and she did not have answers. She said to hold onto hope, and I said that I do not have any. I also said that I did not think that my thoughts were distorted; I thought my predictions were reasonable based on experience. And she agreed. She agreed that there is no reason for me to hold onto hope, but that somehow I should anyway. I should find a way. And that she was holding onto hope for me. Then she offered to have her husband give me a blessing.
As he began the blessing, I was thinking of a word, a half question that I could not really formulate into a complete thought due to my fatigue. Right after I thought the word, he said it.
This was not a blessing of healing, but it was a blessing of knowledge. I knew that I will not be healed, and that knowledge was a little bit comforting, because at least I can know what to expect. It is kind of like when a child acts out repeatedly and then the parent begins to discipline the child. Every time he hits, he sits in time out. And somehow the child feels less anxious. I am not saying that I am being punished. I am saying that boundaries and set expectations are comforting, in a way.
But I am still not happy to be sick! When I am this sick, I want so badly to die. I just want it all to be over. I find joy in small things, I love my kids, I have fun sometimes, blah blah blah, but my body is being tortured from the inside out. And it is getting worse, not better. So many times these past two weeks I have thought of my bottle of Percocet. I like having it around, just in case. Of course, I have so many meds--I could easily concoct a home remedy if I wanted. The only thing that keeps me from doing that is my best friend, who would never get over it. So I am living for her.
Monday, April 15, 2013
Saturday, April 6, 2013
Miserable
The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.
Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.
PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.
I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.
I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.
Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)
I hate MS.
Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.
PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.
I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.
I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.
Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)
I hate MS.
Thursday, April 4, 2013
Klonopin
Dr. Rob's choice of anti-anxiety med was Klonopin 0.5 mg. Hmm... Well, I do not have anxiety. But I do have tearful "downness." And I think it is making me more tired, if that is possible. At PT today, Dave kept asking if I was okay. Maybe I am a little out of it. My thinking was already slow before that.
Hopefully it helps me sleep. I do not care about addiction anymore. I am in survival mode. Actually, I am in not-really-caring anymore mode. I do not want this life.
Hopefully it helps me sleep. I do not care about addiction anymore. I am in survival mode. Actually, I am in not-really-caring anymore mode. I do not want this life.
It's Official--Yes, Again
Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.
Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.
It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.
One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.
The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.
Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.
Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.
It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.
One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.
The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.
Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.
Monday, March 25, 2013
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!
Sunday, March 10, 2013
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:
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.
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.
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.
These were strategies that people with MS suggested on a message board:
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.
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.
Thursday, March 7, 2013
SCS Surgery Recovery
It has been six days since my surgery. The recover has been rough! Worse than I expected. I can handle pain well, but I have been taking a lot of Percocet. Between that and the Benadryl for my allergy to the dressing, I have taken naps every day. The first two days after surgery, I slept more than I was awake. I did not mind, because I know that sleep helps the body heal.
The pain from the surgery is bad at the spinal incision, but it is worth at the flank incision. My poor hip/butt. It hurts to walk. Sometimes I cannot even bear weight on that leg; the pain is too severe.
However... The device is working. It helps so much with my burning pain! My spasticity has also been better, but I wonder if that is because of the SCS or because of all the rest I am getting.
I am looking forward to the surgery sites healing! And I cannot wait to have the dressing removed, to stop the itching. Eight more days.
Oh, and in non-MS news, I broke the filling of a tooth. On the other side of my mouth from where I had my implant placed. So now it is very hard to eat! Need to find a dentist, because I do not like mine. He let that one tooth rot enough that I needed an implant. And I told him the crown did not fit well. He has lost me trust. Agh, making a dentist appointment is just one more thing to do for my part-time job of managing my health.
The pain from the surgery is bad at the spinal incision, but it is worth at the flank incision. My poor hip/butt. It hurts to walk. Sometimes I cannot even bear weight on that leg; the pain is too severe.
However... The device is working. It helps so much with my burning pain! My spasticity has also been better, but I wonder if that is because of the SCS or because of all the rest I am getting.
I am looking forward to the surgery sites healing! And I cannot wait to have the dressing removed, to stop the itching. Eight more days.
Oh, and in non-MS news, I broke the filling of a tooth. On the other side of my mouth from where I had my implant placed. So now it is very hard to eat! Need to find a dentist, because I do not like mine. He let that one tooth rot enough that I needed an implant. And I told him the crown did not fit well. He has lost me trust. Agh, making a dentist appointment is just one more thing to do for my part-time job of managing my health.
Monday, March 4, 2013
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.
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.
Sunday, February 24, 2013
SCS? SOS...
My SCS trial is not exactly what I expected. Imagine having your entire back covered in Saran Wrap, with just enough blood under the plastic to keep it wet and sticky. I cannot wait to have the trial device removed.
Plus the lead migrated to a different spot after less than 24 hours, so it has not been covering the areas I need.
Despite all this, I am pretty sure that I want a permanent SCS. While the lead was in its original position, it really did help.
But I am not looking forward to having that procedure again... probably worse, since they will suture the lead into place. And it will probably be two leads, to get bilateral coverage. I assume that I would be asleep while they place the generator/battery unit in my flank. I want to ask about that tomorrow.
Plus the lead migrated to a different spot after less than 24 hours, so it has not been covering the areas I need.
Despite all this, I am pretty sure that I want a permanent SCS. While the lead was in its original position, it really did help.
But I am not looking forward to having that procedure again... probably worse, since they will suture the lead into place. And it will probably be two leads, to get bilateral coverage. I assume that I would be asleep while they place the generator/battery unit in my flank. I want to ask about that tomorrow.
Wednesday, February 20, 2013
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.
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
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