Tuesday, June 28, 2011

Contacted surgeon in England

So I send an email to Dr. Nick Boeree via the inquiry form on his website a few days ago, and Dr. Boeree responded himself within 24 hours and gave instructions on how to upload my MRIs and Xrays.  I was surprised that he responded himself to an initial inquiry instead of an assistant.  His email was very cordial.  Once I uploaded the info, he emailed me back and said his PA would contact to set up a phone consultation with me once they got my images into their system and he had a chance to review them.  You have to pay about $400 for the 30 min. consultation, but I think they deduct this from the price of the surgery if you end up having one there.  In any case, it will be well worth it either way.  So now I'm waiting for his PA to get back to me.

Thursday, June 23, 2011

Appt. with Surgeon

So I met with my surgeon today.  We reviewed my status and he said he usually recommends doing another discectomy surgery before going overseas to try a disc replacement, but he also said that a disc replacement was an option if that is what I wanted to do.  I voiced my concerns about the large tear in my disc, and the failure of my disc to heal on its own when I had the internal disc tear, again failing to improve on its own during a year of conservative therapy after the initial herniation, and a failure to heal after surgery even though I did everything everyone recommended to me and more.  Also, I never regained the ability to sit for very long even after the surgery, and there would be at least another 4 month recovery before we could even see if the bet paid off.  He said he understood those concerns and that they were valid.  He had researched the Spinal Kinetics M6-L and said it looked like the best disc out there based on the data available.  He also mentioned the Rainer CA disc which they were looking at potentially being a trial site for.  I had reservations about the Rainer's ability to form a lasting bond with the bone.  I had read in another blog, where Dr. Boeree had the same concerns, and had also heard of the plastic walls of the disc splitting.  Also, there is almost zero track record for the Rainer disc so it would be a complete shot in the dark.  The M6 doesn't have a large number of years of experience, but it does have at least some years of usage with excellent results.

So we decided to pursue the disc replacement path.  He said he would have someone send me my medical records in an electronic format so I could send them overseas.  He also gave me a printed copy that I can scan in manually if I need to.  So the next step is to gather my records and contact Dr. Nick Boeree in England for a consultation.  From the hours of research, and numerous personal experiences with Dr. Boeree I had read closely, I have hope that he will be able to help.  I have yet to find a negative report from a patient of his.  My parents have their passport applications sent in, and I sent mine to be renewed this week and I paid the extra fee to have it expedited.  My surgeon said he would do whatever I needed to help facilitate the process, which I appreciated and is the reason I chose him to be my surgeon in the first place.  I hoped I wouldn't have had to rely on his experience with disc replacement when I had my first surgery, but I'm glad I planned for it just in case.

Tuesday, June 21, 2011

Waiting... and research

So after the cortisone shot has had time to kick in a bit, I'm feeling a little better.  I still get woken up in the middle of the night when I accidentally roll onto my side which seems to cause something to press into the nerves and I'm usually sore in the mornings unless I happen to sleep perfectly on my back without shifting in my sleep, which almost never happens.  But with ice and medication, I'm usually at a tolerable level by mid afternoon if I just lay down all morning while I work.  Sitting is still a mixed bag.  Sometimes it seems I can sit for maybe up to an hour, and other times, less.  I think it depends on where the disc fragment happens to be at as I think it moves around a bit.  The waiting and waiting seems endless at times.  It has been nearly a month since I re-herniated my disc and I'm anxious to get back on the road to recovery, which will probably require more surgery and a long recovery.

I'm just convinced that my disc is shot.  The latest MRI shows that it is darkening more and more, which means that it is drying out and degenerating.  Over time, the disc will most likely loose height and cause the vertebrate to get too close to each other and will eventually pinch the nerves going down my leg.  This is what is known as degenerative disc disease (DDD).  Right now my disc height is still ok, but over time, will most likely cause me problems again.  This is in addition to the risks of continuing to re-herniate disc fragments due to the large tear in the back of my disc which has refused to heal properly, which has already happened.  My disc has proven 3 times now (internal tear, first herniation, and second herniation post surgery) that it does not want to heal properly on its own and I think it's time to accept that and move towards getting it out of my body so I don't have to keep facing these issues over and over like I'm starting to now.

I'm hoping to get the ball rolling towards artificial disc replacement (ADR) at my next appt. with my surgeon on Thursday.  I know it will probably take at least a month and maybe even more to get all the arrangements, consultations, etc. made and that is assuming that everyone agrees and there aren't any more curveballs like finding out for some reason I'm not a candidate.  From all the research I've done on my own, I think I should be a good candidate (single disc level, good health, no bone weakening issues, no other back problems besides the disc), but that is just my University of Google medical degree talking.  After the surgery, they usually say it takes at least 6 weeks for the bone to fuse to the disc to ensure it stays in place and another 6 weeks before the bone is solid, and can take 9 months for nerves to completely settle down since they may be slightly stretched due to the change in disc height that can occur when the artificial disc is implanted.

So in the meantime, I've been doing more and more research to make sure that this would be the best option for me.  A lot of people ask me, "Why can't you get something done here?"  Well, they do perform some disc replacement operations in the US, although it hasn't been done here that long.  Unfortunately, most of the discs they use here are ball and socket designs such as the Maverick, or a slight variation with a plastic core like the ProDisc.  These artificial discs do not provide any shock absorption at all, which is one of the main functions of your discs.  Without any shock absorption, the other discs are forced to take the extra force and can lead to faster degeneration of the other disc levels (this is also a risk of spinal fusion surgeries).  Also, the ball and socket type discs do not provide any resistance when twisting like a normal disc does.  This can lead to problems with the facet joints since they can get overextended and damaged by the unnatural range of motion and lack of resistance.  My surgeon said that he has had a number of patients with the Maverick ball and socket disc and most have done very well.  The simple design of the Maverick is attractive in its simplicity, but since I am so young and want to keep the rest of my back as healthy as possible for as long as possible, the obvious known design issues make this not a good option for me.  Also, the two parts of the disc are not mechanically joined together by any means other than the natural pressure of spinal bones which makes me a bit nervous.

The disc I'm looking at is called the Spinal Kinetics M6-L developed by the Spinal Kinetics company based in the US.  It has a polymer core and woven fiber annulus that provide shock absorption, graded resistance when twisting, and movement in all 6 planes of motion.  My surgeon agreed that it most closely mimics the natural spinal disc closer than any other artificial disc in existence.  More than 10,000 of them have been implanted as of March of this year, the vast majority of which have been in Europe.  There are no obvious design flaws that have been called out other than the unknown performance of the polymers in the lumbar spine over the life of the patient.  No significant flaws were found during testing where they simulated heavy loads far beyond what the disc would experience in the human body while being immersed in a solution which mimics the environment in the body.  I haven't been able to find a single report of a failure of the materials yet in all my hours and hours of research of the M6, however, they have not had many years to prove themselves, so there are no guarantees on what will happen over time.

I have been continuing to follow a blog of a 25 year old guy who had an M6-L implanted.  He has kept a very informative blog including all of his research and consultations with his various doctors about their opinions and experience on the different discs.  I have a link to it on the right and would suggest anyone considering an ADR, to read his blog and pay close attention to the links he has to the M6 testing data.  His results so far have been much much better than the results I had with a discectomy (even before I reherniated).  I do realize however, that this does not guarantee I would have the same results if I had an ADR.

I have also been doing lots of reading of a few online communities devoted specifically to ADR surgeries where I can read personal experiences of hundreds of people who have had different discs with different doctors.  My research has almost become like a second job and I usually spend several hours a night searching and reading as much as I can.  I think at some point though, you can do too much research, and you are left to realize that there are no sure things.  But I guess I get comfort out of knowing as much as I can ahead of time so that I at least feel like I'm making the best possible decision based on all the information available since this will most likely affect me for the rest of my life.

Sunday, June 19, 2011

The roller coaster

I went in to see my surgeon the morning after I had the very strong, sharp pains and muscle spasms.  I was kind of walking like an 80 year old, being very deliberate in all of my movements.  He took one look at me and said, "You look like you're walking very carefully."  I explained what had happened and he said that it was most likely scar tissue ripping free and that while it could be very painful, it actually was not a bad thing as things just freed up.  He gave me some oral steroids and muscle relaxers and said to call back in a week if it was still giving me problems and I would need to get another MRI.  I felt pretty relieved, most likely no big deal.

Over the next week, I experienced more bouts of sharp pains and some hip and leg pain that would come and go.  I just took it easy, and didn't really do much.  At times, it actually felt better than it had in a long time to sit, but then would be bad at other times.  The muscle relaxers turned me into a space cadet and it was very hard to keep my thoughts straight enough to work.  After a week, I developed a pain in my heel, although I had done nothing to my foot.  I was getting worried, and I decided I had better call my doctor again.  He said we needed to get an MRI to see what was going on, since if it was scar tissue, I should have been feeling better by now.

So I got in for my 3rd MRI, this time at Abbott.  I got in for a quick 5min discussion in the hallway the day after the MRI as he was completely booked, but agreed to overbook me into his schedule.  He said it looked like I had re-herniated a small disc fragment. 

He guessed that it was from doing pullups (although he had not only cleared me to do them before when I asked him, but had said they would help to take the load off my disc).  He guessed that this might have torn the disc apart a bit and let the fragment out.  He said he didn't have a lot of patients that did pullups and would probably tell his other patients to wait to do them in the future.  In any case, he said the fragment should reabsorb into the body in a couple of weeks.  But the fact that I reherniated meant that I still had a hole in the back of my disc which was not healed.  This was what was really bad.  After 4 months of sticking to a plan and being careful and doing absolutely everything my doctors and physical therapists has told me, my disc had not healed like it should have.  I don't blame the surgeon for telling me that pullups were ok and then having him suspect that they tore the disc apart.  The tear in my disc was quite large (which they didn't know until they opened me up for surgery), and combined with the fact that my disc just didn't want to heal no matter what I did, I was pretty convinced it was just a matter of time before something like this happened.  There was really nothing I could have done, but it still was like a punch in the gut.

Over the next couple days, the pain in my heel intensified to the point where it was hard to walk.  I understood this to be due to the disc fragment pressing on the part of the nerve that ran to my foot.  A few days later, I woke up and my heel felt fine, but I started to experience intense back, hip, and calf pain.  This pain got steadily worse and worse until it was at a level worse than my pre-surgery pain.  I'm guessing that the disc fragment had moved to a different spot and was causing this new pain.  I would experience some variability in my pain as it would sometimes feel much better for an hour and then come back.  I attribute this to the fragment possibly moving around.  One day, the pain was so bad, I had to take my first day off of work due to the pain because I couldn't concentrate well enough.  I was feeling pretty crappy and despondent.  Just when I thought I would be able to start getting back to a normal life, I'm now worse than ever.  This seems to be a never ending ordeal.

I had another dr. appt. with my surgeon and by this time, I was in extreme pain and was unable to walk without limping.  He suspected that perhaps the herniation had gotten worse and ordered yet another MRI. 
I had been doing a lot more research on disc replacement since the pain had been intensifying and I was becoming more and more convinced that my disc just would never heal properly.  It never healed on its own when I had the small disc tear, it never healed on its own after I herniated it, and now after surgery, it had also refused to heal properly.  I printed our a binder full of information about the disc I was looking at and the doctors in Europe who use it and brought it with my to my appt. and gave it to my surgeon.  He was familiar with the particular disc and said it looked like the best one out there today.  Unfortunately, since it is not approved by the FDA yet (despite being used successfully in Europe for some time) it is not available in the US.  He said that it could be an option, and that he would work with me and treat me when I came back if that is what I chose to do.  He had concerns that there was a possibility that the disc fragment would need to be removed surgically first before doing the disc replacement due to the location of the fragment which would make it impossible to get to when disc replacement, but we would need to get the MRI and see.

So off I went the next day to get my 2nd MRI in the last 12 days (this was on June 14th), my 4th MRI since my whole back ordeal started.  The surgeon called the next day and said, that it didn't look like the herniation had gotten any bigger, but that it hadn't changed much either. 

He suggested I get an Epidural Steroid Injection to help with the pain and buy myself some relief until we decided what needed to happen.  This would make 5 injections since the start of my back ordeal.

So on Friday, I had a friend generously drive me out to the special procedures clinic in Plymouth.  I had been in a lot of pain and the car ride out, combined with the long wait in the waiting room had driven my pain level up to an excruciating level.  They took my BP and it was 160/87 and my hands were shaking.  I rated my pain as a 9/10 and the nurse looked at me and said, "I'm just going to put down 10/10."  I limped into the procedure room and they did the injection, in which they also injected an anesthetic in addition to the steroid.  Luckily, this had an immediate effect and I felt a lot of relief.  They took me back out and my BP had dropped back down to close to normal and I could walk without limping.  The anesthetic they inject provides a lot of instant relief, but usually wears off overnight.  The steroid they inject helps to reduce the irritation and inflammation of the nerves and can take a few days to a week to take full effect and can last anywhere from a week to several months.  My past experience has varied quite a bit.

So the night of my injection, they instructed me to try and do normal, non-strenuous activities to see if the anesthetic helped.  They use this as a way to confirm if the pain is coming from the place they think it is.  If the pain goes away, they know that the pain was coming from the place where they injected.  If not, it must be from somewhere else.  It is often hard to localize the exact source of pain in back patients due to the numerous structure that can have problems that all cause similar pain.

I felt much better that night and was able to go out for dinner with some friends and walk to a couple of places in their neighborhood.  I think I sat for 2.5 to 3 hours with only some minimal discomfort/tiredness which was nice.  But I knew it would not be as good in the morning once the anesthetic wore off.
Sure enough, the next morning, the pain was worse, although not as intense as before the injection.  It can take a few days for the full effect of the steroid to kick in.

This brings us up to the current day.  My pain is a bit duller and not as sharp as before the injection, but it is still there.  I know this is just temporary as the injection will eventually wear off and I'll be back to where I was.  I have an appt. with my surgeon on Thursday to discuss next steps and I'm going to push for a more aggressive approach.  It is now nearly a month after I re-herniated my disc and more and more time goes by as I'm in pain and this isn't getting better.  I know a disc replacement will most likely mean several more months of planning, a risky surgery, and recovery but I just want to get back to being better and start on the path to that goal as soon as possible.

Saturday, June 18, 2011

"Recovery" from surgery

As many people who have had discectomies experience, I had an immediate reduction in pain after the surgery.  They sent me home with narcotic pain medication, which I did not need at all since the post operative pain and the pain from the incision was nothing compared to the pain I had been in before the surgery.  This is due to the nerve being decompressed during the procedure.  I was quite hopeful, but I knew I had to take it easy and be very diligent about giving my disc time to heal over since I was now at a greater risk of re-herniation due to the hole in the back of my disc they had to make to remove the protruding disc material.  One wrong move could cause more disc material to come out of the disc and re-compress the nerves again.  It is definitely a situation in which feeling better does not necessarily mean you are better.

After getting home, my mom stayed with me for about a week at my house to help out, which I greatly appreciated.  I would spend my time lying with a pillow under my legs and getting up every hour or so to pace around my house for about 10-15minutes.  One of the risks of the surgery is that scar tissue can form around the nerves and cause pain.  Scar tissue is also very hard to remove and walking helps keep the nerve mobile and prevents scar tissue from adhering to the nerve itself.  So I had a very set schedule of walking which I stuck to diligently.  I also was not allowed to lift anything over 8lbs for the first 3-4weeks.  To put this in perspective, a gallon of milk is about 8lbs.  Also, no bending, no twisting, and only limited sitting were allowed.  So I was pretty much just watching movies, walking, tv, walking, playing some wii, and more walking.  My friends and family were awesome and came over to visit and brought me movies and food and just hung out.

After two weeks, my mom went back home and I returned to working.  I work from home and could do my job while continuing my recovery routine and laying on my back when I wasn't walking.  The doctor had warned that sitting could take a while to be comfortable again.  It was a pretty long road, and I felt couped up and stir crazy.  Unfortunately, the winter was a particularly bad one, so it was even difficult to go outside and walk due to all the ice on all of the sidewalks.  Every day felt like a week, but I was on a mission to make sure my disc healed properly, so I stuck to my routine.  Spinal discs do not have a direct blood supply and therefore get their nutrients kind of like a sponge by taking them from the surrounding fluids.  Walking gently compresses and decompresses the disc and this pumping action facilitates the transport of nutrients into the disc.  All the doctors said, walking was probably the best thing I could do.  I took glucosamine with MSM along with a hyaluronic acid and collagen supplement and drank lots of water and stuck to a good diet.  While there is some research to support that those supplements help with joint problems, and it is known that those compounds are all present in the disc material themselves, there is no hard evidence that they  make a big difference.  I thought that if there was even a chance that they would help, it would be worth the cost.  I would take them a few hours before walking along with a large glass of water in hopes that they would be at their maximum concentration in my bloodstream when I would be walking and therefore get into my disc.  I didn't know any of this for sure and was more of a theory, but based on everything I had been told, it sounded plausible.

After a solid month of this routine, and nearly going out of my mind at times being so restricted in what I could do, after my 4 week follow up with my doctor, I started a month of physical therapy.  This was the 3rd physical therapy location I had tried since the start of my ordeal.  I went twice a week and we basically just worked on gentle core strengthening exercises that I could do without bending my spine too much, along with some time on the arm bike, the recumbent bike, and some leg work on the Pilates machine.  We gradually increased the exercises, but they were still pretty tame.  I did the exercises they gave me as homework everyday diligently anyway.  If it even had a chance of helping, I was going to do it.  It felt great to be able to do at least something half way physical.  I was still having difficulty sitting for very long, which was similar to before the surgery, but the surgeon had said this could take time to come back.  I still had to lay down all day while I worked and I could only really sit for about 45mins without starting to get some pain.  I would stop immediately when I felt something since I did not want to squish the disc back apart and impede its healing.

I completed about a month of physical therapy and was feeling better, and more confident in my movements.
I really wanted to get back into some regular routine of working out so I came up with a set of moves that was comprised of all exercises that my physical therapist had given me and the addition of pushups and pullups.  I had some concerns about doing pullups so I asked the physical therapist who said it would be fine as long as my surgeon said it was fine.  I asked my surgeon and he said they would be fine and would even probably be good to help take some of the load off of the disc.  This disc should be healed enough by now.

So at nearly 3 months post surgery, and being done with physical therapy, my surgeon said he didn't need to see me back for anymore follow ups unless I had problems, but to remember that I was still at higher risk for re-herniation for a bit longer so not to do anything too crazy, but I should have been through the riskiest part.

So I continued with my homemade routine of PT exercises and pushups and pullups about 2-3 times per week for 3.5 weeks.  I tried going for a few short jogs for the first time in over a year and they felt ok.  I would ease into anything new I tried.  I had no intention of doing anything that would remotely endanger my disc (like picking up a weight) until at least 6 months out.  I was still having some difficulty sitting, and would get soreness after about 1.5 hours.  I also noticed if I sat for too long, I would be sore for a day or two after.  I was still laying down all day for work and still had to basically build my life around not sitting.  The not sitting part was pretty tough.  Long car rides were still out of the question.  You don't really realize how much you sit during a day until you can't do it.  I had been hoping that this would have been better by now.

Then at the end of May, nearly 4 months after my surgery, after finishing one of my exercise sessions of PT exercises, pushup and pullups,  I laid down on the floor for a few minutes after doing the workout.  I got up and was walking across the living room to my kitchen and something happened in my back.  I had an extremely sharp pain and intense muscle spasms.  My initial thought, was "Oh my god, what just happened?"  Nothing felt wrong when I had been doing my exercises.  I walked into the kitchen and was hit with another round of muscle spasms.  I grabbed an ice pack and went back into the living room and laid on the floor.  My heart started racing, what was going on?  The only time I had ever had muscle spasms before was when I herniated my disc nearly 14 months earlier.  After about 30mins on the floor, I slowly tried to get back up and was hit with another round of spasms and pain.  I just laid on the floor the rest of the night and knew I had to call my surgeon the next day.  I had more spasms and pain when I got up to go to bed.  I called the next day and luckily there had been a cancellation so I could get in that morning.

Thursday, June 16, 2011

Surgery

I had tried at all costs to avoid having surgery, but after nearly a year, and still having constant pain, and the inability to even sit for very long, I finally was ready for it.  I did a lot of research into ADR (artificial disc replacement) and micro-discectomy surgeries.  Micro-discectomies are the most common surgery for herniated discs in the US and are covered by insurance.  The surgeon basically goes in through a 2 inch incision in the back, cuts a hole in the disc and removes the disc material that has bulged out and is pressing on the nerves.  This usually immediately relives the pain substantially for many patients as the nerves are instantly decompressed.  It is a relatively simple surgery that takes around an hour or so.  The downside to this surgery is that it takes a long time for the hole in the disc to scar over (4-6 months) and the disc will never be normal and will always have a weak spot.

With disc replacement, the surgery is a little more involved as they have to go through the front of the stomach to get to the spine.  This is because the spinal cord runs behind the disc and there is not enough room to get the disc replacement in through the back.  They remove the entire disc and replace it with an artificial one.  There are a few more risks as this is a more invasive surgery than the micro-discectomy, and it is not covered at all by most insurance companies.  In addition, the latest generation of artificial discs are not available in the US due to the delays in FDA approval.

I went in to see the surgeon, explained my history and he said I needed to get another MRI since my other one was about a year old.  So I went and got my second MRI and it revealed that after my year of injections, physical therapy, avoiding everything physical that I loved, and my mission to heal my disc, it had all resulted in no improvement to my disc:

And the following image is looking up into my body (so left and right are reversed).  You can see the herniation circled in red, still pressing into my sciatic nerve an spinal cord.

He recommended getting a micro-discectomy as it is less risky, easier to get, and 85% of people do very well after having them.  He assured me that I would still have a very good chance of being active with few problems after I recovered.  He usually reserved disc replacement surgeries as an alternative to fusion surgeries, which from all the research I've done and what the surgeon told me, should only be considered as a last resort.  I had also heard several personal stories of people who had micro-discectomies and were back to their old lives with no problems being athletic.

I was pretty sure I would go with the micro-discectomy, but decided to get a second opinion from another surgeon just to be safe.  So I sought out a well respected spine surgeon at Abbott who came highly recommended by some friends who worked at the hospital and had asked the doctors they knew there.  I saw the second surgeon and he also recommended getting the micro-discectomy and said that my surgeon was very good and he would have no hesitation getting surgery from him as his technique was very excellent, and he had nearly 30 years of experience.

So I made arrangements to get my pre-op tests, got 2 weeks off of work after the surgery all set up, and had the surgery in early Feb. 2011.  I was a little nervous as I had never had surgery before, but hopeful that this would be the start of the road to my actual recovery.  With my awesome parents by my side, I arrived at the hospital, was checked in and put through all the pre-op stuff, and was eventually rolled into surgery, given anesthesia and it was lights out.  I woke up about 2 hours later in recovery, not feeling too bad, although a little groggy.  It took a few hours until my room was ready, so I laid in recovery watching the other patients being wheeled in and out.  My surgeon came out and I was interested to know if he was able to stitch up the hole in my disc.  Not every surgeon even tries to do this, but it has shown to help provide more support to the disc.  Unfortunately, the surgeon said I had a very large tear in my disc, much larger than he expected, and the disc material would not support the stitches and they just pulled out when he tried to put them in.  I was a little bummed to hear this, but it was out of my control and not a guarantee that things wouldn't heal anyway.

A few hours after a got to my room, a occupational therapist and physical therapist stopped by.  The OT, gave me some papers and some information about moving etc.  to be honest I can't remember a whole lot of what she said as I was still a little foggy.  The PT came in and had me up and walking, at first with a walker and then without.  After my operation, I ended up having a little trouble recovering from the anesthesia.  At first I felt fine, but after I tried to eat some toast and vegetable soup (nearly 20 hours after having eaten anything), I became very nauseous and light headed.  They gave me an IV since I was having difficulty getting anything down and I stayed overnight.  Here you can see the covered incision in my back along with the yellowish stuff they use to clean your back, which kind of stains your skin for a few days.


The next morning, I felt much better and my Mom drove me home, which was a little painful due to the horrid conditions of the Minneapolis streets that had really taken a beating over the rough winter.  The potholes were big, plentiful, and unwelcome.  I made it home and laid down on my pull out couch, and just took it easy.  More on my recovery to come.

Wednesday, June 15, 2011

The start of treatment

So after doing some research online, I was pretty sure I had a herniated disc, so I looked around for back clinics and found the Institute for Low Back and Neck Care (ILBNC) across the street from Abbott Northwestern Hospital in south Minneapolis which is located not too far from where I live.  So I made an appointment and was examined by the doctor who had me try a number of things like the straight leg raise, which was quite painful, and trying to bend forward which was also difficult.  He said it looked like a herniated disc and gave me some medication for pain (tramadol) and neurontin which is supposed to help nerve pain and ordered an MRI to confirm the diagnosis.  So I went and got an MRI and sure enough, there was a decent size disc herniation pushing on the nerves going down my leg which is what was causing so much pain.  You can see it circled in red below.


If you are interested in more info on herniated discs and what they are, you can look here:  http://en.wikipedia.org/wiki/Spinal_disc_herniation.  After my follow up appointment, the Dr. recommended an epidural steroid injection or ESI (more commonly known as a cortisone shot, but they actually use a different, more powerful steroid).  These are supposed to reduce the swelling and irritation of the sciatic nerves and help to reduce pain.  A week after that I was to start physical therapy and I was told that 90% of people will recover from a herniated disc on their own within about 6 weeks.

So I went a week later to get my first ESI.  I had to drive to their special procedures clinic which was about 40 mins away from my house.  They have you lay face down on a large table, give you some numbing medication at the injection site and then use a fluoroscope (like a live action x-ray) to help guide the needle to the correct location and then injected some anesthetic and the steroid.  You can't wear pants with metal so I wore my pajama pants which they pull down so your butt is hanging out in the breeze while they do the injection.  It is tricky to get these injections in the proper locations because you can't see the soft tissues in the fluoroscope, only the bones, and if they are not in the right place along the nerve root (which you can't see in the fluoroscope), they don't do much good.  So they are kind of hit or miss, even for very experienced doctors.  I thought it would be funny to put a temporary smiley face tattoo on my butt the next time, but then thought I wouldn't want the doctor chuckling while trying to guide the needle to the exact correct location close to my spinal cord.  For me, the first one helped a little bit for the first week or so, but didn't help much after that.  They say their effects can last up to 3 months, but it varies from person to person.  The actual procedure took about 10mins and they bill your insurance company around $1400 (luckily with my insurance, I didn't have to pay that much out of pocket).

A week after the injection, I started physical therapy which consisted of a few simple stretches like laying on my stomach and propping myself up on my elbows with the idea that this would squish the gel-like nucleus material in my disc back forward, relieving some of the pressure on the nerves and giving the outer fibrous annulus a chance to heal itself.  I went twice a week, and while the physical therapist was nice and talked very knowledgeably about the subject, we seemed to do very little in our sessions.  He would give me a few pieces of paper with stretches on them and have me do one or two and would then have me lay on my back with my legs on an exercise ball while he pulled on my legs.  The idea with this was to stretch the disc and create a kind of vacuum effect to help pull the disc away from the nerves.  Very often our sessions would last less than 20mins.  Along the way there were a couple of setbacks after moving to a new stretch that I wasn't quite ready for, and the second time I tried traction which uses a machine that secures your upper body while it pulls on your legs to stretch the spine after which I had a lot of pain.  So after 4 weeks of not any significant improvement, I went back to the doctor who suggested a second injection.  I requested to try another physical therapist that had been recommended to me by a family member who was a personal friend and the Dr. agreed and wrote up another order.

So off I went to get a second injection, which this time seemed to give me some more relief than the first.  A week later, I started physical therapy at the new location.  This physical therapist had a very different approach.  Since the herniation had occurred, I had a lot of increasing muscle tightness and was told that the body will stop sending signals to some of the muscles controlled by the compressed nerve, and over time, the muscles kind of lock up and fascial adhesions can form along the nerves which causes pain which compounds the pain of the compressed nerve.  The goal of this physical therapist was to use a very deep and painful form of massage to break up the adhesions and reshape the muscles and tissues affected to loosen them up.  Over the next 6 weeks, the combination of the injection and the new physical therapy had me feeling some improvement and I was hopeful that things were getting better.  Unfortunately, this physical therapist was not "in network" for my insurance so I was basically paying out of pocket until my large deductible was met, it wasn't cheap at $100 per session and I had ten of them (and still didn't meet my out of network deductible).

Feeling a bit better, I decided to stop taking the neurontin and experienced horrible withdrawl symptoms even though, I weened myself off over the course of two weeks.  Apparently, this is a pretty rare reaction to this medication, but I found a few others online who had similar experiences.  I had massive anxiety attacks, rapid heart rate, and a number of completely sleepless nights.  It was horrible, much worse than the back pain I had been taking it for.  Had I known, I never would have started taking it.  Also, after coming off this medication, my sleep patterns (which I had always kind of had some issues with) became extremely disrupted to the point where it would take me a minimum of 2-3 hours each night to fall asleep, and I often would get less than 4 hours of sleep per night.  This persisted for several months and I ultimately had to get treatment from a sleep specialist to get me back on track.  Needless to say, it was a bit tough.

Unfortunately, a few weeks after completing the second round of the physical therapy, the pain started to return.  I'm not sure if it was the injection wearing off, or stopping the physical therapy or a combination of both.  Soon, I was back to my previous levels of pain and feeling let down that I was not actually getting better like I thought I was.  Not wanting to throw even more money away on physical therapy that wasn't giving me lasting results and not wanting to have to get surgery, I went back and got yet another injection to try and buy some more time for my body to heal.  It was now about 6 months after the herniation occurred.

This injection did not last very long, and maybe gave me a month of limited relief.  I was still unable to bend forward, or sit in a chair for more than 45 minutes without a lot of pain.  I still had pain in my lower back, hip, calf, and would get a cold feeling in my foot if I sat too long.  The realization of living with chronic pain was setting in after so long.  It was past the point of just toughing it out, it really starts to affect your whole outlook and gave me a new appreciation for what others with chronic pain face.  Everyday, you wake up and immediately start coping.  There were days of complete hopelessness and despair, feeling like it would never go away.  It is strange because from the outside, you look healthy to the outside world, but I felt like I had a row of flaming thumb tacks stuck in a line down my butt.  You wonder if people think you're faking it, or are just thinking, "awww it can't be that bad" but in reality it was much worse than they thought.  I often say that on the bad days, I would wake up and start the day completely drained, as if I had just finished the most hellish day of work, and then I would often have to go face an actual hellish day of work on top of it.  The closest thing I can compare the nerve pain to is if you have every gotten a cavity filled at the dentist and they touch the nerve and you get that sharp, intense pain.  Depending on how I would move, the herniation would press on the nerve and give me intense shocks of pain along with the persistent pain caused by the inflammation of the irritated nerves.

After another 3 months, my pain had increased again and I got my 4th epidural steroid injection basically out of desperation.  It lasted maybe a month and I started to realize that this was not going to go away.  I started to look at surgical options such as a disc replacement or a micro-discectomy in which they cut a hole in the disc to remove the protruding disc material to relieve the pressure on the nerve.  I started doing research on surgeons and picked one from ILBNC that had a lot of experience with both procedures.  Unfortunately, it was now late November, and it would take over a month to get an appointment with him.  More on my journey with surgery later.

Tuesday, June 14, 2011

A brief history of Tim

So I'm about 2 and a half years into my whole back ordeal, and people ask me the seemingly innocuous question of "What did you do?" which, to use the cliche, is a long story.  So lets start from the beginning and it may take a few days to get the whole story out there before I catch up to present day.

I worked and still do, as a Software Engineer working from home most of the time.  In about April of 2009 at age 29, I first weakened my disc while working out.  I had been doing a workout program call P90X for about 2 years and loved it.  It really worked for me and I was by far in the best shape of my life.  At the start of the program I could do 6 pullups, and at my best a few years later, I had improved to where I could do 22 in a single set.

I had never had much athletic talent at all growing up as a tall skinny kid, although I did go out for many sports, such as 6th grade wrestling, junior high basketball and track, one year of golf in high school, 4 years of running back of the pack JV cross country in high school, and one year of swim team in high school also.  I pretty much sucked at them all but enjoyed doing something to try to better myself and keep in shape.  I lifted weights and jogged on and off throughout college.

I had always wanted to be able to bulk up a bit, (being 6'2'' and 145lbs as a senior in college).  So when I started P90X at age 27, I was shocked at what a good fit it was for me.  Over the course of a couple years, I was finally able to put on about 15lbs of muscle (and a little fat) where I had never been able to when I was younger due to my super high metabolism, which as I entered my mid-twenties, finally started to slow just a bit.  I was able to get up to about 168lbs which was a great weight for my slim frame. It was a lot of time, dedication, and hard work to stick to the program and a good diet, even on days when I didn't feel like working out, but I loved it.

Where I eventually went wrong, was when I had become very accustomed to the workouts, and needed more of a challenge, I decided to throw a weight vest into the mix.  I had seen many other people using them with the program and for several months, it really worked well.  Pushups, pullups, plyometrics, and yoga with the weight vest pushed my fitness to new levels and I loved that every day I could go downstairs and do something that I had never been able to do before in my life.  Even if it was just a few more pullups or pushups, it really gave me a sense that I was finally able to do something physical that impressed myself (not that I was any sort of ironman level athlete, with my natural lack of god given talent and all) but after growing up as a kid with no physical talent, it was very fulfilling to finally not feel so self conscious about being so thin and gangly, and finally feel proud to have earned a fit and more normaly proportioned build through years of hard work.

Unfortunately, while helping my muscles, it was weakening my disc without me knowing it, even though I practiced good technique, lifting with my legs and not my back, and wearing support belts to take care of my back as well.  I do not blame the P90X program at all, it is a great program and they have plenty of warnings to be careful and listen to your body.  It is a challenging program, and they tell you that up front.  I was in great shape, had been training for a couple years, and was trying to push myself a little harder by upping the challenge.  Unfortunately with discs, they often don't let you know much is wrong until its too late.  There are often few warning signs as was the case with me.

So one day, when doing some yoga, I pushed a forward bend to far and felt a twinge in my back.  Nothing major, just felt like a muscle tweak.  I took a week off and felt fine.  The next week, while doing a two angle shoulder fly with a weight I had been using for months with that move, I felt what I thought was a muscle pull,  but from that point on, I noticed that I would have pain in my back at the disc level when I would get up from sitting from a long time.  After a few weeks of rest and not much improvement, I went to a chiropractor who listened to my symptoms and did the straight leg raise test to test for a disc herniation, which did not cause me pain at that point, and thought that I probably had a small internal tear of my disc and a pulled muscle in my back, which I think was accurate.  She said there was not a lot that could be done besides taking it easy and letting it heal on its own in a couple months.  For the vast majority of people, this is true.  I abandoned the weight vest, and took a couple months off from working out but it never really got much better.  It wasn't too bad and was really not much more than an annoyance from time to time.  A few months later, I started easing back into working out, by first starting with half workouts with none of the back moves, and slowly over several months added the other half of the workout but without the exercises that included bending over with weights, (like the lawnmowers, heavy pants, two angle shoulder flys for you P90Xers).  I never did add the weight vest back in for yoga or plyometrics after that, to be safe.

So fast forward to April of 2010, the annoying pain in my back never went away, and I figured it was part of turning 30, and things just start to hurt now as I'm getting older.  I had returned to P90X without the back lifting exercises for several months with no problems and was feeling otherwise great.  Then out of the blue, one day after doing some overhead tricep extensions with a 20 pound weight while sitting in a chair, I went to set the weight on the floor as I had done numerous times before and felt a massive pain in my back.  It must have just been the exact wrong angle with a weight in my hand combined with the internal disc tear that never healed.  I later learned I had just herniated my L5/S1 lumbar disc.  The pain was excruciating.  I immediately had muscle spasms, sharp pain in my back, hip, and calf and collapsed to the floor, crawled upstairs to get some ibuprofen and some ice.  I iced my back, and then crawled upstairs and went to bed.  I knew something was wrong.  After about a week of continued serious pain, I knew I had to go to a doctor.