Herniated Disc Update #9 - One Year Later

It's been just over a year since my L3-L4 disc decided to blow up so it's time for a final update on my saga. 

After trying pain management with medication and epidural steroid injections as well as physical therapy for over five months, nothing improved enough to make it through the day without extreme pain.  I was finally ready to consult with a neurosurgeon about this.  My neurosurgeon came highly recommended by a number of people I trusted, so when he said he could fix this and make me feel better, I decided to try a surgical intervention.

Seven months ago I had a laminectomy and discectomy to relieve pressure on my nerve.  While the surgery went well, it took much longer than my neurosurgeon predicted for me to feel 100% again, which made me question my decision to have surgery in the first place.  You hear so many tales of back surgery gone wrong, and the longer it took for me to feel better, the more nervous I became.  Had my surgeon said something along the lines of "your nerve has been compressed for so long that it will take quite a while for it to settle down" I would have accepted the continued leg pain as part of the recovery instead of worrying that the surgery didn't solve anything.

That said, surgery was the key to healing my herniated disc.  I can say that now.  I can't even remember when my leg pain finally went away thanks to my other medical event, which was a grand mal seizure two months after surgery.  As I was dealing with a new set of issues, the leg pain went on the back burner.  I suspect it was somewhere around January that it finally resolved.

As for my back, my physical therapist told me that after having surgery - any surgery on any part of the body - it's changed forever.  So I need to be aware of that and not do anything that might bring on another disc problem.  I will not do any kind of jumping/high impact exercise ever again.  And that's OK - better to lose the jump rope than to go through that painful hell. 

I've been gently easing back into exercise.  I walked for about four weeks before adding in a little bit of running.  I like running and want to do it.  My hopes are to build up to running three miles.  However, if I start to have pain, I will stop.  It's not worth getting hurt again.  I don't see myself ever running long distances - I think my days of doing a half marathon, or probably even a 10K are done.  But if I can run a few miles and feel good, I'll be content with that.

There is a happy ending to my herniated disc.  It took a lot of trying different things to get to this point.  It was the most painful thing I've ever gone through; pain that was 24/7, pain that hurt so badly that I was ready to hurl myself out of the car at one point.  It's not something I would wish on anyone.  But if you've discovered my blog while searching for someone who has gone through this and come out OK on the other side, I want to give you some hope that it can get better.  Hang in there.

Herniated Disc Update #8 PLUS Seizure Update

Herniated disc update:  It's been 3.5 months since I had surgery - a laminectomy and discectomy of the L3 - for my herniated disc.  I had a third follow up appointment with my neurosurgeon last week; we discussed getting another MRI to check things out since my leg is still not 100% better - it's hugely improved, but I still have incidents where if I move wrong or get in the car awkwardly, I'll get that old familiar shooting leg pain.  But, since the recommended course of action would be to continue to wait for more healing to happen, we decided to hold off on the MRI.  I'll hold off until August, if need be - our insurance runs on a fiscal year so I've hit my deductible already and any big tests won't cost me much at this point; why not get one if there's any doubt?

With all of the craziness of the seizure and then traveling, I have completely gotten off of my physical therapy routine, which is too bad because I can tell that I'm not as flexible as I was; in fact, every time I get up from sitting, I have to steady myself and I walk stiffly for a minute or so until things get moving again.  My doctor is very pro physical therapy so I'll begin another round with Amanda this week and hopefully with that plus more time to heal, I can put this herniated disc saga behind me soon.  I'm ready to be done with it, believe me.

Seizure update:  A lot has been happening with this while nothing much has changed.  Right before Christmas I had a second opinion via telephone from a seizure disorder neurologist located in New Haven, Connecticut.  This was via 2nd.MD, which is a service provided as part of our health insurance, and while I went into it thinking it could be a whole lot of nothing, it ended up being incredibly helpful.  Prior to the telephone call I'd given permission for my ER records, with the CT scan, MRI, EEG, etc, to be sent to the specialist, so when we spoke she'd gone over everything and gave me her take on what might be going on, along with what she recommended. 

She agreed with my original neurologist that with the EEG showing abnormal activity, I do need to be on anti-seizure medicine, although she recommended switching to one that should be easier on me than the Keppra has been, side effect-wise.  She also recommended getting another EEG, even while taking the medicine; she said that if it came back showing less abnormal activity, that would be an indicator that the medicine is working, which would give me some peace of mind (more on that in a bit).  Another thing she recommended was that I see an epileptologist in Houston for a workup, which I'm on board with doing.

While this neurologist does think I have some sort of seizure disorder, she was encouraging in getting me back to living a normal life.  Because I had no indication that a seizure was imminent, and because I had been dealing with a little stomach bug/not feeling great the weekend that it happened, she recommended that I pay attention to times when I am not feeling great, and during those times to not drive or swim or do anything that might result in getting seriously injured if I were to have another seizure.  Also I'm supposed to be sure and get plenty of good sleep, which hasn't been happening for me for years now so I'm not sure how I'm supposed to accomplish that, but I have been trying to go to bed earlier.  I still wake up in the middle of the night but I'm more rested when that happens, LOL. 

Last week I not only had an appointment with my neurosurgeon, but also with my neurologist - it was Neurology Week, woohoo!  I told my neurologist about the second opinion I'd gotten and she agreed to switch my anti-seizure medication to Lamictal; it's a very slow titration, 25 mg/week for two weeks before increasing another 25 mg, and we're heading to somewhere around 150 mg, so I'll be continuing to take the Keppra while this is happening.  I'm glad she was agreeable to the change.  She is putting in a referral for me for an epileptologist in Houston while my neurosurgeon is looking for one to refer me to as well - I am hopeful that between the two of them I'll end up with someone who can help me navigate through all of this and figure out what I really am dealing with.

What I want to end up with all of this is some peace of mind.  I'm having a hard time reconciling what happened.  One minute I was standing in my kitchen and then next thing I knew, I was on the ground, not knowing how I got there.  To go down like that with no warning, and to not be aware or have any memory of what was happening during the seizure has been really unsettling to me.  It doesn't make a lot of sense as to why it bothers me as much as it does, but when we were at a family gathering recently I happened to overhear someone say that he'd had a seizure, and when I asked him what had happened, he had a very similar story regarding how mysterious the entire event felt to him.  While I was sorry that he'd had a seizure, I was really glad that I got to compare and share our experiences.

I try not to worry, at least consciously, that this could happen again.  After all, I'm on anti-seizure medication, so that should be taking care of things, right?  But I will admit that the fear of another seizure is still deep inside of me because I'll notice that if I'm not feeling great I'll suddenly become irritable, and I think that's the worry - warranted or not - coming out.  I am still on my state-mandated three months of no driving which is fine with me.  It's annoying and inconvenient to not just hop in the car and go somewhere whenever I want to, but it's one less thing to worry about.

As for now, I'm doing what I'm supposed to be doing - taking my meds, resting my still-concussed brain, and trying to get back to my regularly-scheduled life, whatever that is at this point.

Worst. Ride. Ever.

Welcome to my roller coaster, where one thing gets helped but then another thing stands out more, pain-wise.  Tickets are free but you're gonna pay if you get on this ride, believe me.

After my two injections last Thursday, I waited both in anticipation of feeling like a new woman, and in dread of potential side effects that might make me feel horrible for days.  Well, neither really happened.

I don't feel like a new woman.  Yes, I do think the injections helped relieve some pain in my glute and down the outside of my thigh.  But - and I'm conjecturing here - I think that by easing that pain made the nerve pain from the herniated disc stand out more.  Or else it was a coincidence, but man, my standard pain areas (groin, front of thigh, knee) have been hurting bad.  Funnnn times.  So, since I was experiencing a pain flare, I increased my Gabapentin (the nerve medication) by an extra pill, taking two in the morning instead of one, with my standard two in the evening.  It's not like I decided to do this of my own volition; my pain management group told me I could take an extra Gabapentin if I was hurting a lot more.  More on that in a minute.

I was very apprehensive about side effects from the steroid injections thanks to my experiences in the past.  This go-round it was changed up and they used a different type of steroid for the injection in hopes of avoiding them.  I got the standard steroid flush on day two:

It looks like I used the wrong shade of blush for my skin tone...and swiped it over my nose and chin as well as my cheeks and then hit my neck and my chest for fun.

Once the flush appeared I braced myself for the rest of the side effects, but none came, can you believe it?  Something went well for me for a change.

And yes, I realize that more than one thing has gone well for me since this began, but living like this for so long is an emotional and physical roller coaster.  It's hard to make plans because I never know how I'll be doing - for example, we were invited to Logan's birthday party on Saturday afternoon and I didn't know if I'd actually get to go...it all depended on what the steroid did to me.  Thankfully I was able to attend (fun pictures to come in Friday's post), but it's so hard to get excited for something when you know your body might let you down.

Back to the Gabapentin:  I ended up having a pretty rough time with it; my hands were shaking much more than usual, distractions were at an all-time high, and my memory was shot.  So I dropped back down to my usual dosage yesterday.  Also yesterday, my PT gave me some exercises to try when that pain is really bad and after my visit I did feel better so maybe things are turning up.

See?  Roller coaster. 

Herniated Disc Update #4

I had an appointment with the PA, Kristen, at my pain doctor's office last week.  Jeff met me there and I am really glad he did because I'd forgotten a lot of the oddities that had happened in the seven weeks since my last visit.

He brought up my blue fingers and the auditory hallucinations, as he called them - I just said there was a party happening in my head.  Off and on, I could hear the murmur of a group of people talking but couldn't really make out any words - it was like they were at a party in the distance.  Yes I know that is weird but it only lasted for a few days and I think it probably was related to going off the Butrans pain patch.

I was nervous to tell Kristen about my decision to not get another epidural steroid injection since the last one didn't help at all - I stayed the same, pain-wise.  Well, I didn't need to be worried; she listened to me and agreed that another injection wasn't in order, whew!  I know everyone is really kind and caring at my pain management clinic, but I rarely challenge a doctor so this was hard for me to do.

Kristen was very thorough with going back through her notes, confirming pain levels over the last several months, and not only where I was hurting, but things like the pins and needles at my knee - did it wrap around the leg or was it only in the front?  Although it happens constantly, I didn't know - isn't that funny?  I got the answer a few minutes later when the pins and needles started again:  it's only on the front.  It happened off and on during the appointment and I was glad that Kristen could see the frequency and also how I wasn't doing anything when they began.  We went over my prescriptions; I was only on Gabapentin at that point.  Oh and four Aleve a day.  Even with that, I still hurt.

That was the talking part of the appointment; next I sat on the exam table while she tested my leg strength.  Then the fun began, with her pressing on my back to see where I hurt.  My back was barely an ouch, but when she got down to my hip area, or the sacrum as I have learned, there were a lot of ouches, especially on the left side.  Then there was more talking:  she suspected that the reason why the last injection didn't help was because the previous one had done the trick and the herniated disc and fragment had moved off of the nerve root.  So the injection did nothing because there was nothing to be done...in that area.

Jeff and I got an anatomy lesson at that point, where Kristen showed on a skeleton model the area that was hurting on me.  She explained that everything sort-of overlaps in the back and one issue can lead to another, and I was experiencing sacroiliac joint pain, or SI pain as it's commonly known.  The areas where I was still hurting (glute, groin, leg) can be caused by the SI, and she was pretty confident that was where my lasting pain was coming from.  Of course Jeff and I both said "wait, was there a herniated disc??" and she said yes, very much so, as shown on the MRI.  So while the herniated disc is under control (fingers crossed, PLEASE BE SO), now we can see that the SI joint is inflamed.

The treatment for this?  Taking Meloxicam, an anti-inflammatory drug, plus getting an injection in that joint.  Yes.  Another injection.  Yippee.  Obviously I am not thrilled about that because of how sick I got from my last steroid injection, but if this works I will be mostly pain free and that will be worth it.  The good thing about this is that if the injection doesn't work, there are alternatives, such as a plasma-rich injection - but that isn't covered by insurance so we might as well start with the one that is.  Hopefully the steroid injection will happen later this week; my doctor's schedule is pretty full plus he's on call at the hospital, so we'll see.

If it sounds like I'm throwing everything at this and hoping something sticks, I kind of am...with the advice of competent medical professionals, of course.  But I'm tired of hurting, I'm tired of not getting to do much because of the pain, and I'm tired of this dominating my life.

I'm still going to go to the neurosurgeon consultation appointment in September.  At this point I still want to hear what his take is on my injury and what he might recommend.  I don't think I need surgery but I'm not a doctor and I could be wrong - shocking, I know.

WWW - In Which I Go To Physical Therapy

I finally started physical therapy last week - Thursday, to be exact.  The reason why it took a while to get started was the therapist that I chose:  she is the owner of the practice and is the only physical therapist that patients see; as you might imagine, that appeals to a lot of people so she books up fast.  With an injury as complex as a herniated disc, I didn't want to be just another cog in the machine at a large physical therapy clinic, seeing whoever was open at my appointment time - I wanted a therapist who I could trust implicitly, and that is Amanda Lightsey.

I first met her about 15 years ago when I worked as a service associate at the physical therapy clinic of the local healthcare center - she was fairly new in her field but I saw how invested she was with each patient and I could tell she did good work.  Then several years ago while I was running one of our regular Saturday routes I passed a storefront with her name on it - she'd started her own practice!  I was really pleased to see that and tucked the info away in case I ever needed to go to physical therapy.  Boy howdy did that come true.  After the first session I knew I was right to wait to get into her practice - I left with a lot of hope for a full recovery from the herniated disc without having surgery.  Here's a picture of us after the second session:

Amanda and I - don't you love our matching pink sneakers?  If I hadn't known her for so long I would call her Dr. Lightsey, but she's still Amanda to me.

My first visit consisted of an evaluation, both physical, with Amanda taking measurements of how far I could move my legs in different ways, and practical, with questions on limitations that I was experiencing, etc.  Also there were tears when she asked how my injury had affected my social life.  Luckily she had Kleenex nearby.  She said it was quite normal for patients who had been active to go into a depression when everything is taken away, and through my tears I felt better knowing that this was a normal reaction to having your life turn to crap.

After the evaluation it was time to get down to business.  She showed me three different exercises to do, isolating certain areas as I did them.  One was to do a bridge using only your glutes to rise up, with no involvement of the abs.  Isolating just the one muscle group was hard, physically and mentally.  I have never had to use my brain so much to work out, but to quote Ralph Wiggum, I'm learning!

I did a couple other exercises including the log roll and the triangle tilt.  Even with the handouts she gave me, I was a little confused once I tried them at home, so I did my best but I was glad my second appointment was just a few days away.  Turns out I was nearly correct with the log roll, but the I needed a new tutorial with the triangle tilt.  I appreciated that Amanda had a different way to approach that one, and once she had me practice that way, I felt more confident with it.  I had her take some pictures of me doing it the right way so when I lost my bearings at home with it, I had a point of reference:

Everything begins with the glutes.

At my second visit not only did we take pictures, but she demonstrated two of the new exercises while I videoed them and that was super helpful later on at home - I'd watch the video to review, then do the exercise with more confidence.  The new exercises were Chaplins, sit and tilt (I've named that one, it had a four word name that was cumbersome and hard to say so sit and tilt it is, LOL), and the table top.  I was sweaty and my left leg was shaking like Jello when I finished that session.  I also felt so good!  I haven't been able to really move like that in a long time and I daresay I had the tiniest bit of endorphins kick in.

I'm to do my exercises 2 - 3 times a day, stopping each one when I'm fatigued.  At that point the form is lost and it's time to give my body a rest.  My left leg knee was pretty sore yesterday, in an area that is different from my normal nerve pain, so that's interesting and if it keeps up I'll email her to see if I should change things up, plus  all the muscles were sore in both legs.  I really got a work out!

After Monday's session I went directly to Starbucks and got an iced coffee:

Vanilla sweet cream cold brew - a nice treat after my intense PT session!  

I was surprised to receive a Starbucks gift card in my email shortly after Monday's post went live, with a nice note of encouragement from one of my readers, Karen R.  It made my day that someone who I've never met did something so nice for me.  Thanks again, Karen!