8 weeks post-op!

Things continue to go well with my recovery. I checked in at my pain management group this week. The only oddity is some pain and numbness on the pinkie side of my right arm. I have osteophytes or bone spurs on my vertebrae in my neck and wonder if maybe some operative or post-op swelling has settled in to my cervical spine causing the return of my arm symptoms after they had been relieved for almost 2 years after a cervical epidural. My pain dr wants to watch the symptoms since my body just had so much done, he wants to give it a chance to continue pulling the swelling out on its own- so we wait, watch, and see.
I had my first doozie of a migraine since surgery this past Monday (5 days ago). My headache was an 8/10 along with nausea, vomiting, photophobia, and dizziness. The one good thing was it was on the day I saw my pain management group so they saw how exactly my migraines effect me cognitively, physically, and mentally. They realized just how different I am and how hard it is for me to function with a migraine as I wasn’t even able to name my new medication my GI dr had put me on- and I know my list of medications!!
I also met with one of my Boston Scientific reps to reprogram. I think I am extremely lucky as I have names and phone numbers for 4 different reps, so if I can’t reach one, I can always reach out to another. From others I’ve talked to, they usually have one person to contact. I’m not sure if it’s just how this group of reps works or if it’s because there are so many drs in the New York metro area that they need the flexibility to work as a team. It has been very effective and I appreciate having contact to them all!
On a non-related note, I have been suffering with recurrent De Quervain’s Tenosynovitis for over a year and a half. I had 3 cortisone injections and the orthopedist who has been following me won’t do any more. He feels it’s time for me to have the sheath around the tendon released. The stress is that this is a Tenosynovitis in tendons going to my dominant hand…. Worst of which is they go to my thumb. The procedure is very easy and I may not even need physical/occupational therapy afterwards, but it’s still another stressor. I am getting another opinion Monday, but I think he is going to say the same thing. So now I have to find out if there are any restrictions for surgery- like with a cautery device or anything- that may come along with my stimulator.
Oh and another interesting thought that I’ve been pondering over is if I am allowed to still mobilize/manipulate my vertebrae after this surgery. I always self-mobilized and self-manipulated my back when I felt stiff, but have been afraid to since my surgery. So I need to ask Dr. Winfree about that and what is/isn’t allowed. I’ve also been thinking about what information I need to or should put on a new medical alert bracelet. I need to update mine since my scs/ONS surgery and want to make it worth the money. I saw another patient’s medical alert that said ‘spinal cord stimulator- No MRI, diathermy, defibrillation’. That got me thinking, as an EMT, if I found this, does that mean I don’t put an AED on that patient? Or do you do it anyway to save their life? I’m debating about whether or not I feel I should include the defibrillation on my medical and think i will hold off on buying a new one until I see Dr. Winfree at the end of August for my 3 month follow up visit. It’s amazing how much you have to consider now that you have a neurostimulator system in.
The one thing that is getting easier is my charging. I talked to my rep about how difficult it is to get my charger to connect and charge the battery. I was using the adhesives Boston Scientific will send you and then had to put my charging belt over it because it wouldn’t stay connected. However we figured out that by pushing the charger a little into my skin when it’s ‘finding’ the battery and then letting it go, is working as long as I’m in a seated position or lying flat on my bed. It’s still a pain because any little movement can make the charger disconnect, but it’s better than wearing the belt which was making the charger overheat and shut down, so I would think I charged for 2-3 hours when it really shut down like an hour into it! And also when I was reprogrammed my rep showed me that running most of my programs was pulling a high charge from my battery so I need to charge about an hour to an hour and a half every other day to keep from needing a marathon charge of 4-5 hours each week, which increases the chance of the charger running out of power or it overheating. So I’m trying to get in the routine of every other to every third day, I charge for 1.5-2 hours to keep my battery well charged.
Well, I hope you are enjoying this walk with me as I have gone through this process. I hope you continue to follow me and my journey with my scs/ONS system and the relief it’s giving me. Only 8 weeks post-op and I would say I have 80% improvement on leg pain, 40-50% improvement in back pain! and 80-90% improvement in my migraines. I’ve actually only had like 6 migraines since surgery, and only 2 of them were severe! A much different picture from 3-4 migraines a week and 1-2 of them being severe or multi-day migraines each and every week. This is definitely a step in the right direction.

Success!!

Wednesday was the big day.  After all the waiting, trials, and disappointment, Wednesday (5/21/14) I had my permanent stimulator implanted.  Dr. Winfree told my parents that the surgery went picture perfect.  He did everything under general anesthesia this time after I didn’t do well with the conscious sedation last week.  Prior to the surgery I got to talk with Dr. Winfree again, the anesthesiologist (a different one this time), my Boston Scientific Rep, and the OR nurse.  The anesthesiologist had read what happened last week and was ready with a plan to put me under general anesthesia and even use a medication that would ease the nausea I had from my migraine that day.  He promised that I would have no recollection of anything, wouldn’t move on Dr. Winfree at all, and would even have an easy time coming out of the anesthesia (aka, I wouldn’t have such a bad anesthesia hang-over as usual)!  Dr. Winfree just reviewed what we had discussed from day 1 with the paddle, including that he would cut as little bone as possible to get the paddle in and to put the occipital leads in.  Dr. Winfree explained that he planned to have me on a morphine PCA overnight, as he said I would probably need to stay for pain control, but would allow IV push of dilaudid in the PACU to help get the pain under control faster.  He also stressed that if my pain wasn’t under control on post-op day 1, then I was to stay until it was- he did not want to rush me out before my pain was controlled!  I had also noted where he was planning on putting my battery from the previous surgery, which unfortunately hit the top of most of my pants.  I asked if it was possible to move it up even an inch, so he took a look and he said he could move it up a total of 2 inches so there would be no issues!

This time after nurse brought me into the operating room, they positioned my stretcher next to the operating table and I stayed on the stretcher.  The anesthesiologist fixed some of the links in my IV so it had what he needed, but none of the other pieces that he didn’t.  He then asked me to scoot up a bit more to the top of the stretcher so my head was at the very top.  At that point I started to feel a little sleepy and loopy.  The anesthesiologist then put the mask on me and had me take some deep breaths and that is the last thing I remember…. until I woke up in the PACU.

During surgery, I was on the regular cardiac, respiratory, and other monitors.  Dr. Winfree also used EMG monitoring with leads both on my skin and even some needles in my hands and legs to monitor my neurological system. 5 incisions were made during my surgery- 1st: vertically down the back of my head/neck which was used to place the occipital leads on both side and stapled closed; 2nd: horizontally across the top of my shoulders near my neck incision which was most likely used to thread the occipital leads down towards the battery and was also stapled closed; 3rd: vertical incision from T8 down to about T10 used to expose the lamina which was removed to insert the paddle lead into the epidural space at T8 and was most likely sutured closed with dissolvable stitches internally and steri-strips externally with gauze over; 4th: vertical incision just to the side of the 3rd which is about an inch in size and also most likely used to thread leads to the battery and closed with steri-strips and covered with gauze; 5th: horizontal incision on R side at bottom of ribs, 2-3 inches long, which is where my rechargeable battery was inserted and most likely closed with internal dissolvable stitches and external steri-strips.

When I woke up in the PACU I was definitely in pain, mostly in that 3rd incision from the laminectomy- from cutting the bone.  As usual, the nurses ask for a number and it was up around a 9/10, so they gave me the first dose of dilaudid, since the PCA hadn’t be hooked up yet.  They came back around about 15-20 minutes later and my pain was still about an 8/10 so they gave me the second dose of dilaudid.  They then hooked up my PCA with the fluids I was already getting.

Then right before x-ray closed, they sent me for the x-rays I needed to verify my leads were in the right position.The technicians were great and allowed me to pull on them to help me position myself for the x-rays, rather than them moving me.  Then from x-ray, I was taken right up to my room and about 10 minutes later I finally saw my parents for the first time since I had awoken from surgery.  My nurse on the floor made sure my PCA was working and got me all settled in, and then right around 6 I was ready to eat, only to find out the cafeteria had closed.  My parents went downstairs and got me some veggie straws to eat and the nurse found a cold sandwich and that was my dinner. 😦  My parents left at 8pm when visiting hours ended and I settled in for some TV and tried to figure out what was going to be the most comfortable position for sleeping- which ended up being on either side as laying on my back was the most uncomfortable, as was switching positions!

Overnight, I can’t tell you how many times I woke up- partially due to pain and partially to go to the bathroom.  I was on fluids overnight which made me have to use the restroom rather frequently and that made me get in and out of bed a lot.  I figured the best way to get into and out of bed, but it was still pain-inducing, but I had that wonderful PCA button to help me out.  Thankfully, it was set so I could get a dose of medication every 6 minutes plus I automatically got a dose every hour- so each hour I was allowed a maximum of 11 doses, which I don’t think I even used that many in an hour.  However, when morning came, I was hurting more than the night before.  This could be due to the fact I wasn’t keeping up with the PCA as I slept as well as the local anesthetics that were used in the OR had worn off.  Either way, when Dr. Winfree’s PA came in around 7:30 am, she felt that it was best to take me off the PCA and put me on the oral dilaudid I take at home to see if I did better with that.  She decided that she would call my nurse around noon and see how I was doing and if I was doing well she would discharge me.

I had some breakfast and then sat up in a chair for a while and around 10 am I needed my first dilaudid, since they didn’t take my PCA away until 8:30 or so.  However, they only started me on 2mg.  The physical therapist came by and made sure I did well with bed mobility and was walking well and we went to make sure I could manage stairs well with and without a railing since my stairs at home only have a partial railing.  Once I was cleared safety wise, I was allowed to walk intermittent laps on the floor for some exercise and to help clear the anesthesia and get me out of bed.  I did a bit of walking and around 11 I climbed back in bed as I was starting to get sore.  Then out of nowhere, my pain significantly increased around 11:30/12pm.  So my nurse got an order for another 2 mg of dilaudid and we delayed my discharge to see if that helped.  I had lunch and walked another few laps with my mom.  The additional 2 mg definitely improved my pain and around 2pm, they called the PA to change my dressings and discharge me.

The ride home wasn’t horrible, and my mom was very cautious as she navigated the roads home trying not to increase my pain.  Mom helped me get everything in the house and unpacked.  I got all my lot numbers and other things from my boston scientific devices, including the remote, charger, etc.  I also got all my PICC/midline papers, discharge papers, and case management pamphlets together and in one place.  I’ve set myself up near my computer with seltzer, my pain meds, my grabber, the TV remote, my stim remote, and my cell phone.  However, I’ve also been up a bunch to use the restroom as the fluids are still circulating through my system.  The worst part is getting up and down from my couch since there is no good arm rests to push off of.  The plan is to sleep in my bed tonight, most likely curled up on one of my sides, but the back-up plan is that I can sleep downstairs in the living room in one of the recliners.  Then tomorrow, saturday, and sunday I have to head to the outpatient infusion suite to get antibiotic infusions, through the midline (modified PICC line) that was put in during last week’s procedure, to make sure this wonderful stimulator doesn’t get infected since my immune system isn’t the best at protecting me.

Sorry this was so long, but this was the big day and the big report!  I hope to report at least every other day on my progress and how the stimulators are working.  I will also make an extra effort to post at my follow-up appointments and when my stimulator gets reprogrammed since those will be other critical points from here on out.  Hope this was an insight into my last 36 hours and helps you know what to expect if you plan to embark down the same path I have!

So close, but no cigar!

Well today was supposed to be the big day!  However, all of my perfectly laid plans failed to go as planned.  I got a phone call around 2 pm yesterday from the neurosurgeon’s office saying my insurance denied the laminectomy so we couldn’t do the paddle lead that we had wanted for my SCS.  Then at 4:30 I got a phone call from the infectious disease doctor’s office saying that since I’m no longer being admitted (which wasn’t relayed from the neurosurgeon’s office and shocked me), that the infectious disease doctor wanted to change my PICC to a midline (shorter catheter that has fewer cardiac complications) and was also changing the vancomycin antibiotic to daptomycin.  The main reason being that vanco is given twice a day and dapto can be given once a day.  They also were arranging for me to get the antibiotics infused at their outpatient center near by for the next few days after surgery.  I then called back to the neurosurgeon’s office to confirm I wasn’t being admitted and they were gone for the day and never returned my call- which I will deal with tomorrow!

So I arrived at 9 for an 11:30 am surgery since I needed the PICC team to place my midline.  That all went just as planned and the midline is in and working.  However, everything went down hill after that.  First we got notice that my surgery was being pushed back until after 2pm!  The only good thing was that gave us time to get me the steroids my immunologist made sure to request at least 2 hours prior to anesthesia and the first dose of antibiotics an hour before an incision was made.  They ended up finishing up the prior case earlier than expected and I was brought back around 1:30pm, still 2 hours later than scheduled.  Then they tried to position me with my head in a pillow like at the massage places so that I could be face down.  Well that didn’t go too well as the anesthesiologist wanted an oxygen mask on me and that just cut into my cheek and made me VERY uncomfortable.  Then they changed it to a nasal cannula, but the anesthesiologist still couldn’t get things together and get me comfortable.  They even tried to sedate me to see if that would help calm down my moving around and it just wasn’t happening so the surgeon went up to my parents in the surgical waiting room and basically explained what was happening and that for my own benefit he was putting off the ONS placement due to how unsettled I was.

He then returned to the OR and started working on my SCS with the percutaneous leads.  Well he was able to get the leads into my spinal canal and epidural space but could only advance them to about T10 and we needed to get at least 2 vertebrae higher to T8.  He tried 3 different spots, making 3 different incisions with the same outcome each time.  He feels that my spinal canal is narrow in that area and that my body made scar tissue after the trial leads were pulled and now they can’t advance the percutaneous leads and he didn’t want to take the chance of doing any damage, be it temporary or permanent.  So he decided to give up, and went up to inform my parents.  I was waking from the sedation just as they were bringing me out of the OR and I realized my head didn’t hurt and as I tried to touch it someone told me they couldn’t do the ONS.  Then I started hearing bits and pieces that they also couldn’t do the SCS and I was devastated.  I started crying, partially because my back hurt a bit, but more so because my insurance screwed me over and I still have to live with this pain and torture for longer.

The Boston Scientific rep came with me back to my bed in same day surgery and kept trying to calm me down and reassuring me that we had the approval for the perm and they just had to show insurance that it is impossible to do the percutaneous leads on me, so since there is no other way to do the perm its almost guaranteed that they will approve the paddles.  She stayed with me until my mom came down, but I was still crying and at this point panicking and hyperventilating because I honestly felt like I couldn’t continue with this pain for another day.  Never mind adding the surgical pain I felt and not having the stim to help cut the daily pain I endure.  I was simply defeated, deflated, and depressed.  Thankfully between the rep, my mom, and the nurse, I was able to calm down as the sedation wore off more and more and I realized what they were saying was true.  Tonight, I still start crying when I have to think about waiting another week and for another approval after all the time it has taken to get this far, but I also know that the surgeon is going to be aggressive with my insurance and I have to call his secretary tomorrow to make sure she starts the paperwork and gets everything going so we can re-do this huge mistake next week.

The one good thing is I still have the midline in.  I am getting another dose of IV antibiotics tomorrow afternoon since they did make incisions and put the needles/leads into my spine.  But I am also calling the infectious disease doctor to see how many doses she wants to do and inform her that  we will be having round 2 hopefully next week.  I also have to make sure she is ok with us leaving the midline in for a little while, so that they don’t need to place another one next week or whenever the paddle is finally placed.  Also, when I call the neurosurgeon’s office tomorrow I have to ask the his secretary why she never informed me that I was no longer being admitted when she told me we were changing back to the percutaneous leads.  Then Thursday I have to touch base with my immunologist to see how he wants me to handle my infusions now that things are all screwed up, and call the pain management doctor following me to see about my appointment since I’m supposed to see him next Thursday which could be 2 days post-op and with doing outpatient antibiotics, I’m not sure how feasible that may be!

Sorry this was such a long post, but hopefully the next one will contain good news and a date for my paddle insertion, this time already approved by my insurance company.  I just wish there was a way to sue the insurance company for pain, suffering, and the huge inconvenience they caused me.  Plus, fingers crossed I don’t get an infection from having this line in longer and having incisions made twice now!

Surgery is getting close

Plans have stayed the same and my surgery is still on for May 13th.  It’s currently May 9th and I’m getting more and more excited and nervous.  I feel I have put together a great team with my surgeon and the infectious disease doctor, yet my nerves have still started.

I was folding my laundry tonight and figured I minus well just pack my clothes for the hospital rather than put them away and then take them back out to pack later on.  I also started my Don’t Forget list in an attempt to help decrease some of my nerves.  I even had emailed my Boston Scientific rep to ask a few questions and she said that my doctor does usually let the stim be turned on in recovery rather than wait until stitches and staples come out like some surgeons.  I’m not sure if that will help my pain directly or more indirectly as it will help my legs and low back and any headaches, but not the surgical pains.

I do plan on bringing my iPad with me to the hospital so I can update here as I feel up to it.  I will be lucky though because many patients are sent home the same day of their surgery and some the day after.  I will be able to get care for 5 days because of my need for antibiotics to keep this implant from getting infected since I am so prone to infections due to my immune deficiency.  Fingers crossed that all goes well from now until my surgery!!

Permanent Stim is Scheduled!

I know I haven’t posted in a while, but things have been really crazy.  I got my permanent stim procedure scheduled and at the hospital closest to me after some research to clear up misinformation.  I am currently scheduled for surgery on May 13, 2014 with an arrival time at the hospital for 10:30.  I had my pre-op with my PCP yesterday and they don’t see any issues and my bloodwork and everything was fine, so from his point of view I’m cleared for surgery.  Today I met with the Infectious Disease Doctor that will be following my case for surgery.

She is having the PICC team meet me when I arrive and put a PICC line in.  Then they will give me the first dose of IV vanco at least an hour before surgery.  She will also follow me after surgery and they will have me in the hospital for at least 5 days on IV vanco twice a day.  She even discussed if we need more than 5 days, then I can be sent home w/ the PICC for more IV abx without the risk of infection from being in the hospital.

I feel much less anxious after these last 2 appointments and now I just can’t wait for the time to pass so I can just have the surgery and get on with my recovery.