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My Medical Purgatory
My 'Medical Purgatory'
This letter is for anyone interested in how the enormous complexities of Intervertebral Disk Disease and the current standard of care can leave a severe chronic pain patient stuck in 'medical purgatory':
Interesting enough, I find the Orthropedic medical field has also been in a state of purgatory in regarding Intervertebral Disk Repair.
With that being said, the reason I have combined my story with the medical information is mainly because it explains how a patient can get stuck without someone trying to blame it on some sort of self sabotage theory.
Medical purgatory is the term I use to describe my limbo of time spent in an excessive amount of pain and discomfort. I am 42 years old and in my adulthood I have been in pain for more years than I have not. But for the past 4 years I have felt the most pressure of being in some sort of medical purgatoty where my chronic health problems stem not only from the spinal diagnosis but also from the side effects of colorectal surgery. I feel that being in this state for longer than expected as a young mom with young children having gone through a cancer diagnosis has brought about additional stresses other than physical. Some Of your family , friends and society may think you are exaggerating your symptoms....you either don't look sick enough or you look too sick. I don't seek negative attention so I have and always will continue to hide my symptoms to the best of my ability to everyone except my medical team. So yes I'm gonna get highlights, spray tans and new cloths for as long as blood is running through me. Fortunately, I have the most important things surrounding me; loving, supportive Husband, kids, parents, brother, other family and friends. Last but not least a great medical team including my spine specialist, determatologist and primary care doctor!
Medical Persceptive:
Posterior lumbar fusion remains a major unmet need for which effective and safe alternatives have not been found and Fusion failure continues to pose a significant challenge to spine surgeons. Individuals with progressive, severe and debilitating back pain due to degenerating intervertebral discs with discogenic origin may not respond successfully to the current standard of care using conservative non-surgical treatments; for example; steroid injections, activity modification, rest and pain medications. Patients who continue to have chronic back pain the only other option is major back surgery involving spinal fusion, artificial disc replacement, or other surgical procedures. Avoidance of surgery and its complications is a major objective of any new treatment for degenerative disease of the spine.
Patient Persceptive
My low back pain is very complicated but summing it up can begin correlating my symptoms with the MRI. It shows L5-S1 with complete loss of disk height showing advanced DDD (degenerative disk disease) and the L4-L5 showing early signs of DDD. Both levels maybe be generating discogenic pain. The early DDD level most likely would qualify for the trial My doctor is conducting and the advanced level would most likely be too severe to quailfy from a research Persceptive. Unfortunately my BIGGEST problem looks like I will not qualify for this trial at any level because they need 5 years remmison from a cancer diagnosis and I have 4 years remission.
The reason this is such a BIG deal to me is that I wasn't sure an opportunity was gonna happen in my lifetime. More importantly, in my life when I'm still young enough when my twins still young enough that getting some form of my life back before im too old needs to happen sooner rather than later. What I mean by 'too old' is if the kids are already grown up and especially out of high school...then I obviously missed out on being the mom I wanted to be...and 'young enough' therefore means the opposite. They are growing up so quick already 7 yrs old. Now with that being said, obviously I would be grateful to get an opportunity like this for a better quality of life at any age!!!! There are so many great things that come with kids growing up like weddings, vacations grandchildren etc...etc..! Although, I would regret very much if my parents did'nt get an opportunity to see me get better! The good news is that there are products in the pipeline for both forms of DDD but the bad news is if I cannot get into a clinical trial....when will the products be available?....tick tock...is all I hear....right?
The first time My doctor mentioned stem cells was roughly 6 yrs ago and after the failed rhizotomy follow up visit. He said the majority of the pain is probally coming from the disk called discogenic pain which is the hardest to treat. He recommended I should stay with medication management, steroid injections, activity modification and rest . He mentioned that ideally the only good option is stem cells but there is so much red tape involved right now.
The second time I heard about the stem cells was roughly 1 year or so ago. My doctor mentioned he will be conducting a clinical trial involving stem cells and I am considered a candidate but would need to qualify. At first it was confusing but after doing a little digging I quickly learned I might not qualify for a clinical trial mainly because of the cancer. Most trial's qualifications needed to be 3-5 years in remission. Ugh that damn cancer ...I go between grateful to catching it early to pissed off because not only has it worsened my already compromised quality of life but it HALTED my focus and my health care people's focus on managing it. I was also concerned some medications may be working directly against my only treatment options I had to cope. Talk about throwing a wrench into something...Good God what a mess that was...needless to say...when I gained some weight and strength back from my colorectal cancer I took a year weaning off all medications. Roughly 6 months to wean and 6 months of conducting my own personal clinical trials. I did it for 2 main reasons 1) to see what was causing my GI issues and 2) to feel my 'real' pains. For the last 4 years I have been on a slow titration of medications taking into consideration all my health issues.
The third time I heard about the stem cell trial was just this past week. My Doctor said the trial was enrolling patients right now 2015. He seemed more confidant I would qualify. I felt shocked, excited and nervous that it was happening RIGHT NOW! A few days later I talked with one of the research coordinators and she emailed me a copy of the consent to help answer some questions. After reading the consent I became more excited than nervous. It didn't seem like the cancer was gonna be a problem. Surprisingly, I wasn't worried about the scary risks in the details and I wasn't even overly concerned about not qualifying. You go through such an extensive screening process before you find out if you qualify or not. Therefore, that alone was priceless to me and ironically I would pay any amount of money to get out of this medical purgatory.
Future medical ...
Mesoblast is aiming to develop a non-surgical biotherapeutic which provides long-term pain reduction and functional improvement. They are introducing two new products to evaluate in patients with intervertebral disc disease:
Early disc degeneration – intervertebral disc repair-where cells are locally administered to potentially repair intervertebral discs. Dr Tavel is conducting a phase 3 trial.
Advanced disc degeneration – spinal fusion
For patients whose spinal discs have degenerated too extensively for repair.
This letter is for anyone interested in how the enormous complexities of Intervertebral Disk Disease and the current standard of care can leave a severe chronic pain patient stuck in 'medical purgatory':
Interesting enough, I find the Orthropedic medical field has also been in a state of purgatory in regarding Intervertebral Disk Repair.
With that being said, the reason I have combined my story with the medical information is mainly because it explains how a patient can get stuck without someone trying to blame it on some sort of self sabotage theory.
Medical purgatory is the term I use to describe my limbo of time spent in an excessive amount of pain and discomfort. I am 42 years old and in my adulthood I have been in pain for more years than I have not. But for the past 4 years I have felt the most pressure of being in some sort of medical purgatoty where my chronic health problems stem not only from the spinal diagnosis but also from the side effects of colorectal surgery. I feel that being in this state for longer than expected as a young mom with young children having gone through a cancer diagnosis has brought about additional stresses other than physical. Some Of your family , friends and society may think you are exaggerating your symptoms....you either don't look sick enough or you look too sick. I don't seek negative attention so I have and always will continue to hide my symptoms to the best of my ability to everyone except my medical team. So yes I'm gonna get highlights, spray tans and new cloths for as long as blood is running through me. Fortunately, I have the most important things surrounding me; loving, supportive Husband, kids, parents, brother, other family and friends. Last but not least a great medical team including my spine specialist, determatologist and primary care doctor!
Medical Persceptive:
Posterior lumbar fusion remains a major unmet need for which effective and safe alternatives have not been found and Fusion failure continues to pose a significant challenge to spine surgeons. Individuals with progressive, severe and debilitating back pain due to degenerating intervertebral discs with discogenic origin may not respond successfully to the current standard of care using conservative non-surgical treatments; for example; steroid injections, activity modification, rest and pain medications. Patients who continue to have chronic back pain the only other option is major back surgery involving spinal fusion, artificial disc replacement, or other surgical procedures. Avoidance of surgery and its complications is a major objective of any new treatment for degenerative disease of the spine.
Patient Persceptive
My low back pain is very complicated but summing it up can begin correlating my symptoms with the MRI. It shows L5-S1 with complete loss of disk height showing advanced DDD (degenerative disk disease) and the L4-L5 showing early signs of DDD. Both levels maybe be generating discogenic pain. The early DDD level most likely would qualify for the trial My doctor is conducting and the advanced level would most likely be too severe to quailfy from a research Persceptive. Unfortunately my BIGGEST problem looks like I will not qualify for this trial at any level because they need 5 years remmison from a cancer diagnosis and I have 4 years remission.
The reason this is such a BIG deal to me is that I wasn't sure an opportunity was gonna happen in my lifetime. More importantly, in my life when I'm still young enough when my twins still young enough that getting some form of my life back before im too old needs to happen sooner rather than later. What I mean by 'too old' is if the kids are already grown up and especially out of high school...then I obviously missed out on being the mom I wanted to be...and 'young enough' therefore means the opposite. They are growing up so quick already 7 yrs old. Now with that being said, obviously I would be grateful to get an opportunity like this for a better quality of life at any age!!!! There are so many great things that come with kids growing up like weddings, vacations grandchildren etc...etc..! Although, I would regret very much if my parents did'nt get an opportunity to see me get better! The good news is that there are products in the pipeline for both forms of DDD but the bad news is if I cannot get into a clinical trial....when will the products be available?....tick tock...is all I hear....right?
The first time My doctor mentioned stem cells was roughly 6 yrs ago and after the failed rhizotomy follow up visit. He said the majority of the pain is probally coming from the disk called discogenic pain which is the hardest to treat. He recommended I should stay with medication management, steroid injections, activity modification and rest . He mentioned that ideally the only good option is stem cells but there is so much red tape involved right now.
The second time I heard about the stem cells was roughly 1 year or so ago. My doctor mentioned he will be conducting a clinical trial involving stem cells and I am considered a candidate but would need to qualify. At first it was confusing but after doing a little digging I quickly learned I might not qualify for a clinical trial mainly because of the cancer. Most trial's qualifications needed to be 3-5 years in remission. Ugh that damn cancer ...I go between grateful to catching it early to pissed off because not only has it worsened my already compromised quality of life but it HALTED my focus and my health care people's focus on managing it. I was also concerned some medications may be working directly against my only treatment options I had to cope. Talk about throwing a wrench into something...Good God what a mess that was...needless to say...when I gained some weight and strength back from my colorectal cancer I took a year weaning off all medications. Roughly 6 months to wean and 6 months of conducting my own personal clinical trials. I did it for 2 main reasons 1) to see what was causing my GI issues and 2) to feel my 'real' pains. For the last 4 years I have been on a slow titration of medications taking into consideration all my health issues.
The third time I heard about the stem cell trial was just this past week. My Doctor said the trial was enrolling patients right now 2015. He seemed more confidant I would qualify. I felt shocked, excited and nervous that it was happening RIGHT NOW! A few days later I talked with one of the research coordinators and she emailed me a copy of the consent to help answer some questions. After reading the consent I became more excited than nervous. It didn't seem like the cancer was gonna be a problem. Surprisingly, I wasn't worried about the scary risks in the details and I wasn't even overly concerned about not qualifying. You go through such an extensive screening process before you find out if you qualify or not. Therefore, that alone was priceless to me and ironically I would pay any amount of money to get out of this medical purgatory.
Future medical ...
Mesoblast is aiming to develop a non-surgical biotherapeutic which provides long-term pain reduction and functional improvement. They are introducing two new products to evaluate in patients with intervertebral disc disease:
Early disc degeneration – intervertebral disc repair-where cells are locally administered to potentially repair intervertebral discs. Dr Tavel is conducting a phase 3 trial.
Advanced disc degeneration – spinal fusion
For patients whose spinal discs have degenerated too extensively for repair.
Thank You!
I'm delighted my words were helpful. Now go build those great memories!
Humbly Yours.
~Tuck
I'm delighted my words were helpful. Now go build those great memories!
Humbly Yours.
~Tuck
I had to press pause on the response I'm working on because my hubby and I are taking the twins to the water park.
This is so ironically funny I felt its worth the mention...
My kids spent the night with my mom and dad and this morning my wonderful Husband tells me he is getting into the shower to go pick up the kids and take them to the water park. I WAS LIKE WHOA...pump your brakes...this is the first I've heard of 'these plans'...what do you mean...as I am fumbling over my words...he interjects that my mom texted him that the kids are soo excited you are taking them to water park...that he forgot he mentioned to the kids he might take them soon. I don't know how they misconstrued soon to right now but I DO KNOW and I thought my husband knew that this kinda thing needs to be "mentioned" to me!!! Needless to say...I try to never miss these kinda things (memory building things) with the kids UNLESS I am having ACUTE health issues! YALL KNOW There is a difference between acute and chronic health issues that we deal with.
Anyways long story short I have 30 minutes left to get ready...gotta go...post real response later.
It was TUCKAMORE'S response that helped give me the extra push I needed to keep up with my hubby's able-bodied impulsive decisions. BLESS HIS HEART and Bless his able-body! I mean that sincerlly not sarcastically!
This is so ironically funny I felt its worth the mention...
My kids spent the night with my mom and dad and this morning my wonderful Husband tells me he is getting into the shower to go pick up the kids and take them to the water park. I WAS LIKE WHOA...pump your brakes...this is the first I've heard of 'these plans'...what do you mean...as I am fumbling over my words...he interjects that my mom texted him that the kids are soo excited you are taking them to water park...that he forgot he mentioned to the kids he might take them soon. I don't know how they misconstrued soon to right now but I DO KNOW and I thought my husband knew that this kinda thing needs to be "mentioned" to me!!! Needless to say...I try to never miss these kinda things (memory building things) with the kids UNLESS I am having ACUTE health issues! YALL KNOW There is a difference between acute and chronic health issues that we deal with.
Anyways long story short I have 30 minutes left to get ready...gotta go...post real response later.
It was TUCKAMORE'S response that helped give me the extra push I needed to keep up with my hubby's able-bodied impulsive decisions. BLESS HIS HEART and Bless his able-body! I mean that sincerlly not sarcastically!
VERY IMPORTANT....I really want you and the other readers who may be interested to read my reply that I am in the process of composing.
I did post my letter in several different areas as we know our issues intertwine with MANY, MANY medical communities so SORRY in advance for any confusion that comes with double posting and the double comments that ensue.
Tuckamore was quoted saying ..."Nothing I say right now is going to make you feel better"...that is sooo FAR from what happened I WAS BLOWN away at how powerful her words affected me in a positive way! Ironically, I was nervous to post this letter and I AM SOO GLAD I DID!
I did post my letter in several different areas as we know our issues intertwine with MANY, MANY medical communities so SORRY in advance for any confusion that comes with double posting and the double comments that ensue.
Tuckamore was quoted saying ..."Nothing I say right now is going to make you feel better"...that is sooo FAR from what happened I WAS BLOWN away at how powerful her words affected me in a positive way! Ironically, I was nervous to post this letter and I AM SOO GLAD I DID!
Hello My Old Friend, I am so sorry to hear about your situation. I'm more than sorry that you do not qualify for the trials. My heart goes out to you.
As you may recall I don't have a DDD or any structural spinal condition - still I know what it's like to have your hopes dashed. Devastating! Nothing I say right now is going to make you feel better. I certainly can related to unrelenting chronic pain that robs me from an active life, steals my sleep and does it's best to interfere with personal relationships. I get it.
You said what was most important was getting your life back for your twins. I think you're already a great mom!! I hear it in everything your write. Although these trials may have helped alleviate your pain and allow you more mobility and activity it wouldn't have made you a better mom. You're already there!
My son was 10 when my world came to a halting crash. Prior to the "crash" I played softball and basketball with him, helped coach his Little League Team, cheered as he ran Track and and sat in the bleachers to proudly watched as he displayed his gifted athletic talent. That "crash" put an end to coaching his athletic abilities. Like you I felt I was no longer able to be that great mom, the kind of mom my star athletic needed.
He's now an adult, married with small children of his own. Recently his wife (she's a sweetie) told me she had a difficult role to fill for their children, "Super Mom!" She shared with me my son's words. He said he thought I did it all. He said even with severe pain I was always there for him, always loved and encouraged him, etc. (I didn't know he felt that way).
I'm not telling you this not to blow my own horn. I'm telling you what I've learned about children and their memories. It'll be important to your twins that you were always there for them, pain and all. They will recall your love and the values you instilled. They will be better ppl for watching you successfully deal with and to a great degree "conquer" Chronic Pain.... and don't forget your battle with cancer. You've survived!
So maybe you don't qualify for these trials, maybe you'll have to wait for another trial or maybe you'll have to wait for the results of these trials to be used in your condition(s). You're a fighter and a survivor. You'll make the best of it. I admire your strength.
No I'm not trying to make lite of your disappointment and you "Medical Purgatory." I truly do understand chronic pain. I so wish you would have qualified. I do have faith that there's answers for you in the future. Believe me no matter what your age, less pain will be welcome.
You're entitled to feel bad about the missed trials. I'm sorry. It's apparent that you had your heart set on them and are so disappointed. Feel free to vent or share any time. It's good for the soul. I'll look forward to hearing from you.
Gentle (((HUGS)))
~Tuck
As you may recall I don't have a DDD or any structural spinal condition - still I know what it's like to have your hopes dashed. Devastating! Nothing I say right now is going to make you feel better. I certainly can related to unrelenting chronic pain that robs me from an active life, steals my sleep and does it's best to interfere with personal relationships. I get it.
You said what was most important was getting your life back for your twins. I think you're already a great mom!! I hear it in everything your write. Although these trials may have helped alleviate your pain and allow you more mobility and activity it wouldn't have made you a better mom. You're already there!
My son was 10 when my world came to a halting crash. Prior to the "crash" I played softball and basketball with him, helped coach his Little League Team, cheered as he ran Track and and sat in the bleachers to proudly watched as he displayed his gifted athletic talent. That "crash" put an end to coaching his athletic abilities. Like you I felt I was no longer able to be that great mom, the kind of mom my star athletic needed.
He's now an adult, married with small children of his own. Recently his wife (she's a sweetie) told me she had a difficult role to fill for their children, "Super Mom!" She shared with me my son's words. He said he thought I did it all. He said even with severe pain I was always there for him, always loved and encouraged him, etc. (I didn't know he felt that way).
I'm not telling you this not to blow my own horn. I'm telling you what I've learned about children and their memories. It'll be important to your twins that you were always there for them, pain and all. They will recall your love and the values you instilled. They will be better ppl for watching you successfully deal with and to a great degree "conquer" Chronic Pain.... and don't forget your battle with cancer. You've survived!
So maybe you don't qualify for these trials, maybe you'll have to wait for another trial or maybe you'll have to wait for the results of these trials to be used in your condition(s). You're a fighter and a survivor. You'll make the best of it. I admire your strength.
No I'm not trying to make lite of your disappointment and you "Medical Purgatory." I truly do understand chronic pain. I so wish you would have qualified. I do have faith that there's answers for you in the future. Believe me no matter what your age, less pain will be welcome.
You're entitled to feel bad about the missed trials. I'm sorry. It's apparent that you had your heart set on them and are so disappointed. Feel free to vent or share any time. It's good for the soul. I'll look forward to hearing from you.
Gentle (((HUGS)))
~Tuck
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