Wednesday, January 30, 2013

Week 2 post-L5-S1 slice and dice: good news, not so good news

I had a bilateral discectomy on January 18, and yesterday I had my first follow-up visit with my surgeon. I received immediate relief from the searing electrical shock-type pain down my left leg right after surgery, thankfully, but the recovery so far has been difficult and with a few setbacks due to the severity of the disc herniation and what the doc found once in there.

Instead of slicing away all of the herniated disc tissue, he had to chisel more than half of it out because I apparently had the initial herniation was over a year ago (I had no idea). The acute attack I had in August 2012 was what led to the surgery, so the older portion had turned into calcified bone spur. A herniation that old means a higher risk that full recovery -- the numbness, and even the pain, will not be successful. Time will tell.

Aware of the risks and limitations of surgery

So patients facing this surgery are made well aware by their surgeons that the operation may not resolve all of the problems; the goal is to first take care of acute pain that kills your quality of life, and the hope is once the trauma of the surgery itself passes, the nerves affecting feeling and strength in the affected legs will, over the next 6-9 months, resolve fully, partiallly, or not at all.

The riskiest part of it is the first two weeks post-surgery, when the chance of re-herniation is at its peak (10%-15%), in my case it's riskier because of how much had to be removed and how it was removed (the "chiseling). No twisting, bending or lifting more than 5 lbs for at least 6 weeks is the rule. Sitting at length and staying in bed are strongly discouraged.

I haven't had problems with avoiding the bending. It's really hard to catch yourself not mildly twisting because you don't think about it. My partner Kate has been good about reminding me, and I have a grabber device to pick things up that I drop.

The best PT is to be able to walk as soon as possible, working up to 15 minutes a couple of times a day. I was able to walk about 10 minutes the day after I got home. I was dead tired and sore, but it was walking free from the pain that was disabling pre-surgery. It was amazing.

Problems began that evening though-- I started running a fever that jacked up to 102.5. We called the 24-hour line and was told to just take Tylenol every few hours to bring it down, max total dose of 2 grams (8 pills) in 24 hours. It did in fact, bring it down, but I was wiped out, drained, and up all night trying to get fluids in as well.

This occurred for the next few days, always at evening. It was usually accompanied by incision pain that required me to go through a couple of ice packs as well before I could get to sleep.

Then I had several days/nights without a fever. Was able to sleep in 2-3 hour chunks, which wasn't too bad.

Why the fever? 

Well, the inflammation from the surgery itself can cause it, along with reaction from the anesthesia. They discharge you with a device to blow/inhale into every hour or so to ensure that you don't develop pneumonia. I really didn't have much congestion or discomfort from anesthesia this time around.

That explains a fever in the first couple of days. Once you get into the 5-7 day window post-surgery, it's likely to be infection of the incision or continued inflammation from the surgery around the nerves.

The incision

Other good news -- the incision was healing well -- my lower back was very bruised, and the slice was about 2.5 inches long. The surgeon used dissolving stitches inside, and the equivalent of Krazy Glue to seal me up externally. Since I couldn't shower for 2 days after surgery, Kate washed the incision manually with Dr. Bronner's tea tree soap, which is mild and clear and has antiseptic properties. After air drying we put on a bandage. The doc said I could go without a bandage after 4 days, but we did it for an additional 2 because there was discharge, mostly because clothing rubbing against it aggravated the wound.

Then the horrid itching began, mostly from the adhesive in the bandages plus the glue residue that started to break up and wear off of the wound. All normal stuff. Washing it and air drying it a couple of times a day accelerated the healing. But it was itching like crazy until the glue finally fell off over this past weekend.

When I feel the incision, it's a bit lumpy, and the surrounding tissue is tender and a bit inflamed, and the muscles are tight. This is normal.

Improvement in flexibility

Your back is pretty stiff post-surgery, so you have to do specific PT exercises to loosen it and strengthen your core -- as I said above, walking is the best medicine. Kate had to dress me below the waist for the first week. I couldn't do much. This week I am able to dress myself without too much effort -- it's just slow going -- I am able to bend my weakened legs to get my socks on without bending at the waist when sitting. And I only wear clog-type Easy Spirit shoes, so I can easily get in and out of them.

I avoid jeans since they press on the wound, and leggings are hard to get on, so it's usually loose, pull-on yoga-type pants.


Of course since I cannot sit around for long periods of time, watching full movies are of less interest than brain-free programming like the half-hour shows on HGTV, then I can get up and walk around doing laps in the house and rest for a bit. Kate and I had a howler of a time watching one show where this couple is doing a DIY remake of their bathroom and it's HIDEOUS. The husband put in a urinal ("because every real man needs one").  I had to get a screen grab.

When you're bored, lacking energy (and on pain meds)...well, you had to be there, lol. The Facebook thread on my wall about about this urinal was hilarious.

Getting sick, fever returns

It was great to see my brother Tim (he's five years younger); he came in on Friday to stay with me for a week to help out -- and so Kate could return to work. He has been cooking and cleaning and watching L&O (all flavors) with me.

Then the fever and chills returned. It didn't pop as high as 102, but hovered between 100-101. Again, it was only during the night. Since the incision looked fine, we were puzzled about what was causing it. However, I was starting to feel bad, as in a sore throat, and I was also developing nasal and chest congestion.

I was getting a cold. Nice. I had a flu shot, so my hope is that I can fight this off. It's kind of hard to do the walking I need to do for my PT when I feel like crap. The walking was actually wearing me down, and thus the cold was taking hold and running me down some more. Vicious cycle.

I don't have the energy to blog on PHB. It took a lot of time to get this composed because my ability to concentrate is almost nil between the surgical pain and the cold/flu. Good thing I went to the surgeon for the follow up yesterday.

The surgeon's recommendations at this point

1. The incision looks great, no need to be concerned about progress there, other than to continue to ice it if it's uncomfortable.

2. Fever: his concern is that I do have a cold or flu, and to watch that; but post-surgery inflammation could also be the cause. Continue treating with Tylenol as I have. And to watch for chest congestion. Coughing hard is obviously bad for the back -- it could cause reherniation.

3. Return of numbness and pins-and-needles in my left leg and intermittent twitching: the big concern. Since my case is a bit more severe than the norm, he's quite concerned about re-herniation because of the return of pre-surgery symptoms. He said that I definitely needed to recover using the full six weeks that I've taken off from work. The nerves are still settling.

The key recommendation was to be very conservative over the next 2 weeks. If I don't see any improvement in the numbness in my left leg, or symptoms worsen (as in pain), he wants me to call in and he's going to schedule an MRI to see if there has been any re-herniation. If there is, he has to go back in there and operate.

We agreed that I need to watch and wait over these next 2 weeks, monitoring the fever, since he suspects the inflammation from the rough surgery is the more likely reason for this issue than re-herniation, but my recovery is defintely going to be longer than anticipated.

He scheduled another follow up appointment in 4 weeks, and at that time he may do the MRI to confirm where things are if I make it past the next two weeks without incident before releasing me to go back to work after the 6 week mark. The major issues  - 1) I have a desk job and sitting all day is clearly not an option; 2) Because of the cold/flu/whatever it is, it's slowing down my recovery since I am weakened not only from the operation but a slammed immune system.

Thankfully (or not), I'm not on my rheumatoid arthritis meds, which would really put me in the tank re: suppressed immune system. It means my joints affected by RA are still killing me, but I'm safer from illness by being off of Enbrel in the wake of the spine surgery.

So that's where things are at week 2. I'm a bit scared about the next couple of weeks, but mindful that things could also improve.

At this point I have no more paid time off, so a long recovery will be a big problem at some point not far down the road. 

Monday, January 21, 2013

News on life after the L5-S1 slice and dice

I had the very necessary surgery on Friday, January 18, 2013, so here's where I am after the bilateral discectomy now that I'm a few days post-op.

The good news is that the surgery was successful; 95% of the herniation was removed, the not-so-great news is that the surgeon found that the disc was so calcified that it had to have been herniated for at least a year (!)  -- I don't remember having any back pain like that a year ago. The acute attack I experienced that put me on this path was in August 2012. Anyway, so instead of slicing away all of the herniated disc tissue, he had to chisel more than half of it out. He actually used the word "chisel" when describing it to Kate, so I imagine myself as a slab of meat on the table being chopped away on.

The fact that the herniation was there much longer means nerves may be permanently damaged. We won't know how much for several months. I am doing OK; the major shooting pains caused by the herniation is gone.

The chop shop

My surgery arrival time was 10:15 AM. Kate and I were taken to the pre-op room, where we waited for the usual -- prepping, IV insertion (in on first try!). TV was programmed on "E", so we were stuck watching Joan Rivers and Kelly Osbourne blathering on about fashion on the Golden Globes for a while. The nurse attending to me talked about people she's seen come in who are addicted to plastic surgery...hmm.

NOTE:  All of the staff at the hospital treated us so well, recognizing Kate as my spouse. It's worth mentioning because you can't take that for granted everywhere. North Carolina actually has had a law on the books allowing a patient to designate health care proxy for some time; this predates President Obama's executive order to medical facilities to treat same-sex partners as spouses if it receives federal funds.

I was in the operating room at 1PM and my wife Kate reports that I was out of surgery around 4PM. This was supposed to be a 90-minute operation, but there was a complication once the surgeon got cut me open and took a look at the spine.

The photo at left was taken just after I was wheeled from recovery to the room that I stayed in overnight. I was still very groggy, but even then, I could feel immediate relief in my left leg, which was very numb and constantly had shooting pains that felt like electrical charges going down it. Both feet are completely numb, tops and bottoms. The bottom remained numb, I expected that since I have neuropathy that predates the herniation, I did have great relief on the tops of my feet, but it's not a guarantee that all effects are resolved right away, if at all.


Didn't sleep much overnight because the nurses were in every 30 minutes to an hour to check vitals. I was able to get up twice to go to the bathroom on my own, though it required the nurse to unhook me from all of the machines and walk my IV rack into the bathroom for me. Getting in and out of bed was a big production and it hurt like hell, but I could do it.

I hadn't eaten since 6:30 PM on Thursday but was not really that hungry post-op. I had a little bit of chicken soup and saltines before I passed out in the room on Friday to keep my blood sugar stable, but didn't have a meal until the AM. Some egg whites, bacon and toast. I was actually feeling pretty good, albeit sore (pain level around 6.5 out of 10), and was ready for discharge by 11AM, after getting dressed and walking around the ward for about 2 minutes. I was surprised that while I was slow, my limp was now completely gone!

I got my paperwork and instructions (no shower for 2 days; no bending, twisting, lifting more than 5 lbs for the next six weeks; how to roll out of bed like a log, some PT exercises), and was taken down to the car, carefully loaded into the Subaru, and Kate drove me home.

I had a meal, then walked around the house several times to the point of fatigue, and took my pain meds and went to bed early (around 6PM). Woke up with a fever of 101. Took some Tylenol and it went down.


Was up several times during the night, but was up around 8 AM. Completed a walk around my cul-de-sac (actually the entire block)! It was a nice day here in Durham -- in the 60s -- so I took advantage of it for my PT. I'm beat, but this is what my very sore post-op back needs to heal. I'm supposed to walk at least 5 minutes, two to three times a day to keep that scarring down.
The best part of the walk was being able to feel my left leg again; my ankle and feet are still numb, but this is still a huge improvement. After that I needed a nap big time. I posted the pic at right on Facebook and received a ton of support from my peeps.


I was exhausted from the walk, and got into my jammies for a nap. At some point I felt really cold, actually to the point of my teeth chattering. I knew that wasn't good, so I got up and took my temp. It was 101.5. A half hour later it was 102.5. That told me it was time to call the doctor. He suggested the obvious -- take Tylenol every few hours to get it down, and see if it stays down. It's unlikely at this point to be infection of the incision (too soon), but a reaction to the anesthesia (though I'm having no respiratory effects, something unusual for me). It's just watch and wait.

It was a pretty miserable night, fighting it every 2-3 hours or so, getting up while half dazed and checking my temp and taking pain meds and/or Tylenol. I had to get up because I needed to walk around anyway for my back, but it meant very little sleep.

By the next AM the fever broke. The doctor said if this keeps up to come in. He said if it's infection, you'll see a fever around day 5 or so.


Still very sore, and ran a fever this night as well, though it was easily controlled with less doses of Tylenol. I saw my incision site in the mirror for the first time; it is really hideous, bruised and all, but it's healing ok at the present time. Kate has been a blessing and is patient as a saint. She has to help me dress, put on socks, clean and dress the wound, etc. I will  have a hard time getting up from a seated position and getting into/out of bed for a while; that's to be expected. I rode in the car to go to the drug store again to get more tegaderm bandages, and walk around. As you might imagine, the outings/walks are tiring, but it's good for the back to keep moving.

I managed to stay up all day without a nap and didn't use any pain meds between 4AM and 5PM when I went to bed. I tend to have a high pain threshold since I already live with the chronic pain of rheumatoid arthritis and fibromyalgia, so it's easy to step down off of sledgehammer meds.

To feel useful, I folded and put away some laundry, being careful not to twist or bend -- Kate got me one of those grip and grab devices to pick up things off of the floor or above my head, so it's a godsend.

The annoying issue aside from the fever is the fact that today the numbness in my left leg returned. It was completely gone right after surgery. My guess is there's swelling inside from the operation itself that is pressing on the nerve again, but it should go down in time. Messing around there as much as he did, it's not surprising there is a lot of inflammation and bruising. This is apparently normal, so I was only disappointed, not panicked. I'm still optimistic about recovery though; I knew in advance it would take months to know what "full recovery" will look like.

I expect to get out again for additional walks this week, and to take it easy. After all, if I don't take the time to heal, there is a much greater chance of re-herniation and a trip by to the operating room, something I definitely want to avoid.

Will be back to more blogging as I can. As you might imagine, my concentration level isn't what it could be, lol. I am, however, on social media when I'm not passed out or walking. :)


No fever last night, but incredibly difficult getting into a comfortable sleeping position. Back hurts, but if I have enough meds, is tolerable. Absolutely cannot sleep on my stomach; side sleeping is ok, but only left side, because if I'm on my right side, it's hard to get out of bed.

Changing the bandage today, Kate noticed that the incision is not draining as much, the bruising is still pretty nasty, but starting to change color for the better.

Went on a jaunt to the store to get my walking in (Kate drove, of course), taking care when getting in and out of the car. Even though the numbness is back in the left leg and it's still weaker than my right, I'm not limping because the shooting pain is gone. Got a brush on a handle to help when showering and some new bandages. Now I'm really sore and beat, as expected.

I'm also finding out what clothes hurt a lot on the incision now - jeans=argh, some leggings=argh, dresses=ok, pjs=ok. Fashion styling will be limited during my recovery, dammit!

Thursday, January 17, 2013

No more waiting - surgery is Friday (go away snow!)

Got the call, have to report for my L5-S1 discectomy spine surgery at 10:15 AM ET tomorrow.  Of course the major issue is whether the weather will cooperate. We've had a mild winter here in NC so far and of course tonight's the night that our first winter storm in central NC is blowing through.


Blah, Blah, Blah. Nasty weather. I'll get to the hospital though. I've done all my planning and did my pre-op yesterday. According to the surgeon, they will have me up and walking within six hours after surgery if it goes well (!) 
Open discectomy is usually performed under general anesthesia (the patient is unconscious) and typically requires a one-day hospital stay. It is performed while the patient is lying face down or in a kneeling position. During the procedure, the surgeon will make an approximately one-inch incision in the skin over the affected area of the spine. Muscle tissue is removed from the bone (lamina) above and below the affected disc and retractors hold the muscle and skin away from the surgical site so the surgeon has a clear view of the vertebrae and disc. In some cases bone and ligaments may have to be removed for the surgeon to be able to visualize and then gain access to the disc without damaging the nerve tissue. This is called a laminectomy or laminotomy depending on how much bone is removed.
Once the surgeon can visualize the lamina of the vertebrae, disc and other surrounding structures, he or she will remove the section of the disc that is protruding from the disc wall and any other disc fragments that may have been expelled from the disc. This is often done under magnification. No material is used to replace the disc tissue that is removed. The incision is then closed with sutures and the patient is taken to a recovery room. 
My doc will use dissolving stitches inside, but glue me on the outside. I may be released same day or the next day, it will depend on the pain management - I cannot imagine not staying overnight.

Dr. said there will be wifi in my hospital room...woohoo!

Best case scenario is that all of the weakness, numbness and shooting pains down my leg and to my left foot will stop very soon after the operation. Realistically it may be hard to tell how well I will recover until I go back to the surgeon for eval on the 29th.  For six weeks I am not to lift more than 5 lbs, avoid twisting and bending, and need to walk as much as possible, not being sedentary. The latter poses a challenge for returning to work. I may actually feel better within the six weeks, but returning to sitting a desk is not good for healing -- sit no more than for 30 min at a time, they say. In any case, I will follow the recommendations because I don't want another herniation or a return to the operating room because I rushed myself.

Wednesday, January 9, 2013

Just have to make it for a little over a week...

Eight days until surgery (bilateral discectomy, L5-S1) on January 18.

Busy day at work. Trying to wrap up work for med leave - announcement of my leave launches the series of predictable requests by various parties to squeeze every last bit of work out of me before I go on leave. I am slated to work through the 17th. I anticipate it will only get worse.

Honestly, if I got hit by a bus or died on the operating table my workplace have to get by without me, so they need to chill out. There will be some chaos, and life goes on. Everyone is replaceable.

Prep work for the slice and dice

Pre-op is finally scheduled for next Wed. There was a lot of phone tag, but the surgeon's office managed to get a hold of me in between meetings. Now have to deal with getting FMLA paperwork in order, so the doctor can get his portion filled out and I have to get it back to my employer to process before I go on leave. So I am delivering it in person tomorrow, and telling them I will pick it up and hand deliver on this end so it doesn't go in some black hole.

It would be tiring enough with all I'm doing under normal circumstances; unfortunately I'm in pretty rotten declining shape as the steroid shot in my spine is wearing off, and I still have my rheumatoid arthritis adding to the misery. At least my brain is functioning despite the pain. I don't know how I'm managing, quite frankly.  When I get home, I'm wrung-out dishrag tired, wondering how I will get myself together again in the AM.


Thurs 1/10 

Take FMLA paperwork to surgeon's office to get medical documentation

Fri 1/11

Stop taking aspirin.

Wed 1/16

Hopefully pick up FMLA paperwork to take back to employer.

12-2PM: Preanesthesia counseling -- the usual tests:  bloodwork, EKG, anesthesiologist. Eval of all current meds and what I can and cannot take before surgery.

4-4:15 PM: Pre-op Counseling: Meeting with surgeon’s assistant. Pay initial deductible + fee for the surgeon. Rest of the bill will be from the hospital itself; they will bill my insurance and I will be invoiced post-surgery. Since this is the beginning of the calendar year and I am responsible for 10% of the total surgery/hospitalization, I will have to shell out a big hunk of money -- the whole deductible in one fell swoop.

Thurs 1/17

12PM-4PM. Await Hospital Prep call.  Will let me know what time to be there for surgery on 1/18. Of course I'm used to the pre-op drill:

  • Do not eat or drink after midnight. 
  • Only take AM water for meds.
  • Will be told what injectibles to take
  • Will be told what to bring to the hospital (I may or may not stay overnight depending on time of surgery and how things turn out).

Friday 1/18

Day of Surgery: will know whether I will stay overnight after surgery. Got someone to sit the dogs in case Kate has to stay overnight with me.

I know I won't be able to lift more than 5 lbs for a long while, with limited bending and NO twisting at the waist. I will, however, have to get up and walk as soon as possible (and frequently, distance isn't as important as beginning to move ASAP) to avoid scarring inside near the spine.

Tues 1/29

1:15 PM: Return appt w/surgeon. At that time we'll have a better idea of recovery.

Friday, January 4, 2013

UPDATE: Slice and dice Jan 18 - it's time to (hopefully) fix this spine

UPDATE: Just heard back from the scheduler -- the big day is January 18...

My fun on New Year's Eve? I went to surgeon #2 (who will operate on me). Where things stand since the last post is that my disc herniation at L5-S1 he said on a severity scale of 1-10 is a 9.5. Lovely, but it's reassuring to know just how bad it really is on some sort of continuum. I've had 5 doctors look at the MRI and all say variations of "oh, that's bad," but this was the first time one put it in the perspective of their experience over thousands of operations.

Geez at a 9.5 it's no wonder that I'm still limping and can't feel most of my weak left leg and foot ( my right leg is affected as well, just not as bad). He was actually surprised I had done the three rounds of epidural steroid injections considering the severity of the herniation; he would have just operated. Sigh.

So what's going to happen is that I will undergo a bilateral open discectomy - the herniation is so big that he will have to cut it away on both sides of my spinal cord at L5-S1. I'm going to schedule it hopefully during the third or fourth week in January.

That means I've been in the midst of a sh*tty quality of life since late August 2012, when I suddenly had the acute, shooting, pain down my left hip and leg and then spent six horrible, fruitless hours in the Duke ER where they didn't even do sufficient diagnostic tests to find the obvious herniation. That came a few days later, thanks to the intervention of my rheumatologist, who got me in for an MRI.

Major risks of the surgery? The usual  - infection (1%), the surgery doesn’t “fix” the pain, etc. Many patients experience pain relief (the acute shooting pains from the herniation)  after surgery, but that issues related to numbness, weakness in legs may not resolve for up to six months. There is a chance that this will never resolve. Also, the recovery from the trauma of the operation itself can affect the nerves since they have to be moved aside during surgery, which can mean more uncomfortable sensations and yes, even pain.

Full recovery I was told, is usually six weeks. Assuming there are no complications.

One recommendation is to get up and walk gently ASAP for as much as you can stand it to avoid scarring around the spine. am hopeful that the acute pain will be resolved, but I'm realistic that the weakness and numbness from nerve damage could likely remain.

After the operation there is a roughly 15% chance of reherniation. The key is not to lift more than 5 lbs and no twisting of the spine during recup. The chances of reherniation go way down if you allow it to heal properly. My major frustration will be the limitation of not being able to drive. The doctor optimistically said if you can get into the car (by not twisting AT ALL) and not hurting, you can drive. I'm not going to even try for a good while.

It also means no lifting groceries or laundry; Kate's going to take over my laundry lifting patrol; I'll have to settle for just folding if I'm feeling OK. Fortunately we live in a ranch, so it's all one floor, with only about 10 stairs to get into the house.

As far as work goes it's complicated, I only have about 5 weeks of Family and Medical Leave Act (FMLA) time available for the operation and recovery; prior to surgery I have to apply for accommodation under the Americans With Disabilities Act for the ability to take extra time without the risk of losing my job.  And it's not granted that the request will be approved.

Yes, that's how tenuous employment is -- no matter how hard or long you've worked at your job -- when you have chronic disabling illnesses that eat away all your paid time off and unpaid leave afforded by FMLA. The rheumatoid arthritis over the last year has just robbed me of my health in so many ways; this herniated disc just added to the nightmare. So the stress of illness is compounded by wondering whether you can remain gainfully employed -- with the critical health insurance tied to your job. Even so, I'm more fortunate than many.

But right now I am focused on getting under the knife for the slice and dice. That tells you how tiresome it is to be in this level of constant pain when you want to put yourself in even greater short term pain and disability in order for a chance at an improved existence.

So I'm ringing in 2013 with anticipation and hope, along with a healthy bit of apprehension.