New Piercing… and its helping my migraines!!

The last month has been my worst month ever with migraines.  I was even hospitalized for 5 days because I couldn’t break the streak.  Needless to say, I’m not happy. That’s not to say my stimulator isn’t working because it is.  In fact, today I had to turn my stimulator off for an SI injection and I realized how much the stimulator is helping reduce the intensity of my migraines.  My pain with the stim on was a 4/10.  When it was turned off it went up to an 8/10.

However, almost of month of migraines straight left me desperate for some more relief.  So I decided to try out the daith piercing that a bunch of people have said has helped decrease the intensity of their migraines.  I got it pierced 7 days ago and in those 7 days, today was the worst.  I haven’t been above a 4/10 until my stim was turned off today!  The daith or tragus are used because there are acupressure and acupuncture points in there that supposedly help migraines.  I got more relief at the daith location when I was getting acupuncture, which is why I got it pierced there.

I found an extremely clean place here in NJ that does piercings only!  They were fabulous.  Each tray was ultrasonically sterilized and was brought into the room still closed.  The earring you chose was also placed in that tray prior to going into the sterilization machine, so it too was sterile.  They used sterile technique once everything was set up and the guy was really great.  I would definitely go back.  They also do free jewelry changes since the rings are usually difficult to remove.

Right now, my fingers are crossed that this continues to work for me and decrease the intensity of these migraines.  Hopefully working with my reps will help my stim also give me more options.  Then working with my neurologist with meds will hopefully give me more options.

Incision Follow-up

Today, there was good news.  I had called in on Friday and I was still having a bunch of drainage, so I had to go back down to the Dr. today.  I had changed the steri-strips yesterday and put the old ones in a plastic bag to show her the amount of drainage since Saturday.  She was even more happy to see how little was on the steri-strips since last night.  However, my skin continues to be irritated by everything and anything.  Thankfully, no more dressings and just told to put sylvadine cream on my chest and ear incisions nightly and sleep w/ a tank top on to allow the incision to air.

The nurse practitioner said to stay in touch and definitely call if anything happens.  I have to follow up in a month- July 31st.

The other good news is that the programs that my rep put on my system are helping.  The pain has been less this week, even though there have been some thunderstorms which tend to trigger my migraines.  So this is very good news to me and I’m very happy!  I will try to keep updating as things progress, but right now I am seeing positive progress. 🙂

Tomorrow is the BIG Day!!

Well, after much waiting, tomorrow is the day they are permanently putting in my second system.  They will implant a second battery in my chest and implant two leads: 1 above my right eyebrow and 1 above my right ear!  When I did the trial for this system, I went from 3 migraines a week to 1 only when my stim was turned off after programming.  I honestly can’t wait for the relief my trial gave me.  I am the first surgery of the day, so I have a 7:30 am OR time which means a 5:30 am arrival time.  Basically I’m gonna be up bright and early!

I may not be back on here tomorrow for an update, but I will be soon!  Please keep your fingers crossed, pray, or send good wishes that tomorrow goes perfectly and I’ll be on my way to feeling better soon!

1 day into trial

I had my new supraorbital and temporal/auricular stim trial put in yesterday with Dr. Mammis from Rutgers/University Hospital in Newark NJ. It was painful when I first woke up in recovery, but after two pain med injections I was doing better.  Last night into today I’m getting about 7 hours between my doses of pain medications which is great.  I’m still sore and whenever I change my facial expressions it increases.  I don’t know what kind of leads I have, other than they are percutaneous.  I will try to find out more when I meet my rep for some reprogramming on Friday.

I was supposed to have a 2pm OR time, and a 12pm arrival.  Around 9:30am yesterday I got a phone call from someone at the hospital asking me to come in early, and leave home at that time, so we left by 10am.  I wasn’t taken back into the OR until 4pm, so I have no idea why I was asked to come in 2 hours earlier!  I woke up in the PACU around 6pm I think and was sent to post-op around 7.  My mom and I got home, about 30-45 minutes away by 8:45/9pm and the pharmacy closed at 9pm so I couldn’t get my antibiotic last night.  So I went out this morning and got it.  I was nervous driving for the first time since the wires are down the side of my neck, but I had no problems.

When they were setting everything up in the OR yesterday, my surgeon was going over where my first battery is and already said that if/when we proceed, he plans to put the new battery in my chest, just below my clavicle.  This is what I expected and I’m totally fine with that.  I like that he is already expecting this trial to be a success and the fact that we are doing it more as a formality for insurance than anything else since I’ve done so well with stim in the past.  The other this this allows us to do is adjust the placement of my leads.  The current temporal/auricular lead ends just above my ear.  We will reprogram Friday and see if we can get it to spread at all, but I’m already thinking it may need to end a bit further back.  However, I’m not making that call until we are all said and done with the trial.

Its amazing how much my daily headaches were affecting me.  Everyday I had some head pain, about a 4-5… and 2-3 days a week I had the additional dizziness, light sensitivity, etc that made me say it was a migraine.  I had my stim trial put in last night and its amazing how much those headaches were zapping my energy.  I’ve only been up 3 hours and I’ve gotten my antibiotics, started my immune infusion, unpacked my new infusion supplies that I had been putting off, and put all the cardboard, etc outside, plus I’m watching 2 puppies under a year old.  I’m shocked how much I’ve accomplished and I’m doing ok.  I will probably lay down for a nap more to keep healing than feeling like i have to.  So far this trial is going awesome!

Post-op day 12

I had wanted to be posting more than this, but things have just gotten away from me.  I had a few days where my pain flares and I have started getting more intense muscle spasms.  I see my surgeon tomorrow for my follow-up and will ask him about it.  Other than that, I’ve been trying to walk and take less pain meds, which is working.  I’m taking a little over half of what I was taking when I was discharged home.

Three days ago I was woken up by a pounding headache about 7:30 in the morning.  I turned my occipital stim leads on lightly, and rolled over to try to get back to sleep.  I woke up later around 11a and the headache was still pounding in nature, but the pain level wasn’t out of control.  The whole day, my pain didn’t exceed a 5/10 which is typically my borderline of manageable.  There were times where the pain was escalating so I would turn my stim up just a bit to see if it would help and after like 20-30 min, the pain was no longer increasing.  For the first time, I slept with my stim on that night as I still had somewhat of a headache.  I also had some nausea, but taking one of my nausea meds made that disappear.  I would say this was probably my first post-op migraine, and my stim has proven that it may be the game changer I am hoping for.

I plan on returning to the practice of recording my average daily pain scale and if I had migraine symptoms or not that day.  I then will compare it to some of my months prior to surgery and we will see what difference this is truly making for me.  I have also been able to control some of my leg pain with the current programs.  It’s not as helpful as my trial was, but we also didn’t do nearly what we did programming wise, during my trial.  Even the initial programming after my trial was put in was more precise than what we could do initially post-op in the recovery room.  I’m still playing with the programs where we basically just made sure I could feel the stim.  When I follow up wih my surgeon on Tuesday, one of the Boston Scientific reps will meet with me and we will do much more programming to fine tune this and see exactly where we can affect.  The one spot I have on my list to work on finding is my low back.  I have very little to no stim in my low back itself.  I have plenty in my legs, which is where my herniations have caused pain, but I also get some low back pain that I want to be able to cover.  I also want to have more of the contacts on each occipital lead turned on.  It will be interesting to see what we can do.

I honestly can’t wait to see the neurosurgeon again.  I want these damn staples taken out! They are so annoying.  Especially the incision at the base of my neck- that gets irritated every time I put my head back too far.  Plus the incisions have started getting itchy.  Everything looks really good, although my lami incision seems bumpy and a little thick, so I know I have do work on that one to improve how it’s healing.  I still have about half of my lami incision covered in steri strips and the incision made to help get my wires to the battery is still covered, most like because they are protected by my bra during the day, so the steri strip adhesive hasn’t been tugged at as much.  I’m pretty sure if they are still there  when I see the surgeon, he will pull them off so he can see the incisions.

I also know that I need to make a list of questions for my surgeon and make sure I clarify what my restrictions currently are and how long they are in place for.  One thing I have learned talking to others who had this done, is that every surgeon is different.  While many of the restrictions are the same. Each surgeon is unique in when they let patients return to different activities.  The hardest restriction so far has been no bending.  There are so many times that I have dropped something or see something on the floor that needs to be picked up or even simply wanting to pet my dog.  I do have a grabber that I use when things are on the ground, but the reflex to bend over is still there. The no twisting or lifting hasn’t been as difficult, partially since my mom has helped me with a lot of things including my laundry.  The other big task that I’ve had help with is meals- since I still live at home, my parents are doing the cooking.  However, I look forward to when I can cook again and even bake since mixing right now is out of the question.

So far, my body is definitely healing better than I had anticipated and the pain isn’t as bad as I expected.  I honestly feel that has a lot to do with the surgeon who operated on me.  I feel that having such a well trained and knowledgeable surgeon, who was very pro-active with my immune deficiency, has been a huge benefit.  I was honestly prepared for a recovery that would have taken my pain from days 1-2 post-op and had them drag on for 1-2 weeks.  Instead, the pain kept dropping off and improving.  I can even put some pressure on my incisions so I’m sure that once I’m another week or so out from surgery, I will totally be able to tolerate some specific massage to help the incisions heal better.  Right now, if I had to do this all again, I would.  However, I only see battery changes in my future (as my rechargeable battery will last about 4-6 years and then need to be replaced)!!!

Post-Op Day 5

Today was the first day I felt like I took a step backwards.  I am a volunteer EMT in my local town and today was Memorial Day.  I have marched in my town’s Memorial Day parade every year, except for 2, since I was in 2nd grade (which is 20 years)!  I didn’t want to miss the parade due to my surgery, especially since the rest of my family would be going, as we are all involved in some arm of the emergency services.

I got permission to drive the ambulance, instead of marching the route.  I had already been driving and was never told I couldn’t drive, so I felt this was a great idea.  However, what I didn’t think of was that all the waving was going to make my muscles very sore, especially the ones cut during surgery.  I also was off all my pain medication so that I could drive.  Therefore, by the time the parade was over, I was pretty sore.

I came home, took my dose of medication, and took a nap.  I was in and out of sleep for about 2 hrs before I got up.  I have been in the one recliner that is comfortable pretty much since then, except for dinner.  Between icing my back and keeping up with my medication schedule, things are better tonight.

Tomorrow I see my surgeon and believe my staples will be taken out.  Everything seems to be healing up nicely.  All the steri-strips have fallen off my battery incision, but are still intact over my laminectomy site and the other small incision used to track my wires to the battery.  I’ve been talking to others who had the same procedure done for their spinal cord stimulator, so no occipital leads, and I’m still healing at a very fast pace.  I hope this continues and there are no complications, fingers crossed!

At the same appointment that I have with my surgeon, I should be seeing my rep from Boston Scientific.  Hopefully we can play with my programs to improve my coverage.  The only spot I don’t have some stimulation and I did during my trial is in my low back.  However, I do have some in my lower abdominal area and all the way up the back of my legs.  There is still hope as there is a lot of swelling still present in the incision and that will change where I feel the stim and also how strong the stim feels.  I’ve already been sitting in the recliner and just cough and while coughing, the stimulation jumped to a higher level and then went back down to where it was set.  I didn’t have any of these issues with my trial since the leads were put in with the needles and little was done that should upset the epidural space and cause swelling during the trial.  However during the perm, since I had a paddle lead installed, my doctor had to cut away some of the bone on the back of one of my vertebrae so he could slide the paddle in and have the top of it sitting at the top of my T8 (8th thoracic) vertebrae.  I am honestly excited to see what we are able to get as my swelling goes down and we can fine tune the stim more and more.

ONS implant Day

Today was the big day.  I had my ONS trial put in this morning and the day has been rather interesting.  They only used local anesthesia to do the entire procedure which was sufficient for the most part.  As they advanced the needle to place my left side lead, the very end of the area wasn’t numb, so I had a little discomfort there, and a little discomfort w/ one of the stitches, but otherwise everything went smoothly.

Once everything was implanted, the leads hooked to the control wires and everything tegaderm’d in place I was taken back to the pre/post-op room and worked with the reps to program everything.  We ended up identifying 3 treatment spots on my R side and 2 on my left since I predominantly have right sided migraines.  We then worked into putting those spots into 4 different programs for me work with from today (Friday) until Monday when I regroup with the Boston Scientific reps to reprogram.  The interesting part was trying to program while I was partially/mostly numb.

Afterwards my mom and I stopped for lunch and then I went home and took a nap.  The interesting and painful part happened when I woke up and felt like I had multiple needles being stuck in my head.  After trying to ice and only getting more intense pain, I decided to turn off my stimulator and that resolved a lot of my pain.  What had happened is that when I went to sleep, the back of my head was still mostly numb so my stimulator was on higher than I needed when I woke up and my head was no longer numb.  After some time with the stimulator off I was able to turn it back on at a much lower level and get relief from even some of my procedure pain.  So far, I would say I’m still waiting to see exactly how much this can help me.  I remember the first 2 days of my SCS being hard to make any decisions due to the procedure pain, and I’m at the same point right now- having to let the procedure pain ease more before I can truly see how well this is going to help with my headaches.

In a holding pattern…

No news yet, which some would say is good news.  Yesterday was exactly 2 weeks since my pain management doctor and I first spoke about the stimulator so I have tried to be patient.  I figure I will call on Monday to request a status update and see if there is anything else I could be doing to help move the approval process along.  This whole waiting process is so hard, especially as I keep getting horrible migraines and painful days with back pain that prevent me from doing more than curling up in my bed.

I had one day this week where my constant pain patch wasn’t working and the burning deep ache that seared through my legs was so severe.  I seriously laid in bed until I had my pain under better control around 3pm.  I couldn’t believe how painful it was and how incapacitated it rendered me.  On top of that I had 2 bad migraines this week.  One I took medicine and slept off, the other was resilient and didn’t want to go away.  Those are the tough ones that I try to just work through and thankfully I was able to work through this one until it broke.

Well, hopefully, the next entry will have some good news and some progress to report about these stimulator trials and when I may finally be able to schedule them for.  My fingers are tightly crossed, hoping for the best!