Still holding

Its been a while since I wrote and just figured I would update whats going on with me.  I’m still getting migraines more toward the front of my head and we are still investigating supraorbital leads.  I have been getting reprogrammed almost every 2 months which has been helpful.  We found areas of my head that are helping, but not 100%.  We just expanded my back coverage last month, but I’m still having issues getting coverage across my low back.  We continue to work with each new reprogramming, but they do help.

Even being as careful as I have been, I’ve had my stimulator shut off twice because I forgot to recharge it.  Thankfully, that isn’t a problem with my Boston Scientific stim, like it can be with others.  I generally use one program over 95% of the time and then tweak to migraine or other programs when it can’t handle whats going on.  That usage level gets me about 5-7 days between charging.  I’m still working it into a schedule so it doesn’t interfere but also so I don’t forget.

The best part is that I’m currently taking 1/2 the medication dosage I used to take for my pain!  If it wasn’t for all this super cold weather, I would be doing better as the cold weather has made my entire body hurt.  Hopefully it will warm up next week and the pain will ease, but I’m not looking forward to the winter.  Today was probably my worst day in the last 3 months and I was able to tolerate the pain with my breakthrough medication and my SCS.  I’m still very happy I did this and don’t regret any part of it!

Great Suprises!!

I went back to my neurosurgeon last week.  Dr. Winfree cleared me from surgery for everything.  I am medically cleared.  I can’t believe that just over 3 months post-op I’m good to go.  My procedure went very smooth as has my recovery.

The one thing I have recognized lately is that my stim is helping my migraines, but now they are hitting where my stim can’t cover.  We are going to keep reprogramming but it may mean more leads down the line.  I’ll cross that bridge when I get to it, but it won’t be for at least a year.  I want to reprogram this unit as much as possible to try to avoid more surgery and another battery.

My back and leg pain has been getting better and better.  We just lowered my pain patch this past Monday when I met with my pain management doctor.  I am so happy to see my pain meds going down and down!  The whole reason I did this surgery was to not be on pain meds for the rest of my life, or at least not at the dosages I was currently taking.  The other reason was to get back some of my life from my migraines.  I still haven’t fully gotten my migraines under control and that’s an ongoing issue.  I recently had my worst migraine in years.  It was pounding in my forehead and behind my eyes that wasn’t helped my DHE, ice, position, darkness, quiet, etc.  I ended up throwing up 3 times and going to the ER.  I was so dehydrated by that point, they couldn’t get an IV and I ended up getting all my meds IM.  Thankfully they still worked!  I got DHE, compazine, and benadryl first.  Then once that only brought my pain back from a 10 to 7, they gave me toradol and dexmethasone.  That brought my pain down from a 10 to a 3.  At that point I was discharged and sent home.  The migraine remained for the next few days whenever I moved so I took another dose of DHE and that ended it finally.  I’m more than happy to never have a migraine like that again.

Even with all of that, I am still glad I had the stimulator surgery and don’t regret any of it!

13.5 wks Post-Op

I can’t believe its almost 14 weeks since my implant was done.  I have my 3 month follow up with Dr. Winfree on Tuesday.  Not sure if I’m jumping too far ahead, but I’m hoping he will release me back to my EMS volunteering.  I only ride once a week and have others on my crew to help me lift.  I also just had wrist surgery, so even if he does release me Tuesday I definitely won’t be back riding the ambulance until at least October 1st once my Orthopedic Surgeon sees me again and clears me also.  So really by clearing me Tuesday, they are saying I will be good to ride starting October 1st.

I have had a bad few weeks as of late, more with my migraines than my back/leg pain.  My migraine specialist and I have already talked that I may need supraorbital leads, but I don’t want to mess with my system until we have exhausted every option of reprogramming, etc.  I’m sure Dr. Winfree will have some ideas for us and I’m meeting my Boston Scientific rep at Dr. Winfree’s office Tuesday to reprogram my stim.  It seems like every 6 weeks I need reprogramming, but what I’ve heard is that is normal for up to a year.  There are also some minor changes that need to be made to my R leg programs.  Overall though, I am down on my breakthrough medication and in 2 weeks, my pain doctor has said we may lower my long-duration pain medication!  This is the whole reason I had the stim put in- to lower my pain medications!!

Hopefully I’ll remember to update you all after I meet with Dr. Winfree and the Boston Scientific Rep. 🙂

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.

4 Weeks Post-Op

I am now 4 weeks post-op from my stimulator implant.  I am still so happy I made this decision.  This past weekend I had the first bump in my recovery with an egg shaped area of swelling along my occipital incision.  Along with the swelling came some head pain and nausea.  By Sunday night, the pain was a 7/10 so I called my surgeon who said to see him in his NYC office the next day and get in touch with my Boston Scientific reps to get some reprogramming done.  I also happened to have my monthly follow up with my pain physician that day, so it became busy.

I saw my pain doctor’s PA and she wasn’t comfortable saying things were ok and to just watch it, so she felt it would be best to cya and see the surgeon.  She refilled all my meds and decided that since things haven’t been stable the last few days, she didn’t want to lower my meds, which was ok.  I then spent over 30 minutes with my rep playing with my programming.  We got my right occipital lead to function back like it was, since when the headache and swelling started that lead started acting funny and only stimulating by my incision.  We were able to get the whole lead to provide stimulation again and even managed to find a point that gave me stimulation up the back of my head a bit, which the more the better in my mind.

I then drove over the GWB and to my surgeon’s office at Columbia.  He looked at it and felt it was a seroma between what he saw and what I was describing.  The hardest part was most of the swelling was down when I saw him and then back in full force by 10pm!  Anyway, a seroma is a pocket of fluid that forms post-op as some blood vessels rupture and blood plasma escapes, as well as a collection of some inflammation.  The good part of that is over time my body should just reabsorb the fluid, which it seems to be doing on a daily basis as it seems to swell and go down almost every day.

the stim is still working really well at preventing and treating my migraines as well as minimizing my back and leg pain- legs more than back right now.  My Boston Scientific rep feels I am starting to show signs of the leads scarring into place, which is a good thing, but it also means I may need more frequent reprogramming as it settles in.  I have also started charging my unit and have been having difficulty getting a full charge.  If I use the belt, I have to Velcro it so tight it’s almost like wearing a corset…. My dad even joked that maybe buying and using a corset would help!  I asked my rep about this too and she thinks that the sticky patches that Boston Scientific will send you may help even if I use the sticky patch to adhere the charger and put the belt over that all to give some over pressure.  She gave me the custom service number to call and request them but we talked about how long after surgery I had to wait to use them and she felt another 2 weeks should be long enough, but to just be careful putting the adhesive patch on and taking it off… Especially over my incision.

Overall things are still going great and I am still so happy I waited out the long waits for approval of my trials and everything.  I really thing this stimulator is going to make a big difference in my life.  Now comes the long, challenging process of decreasing my pain meds!  But I can and will do it because I had this stimulator put in for two reasons: 1) to get my life back and 2) to get off these damn pain meds!!!  Hopefully in time I will achieve both those goals!

Oh, by the way, my incisions are looking great, even the ones that were stapled.  I am having some pain and sensitivity at the incisions, but nothing some ice can’t handle.  I’m also starting some scar mobility and scar tissue alignment massages to help things heal the best they can.  I will try to take some new pictures and post them on the picture page!

18 Days Post-Op

Two and a half weeks have passed since my SCS implant was done.  I can say I have very little leg pain and even my back pain is lower.  I have been getting some migraines but the stim has kept them manageable.  Overall, things are doing well.  The only issue I’m continuing to fight is muscle spasms.

I see my pain doctor a week from tomorrow.  I’m actually think I’m going to ask to lower my pain patch since my pain has been doing so well.  However, I really need a change in my muscle relaxer to fight some of the painful spasms I’ve been getting all week.  I had tried to call my surgeon on Wednesday, and I never heard back from him, and its now Sunday!!

This week is going to be a pretty low key week for me, so I want to try to get in touch with my surgeon or pain doctor to get a different muscle relaxer.  If the weather cooperates, I may even try to lower my pain patch for a day to see how I tolerate it.  However, if its going to be a rainy, yucky week then my pain is naturally going to be worse and playing with my pain patch isn’t the best idea then.  Fingers crossed I’ll get to try lowering my pain meds!!  That was the entire purpose behind getting my SCS was to a) get better pain coverage for both my back/legs and my migraines, as well as b) reduce, if not even get rid of, some of my pain meds.  I honestly hope I get some of my previous life back.

Post-op Check-in

Well today was the big day for my follow up with my neurosurgeon.  He took out my staples from the incision in the back of my head and the top of my neck.  He said everything looks good, but not to get complacent with watching the incisions for signs of infection.  He warned me that some of the deeper infections start to show right around the 2 wk post-op time frame.  The best part is my next follow-up is at my 3 month post-op time (so end of August)!  However, that means my restrictions of bending, lifting, and twisting are still in place until then.

I then worked with my rep from Boston Scientific to reprogram my unit and now have different programs to target my pain.  We managed to find a spot that was stimulating the nerves for my low back, but unfortunately for me to feel the sensation, I also get a bunch of sensation in my abdomen and my quads.  Since you don’t have to actually feel the stim for it to work, we turned it down to a sub-sensory level (so its on, but I don’t feel the tingling).  We also worked on spreading out my stimulation along my occipital leads.  I left with 4 new programs to work with for a while.  Then, if I find that I need to be reprogrammed further or adjustments made, I can email my rep and set up another appointment to change the programs further.  This is especially important right now since I’m still healing from surgery and there is still swelling that needs to go away and scar tissue that needs to form.  Once everything has scarred into place, the programs should be able to stay the same for longer, where as right now, they keep needing to change because the leads haven’t settled into their final place.

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!!

Day 5

This spinal cord stimulator trial has been one of the best things I have ever done for my pain.  Tomorrow is going to be very bitter sweet for me.  It is gonna be bitter because it has given me so much pain relief in such a short amount of time and I know I am going to have to wait a while before it will be possible to get my permanent spinal cord stimulator implanted.  However, the sweet side is there as well because I can finally shower again after a week of “baby wipe” sponge baths and I can get all this tegaderm removed from my back which should ease the overwhelming itching that started on Saturday or Sunday!

I also still have the occipital nerve stimulator trial and permanent implant to look ahead to.  I feel that the occipital nerve stimulator trial has the biggest chance of my insurance company denying the procedure.  Usually, once insurance approves the trial, they approve the permanent implant, although there have been times where people have been approved for the trial, have a successful trial, and then are denied by insurance for the permanent implant.

I have been lucky so far, even though insurance took 6-7 weeks to approve the procedure, they did approve it.  It has been an overwhelming success.  In a normal day, I would take breakthrough pain medication 3 times a day.  The day of the trial implant, I was taking pain medications on schedule and probably more than I was before surgery.  However, Day 1 I was back to my normal doses of pain medications.

We unfortunately got hit by a snow storm Monday (Day 3), starting in the morning which made it dangerous to be on the roads for a 12:30p.  Both the Boston Scientific Rep and myself agreed it would be better to rescheduled for the next day.  I was especially glad about that since whenever it rains or snows my pain skyrockets.  However, my pain wasn’t nearly as bad as normal.  I still only took 2 doses of pain medications.  My Dr’s office was able to arrange for us to have a room in the same office suite at 9am the next morning (Day 4) to do my reprogramming as the other dr that uses that office space isn’t in that early on Tuesdays.  During the reprogramming she was able to get my right leg a stronger sensation as the stimulation to my right leg had decreased significantly.  She wasn’t able to tweak the program enough though to get the stimulation out of my side, but I can deal with that for until tomorrow.  My pain for Day 4 allowed me to even take only 1 dose of pain medication before bed.  Last night we had another snow storm and once again I still only needed 2 doses of my pain medication.

While the rep was reprogramming my stimulator, I got to see the relative relationship of my leads to each other.  One was very high with the next highest at least an inch below it and the last one a half in below the middle one.  My rep said this is usually seen when a dr has a hard time getting the leads into the epidural space and into the correct position.  We knew from when my dr talked to my mom post-op, that he had some difficulty, but I would have coverage where i needed it, which I do.  Therefore both the rep that was at my trial insertion and my main rep, who I email with and did my reprogram yesterday, have recommended paddle leads instead of percuteaneous leads for my permanent surgery.  Having paddles put in unfortunately means having a laminectomy which makes it a larger and more painful surgery, but they say its more durable and less chance of the leads migrating/shifting.

Day 2

It is now Day 2 of the trial and I am overly pleased with how well its going.  I will definitely be pursuing a permanent  stimulator as this is going so well.  I have NO pain down either of my legs.  I used to have pain in my left foot and pain from just above my right knee all the way down into my foot and up the back of my leg.  This is all gone.  I also used to have back pain about six inches high starting just above my buttock.  That is also gone.  My pain in both areas had a characteristic dull throbbing ache to it and there is no dull throbbing ache.  There is still some acute pain in my back, but that is from the procedure.

Don’t forget they put two leads into my epidural space and moved them around to make sure they had stimulation to the areas they needed, but they had to move them which is key because there is very little room to move things in the epidural space.  So that is the source of some of my pain.  The other source is where the epidural needles sat for 2 hours and now where these wires are coming out of.  I’m not sure if there is a suture holding them in as my doctor spoke to my mom while I was still coming out of the anesthesia and then passed by while I was working with the rep to program everything, so I really never got a chance to talk to him.  My mom told me that he said they got everything into the spot they needed to, but they had to play with the leads a bit.  He was pleased with what they accomplished and hopefully it will take away my pain.

Now tomorrow (Monday)- which is day 3- I meet with the Boston Scientific Representative to do some reprogramming and tweaking of the stimulator.  I know two things I want to work on are evening out the sensation as my Left leg stimulation is stronger than my right leg.  My left leg stimulation also comes up higher along the side of my abdomen which I want to see if we can get down to just my hip, which in talking to the rep, she thinks we can do that.  The also usually take off the programs you didn’t like and leave the programs you did like and give you some more programs to play with for the rest of the days.  I have at least 3 programs I love.  One is the program I sleep in, the other two are more for when I’m up and around depending on what I’m doing and which sensation I want at that time.  You just know what sensation you want to help soothe your pain.