Checking in....(cervical and lumbar spine problems)

[Tatonka_usn]

Greetings all!
My name is Alan, and I’m a long time sufferer of spine pain and recently found this site. Some of you might know me from a few of the other forums, as I periodically pop on to catch up and see how things are going in the community. Had tried to post a rather lengthy introduction last night, but (as my luck would have it) the computer decided to lock up and eat it. Alas, this will be my second attempt.
To begin my story, I go back to 1991 when I bulged L4/5 falling off a motorcycle. I was learning to ride, and going slow, and the bike had a nice soft cushion (me). Discomfort started a few weeks after the incident, and a battery of tests were all I needed to realize that riding was no longer in my future. Had an ESI, but the procedure went bad when they inadvertently caused a CSF leak. It was a MISERABLE 2 weeks but, fortunately, a blood patch resolved the issue. So far as the back issue itself, I had periodic flare-ups over the next couple years, but things seemed to resolve themselves. Even got to the point where I was able to go into the Navy, and everything began to look up.
Shift forward to December 2003, when I was driving home from work late one evening. It had snowed the previous week, but the guy who hit me head-on didn’t seem fazed by the need to slow down. He hit black ice, crossed a median divider, and turned my car into an accordion. Fortunately I walked away with little more than cervical whiplash, but I think the seeds of my future issues were sown.
By the fall of 2006, I was stationed began experiencing an odd discomfort that I mistook for hamstring and/or hip issues. While in physical therapy, the therapist advised that I might be having lumbar problems, but I poo-poo’d his warning, since I’d had no lower back issues after the crash. Unfortunately, he was actually right, and about 6 months later (April 2007) I began experiencing pretty significant LBP. I did all my old stretches, but it wouldn’t go away. Within two weeks (on a Sunday), my left leg/calf/foot went numb and tingly, with significant nerve pain in the outside of the foot (as well as buttock and lower back). I knew something was seriously wrong at this point and, after a night in the ER, an MRI showed a SEVERE herniation of L5/S1. The Doc on my ship (a general internist) had me removed from the boat as a potential health hazard, and I entered conservative treatment (PT, acupuncture and 2 X ESI). Unfortunately, the options were limited on the base I was stationed so, after three months I relented to surgery (against my better judgment and arguments). They shipped me back to Walter Reed, and I had a Micro-D in July 2007.
The first few months were promising, and I felt some return of strength in the leg (though the S1 achilles reflex never came back). I returned to Japan, was allowed back on the ship, and was able to work out on the elliptical machine (keeping my weight under control). Unfortunately, by the spring of 2008 I began experiencing residual symptoms (more pain and tingling), and I was concerned that it might be an issue of epidural fibrosis. We moved back to the States for my next assignment in May, and a follow-up MRI showed that the same level had reherniated. Worse, I was now bilaterally symptomatic, with lower back and glut pain on both sides. Began conservative treatment again (PT, acupuncture, chiro, 3 X ESI, 1 X Lysis of Adhesion/etc) and, while functional, gradually deteriorated. My first surgery consult was with a neuro-guy who advised that I should do everything possible to avoid him as long as possible, but that I’d ultimately need a fusion. Very comforting…not. Went into something of a holding pattern throughout the remainder of 2008 and into 2009. They tried me on neurontin, but being in grad school I couldn’t deal with the cognition issues that it brought on, so I stopped. The was followed, over the next 18 months, by a series of consults and MRIs, all re-affirming the conclusion that I had DDD (para-central protrusion at L5/S1, bilateral recess narrowing, stenotic changes to the facets…with issues up as high as L3/4).
My next two surgical consults (Fall/Winter 2009) indicated that the DDD was progressing, and that the loss of disc height was ~50%. The first surgeon, a Navy guy in San Diego, advised that the only way to restore height is 1) fusion or 2) ADR. It was his opinion that I was too young to be fused (37 at that point), and but that ADR might be a possibility. I decided against this option, as 1) he used the PRODISC-L (I’m not a fan of keeled designs) and 2) had only done 35 ADR’s total (cervical AND lumbar). The following consult was at Texas Back Institute, with Dr. Jack Zigler. Given all the symptoms, he too thought I was a good candidate for a single-level ADR (again, PRODISC), but that he couldn’t guarantee the outcome. Instead, his notes recommended trying Lyrica (not a chance) and were vague enough that TRICARE was able to blow me off. Given the fact that I’d be leaving the military in early 2010 they were willing to boot me to the curb, telling me I’d have to take it to the VA upon discharge (awful nice of them).
At the same time, I began having issues with my neck as well. It began with cervical pain in my neck/shoulders and tingling in my fingers by mid 2009. Looking back, I’d probably had this issue earlier, but wrote it off due to ongoing focus on my lumbar degeneration. An MRI showed that I was bulged from C3/4 down to T1. Pretty much what I’d expected to hear, but disconcerting none the less. Fortunately, it hasn’t been severe, but remains intermittent.
So, in January 2010 the family and I moved from CA to the DC area as I left the Navy after 13 years. I had 6 months of transitional coverage with TRICARE, but the appointments continued to be fruitless. Concurrently, I sought to branch out and connect with expert specialists using my new private insurance (what a joke). Since that point, I’ve continued to try conservative treatment, without much success. Have had a couple rounds of PT, for both neck and back, as well as several attempts at Chiro (big mistake). Additionally, I’m fortunate to have a cousin in the Va Beach area who is an amazing Physiatrist/Pain Management Doc. She’s taken pity on me and tried a variety of treatment avenues, to include manipulation, trigger point injections, and prolotherapy injections (4 rounds). No significant relief, but it seem to stabilize the issue. I also had a discogram/CT done in July by a local pain management practice. The results were negative during the injections (he even tried twice), but the CT showed pretty extensive degeneration at L5/S1 (no surprise). Ironically, while there was no pain from the procedure, it wasn’t long after it that I began having significant/sharp pain in the vicinity of the ride side L5/S1 facets and SI joint. That’s probably not the origin, but it’s the first time I’ve had something quite this sharp…..and it’s continued ever since. By late in the year, I went for a consult highly regarded ortho surgeon in the area and, for the first time, he broached the issue of doing an ALIF (after trying more conservative stuff first, and noting retrolisthesis of L5). While highly qualified, his bedside manner is lacking, and I’m not sure I’m at that point. Concurrently, the VA docs have said the only thing they can offer me is a TLIF, and that it would be a 6 month wait even for that.
So, there you have it….the somewhat unabridged story of life as a spine patient. I could go into a whole lot more detail, but you’ve all been there and done that. The biggest problem I have is that I’ve gone from a VERY active 30-something, to a semi-sedentary couch potato (with the associated gain in weight and depression). I hand it to my wife for having the patience of a saint, but it’s tough to really convey the sense of frustration and hopelessness to people who haven’t been afflicted with the insidious ailment. I’d like to hope that I can keep this in check, and return to being “normal”, but the gradual slide continues. I hope that, by being able to bond with others who understand, I’ll be able to ride the wave that life has dealt me. Thanks for listening!

[Gilbert P]

Hi Alan

[Gilbert P]

I am in your shoes, neck issues and a four level lumbar spine. I have had many surgeons look and not been much help.

Still looking for the right surgeon with the best procedure for my condition, I hope things can hold out until then.

Are you looking for more surgeons, have you tried overseas?

Gil

[bigdogchief76]

Welcome Alan....

I sent you another PM tonight.


I encourage you to scour these forums. There are a lot of folks who have been through back problems and everyone has an unique story.

I think you should be able to get some info that you need.

Later,
MB

[Cindylou]

Greetings all!
My name is Alan, and I’m a long time sufferer of spine pain and recently found this site. Some of you might know me from a few of the other forums, as I periodically pop on to catch up and see how things are going in the community. Had tried to post a rather lengthy introduction last night, but (as my luck would have it) the computer decided to lock up and eat it. Alas, this will be my second attempt.
To begin my story, I go back to 1991 when I bulged L4/5 falling off a motorcycle. I was learning to ride, and going slow, and the bike had a nice soft cushion (me). Discomfort started a few weeks after the incident, and a battery of tests were all I needed to realize that riding was no longer in my future. Had an ESI, but the procedure went bad when they inadvertently caused a CSF leak. It was a MISERABLE 2 weeks but, fortunately, a blood patch resolved the issue. So far as the back issue itself, I had periodic flare-ups over the next couple years, but things seemed to resolve themselves. Even got to the point where I was able to go into the Navy, and everything began to look up.
Shift forward to December 2003, when I was driving home from work late one evening. It had snowed the previous week, but the guy who hit me head-on didn’t seem fazed by the need to slow down. He hit black ice, crossed a median divider, and turned my car into an accordion. Fortunately I walked away with little more than cervical whiplash, but I think the seeds of my future issues were sown.
By the fall of 2006, I was stationed began experiencing an odd discomfort that I mistook for hamstring and/or hip issues. While in physical therapy, the therapist advised that I might be having lumbar problems, but I poo-poo’d his warning, since I’d had no lower back issues after the crash. Unfortunately, he was actually right, and about 6 months later (April 2007) I began experiencing pretty significant LBP. I did all my old stretches, but it wouldn’t go away. Within two weeks (on a Sunday), my left leg/calf/foot went numb and tingly, with significant nerve pain in the outside of the foot (as well as buttock and lower back). I knew something was seriously wrong at this point and, after a night in the ER, an MRI showed a SEVERE herniation of L5/S1. The Doc on my ship (a general internist) had me removed from the boat as a potential health hazard, and I entered conservative treatment (PT, acupuncture and 2 X ESI). Unfortunately, the options were limited on the base I was stationed so, after three months I relented to surgery (against my better judgment and arguments). They shipped me back to Walter Reed, and I had a Micro-D in July 2007.
The first few months were promising, and I felt some return of strength in the leg (though the S1 achilles reflex never came back). I returned to Japan, was allowed back on the ship, and was able to work out on the elliptical machine (keeping my weight under control). Unfortunately, by the spring of 2008 I began experiencing residual symptoms (more pain and tingling), and I was concerned that it might be an issue of epidural fibrosis. We moved back to the States for my next assignment in May, and a follow-up MRI showed that the same level had reherniated. Worse, I was now bilaterally symptomatic, with lower back and glut pain on both sides. Began conservative treatment again (PT, acupuncture, chiro, 3 X ESI, 1 X Lysis of Adhesion/etc) and, while functional, gradually deteriorated. My first surgery consult was with a neuro-guy who advised that I should do everything possible to avoid him as long as possible, but that I’d ultimately need a fusion. Very comforting…not. Went into something of a holding pattern throughout the remainder of 2008 and into 2009. They tried me on neurontin, but being in grad school I couldn’t deal with the cognition issues that it brought on, so I stopped. The was followed, over the next 18 months, by a series of consults and MRIs, all re-affirming the conclusion that I had DDD (para-central protrusion at L5/S1, bilateral recess narrowing, stenotic changes to the facets…with issues up as high as L3/4).
My next two surgical consults (Fall/Winter 2009) indicated that the DDD was progressing, and that the loss of disc height was ~50%. The first surgeon, a Navy guy in San Diego, advised that the only way to restore height is 1) fusion or 2) ADR. It was his opinion that I was too young to be fused (37 at that point), and but that ADR might be a possibility. I decided against this option, as 1) he used the PRODISC-L (I’m not a fan of keeled designs) and 2) had only done 35 ADR’s total (cervical AND lumbar). The following consult was at Texas Back Institute, with Dr. Jack Zigler. Given all the symptoms, he too thought I was a good candidate for a single-level ADR (again, PRODISC), but that he couldn’t guarantee the outcome. Instead, his notes recommended trying Lyrica (not a chance) and were vague enough that TRICARE was able to blow me off. Given the fact that I’d be leaving the military in early 2010 they were willing to boot me to the curb, telling me I’d have to take it to the VA upon discharge (awful nice of them).
At the same time, I began having issues with my neck as well. It began with cervical pain in my neck/shoulders and tingling in my fingers by mid 2009. Looking back, I’d probably had this issue earlier, but wrote it off due to ongoing focus on my lumbar degeneration. An MRI showed that I was bulged from C3/4 down to T1. Pretty much what I’d expected to hear, but disconcerting none the less. Fortunately, it hasn’t been severe, but remains intermittent.
So, in January 2010 the family and I moved from CA to the DC area as I left the Navy after 13 years. I had 6 months of transitional coverage with TRICARE, but the appointments continued to be fruitless. Concurrently, I sought to branch out and connect with expert specialists using my new private insurance (what a joke). Since that point, I’ve continued to try conservative treatment, without much success. Have had a couple rounds of PT, for both neck and back, as well as several attempts at Chiro (big mistake). Additionally, I’m fortunate to have a cousin in the Va Beach area who is an amazing Physiatrist/Pain Management Doc. She’s taken pity on me and tried a variety of treatment avenues, to include manipulation, trigger point injections, and prolotherapy injections (4 rounds). No significant relief, but it seem to stabilize the issue. I also had a discogram/CT done in July by a local pain management practice. The results were negative during the injections (he even tried twice), but the CT showed pretty extensive degeneration at L5/S1 (no surprise). Ironically, while there was no pain from the procedure, it wasn’t long after it that I began having significant/sharp pain in the vicinity of the ride side L5/S1 facets and SI joint. That’s probably not the origin, but it’s the first time I’ve had something quite this sharp…..and it’s continued ever since. By late in the year, I went for a consult highly regarded ortho surgeon in the area and, for the first time, he broached the issue of doing an ALIF (after trying more conservative stuff first, and noting retrolisthesis of L5). While highly qualified, his bedside manner is lacking, and I’m not sure I’m at that point. Concurrently, the VA docs have said the only thing they can offer me is a TLIF, and that it would be a 6 month wait even for that.
So, there you have it….the somewhat unabridged story of life as a spine patient. I could go into a whole lot more detail, but you’ve all been there and done that. The biggest problem I have is that I’ve gone from a VERY active 30-something, to a semi-sedentary couch potato (with the associated gain in weight and depression). I hand it to my wife for having the patience of a saint, but it’s tough to really convey the sense of frustration and hopelessness to people who haven’t been afflicted with the insidious ailment. I’d like to hope that I can keep this in check, and return to being “normal”, but the gradual slide continues. I hope that, by being able to bond with others who understand, I’ll be able to ride the wave that life has dealt me. Thanks for listening!

Hi Alan, Welcome to SPS, but I am so sorry for the spine history you have been contending with. No easy task, by a long shot. It sounds like your quality of life has been going down hill slowly but steadily. Not sure if you are asking any questions or if you are simply seeking fellow comrades of spine pain who understand (and believe me, we do), but I am just wondering how we could possibly help you more? Please let us know if and how we could help you further. Take care, Cindylou

[Tatonka_usn]

Not sure if you are asking any questions or if you are simply seeking fellow comrades of spine pain who understand (and believe me, we do), but I am just wondering how we could possibly help you more? Please let us know if and how we could help you further. Take care, Cindylou

I think the goal of my post was to provide a basic introduction, and give a history of my experiences with spinal issues. Don't know that I expect any sort of specific "help", as I've run the gamut of diagnostics, therapies, procedures, and mental anguish so far. I'd like to think that just having a group of folks out there who have been through much the same is something of a catharsis for me. Plus, as a read everyone's posts, it allows me to focus on something OTHER THAN my own problem.

[Cindylou]

I think the goal of my post was to provide a basic introduction, and give a history of my experiences with spinal issues. Don't know that I expect any sort of specific "help", as I've run the gamut of diagnostics, therapies, procedures, and mental anguish so far. I'd like to think that just having a group of folks out there who have been through much the same is something of a catharsis for me. Plus, as a read everyone's posts, it allows me to focus on something OTHER THAN my own problem.

Well said Alan. Distraction is a powerful tool when dealing with one's own demons. Glad you're on board. Cindylou