Well, 4 days post-procedure and no changes to report...other than an exceptionally painful last couple of days, which been pretty disheartening to say the least. I haven't yet decided whether to try the C1 nerve root block on the right side yet. We're still waiting to hear back from my neurologist, Dr. Dodick to get his opinion.
Meanwhile, we've been pursuing some other steps, as usual. Last week, we had a conversation with Craig's colleague, Dr. Sugarman (EXOS' director of applied neuroscience) about the therapeutic use of ketamine for chronic pain. You've probably heard of ketamine as an anesthetic, and depending how well versed you are in street drugs (a weak point for me, admittedly), you may be familiar with its reputation as a party drug with dissociative properties that provide hallucinogenic effects.
By blocking NMDA receptors for glutamate (different mechanisms than most anti-depressants), ketamine provides some promising therapeutic benefits, particularly in the treatment of depression and certain pain disorders like complex regional pain syndrome, which typically includes some element of central pain. I've explained this before but central pain is a neurological conditional, caused by damage or malfunction of the central nervous system, which over time causes a sensitization of the pain system. Basically what this means is that you could sustain an injury (in my case, bike accident) and have a very tangible "cause of pain" (let's say in my case it was a ligament instability, nerve irritation, etc.) and over time, the body adapts becomes sensitized to the pain. At some point, the mechanism of pain could be totally gone, or perhaps partially gone (i.e. ligaments heal, inflammation goes away), but the pain switch is still "turned on", if that makes sense.
Because it's been suspected for quite a while (particularly by Dr. Dodick) that central pain is playing some role in my headache, it seems logical that we'd have nothing to lose by treating central pain in any way possible. I have tried some things (Botox, medication, etc.) without result, but that doesn't mean that Ketamine doesn't deserve a chance to work its magic.
So in our research over the last week, we happened to stumble upon an integrative clinic here in Scottsdale, Freedom Pain Hospital, that performs Ketamine Infusion Therapy. This afternoon Craig and I went to meet with the medical director, Dr. Natalie Strand. The appointment went really well and we decided that a course of infusions was definitely worth a shot. I have to see a cardiologist and psychologist next week, per their clearance protocol, to get medical approval and should start treatment in just a few weeks. Dr. Strand explained that it's going to be a bit of a guessing game, simply because they don't really treat patients with exactly my condition. She suspects I'll need a stronger dose than migraine patients (which is generally one day) but less than complex regional pain patients (which is generally 10 days of 4 hour treatments). I think I'll be starting with 3-5 days, but may modify depending upon my response.
In today's visit, we also discussed the experiences I've had with occipital blocks. I've had these injections with at least 3 other neurologists over the past 1.5 years without relief, but we collectively thought it was odd that I've never felt numbing throughout my head after the injections (which I should feel). Craig and I always suspected that I was just resistant to lidocaine, but Dr. Strand said that there is a chance the nerve itself was never directly targeted. She suggested we try another round, but this time she'll inject over a "field" of space in the back of my head, which guarantees that the nerve will be covered. If I feel any kind of change with that procedure, we'll go from there. Fortunately, we were able to schedule it for tomorrow morning. If I have a positive response to the occipital blocks, we may try doing them again after I start the ketamine infusions. That way, we're targeting a peripheral pain source with the injections and a central pain source with the ketamine at the same time. More than likely, there's a peripheral and centralized pain contribution occurring, so this should provide an even stronger chance of attacking it.
More updates to come after tomorrow's visit.
Annnnd, breathe.
Thursday, September 25, 2014
Monday, September 22, 2014
C1 Nerve Root Block
Long day...but my C1 nerve root block (left side) is complete! So far, I'm not feeling any changes, but Dr. Chong has warned me that it could take up to a few days to kick in...so I'm trying to stay positive. Regardless of the outcome, the procedure will still serve as a helpful piece of information in trying to uncover the source of my headache moving forward. Depending how I feel in the next few days, we may also decide to proceed with the identical procedure on my right side next week.
Though I've had several nerve blocks/ablations done in the last 1.5 years, they've all been pretty low-risk outpatient procedures at various pain clinics. Today's procedure at Mayo Clinic felt a little different from the start, simply due to the greater risk of working at C1.
Allow me to explain with these 3 (somewhat humorous) things I learned today...
1. A C1 nerve root block has never been performed at Mayo Clinic (AZ or Rochester).
2. When you Google "C1 nerve root block", the first hit that appears...wait for it...MY BLOG. Not a medical journal. Not a pain clinic. Not a health organization. My blog.
3. When I was sitting in my hospital bed during recovery, I overheard a few doctors/nurses who were walking by say to each other... "There's NO room between the vertebral artery and C1!"
So, as you might imagine, our excitement was rivaled by some warranted anxiety. But Craig and I both felt incredibly confident in Dr. Chong and felt 100% certain the potential benefits far outweighed potential risks.
I checked in around noon and spent the next hour or so getting prepped by the nurses and meeting with the anesthesiology team that would be in the room "just in case". Originally, Dr. Chong hadn't planned on needing them available, but after planning for the procedure and consulting with some colleagues here at Mayo Scottsdale and in Rochester, MN he decided that would be best. The target space for the needle was very small and IF it had moved into the epidural space, I would have gone numb from the upper neck down, which would have stopped my breathing. If that was the case, they would have been there to intubate me. This consideration also changed the position I was in the table. Originally he was going to have my lie in a prone position, but I ended up propped up onto my right side so that they could have got to the leeds on my back in a shorter amount of time if there was a breathing emergency.
(Paparazzi snuck in)
Before he got started, Dr. Chong had Craig come into the OR to explain his exact plan of attack, complete with several helpful anatomy diagrams and cadaver images. I wish I could include the ones he showed us, but here's some visual to show you where the needle went...
Follow the arrows I stuck in there...
To give you a better sense of where the vertebral artery is in relation to that first vertebra, check this next one out. A needle accidentally hitting that would result in stroke...eek!
The procedure itself wasn't particularly painful (I had a little bit of sedative to take the edge off) but lasted longer than the other blocks I've had to date. Since it was performed with CT guidance, Dr. Chong used a contrast dye that allowed him to see exactly where he needed to be (which felt strangely hot as it shot through my body) and then injected the lidocaine and celestone bit by bit to ensure I was tolerating it well.
I'm back home now, feeling "normal" pain-wise and pretty groggy/in need of a good night's sleep. Hopefully I started feeling some changes in the next few days.
Though I've had several nerve blocks/ablations done in the last 1.5 years, they've all been pretty low-risk outpatient procedures at various pain clinics. Today's procedure at Mayo Clinic felt a little different from the start, simply due to the greater risk of working at C1.
Allow me to explain with these 3 (somewhat humorous) things I learned today...
1. A C1 nerve root block has never been performed at Mayo Clinic (AZ or Rochester).
2. When you Google "C1 nerve root block", the first hit that appears...wait for it...MY BLOG. Not a medical journal. Not a pain clinic. Not a health organization. My blog.
3. When I was sitting in my hospital bed during recovery, I overheard a few doctors/nurses who were walking by say to each other... "There's NO room between the vertebral artery and C1!"
So, as you might imagine, our excitement was rivaled by some warranted anxiety. But Craig and I both felt incredibly confident in Dr. Chong and felt 100% certain the potential benefits far outweighed potential risks.
I checked in around noon and spent the next hour or so getting prepped by the nurses and meeting with the anesthesiology team that would be in the room "just in case". Originally, Dr. Chong hadn't planned on needing them available, but after planning for the procedure and consulting with some colleagues here at Mayo Scottsdale and in Rochester, MN he decided that would be best. The target space for the needle was very small and IF it had moved into the epidural space, I would have gone numb from the upper neck down, which would have stopped my breathing. If that was the case, they would have been there to intubate me. This consideration also changed the position I was in the table. Originally he was going to have my lie in a prone position, but I ended up propped up onto my right side so that they could have got to the leeds on my back in a shorter amount of time if there was a breathing emergency.
(Paparazzi snuck in)
Before he got started, Dr. Chong had Craig come into the OR to explain his exact plan of attack, complete with several helpful anatomy diagrams and cadaver images. I wish I could include the ones he showed us, but here's some visual to show you where the needle went...
Follow the arrows I stuck in there...
To give you a better sense of where the vertebral artery is in relation to that first vertebra, check this next one out. A needle accidentally hitting that would result in stroke...eek!
The procedure itself wasn't particularly painful (I had a little bit of sedative to take the edge off) but lasted longer than the other blocks I've had to date. Since it was performed with CT guidance, Dr. Chong used a contrast dye that allowed him to see exactly where he needed to be (which felt strangely hot as it shot through my body) and then injected the lidocaine and celestone bit by bit to ensure I was tolerating it well.
I'm back home now, feeling "normal" pain-wise and pretty groggy/in need of a good night's sleep. Hopefully I started feeling some changes in the next few days.
Friday, September 19, 2014
C1 nerve root block on Monday!
Yesterday I had my appointment with Dr. Chong, a vascular radiologist at Mayo Clinic. My neurologist, Dr. Dodick, had referred me to him to discuss a C1 nerve root block. In short, the visit went really well and we left with a plan of action that Craig and I are both feeling good about.
As he reviewed my radiology reports and we started discussing my "story", Dr. Chong reiterated to us that he isn't a headache specialist, or a even a pain specialist for that matter. He specializes in neurointervention. Basically, he puts needles in places that are hard to get to. And he's good at it.
As I've explained before, C1 blocks aren't common and that's because it's an area of prime real estate. The needle's target is a 2-3 mm space and Dr. Chong will perform the procedure under CT guidance (whereas my previous blocks/ablations have been under fluoroscopy). I mentioned in my last post that we needed to find out how much experience Dr. Chong has had with C1 nerve root blocks. He's only done a handful (which is a handful more than every other doctor) but his experience and expertise IS in using guided procedures to treat conditions like brain aneurysms, vascular malformations of the brain, etc. The way he explained it was that his experience/skill in the "how" of what he does is actually more important than there "where".
The procedure, which I'm scheduled to have THIS MONDAY (!!!) could potentially be both diagnostic and therapeutic. It will contain a short-acting anasthetic (lidacaine) and an anti-inflammatory (celestone). We'll start with just the left side this Monday, as he didn't want to do both sides in one day in case I didn't respond well.
The potential scenarios are as follows...
1. I start feeling pain relief in the first 24-48 hours, the pain cycle is finally broken, and my headache is gone forever. This scenario would kick ass, but what's more likely is...
2. I start feeling relief in the first 24-48 hours and my relief is temporary. The next step would then be for me to see Dr. Barry Birch, a spine surgeon at Mayo who would likely perform a permanent risotomy (where the nerve is actually cut). When we asked whether they'd consider a pulsed radiofrequency ablation like I had at C2-C5, Dr. Chong explained that although they're less invasive, RFs aren't quite as precise (i.e. safe).
3. I don't feel relief. Then we'll try the right side the next week.
4. I don't feel relief from either side. Then I'll be done with Dr. Chong and will loop back with Dr. Dodick to figure out next steps. (Dr. Chong is like a contractor here...basically being hired to perform a very specific task).
Lastly, Dr. Chong was NOT concerned at the basilar invagination from my MRI. He assured us that he actually sees this quite a bit and it doesn't worry him with me, simply because I have enough fluid surrounding my spinal cord in that area that appears to be "kinked". So that's great news.
I'll plan to update after Monday's procedure... Thanks for all the positive thoughts sent my way. They're felt and appreciated : )
As he reviewed my radiology reports and we started discussing my "story", Dr. Chong reiterated to us that he isn't a headache specialist, or a even a pain specialist for that matter. He specializes in neurointervention. Basically, he puts needles in places that are hard to get to. And he's good at it.
As I've explained before, C1 blocks aren't common and that's because it's an area of prime real estate. The needle's target is a 2-3 mm space and Dr. Chong will perform the procedure under CT guidance (whereas my previous blocks/ablations have been under fluoroscopy). I mentioned in my last post that we needed to find out how much experience Dr. Chong has had with C1 nerve root blocks. He's only done a handful (which is a handful more than every other doctor) but his experience and expertise IS in using guided procedures to treat conditions like brain aneurysms, vascular malformations of the brain, etc. The way he explained it was that his experience/skill in the "how" of what he does is actually more important than there "where".
The procedure, which I'm scheduled to have THIS MONDAY (!!!) could potentially be both diagnostic and therapeutic. It will contain a short-acting anasthetic (lidacaine) and an anti-inflammatory (celestone). We'll start with just the left side this Monday, as he didn't want to do both sides in one day in case I didn't respond well.
The potential scenarios are as follows...
1. I start feeling pain relief in the first 24-48 hours, the pain cycle is finally broken, and my headache is gone forever. This scenario would kick ass, but what's more likely is...
2. I start feeling relief in the first 24-48 hours and my relief is temporary. The next step would then be for me to see Dr. Barry Birch, a spine surgeon at Mayo who would likely perform a permanent risotomy (where the nerve is actually cut). When we asked whether they'd consider a pulsed radiofrequency ablation like I had at C2-C5, Dr. Chong explained that although they're less invasive, RFs aren't quite as precise (i.e. safe).
3. I don't feel relief. Then we'll try the right side the next week.
4. I don't feel relief from either side. Then I'll be done with Dr. Chong and will loop back with Dr. Dodick to figure out next steps. (Dr. Chong is like a contractor here...basically being hired to perform a very specific task).
Lastly, Dr. Chong was NOT concerned at the basilar invagination from my MRI. He assured us that he actually sees this quite a bit and it doesn't worry him with me, simply because I have enough fluid surrounding my spinal cord in that area that appears to be "kinked". So that's great news.
I'll plan to update after Monday's procedure... Thanks for all the positive thoughts sent my way. They're felt and appreciated : )
Friday, September 5, 2014
September update
Yikes, that month flew by. My last post was a long one, with updates on my recent Rolfing treatment and cranial osteopathic treatments (both of which failed to yield any positive changes in my pain), as well as an outline of next steps, which included...
1. Seeing Dr. Dodick (my neurologist at Mayo Clinic) for a referral to his friend at UCLA who performs the C1 nerve root block.
2. Seeing Dr. McJunkin (my pain doctor at AZ Pain Specialists) to ask questions about the dorsal root ganglion ablation that he thought was warranted after a (somewhat?) positive response to the diagnostic dorsal root ganglion block I had a few months back, and find out more information about the regenerative therapies we've talked about with him in the past (stem cell therapy, PRP, etc.)
3. Address increasing hip pain with Tony, a PT at EXOS (in the chance that there's some dysfunction up the chain that's contributing to my headache).
I wasn't supposed to see Dr. Dodick until mid September, but thankfully he was able to get me in just before we left for our east coast trip to visit my family in August. Speaking of our trip, it was great to be home...we made it to my friends Heidi and Paul's amazing wedding, were able to spend time with some extended family, and vacationed our asses off at my aunt and uncle's ski house in beautiful Maine. Though I would have happily left my headache at home in Scottsdale, to shrivel up and die like the succulent cacti on my kitchen counter, the little fucker came along anyway. And as much I always love being home, the change in my normal daily routine was a bit tough on my pain. I don't think I fully appreciated how "low key" my lifestyle is these days until I was faced with a bit more stimulation...more activity, more commotion, more traveling, more talking, more listening, more socializing. So I found myself feeling more frustrated than ever, as I so, so desperately want to be able to do all of those things...to engage fully in the world without feeling like I need to go lay in a room by myself and cover my head with an ice pack and hope I can fall asleep for a while just to get a break from the pain. Comparing how I felt during this trip to the previous summer's Maine vacation, or even December when I was home last, was also a pretty harsh reminder of how my headache has worsened in the last year.
Cue the Debbie downer music, huh? But really, I do feel optimistic that we're getting close to a solution. We have to be, right?
So, back to my appointment with Dr. Dodick. He was still happy to refer me to Dr. Charles at UCLA for the C1 nerve root block procedure, but informed us of a new doctor right here at Mayo, Dr. Chong, who also does it. (Keep in mind that because C1 is such prime real estate and the margin for error is quite small compared to other levels of the spine, there are literally just a couple of doctors in the country that do it.) Dr. Chong is a vascular radiologist. I'm scheduled to see him for a consultation on September 18th, though him and Dr. Dodick have already discussed my case and it sounds like he's on board with the procedure.
Craig and I also spoke with Dr. Dodick about some additional pain management tools. He agrees that I'm pretty medicationed-out at this point, but told us about a new study he's in charge of that will be testing the effectiveness of TMS therapy on migraine/cluster headache patients. This is what the TMS device looks like...
TMS, or Transcranial Magnetic Stimulation uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons. Historically, it's been used in the treatment of depression but looks like it could be a promising therapy for the treatment of pain too, given that certain pain conditions involve very similar brain pathways as depression (ex: centralized pain, which Dr. Dodick thinks is at least part of what's going on me with). I don't technically qualify to participate in his study since my 24/7 headache isn't diagnosed as a migraine or cluster headache, but Dr. Dodick kindly offered to lend me a device to try out when they arrive next month. Worth a shot!
On to Dr. McJunkin... We went in to see him earlier this week. First, we expressed our concern around the risks of hypersentization of the dorsal root ganglion radiofrequency ablation (DRG RFA), which were communicated to us by Dr. Paicius, the pain doctor I saw in Newport Beach for a second opinion. To recall, Dr. Paicius instead wanted me to try another course of meds (Topomax and Cymbalta)...which I did for about 6 weeks without relief. Dr. McJunkin explained to us that DRG RFA is a "cold" RFA (less chance of neuritis) and that even if hypersensitivity occurred, it typically goes away in 8 weeks.
We also wanted to understand if and when the regenerative therapies would be appropriate - basically, what's the relationship between PRP, stem cell, and prolotherapy with the C1 nerve root block? His response was that they would essentially act as super powerful anti-inflammatories and agreed that it was reasonable for us to proceed with the C1 nerve root back, provided that Dr. Chong has done a fair number of these (I asked what number he'd be comfortable with and he said a a minimum of 10).
We discussed a few other potential options, like spinal cord stimulation (where a device actually gets implanted by your hip and stimulates the spinal cord and spinal nerves by tiny electrical impulses via a small electrical wire placed behind and just outside the spinal cord in the epidural space)...definitely NOT at the top of my list or his, and a sphenopalentine ganglion block (a transnasal procedure that blocks sympathetic activity by anesthetizing the SPG).
Lastly, we wanted to get his opinion on the basilar invagination from my MRI (remember I posted an image of the little "kink" in my spinal cord?) He thought it would be smart to see a neurosurgeon to get their take so referred me to Dr. Chang at Barrows.
We wrapped up the visit with this plan of attack
1. Have my C1 consult/likely procedure with Dr. Chong
2. Schedule a C2 DRG RFA.
3. Start exploring regenerative therapies, (probably stem cell first since he it's more powerful than PRP).
And finally...my hip...
I've been working with Tony at EXOS for a few weeks and my hip is actually FEELING BETTER. He's dry needled my psoas and also helped me establish some better glute activation exercises pre-workout that have made all the difference. This shouldn't seem so miraculous, but compared to my headache, treating a problem and then experiencing relief feels like actual magic. Even if my hip improvement hasn't translated to anything upstairs, I'm confident that all of the puzzle pieces are connected somehow. In the meantime, I'll settle for feeling strong on my mountain bike :)
More updates so come!
1. Seeing Dr. Dodick (my neurologist at Mayo Clinic) for a referral to his friend at UCLA who performs the C1 nerve root block.
2. Seeing Dr. McJunkin (my pain doctor at AZ Pain Specialists) to ask questions about the dorsal root ganglion ablation that he thought was warranted after a (somewhat?) positive response to the diagnostic dorsal root ganglion block I had a few months back, and find out more information about the regenerative therapies we've talked about with him in the past (stem cell therapy, PRP, etc.)
3. Address increasing hip pain with Tony, a PT at EXOS (in the chance that there's some dysfunction up the chain that's contributing to my headache).
I wasn't supposed to see Dr. Dodick until mid September, but thankfully he was able to get me in just before we left for our east coast trip to visit my family in August. Speaking of our trip, it was great to be home...we made it to my friends Heidi and Paul's amazing wedding, were able to spend time with some extended family, and vacationed our asses off at my aunt and uncle's ski house in beautiful Maine. Though I would have happily left my headache at home in Scottsdale, to shrivel up and die like the succulent cacti on my kitchen counter, the little fucker came along anyway. And as much I always love being home, the change in my normal daily routine was a bit tough on my pain. I don't think I fully appreciated how "low key" my lifestyle is these days until I was faced with a bit more stimulation...more activity, more commotion, more traveling, more talking, more listening, more socializing. So I found myself feeling more frustrated than ever, as I so, so desperately want to be able to do all of those things...to engage fully in the world without feeling like I need to go lay in a room by myself and cover my head with an ice pack and hope I can fall asleep for a while just to get a break from the pain. Comparing how I felt during this trip to the previous summer's Maine vacation, or even December when I was home last, was also a pretty harsh reminder of how my headache has worsened in the last year.
Cue the Debbie downer music, huh? But really, I do feel optimistic that we're getting close to a solution. We have to be, right?
So, back to my appointment with Dr. Dodick. He was still happy to refer me to Dr. Charles at UCLA for the C1 nerve root block procedure, but informed us of a new doctor right here at Mayo, Dr. Chong, who also does it. (Keep in mind that because C1 is such prime real estate and the margin for error is quite small compared to other levels of the spine, there are literally just a couple of doctors in the country that do it.) Dr. Chong is a vascular radiologist. I'm scheduled to see him for a consultation on September 18th, though him and Dr. Dodick have already discussed my case and it sounds like he's on board with the procedure.
Craig and I also spoke with Dr. Dodick about some additional pain management tools. He agrees that I'm pretty medicationed-out at this point, but told us about a new study he's in charge of that will be testing the effectiveness of TMS therapy on migraine/cluster headache patients. This is what the TMS device looks like...
TMS, or Transcranial Magnetic Stimulation uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons. Historically, it's been used in the treatment of depression but looks like it could be a promising therapy for the treatment of pain too, given that certain pain conditions involve very similar brain pathways as depression (ex: centralized pain, which Dr. Dodick thinks is at least part of what's going on me with). I don't technically qualify to participate in his study since my 24/7 headache isn't diagnosed as a migraine or cluster headache, but Dr. Dodick kindly offered to lend me a device to try out when they arrive next month. Worth a shot!
On to Dr. McJunkin... We went in to see him earlier this week. First, we expressed our concern around the risks of hypersentization of the dorsal root ganglion radiofrequency ablation (DRG RFA), which were communicated to us by Dr. Paicius, the pain doctor I saw in Newport Beach for a second opinion. To recall, Dr. Paicius instead wanted me to try another course of meds (Topomax and Cymbalta)...which I did for about 6 weeks without relief. Dr. McJunkin explained to us that DRG RFA is a "cold" RFA (less chance of neuritis) and that even if hypersensitivity occurred, it typically goes away in 8 weeks.
We also wanted to understand if and when the regenerative therapies would be appropriate - basically, what's the relationship between PRP, stem cell, and prolotherapy with the C1 nerve root block? His response was that they would essentially act as super powerful anti-inflammatories and agreed that it was reasonable for us to proceed with the C1 nerve root back, provided that Dr. Chong has done a fair number of these (I asked what number he'd be comfortable with and he said a a minimum of 10).
We discussed a few other potential options, like spinal cord stimulation (where a device actually gets implanted by your hip and stimulates the spinal cord and spinal nerves by tiny electrical impulses via a small electrical wire placed behind and just outside the spinal cord in the epidural space)...definitely NOT at the top of my list or his, and a sphenopalentine ganglion block (a transnasal procedure that blocks sympathetic activity by anesthetizing the SPG).
Lastly, we wanted to get his opinion on the basilar invagination from my MRI (remember I posted an image of the little "kink" in my spinal cord?) He thought it would be smart to see a neurosurgeon to get their take so referred me to Dr. Chang at Barrows.
We wrapped up the visit with this plan of attack
1. Have my C1 consult/likely procedure with Dr. Chong
2. Schedule a C2 DRG RFA.
3. Start exploring regenerative therapies, (probably stem cell first since he it's more powerful than PRP).
And finally...my hip...
I've been working with Tony at EXOS for a few weeks and my hip is actually FEELING BETTER. He's dry needled my psoas and also helped me establish some better glute activation exercises pre-workout that have made all the difference. This shouldn't seem so miraculous, but compared to my headache, treating a problem and then experiencing relief feels like actual magic. Even if my hip improvement hasn't translated to anything upstairs, I'm confident that all of the puzzle pieces are connected somehow. In the meantime, I'll settle for feeling strong on my mountain bike :)
More updates so come!
Saturday, August 2, 2014
bodywork updates, upcoming docs, and some hip investigation
So last week, I had both my first Rolfing treatment and my first manual treatment with Dr. Chikly. Here's a recap of those...
The Rolfing wasn't totally what I expected, though not in a bad way. The goal of this form of structural integration is to open, balance, and align your body by working primarily with the fascia, or connective tissue. It has a reputation of being pretty painful, and that's because when it was first developed by Ida Rolf in the 1970s, it was characterized by the depth at which the practitioner was able to get into the body and manipulate the fascial system. So, deeper = harder = more pain. These days, we obviously know more about how fascia is richly innervated with nerves. As a result, deeper/harder/more painful can easily become counterproductive, as the body responds by tensing up and consequently not allowing the practitioner to reach deeper tissue layers. The practice of Rolfing has actually evolved to be a much gentler method, but its reputation has sort of stuck. (Not that I would have cared either way...hell, I'd probably let someone take a hammer to my body if they said they could pound out the pain.)
Based on his evaluation, I wouldn't say that Dr. Maitland had any fresh thoughts (as in, new opinions we haven't heard) but he felt confident it was worth trying a few sessions. He worked on different parts of my body, though mostly shoulders and above, and used a percussor instrument (which is basically a hand-held high level vibration tool that rapidly pulses straight down versus a traditional circular motion) to help break up myofascial adhesions. I think he was expecting me to feel some changes during the session. I didn't, and that was sort of a bummer but also not super surprising. We decided that regardless of how I felt over the next few days, we'd get at least one more session on the books.
A few days after that was my appointment with Dr. Chikly. Craig reminded me before we went to be prepared for some out-of-the-box thinking. Example: Dr. Chikly had asked me to bring the supplements I'm taking right now (currently just Vit. D, fish oil, and my raw food multi) and Craig said he might hold them up to my body to test their energy fields. And he was right...that was one of the first things he did. I like to think I'm pretty open minded, even though it sure can frustrating at times to connect the dots. But, I can't exactly afford to be close minded right now either.
The manual work that Dr. Chikly performed on me was also gentle, and felt similar to the treatments I've been having with the two other cranial osteopaths (though I'm sure he was using some different techniques). His feedback wasn't extensive, but did say that felt torsion through my spinal cord, which aligns with all of the dural tension speculation we've been receiving over the past few months. Similar to Dr. Maitland, I didn't feel any changes in pain during the session but we decided to set up at least one more visit, this coming Monday.
Since both of those treatments, my pain has remained the same, which as you can imagine, is frustrating.
As always though, Craig and I have set in motion a few next/simultaneous steps.
1. This coming Tuesday, we see Dr. Dodick, my neurologist at Mayo. I mentioned this in a previous post, but the purpose of this visit is to discuss a referral to his friend/colleague and director of the headache and migraine program at UCLA, who is pioneering a procedure directed at C1. We've only communicated with Dr. Dodick via email about this, so all we know is that it's an x-ray guided C1 block that's similar to a C2 block but targets a different nerve root that has never been approached before because they didn't believe it caused pain until now. We're looking forward to getting in there to chat more and likely plan another trip out to LA soon.
2. In early September, I am scheduled to go back to AZ Pain Specialists to see Dr. McJunkin and talk more about Stem Cell Therapy for treatment of chronic pain. I'll talk more about this as the appointment gets closer or you can watch a quick video of Dr. McJunkin talking about it here.
3. This is going to seem a bit random, but lately my left hip has really been bothering me. I had arthroscopic surgery on both hips in 2010 to repair labral tears from soccer/running and for the most part, they haven't given me problems since. My left one has always felt a bit "pinchy", but as far as my commitment to fully rehab it goes, my headache has sort of taken precedence. It's annoying, but compared to my head, I can't even call the sensation in my hip "pain".
As I've mentioned before, though, I've always had this intuitive feeling of my left hip issues being connected to my left trap (chronically tight) and left side of my neck (both of which I am CERTAIN are part of my head issue). And I've had therapists work on my hip over the last couple of years, agreeing that a relationship between the two were quite possible...we've just never seemed to crack the code or gain any traction (on one or other).
In the past month or so, my hip has been feeling worse, and there have been really bad headache days that I've noticed correlate with even worse hip days. Craig and I decided it would be a good idea to restart some PT at EXOS to focus on my hips. Our thought being that best case scenario, we affect my head or gain some insight into whatever the relationship is between the two and worse case, my hip feels better and we've created an optimized healing environment for my head.
So a few times per week for the past several weeks, I've been working with Tony (PT) and Eric (massage therapist). Although all of hip muscles have benefited from the work we've been doing, I'd been having a hard time "getting at" the place where I feel the most discomfort. Kind of in the front...but underneath...a little in the back...but deep. We eventually figured out that the likely culprit is my psoas muscle. Bear with me...there is a reason I'm explaining all of this!
The psoas, also known as a primary hip flexor and ‘’13th Organ,’’ originates at the transverse processes of last thoracic and 5 lumbar vertebrae (T12-L5), bisects through deep inside of the gut and attaches at the inner femur (thigh bone). This is a very unique muscle that both flexes and laterally rotates the hip, and is one of the major muscles responsible for walking.
The lower portion of the psoas intertwines with the fibers of the iliacus, and together they form a muscle group known as iliopsoas.
The psoas also affects the structure of our upper body. It originates at T12 which is a major attachment site for the trapezius muscle. Through this junction the psoas can send forces into the upper body and directly affects the level of shoulder flexion (reaching your arm above your head).
Did you see that?!?!?
It originates at the attachment site for the trapezius!
Like I said, I have always felt 500% confident that the chronic tension in my left trap is connected to my headache. I haven't known how, and still don't, but just understanding this anatomy feels like I'm finally putting two puzzle pieces together.
Since figuring this out, I've naturally been reading and researching it like a f-ing maniac and have learned that although chronic hip flexion (sitting, etc.) is the most common cause of psoas dysfunction, it can also of course become restricted from physical injuries, car accidents, falls, etc.
I'm assuming if you're still reading, you're at least somewhat interested in what I'm writing so I'll include this excerpt that I found online...
The EMG study was done on a 50 year-old actress who, after a neck injury that occurred 30 years ago, suffered with dizziness, vertigo and tension headaches. Manipulation of the atlanto-occipital and atlantoaxial joints gave her only short-term relief. Possibly in this case, if the blocked sacroiliac joint was the cause of the hypotonic gluteus maximus, then manipulation of the sacroiliac joint would have eliminated the hyperactivity of the cervical musculature and would have been more effective than just manipulation of the upper cervicals.
It appears that the underlying cause of headache is this case was really related to a hypotonic gluteus maximus, which can have other causes besides a sacroiliac blockage. An internally rotated hip will inhibit the gluteus maximus, as will a chronically shortened psoas muscle. The gluteus maximus will be inhibited by its antagonist, the short psoas. Attempting to strengthen the weak gluteus maximus without normalizing the tightened psoas would prove fruitless.
In ordinary walking there should be minimal activity of the upper trapezius and levator scapulae but if these muscles are hyperactive, there will be over stress to the cervical spine. Janda has stated that with over activation of the shoulder and neck muscles, due to decreased activation of the gluteus maximus during hip extension, results in abnormal anterior tilt and rotation of the lower cervical segments, mostly at C6 and partly at C5 and C7.6 With each step there is excessive rotation and tilting occurring in the cervical spine.
With a patient lying prone with feet off the edge of a table, it is possible to see the hyperactivity of the shoulder neck muscles as the patient extends the hip.
This discussion emphasizes the fact that an abnormal pattern of movement in one areas (lumbar spine, hip and pelvis) was related to over activity of muscle activity in a distant area (cervical spine). The cause could have been articular (sacroiliac blockage) or muscular (shortened psoas). Obviously, we must look at the total subluxation complex with each patient.
Bottom line: I still don't know for sure what's going on, but I know that I have a cervicogenic headache (originating from cervical spine), my psoas doesn't feel good, and that psoas dysfunction can impact the cervical spine. Craig just ordered me a book called Front to Back “The Hidden Culprit”: This new approach to iliopsoas enables you to successfully treat your back pain, neck pain and headaches, which I'm really looking forward to reading.
Tony and I just started working on my psoas last week in PT (with deep tissue, dry needling, and some different exercises) so I'm feeling good about having a new focus with that too.
As always, hoping to have more positive news to report soon!
The Rolfing wasn't totally what I expected, though not in a bad way. The goal of this form of structural integration is to open, balance, and align your body by working primarily with the fascia, or connective tissue. It has a reputation of being pretty painful, and that's because when it was first developed by Ida Rolf in the 1970s, it was characterized by the depth at which the practitioner was able to get into the body and manipulate the fascial system. So, deeper = harder = more pain. These days, we obviously know more about how fascia is richly innervated with nerves. As a result, deeper/harder/more painful can easily become counterproductive, as the body responds by tensing up and consequently not allowing the practitioner to reach deeper tissue layers. The practice of Rolfing has actually evolved to be a much gentler method, but its reputation has sort of stuck. (Not that I would have cared either way...hell, I'd probably let someone take a hammer to my body if they said they could pound out the pain.)
Based on his evaluation, I wouldn't say that Dr. Maitland had any fresh thoughts (as in, new opinions we haven't heard) but he felt confident it was worth trying a few sessions. He worked on different parts of my body, though mostly shoulders and above, and used a percussor instrument (which is basically a hand-held high level vibration tool that rapidly pulses straight down versus a traditional circular motion) to help break up myofascial adhesions. I think he was expecting me to feel some changes during the session. I didn't, and that was sort of a bummer but also not super surprising. We decided that regardless of how I felt over the next few days, we'd get at least one more session on the books.
A few days after that was my appointment with Dr. Chikly. Craig reminded me before we went to be prepared for some out-of-the-box thinking. Example: Dr. Chikly had asked me to bring the supplements I'm taking right now (currently just Vit. D, fish oil, and my raw food multi) and Craig said he might hold them up to my body to test their energy fields. And he was right...that was one of the first things he did. I like to think I'm pretty open minded, even though it sure can frustrating at times to connect the dots. But, I can't exactly afford to be close minded right now either.
The manual work that Dr. Chikly performed on me was also gentle, and felt similar to the treatments I've been having with the two other cranial osteopaths (though I'm sure he was using some different techniques). His feedback wasn't extensive, but did say that felt torsion through my spinal cord, which aligns with all of the dural tension speculation we've been receiving over the past few months. Similar to Dr. Maitland, I didn't feel any changes in pain during the session but we decided to set up at least one more visit, this coming Monday.
Since both of those treatments, my pain has remained the same, which as you can imagine, is frustrating.
As always though, Craig and I have set in motion a few next/simultaneous steps.
1. This coming Tuesday, we see Dr. Dodick, my neurologist at Mayo. I mentioned this in a previous post, but the purpose of this visit is to discuss a referral to his friend/colleague and director of the headache and migraine program at UCLA, who is pioneering a procedure directed at C1. We've only communicated with Dr. Dodick via email about this, so all we know is that it's an x-ray guided C1 block that's similar to a C2 block but targets a different nerve root that has never been approached before because they didn't believe it caused pain until now. We're looking forward to getting in there to chat more and likely plan another trip out to LA soon.
2. In early September, I am scheduled to go back to AZ Pain Specialists to see Dr. McJunkin and talk more about Stem Cell Therapy for treatment of chronic pain. I'll talk more about this as the appointment gets closer or you can watch a quick video of Dr. McJunkin talking about it here.
3. This is going to seem a bit random, but lately my left hip has really been bothering me. I had arthroscopic surgery on both hips in 2010 to repair labral tears from soccer/running and for the most part, they haven't given me problems since. My left one has always felt a bit "pinchy", but as far as my commitment to fully rehab it goes, my headache has sort of taken precedence. It's annoying, but compared to my head, I can't even call the sensation in my hip "pain".
As I've mentioned before, though, I've always had this intuitive feeling of my left hip issues being connected to my left trap (chronically tight) and left side of my neck (both of which I am CERTAIN are part of my head issue). And I've had therapists work on my hip over the last couple of years, agreeing that a relationship between the two were quite possible...we've just never seemed to crack the code or gain any traction (on one or other).
In the past month or so, my hip has been feeling worse, and there have been really bad headache days that I've noticed correlate with even worse hip days. Craig and I decided it would be a good idea to restart some PT at EXOS to focus on my hips. Our thought being that best case scenario, we affect my head or gain some insight into whatever the relationship is between the two and worse case, my hip feels better and we've created an optimized healing environment for my head.
So a few times per week for the past several weeks, I've been working with Tony (PT) and Eric (massage therapist). Although all of hip muscles have benefited from the work we've been doing, I'd been having a hard time "getting at" the place where I feel the most discomfort. Kind of in the front...but underneath...a little in the back...but deep. We eventually figured out that the likely culprit is my psoas muscle. Bear with me...there is a reason I'm explaining all of this!
The psoas, also known as a primary hip flexor and ‘’13th Organ,’’ originates at the transverse processes of last thoracic and 5 lumbar vertebrae (T12-L5), bisects through deep inside of the gut and attaches at the inner femur (thigh bone). This is a very unique muscle that both flexes and laterally rotates the hip, and is one of the major muscles responsible for walking.
The lower portion of the psoas intertwines with the fibers of the iliacus, and together they form a muscle group known as iliopsoas.
The psoas also affects the structure of our upper body. It originates at T12 which is a major attachment site for the trapezius muscle. Through this junction the psoas can send forces into the upper body and directly affects the level of shoulder flexion (reaching your arm above your head).
Did you see that?!?!?
It originates at the attachment site for the trapezius!
Like I said, I have always felt 500% confident that the chronic tension in my left trap is connected to my headache. I haven't known how, and still don't, but just understanding this anatomy feels like I'm finally putting two puzzle pieces together.
Since figuring this out, I've naturally been reading and researching it like a f-ing maniac and have learned that although chronic hip flexion (sitting, etc.) is the most common cause of psoas dysfunction, it can also of course become restricted from physical injuries, car accidents, falls, etc.
I'm assuming if you're still reading, you're at least somewhat interested in what I'm writing so I'll include this excerpt that I found online...
The EMG study was done on a 50 year-old actress who, after a neck injury that occurred 30 years ago, suffered with dizziness, vertigo and tension headaches. Manipulation of the atlanto-occipital and atlantoaxial joints gave her only short-term relief. Possibly in this case, if the blocked sacroiliac joint was the cause of the hypotonic gluteus maximus, then manipulation of the sacroiliac joint would have eliminated the hyperactivity of the cervical musculature and would have been more effective than just manipulation of the upper cervicals.
It appears that the underlying cause of headache is this case was really related to a hypotonic gluteus maximus, which can have other causes besides a sacroiliac blockage. An internally rotated hip will inhibit the gluteus maximus, as will a chronically shortened psoas muscle. The gluteus maximus will be inhibited by its antagonist, the short psoas. Attempting to strengthen the weak gluteus maximus without normalizing the tightened psoas would prove fruitless.
In ordinary walking there should be minimal activity of the upper trapezius and levator scapulae but if these muscles are hyperactive, there will be over stress to the cervical spine. Janda has stated that with over activation of the shoulder and neck muscles, due to decreased activation of the gluteus maximus during hip extension, results in abnormal anterior tilt and rotation of the lower cervical segments, mostly at C6 and partly at C5 and C7.6 With each step there is excessive rotation and tilting occurring in the cervical spine.
With a patient lying prone with feet off the edge of a table, it is possible to see the hyperactivity of the shoulder neck muscles as the patient extends the hip.
This discussion emphasizes the fact that an abnormal pattern of movement in one areas (lumbar spine, hip and pelvis) was related to over activity of muscle activity in a distant area (cervical spine). The cause could have been articular (sacroiliac blockage) or muscular (shortened psoas). Obviously, we must look at the total subluxation complex with each patient.
Bottom line: I still don't know for sure what's going on, but I know that I have a cervicogenic headache (originating from cervical spine), my psoas doesn't feel good, and that psoas dysfunction can impact the cervical spine. Craig just ordered me a book called Front to Back “The Hidden Culprit”: This new approach to iliopsoas enables you to successfully treat your back pain, neck pain and headaches, which I'm really looking forward to reading.
Tony and I just started working on my psoas last week in PT (with deep tissue, dry needling, and some different exercises) so I'm feeling good about having a new focus with that too.
As always, hoping to have more positive news to report soon!
Thursday, July 24, 2014
3 year pain reflection + 2 new docs
First thing's first, today is Craig's birthday! Of course this bring more excitement to me than him, but that's just because I welcome any chance I get to celebrate Craig. He is such an incredibly special person. That's not just because of the guidance, love, support, and inspiration he's selflessly provided through every second of my headache journey (he would correct me and say, *our headache journey), but the circumstances have certainly provided a constant reminder of just how lucky I am to have him by my side. I find it sort of funny to think about the meaning behind any future marriage vows: to take care of each other "in sickness and in health". Guess it doesn't hurt to seal the deal, but I'm pretty sure we've got that covered...am I right? So happy birthday Craig Friedman! Now come home from work please so we can crack open a bottle of Kombucha and get this party started.
So, headache update. From a pain standpoint, I don't have too much new and exciting information. It's there when I wake up, when I take Charlie to the park every morning, when I work out, when I grocery shop, when I relax on the couch, when I cook dinner, when I bring Charlie back to the park, when I hang out with Craig after work, and when I climb into bed. That 1-10 pain scale is virtually meaningless to me at this point, as I think 24/7 pain has made my perception of it so subjective. For example, if I only had a headache twice a month, let's say, I'm sure I would plan for those to be rest/unproductive days spent on the couch with an icepack. Maybe I'd be able to rate the headache as a 7/10 (10 being the worst pain I could imagine). But it gets trickier to apply that logic to a 24/7 headache. Am I at a 7/10? I have no f-ing idea, because I don't even remember what a 0 or 1 or 2 out of 10 feels like. Another reason I think the pain scale is BS for chronic pain is that it ignores a very significant dimension...that is the emotional stress, panic, and despair of feeling trapped in a state of physical agony day after day after day. So falling off my bike into a cactus or slicing my finger chopping vegetables might hurt like a b****, but the underlying certainty that the pain will go away totally mitigates the sense of suffering. Does that make sense?
That wasn't supposed to sound so helpless. I do believe my pain will go away (thanks to a certain someone who hammers that message into my head like it's nobody's business), but I'd be lying to say there wasn't some ebb and flow to my optimism. Sometimes, the struggle for me to believe there are better days ahead manifests simply as thoughts of self-doubt and frustration. I left my job almost a year ago. Will I be able to "catch up" in my career? Will I be able to make money and contribute financially? Will I regain my hunger for learning and intellectual stimulation? Why am I going back to this doctor for a seventh treatment when the previous sixth haven't helped me at all? Why does it feel like it's Groundhog day? Who the f*** has a headache for 3 years and why can't anybody figure out what's wrong me? (You know, those kind of thoughts.)
And then we can't forget about the slightly more articulated, expressive forms of that struggle (which usually feature some display of waterworks on my part)...or perhaps even a mid-mountain bike emotional breakdown, when I tell Craig that I want to just sell my bike because "it did this to me so why do I keep riding it?" It's ok, I can laugh about that now.
Bottom line, it's a daily challenge for me to stay laser focused on the outcome of of a pain-free tomorrow, but a challenge that I'm committed to overcoming. In the meantime, I avoid getting bogged down by the noise and distraction of negativity by directing my energy in the most purposeful way possible. While meditation, yoga, and other activities that require me to "be in my own head" end up digging me deeper into a hole of frustration, other forms of exercise have been providing that outlet I so desperately need. Someone asked me today, mid-workout, what I was training for. My answer: sanity :)
Before I sign off for the day to get ready for tonight's surprise party (kidding Craig, but that doesn't get old for me) I wanted to include some exciting treatment updates. I mentioned in my last post that this Friday, I have my first Rolfing session with Dr. Maitland. I'm super optimistic that this form of myofascial manipulation could really tap into the dural tension that everyone seems pretty confident is contributing to my pain.
And then this coming Sunday, I have another appointment with a new practitioner, Bruno Chikly, MD, DO, LMT, founder of the Chikly Health Institute and international seminar leader, lecturer, and writer. He specializes in osteopathic techniques and other hands-on modalities, both in Europe and the United States, including Manual Lymphatic Therapies, Osteopathy in the Cranial field, Biodynamics program in Osteopathy, CranioSacral Therapy, Visceral Manipulation, Mechanical Link, Muscle Energy, Myofascial Release, Neuromuscular Therapy, SomatoEmotional Release, Orthobionomy, Chi Nei Tsang, Zero Balancing, Reflexology, Polarity Therapy, Homeopathy and Oriental medicines. Craig and I knew he doesn't spend much time seeing patients anymore and spends a good chunk of time in Europe, but we knew he has a home-base in Scottsdale, so Craig tracked down a number a few weeks back and left a message and fortunately, he got in touch with us and is willing to see us at his home this weekend.
I'll be sure to post an update next week after these two sessions. And lastly, I thought I'd update the ole' health history list that I summarized back in October when I started writing. Much easier to carry this with me to my appointments than trying to squeeze a few extra lines in the margin. Seriously though, you're giving me 2 inches to answer that question?
Summary of specialists, diagnostics/tests, and treatment/therapies I've tried since my post-bike accident headaches started in July 2011:
Specialists
-11 Chiropractors
-10 Physical Therapists
-7 Neurologists
-6 Massage therapists
-4 Dentists
-4 Pain management doctors
-3 Cranial sacral therapists
-3 Cranial osteopaths
-3 Chinese Medicine MDs
-2 Myofascial release practitioners
-2 Functional neurologists
-2 Psychologists
-2 regular MDs
-1 Orthodontist
-1 Naturopath
-1 Physiatrist
-1 Neuro-optometrist
-1 Energy healer
-1 Dietician
-1 Psychiatrist
-1 Medical intuitive
-1 Spinal surgeon
-1 myopractor
-several emergency room MDs
Tests/Diagnostics:
-GI Effects Profile
-Comprehensive blood panel
-Static spinal x-ray
-MRI (spine and brain)
-Flouroscopic motion x-ray
-Medial branch nerve block C2-C5
-Dorsal root ganglion block C1-C2
Treatments/Therapies:
-Botox injections
-Pulsed radiofrequency nerve ablation C2-C5
-Cold laser
-Ultrasound
-Cranial analgesic electrotherapeutic device
-Hypnosis
-Brainwave Optimization brain training
-Meditation
-EMDR(Eye Movement Desensitization and Reprocessing)
-Visceral mobilization
-Neural therapy injections
-Occipital nerve blocks
-Trigger point injections
-DNS (Dynamic Neuromuscular Stabilization)
-Scraping
-Dry needling
-Pilates rehab
-Craniosacral therapy
-ART (active release technique)
-Cupping (both fire and suction)
-Vasper
-Emotion Code Technique
-Medical Marajuana (CBD)
-2 different mouthpieces
-Movement-based rehab
-Massage therapy
-Yoga
-Soft collar neck brace (24/7 for 9 weeks)
-Trigger point injections with Lidocaine and Kenalog
-Postural Restoration Institute therapy
-Glasses (PRI vision)
-NUCCA adjustments (upper cervical chiropractic)
-Cryotherapy
-IV therapy (Magnesium)
-Dry needling
-ARP wave therapy
-Acupuncture
-Pharmaceuticals
*Cambia
*Neurontin
*Toradol
*DHE
*Lorazepam
*Ketorolac
*Promethazine.
*Cymbalta
*Topomax
*Meloxicam
*Tramadol
*Tizanidine
*Methylprednisone Dospak
-Natural supplements
*co Q10
*riboflavin
*fish oil
*vitamin D
*Butterbur
*Neuroplex
*Limbrel
*Glutamine/Glycine/Taurine blend
*Alpha Lipoic Acid
*Ferryonyl
*St Johns Wort
*Olive Leaf
*Curcumin
*B Complex
*ADR
*Bioactive Silver Hydrosol
*Arnica
-Dietary changes (consisting of adding wild fish/organic eggs/organic chicken back into my 100% unprocessed/organic plant-based diet)
So, headache update. From a pain standpoint, I don't have too much new and exciting information. It's there when I wake up, when I take Charlie to the park every morning, when I work out, when I grocery shop, when I relax on the couch, when I cook dinner, when I bring Charlie back to the park, when I hang out with Craig after work, and when I climb into bed. That 1-10 pain scale is virtually meaningless to me at this point, as I think 24/7 pain has made my perception of it so subjective. For example, if I only had a headache twice a month, let's say, I'm sure I would plan for those to be rest/unproductive days spent on the couch with an icepack. Maybe I'd be able to rate the headache as a 7/10 (10 being the worst pain I could imagine). But it gets trickier to apply that logic to a 24/7 headache. Am I at a 7/10? I have no f-ing idea, because I don't even remember what a 0 or 1 or 2 out of 10 feels like. Another reason I think the pain scale is BS for chronic pain is that it ignores a very significant dimension...that is the emotional stress, panic, and despair of feeling trapped in a state of physical agony day after day after day. So falling off my bike into a cactus or slicing my finger chopping vegetables might hurt like a b****, but the underlying certainty that the pain will go away totally mitigates the sense of suffering. Does that make sense?
That wasn't supposed to sound so helpless. I do believe my pain will go away (thanks to a certain someone who hammers that message into my head like it's nobody's business), but I'd be lying to say there wasn't some ebb and flow to my optimism. Sometimes, the struggle for me to believe there are better days ahead manifests simply as thoughts of self-doubt and frustration. I left my job almost a year ago. Will I be able to "catch up" in my career? Will I be able to make money and contribute financially? Will I regain my hunger for learning and intellectual stimulation? Why am I going back to this doctor for a seventh treatment when the previous sixth haven't helped me at all? Why does it feel like it's Groundhog day? Who the f*** has a headache for 3 years and why can't anybody figure out what's wrong me? (You know, those kind of thoughts.)
And then we can't forget about the slightly more articulated, expressive forms of that struggle (which usually feature some display of waterworks on my part)...or perhaps even a mid-mountain bike emotional breakdown, when I tell Craig that I want to just sell my bike because "it did this to me so why do I keep riding it?" It's ok, I can laugh about that now.
Bottom line, it's a daily challenge for me to stay laser focused on the outcome of of a pain-free tomorrow, but a challenge that I'm committed to overcoming. In the meantime, I avoid getting bogged down by the noise and distraction of negativity by directing my energy in the most purposeful way possible. While meditation, yoga, and other activities that require me to "be in my own head" end up digging me deeper into a hole of frustration, other forms of exercise have been providing that outlet I so desperately need. Someone asked me today, mid-workout, what I was training for. My answer: sanity :)
Before I sign off for the day to get ready for tonight's surprise party (kidding Craig, but that doesn't get old for me) I wanted to include some exciting treatment updates. I mentioned in my last post that this Friday, I have my first Rolfing session with Dr. Maitland. I'm super optimistic that this form of myofascial manipulation could really tap into the dural tension that everyone seems pretty confident is contributing to my pain.
And then this coming Sunday, I have another appointment with a new practitioner, Bruno Chikly, MD, DO, LMT, founder of the Chikly Health Institute and international seminar leader, lecturer, and writer. He specializes in osteopathic techniques and other hands-on modalities, both in Europe and the United States, including Manual Lymphatic Therapies, Osteopathy in the Cranial field, Biodynamics program in Osteopathy, CranioSacral Therapy, Visceral Manipulation, Mechanical Link, Muscle Energy, Myofascial Release, Neuromuscular Therapy, SomatoEmotional Release, Orthobionomy, Chi Nei Tsang, Zero Balancing, Reflexology, Polarity Therapy, Homeopathy and Oriental medicines. Craig and I knew he doesn't spend much time seeing patients anymore and spends a good chunk of time in Europe, but we knew he has a home-base in Scottsdale, so Craig tracked down a number a few weeks back and left a message and fortunately, he got in touch with us and is willing to see us at his home this weekend.
I'll be sure to post an update next week after these two sessions. And lastly, I thought I'd update the ole' health history list that I summarized back in October when I started writing. Much easier to carry this with me to my appointments than trying to squeeze a few extra lines in the margin. Seriously though, you're giving me 2 inches to answer that question?
Summary of specialists, diagnostics/tests, and treatment/therapies I've tried since my post-bike accident headaches started in July 2011:
Specialists
-11 Chiropractors
-10 Physical Therapists
-7 Neurologists
-6 Massage therapists
-4 Dentists
-4 Pain management doctors
-3 Cranial sacral therapists
-3 Cranial osteopaths
-3 Chinese Medicine MDs
-2 Myofascial release practitioners
-2 Functional neurologists
-2 Psychologists
-2 regular MDs
-1 Orthodontist
-1 Naturopath
-1 Physiatrist
-1 Neuro-optometrist
-1 Energy healer
-1 Dietician
-1 Psychiatrist
-1 Medical intuitive
-1 Spinal surgeon
-1 myopractor
-several emergency room MDs
Tests/Diagnostics:
-GI Effects Profile
-Comprehensive blood panel
-Static spinal x-ray
-MRI (spine and brain)
-Flouroscopic motion x-ray
-Medial branch nerve block C2-C5
-Dorsal root ganglion block C1-C2
Treatments/Therapies:
-Botox injections
-Pulsed radiofrequency nerve ablation C2-C5
-Cold laser
-Ultrasound
-Cranial analgesic electrotherapeutic device
-Hypnosis
-Brainwave Optimization brain training
-Meditation
-EMDR(Eye Movement Desensitization and Reprocessing)
-Visceral mobilization
-Neural therapy injections
-Occipital nerve blocks
-Trigger point injections
-DNS (Dynamic Neuromuscular Stabilization)
-Scraping
-Dry needling
-Pilates rehab
-Craniosacral therapy
-ART (active release technique)
-Cupping (both fire and suction)
-Vasper
-Emotion Code Technique
-Medical Marajuana (CBD)
-2 different mouthpieces
-Movement-based rehab
-Massage therapy
-Yoga
-Soft collar neck brace (24/7 for 9 weeks)
-Trigger point injections with Lidocaine and Kenalog
-Postural Restoration Institute therapy
-Glasses (PRI vision)
-NUCCA adjustments (upper cervical chiropractic)
-Cryotherapy
-IV therapy (Magnesium)
-Dry needling
-ARP wave therapy
-Acupuncture
-Pharmaceuticals
*Cambia
*Neurontin
*Toradol
*DHE
*Lorazepam
*Ketorolac
*Promethazine.
*Cymbalta
*Topomax
*Meloxicam
*Tramadol
*Tizanidine
*Methylprednisone Dospak
-Natural supplements
*co Q10
*riboflavin
*fish oil
*vitamin D
*Butterbur
*Neuroplex
*Limbrel
*Glutamine/Glycine/Taurine blend
*Alpha Lipoic Acid
*Ferryonyl
*St Johns Wort
*Olive Leaf
*Curcumin
*B Complex
*ADR
*Bioactive Silver Hydrosol
*Arnica
-Dietary changes (consisting of adding wild fish/organic eggs/organic chicken back into my 100% unprocessed/organic plant-based diet)
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