Public Service Announcement: This post is REALLY LONG! It's a chronicle of the last 4-1/2 years of my life on this journey of pain and trying to get rid of it. My prayer is that this is a help to someone out there who may be going through the same or similar situation(s) that I am and have been going through.
On December 5, 2016, I began this journey to health which I affectionately call "Operation HOPE" {Hold On Pain Ends} not because I wanted to, but rather because I HAD TO. I had to because at this point of my life I had two choice: Continue in pain; or do what I needed to do to get out of it. I'm choosing the latter.
The last 4+ years of my life has been filled with a lot pain, a few surgeries, many procedures and an exorbitant amount of frustration. When you look at me you wouldn't necessarily think that there's anything wrong with me. However, there is a lot beneath the surface. I've gotten very good at masking a lot of my emotions, fatigue and pain. There's been a lot hidden behind my pulled back shoulders and broad smile over the years, and even now.
I'm finally ready to step out in faith and be more vulnerable and transparent that I have been in the hope that there is some one out there walking the same road I am, and that my experiences can be an encouragement. So, this blog will serve as a reminder to me of where I've been. It will also be a memorial to my journey to wellness. And, I pray, that it will be an encouragement to those who are walking a similar hard road.
Here's my story:
It all started in the summer of 2012, when I started having lower back pain. This was nothing new to me. I've had many flair ups with my back stemming from a terrible car accident in 1995. I did everything I would normally do to get over a flair up...see my chiropractor, ice, stretching, PT, rest. But this time was different. By the fall of 2012, my chiropractor said that none of this was helping, and he thought I should see an orthopedic doctor. So, that's what I did. My doctor ordered an MRI. The results were hard to swallow. I had two very bad discs in my lower back...L4/L5 and L5/S1. The only solution was surgery.
Surgery was scheduled for May 30, 2013. I had a double fusion of L4/L5 and L5/S1. The bad discs were removed; and, at levels L4/L5 and L5/S1 they took off the bone that protrudes off the spine and used them in place of the discs. I have two cages {where those bones were placed}, four rods and six screws placed at those levels. I'm a little bionic now! LOL!
The first month of recovery was hard. But I remember being so happy to have the hope that the horrible back pain that I was in was going to go away.
By the fall of 2013, I started physical therapy. Only about a month into the therapy, I was in agonizing pain. My surgeon thought that it could be inflammation and aggravation from the surgery. So, he put me on an anti-inflammatory and took me off of physical therapy. The pain didn't get better; it got worse.
On February 10, 2014, I went for an MRI to determine why I was in so much pain. The results were "a large fluid collection (probably representing a post operative seroma) is present in the subcutaneous soft tissues posterior to the L2 through L5 posterior bony elements measuring 11.1 CM x 1.8 CM {which is approximately 4 inches x 3/4 inches}."
My response was basically, "What? Never heard of this. So, I looked it up. Here's what a seroma is: "A seroma is an accumulation of fluid in a tissue or organ that can occur after surgery, or sometimes after an injury such as blunt trauma. The fluid, called serum, leaks out of nearby damaged blood and lymphatic vessels. Cells are typically present in the fluid, which is normally clear."
Okay...now that I know what it is...what do we do to take care of it?"
My surgeon told me that it could be drained, and that he could do it right in the office with a needle. Okay...that sounded easy enough. Let's do it so that I can be out of this pain!
On February 14, 2014, I headed into see my surgeon to get rid of this seroma. Long story short, all his best efforts to drain it right there in the office didn't work. The seroma kept moving and he just couldn't get at it.
Okay...so now what? Yup, you guessed...minor surgery to get to it. Excellent!
On February 18, 2014, I headed into the hospital to drain this seroma. My surgeon drained {if I remember correctly} almost a cup of fluid from the seroma. He said that the capsule was thick and that was probably why he couldn't get through it in the office {as well as it moving around}. He put some medication/talc in there to insure that it would shrink down, close up, be absorbed into my body and never come back. Wonderful! Or so I thought.
After the initial recovery, I felt great through Easter of 2014. Had a great holiday weekend with my family. Probably the best I felt from the summer of 2012. However, the Monday after Easter, I woke up in horrible pain. I told myself that I did way too much over the weekend and just needed to rest and recoup. As that week went on, the pain and pressure in my back was all too familiar. I thought to myself, "If I didn't know better, I would think that seroma is back." Trying not to be paranoid or feel crazy, I tried to put that thought out of my mind. But, it just kept coming back. I called my surgeon and told him what I thought.
On May 1, 2014, I went for another MRI. The results were staggering. "There is a posterior fluid collection which could be post-op secondary to a seroma. This subcutaneous extending from the level of the mid to upper body of L2 to the top of S2. This measures 117 mm by 29.4 mm {which is 4.6 inches by 1.15 inches}."
When I heard this, I freaked out. FREAKED. OUT. I mean, this was JUST drained two months ago...and it was bigger than it was in February 2014. Okay...what do we do now?
My surgeon suggested that I see a interventional radiologist at the hospital to take care of this. The interventional radiologist would place a drain in seroma under x-ray so that he's sure he's exactly in the right place. Once the drain was in place, he would inject medication/talc through the tube in the hope to stop the fluid from collecting, and that the cavity would collapse on itself and basically glue together so then my body could absorb it.
This process took ALL summer of 2014. I would empty the drain every day and keep track of the fluid output. In the beginning, it was draining close to 1/4 to 1/2 cup a day. As the weeks went by, the fluid was less than that but was still draining. I was told that they were looking for the fluid to be 10 cc to 15 cc consistently before they would pull the drain. Well, on the fourth visit, when I was still draining a good 20 cc, they decided to pull the drain. I questioned this because of what the radiologist told me. He assured me that it was okay. He placed a final dose of medication/talc through the tube before pulling it, and sent me on my way.
I started feeling a little better. More sore and achy than anything. And, then by fall 2014 the all too familiar pain and pressure was back. So, I asked for another MRI.
On December 22, 2014, I went for the MRI. The findings were what I expected. "There is a re-demonstration of subcutaneous collection which is decreased in size when compared to the prior study and now measures 7.6 cm x 2 cm {which is 3 inches by 0.79 inches}. The wall of the collection is thick, however, is also unchanged." UNBELIEVABLE!! At least it was a little smaller than the last MRI {or so I thought}.
Okay...now what? Draining it wasn't an option...that didn't work. The only option was to surgically remove it.
On February 23, 2015, my orthopedic surgeon was assisted by a plastic surgeon to surgically remove this seroma. I was told before the surgery that they wouldn't have to open up my entire scar line from my original surgery. However, that wasn't the case. They wound up opening up the entire eight inch scar line because the seroma was HUGE! When they finally got it out, drained it and laid it out flat it measured six inches by just over three inches! The plastic surgeon's job was the reconstruct the area where the seroma laid in the hope that there wouldn't be space for another seroma to develop there again. He also placed two drains in my back; one on the right and one on the left; and, one was deeper placed than the other. This was in the hope to collect any and all fluid that might collect in my back after the surgery.
My recovery was long and hard. I had the drains in for about 8-10 weeks. During that time, I continued to have a lot of discomfort and just never felt "better". Once the drains were removed, the discomfort and pressure seemed a little better. But that only lasted for a month or so.
I saw my orthopedic doctor in July 2015, and told him if I didn't know better, I would think that seroma is back again. He sent me for an MRI.
I had that MRI on July 18, 2015. That MRI showed exactly what I though. There was "...a posterior subcutaneous soft tissue density likely secondary to a postop fluid collection measuring approximately 4.3 centimeters {1.7 inches} posterior to the L2-L3 extending to the level of L3-L4. This is smaller comparison to MRI of 12/22/2014." SERIOUSLY?!? Of course it's smaller than the one in 12/22/2014 because it's a BRAND. NEW. ONE.!!
I honestly cannot remember from July 2015 until I had another MRI in October 2015, which that the seroma grew a little bit more. It was, at that point, 2.44 inches by 1.65 inches. What I do know is that I lived with this pain day in and day out, and refused to have them drain it because I knew that it would just fill up again. I used pain medicine as needed (which was pretty often), and just hobbled my way through my days. I do remember saying in October that something had to be done, that I couldn't live in that pain much longer. My orthopedic surgeon suggested that I have a CT Mylogram to make sure that there wasn't anything further going on. I would have to wait until after the first of the year due to insurance reasons.
On February 23, 2016, I had the CT scan with contrast. This was a second CT scan of the year. I had one in January 2016, but because the seroma was there, the dye couldn't get to where it needed to. So, this time they drained the seroma that was there so that the dye could get to where it needed to in my back. I was so hoping that I would feel better from them draining the seroma, and that it would finally reverse itself. I did get some relief, but it was very short lived. Probably only a month or two.
By May/June 2016, I was continuing to deal with constant back pain, and pain down my left leg. I hobbled through the summer, and wound up calling my orthopedic doctor in September 2016 because I felt as though the seroma was back.
His course of treatment suggestion was to refer me to a pain management doctor for epidural injections, stating that everything looked fine from the CT scan and that this could possibly be residual nerve and muscle issues. I've had epidurals many times before, and they never did anything. I honestly I wasn't comfortable with what he suggested, but, I went ahead and made the appointment. After I made the appointment, I just was very unsettled. Deep in my gut I felt that the seroma was back. The pain and pressure was all too familiar. So, I called my surgeon's office back, and demanded an MRI before I saw the pain management doctor.
On October 1, 2016, I went for an MRI. Not only was the seroma back, but the MRI showed that I have a "new disc protrusion at L3-L4" {which is the level above my fusion}. Bonus! And, the seroma is a little BIGGER than the one that was surgically removed in February 2015. Another bonus! {Sarcasm definitely intended!}
If all this wasn't enough, beginning some time in 2015, I started experiencing full body pain. This pain increased during 2016. My mom has rheumatoid arthritis, so I thought I should go get checked out. I saw a rheumatologist in November 2016, and after an exam and a lot of bloodwork, I was diagnosed with fibromyalgia and rheumatoid arthritis.
At this point, I'm not willing to try any treatment that I've already done. No more try this medication and that medication. No more tests. No more draining the seroma. No more "let's wait and see". I'm done! At this point, I will do anything to be out of this pain...but it has to be something totally different...something I've never tried before. I know that the pain in my back is from the chronic, reoccurring seroma. I fully believe that there is a problem some where in my body, possibly with one of my systems {possibly my lymphatic system} that is causing these seromas to come back time and time again.
This thinking and attitude has brought me to where I am today. A friend at church shared with me that she was having terrible pain, and went to see a nutritionist. After I got the diagnoses from the rheumatologist, the fact that my surgeon wanted me to go to pain management and the realization that the seroma was back, I asked her for the information. It's time to try something totally different.
On December 2, 2016, I went to Natural Healthcare Center in Long Branch, NJ {http://naturalhealthcarecenter.com/). I met with Dr. Poodian. I brought him all my medical reports and recent bloodwork. He spent about an hour with me, asking questions and reviewing all the paperwork I brought him. He was sympathetic to all I had been going through, and honestly couldn't believe that I had been through so much in four plus years. He said that he strongly felt that they could help me, but that I needed to understand that it would be a lot of changes and commitment. I told him that I was ready to do whatever I needed to do to get out of this pain. For the first time in a long time, I felt like there was hope. Hope that this pain could and would end some time soon. The next step was then to see the nutritionist, Dr. Coetzee.
On December 6, 2016, my husband, Scott, and I went to see Dr. Coetzee. He, too, spent about an hour with us going over my medical records and bloodwork. He asked a lot of questions and gave us a lot of information. He felt strongly that he could help me, but told me that it wouldn't happen over night. He said that all this didn't happen to my body overnight, so this wouldn't be fixed overnight. He said that I could possibly start feeling a little better 2-3 months into the program, but realistically give him a year. That was a hard pill to swallow. Another year? Seriously? I had to remind myself that I said I'd do anything to be out of this pain...this was my anything. So, with that, I said, "okay"...and I jumped into this journey to wellness.
I honestly cannot believe that I've been seeking relief from back pain, and now full body pain, since the summer of 2012. That is so crazy to me. This journey has been so long and so hard. I honestly cannot remember what it feels like to be well and pain free. That saddens me. Even though the pain is still ever present, I have hope. Hope that this pain will one day end. For after all, it's right there in the word "H.O.P.E."...Hold On Pain Ends! I'm holding on with all I have, and I'm looking forward to the day when I can say "I have NO pain"! What a glorious day that will be!!
Surgery was scheduled for May 30, 2013. I had a double fusion of L4/L5 and L5/S1. The bad discs were removed; and, at levels L4/L5 and L5/S1 they took off the bone that protrudes off the spine and used them in place of the discs. I have two cages {where those bones were placed}, four rods and six screws placed at those levels. I'm a little bionic now! LOL!
The first month of recovery was hard. But I remember being so happy to have the hope that the horrible back pain that I was in was going to go away.
By the fall of 2013, I started physical therapy. Only about a month into the therapy, I was in agonizing pain. My surgeon thought that it could be inflammation and aggravation from the surgery. So, he put me on an anti-inflammatory and took me off of physical therapy. The pain didn't get better; it got worse.
On February 10, 2014, I went for an MRI to determine why I was in so much pain. The results were "a large fluid collection (probably representing a post operative seroma) is present in the subcutaneous soft tissues posterior to the L2 through L5 posterior bony elements measuring 11.1 CM x 1.8 CM {which is approximately 4 inches x 3/4 inches}."
My response was basically, "What? Never heard of this. So, I looked it up. Here's what a seroma is: "A seroma is an accumulation of fluid in a tissue or organ that can occur after surgery, or sometimes after an injury such as blunt trauma. The fluid, called serum, leaks out of nearby damaged blood and lymphatic vessels. Cells are typically present in the fluid, which is normally clear."
Okay...now that I know what it is...what do we do to take care of it?"
My surgeon told me that it could be drained, and that he could do it right in the office with a needle. Okay...that sounded easy enough. Let's do it so that I can be out of this pain!
On February 14, 2014, I headed into see my surgeon to get rid of this seroma. Long story short, all his best efforts to drain it right there in the office didn't work. The seroma kept moving and he just couldn't get at it.
Okay...so now what? Yup, you guessed...minor surgery to get to it. Excellent!
On February 18, 2014, I headed into the hospital to drain this seroma. My surgeon drained {if I remember correctly} almost a cup of fluid from the seroma. He said that the capsule was thick and that was probably why he couldn't get through it in the office {as well as it moving around}. He put some medication/talc in there to insure that it would shrink down, close up, be absorbed into my body and never come back. Wonderful! Or so I thought.
After the initial recovery, I felt great through Easter of 2014. Had a great holiday weekend with my family. Probably the best I felt from the summer of 2012. However, the Monday after Easter, I woke up in horrible pain. I told myself that I did way too much over the weekend and just needed to rest and recoup. As that week went on, the pain and pressure in my back was all too familiar. I thought to myself, "If I didn't know better, I would think that seroma is back." Trying not to be paranoid or feel crazy, I tried to put that thought out of my mind. But, it just kept coming back. I called my surgeon and told him what I thought.
On May 1, 2014, I went for another MRI. The results were staggering. "There is a posterior fluid collection which could be post-op secondary to a seroma. This subcutaneous extending from the level of the mid to upper body of L2 to the top of S2. This measures 117 mm by 29.4 mm {which is 4.6 inches by 1.15 inches}."
When I heard this, I freaked out. FREAKED. OUT. I mean, this was JUST drained two months ago...and it was bigger than it was in February 2014. Okay...what do we do now?
My surgeon suggested that I see a interventional radiologist at the hospital to take care of this. The interventional radiologist would place a drain in seroma under x-ray so that he's sure he's exactly in the right place. Once the drain was in place, he would inject medication/talc through the tube in the hope to stop the fluid from collecting, and that the cavity would collapse on itself and basically glue together so then my body could absorb it.
This process took ALL summer of 2014. I would empty the drain every day and keep track of the fluid output. In the beginning, it was draining close to 1/4 to 1/2 cup a day. As the weeks went by, the fluid was less than that but was still draining. I was told that they were looking for the fluid to be 10 cc to 15 cc consistently before they would pull the drain. Well, on the fourth visit, when I was still draining a good 20 cc, they decided to pull the drain. I questioned this because of what the radiologist told me. He assured me that it was okay. He placed a final dose of medication/talc through the tube before pulling it, and sent me on my way.
I started feeling a little better. More sore and achy than anything. And, then by fall 2014 the all too familiar pain and pressure was back. So, I asked for another MRI.
On December 22, 2014, I went for the MRI. The findings were what I expected. "There is a re-demonstration of subcutaneous collection which is decreased in size when compared to the prior study and now measures 7.6 cm x 2 cm {which is 3 inches by 0.79 inches}. The wall of the collection is thick, however, is also unchanged." UNBELIEVABLE!! At least it was a little smaller than the last MRI {or so I thought}.
Okay...now what? Draining it wasn't an option...that didn't work. The only option was to surgically remove it.
On February 23, 2015, my orthopedic surgeon was assisted by a plastic surgeon to surgically remove this seroma. I was told before the surgery that they wouldn't have to open up my entire scar line from my original surgery. However, that wasn't the case. They wound up opening up the entire eight inch scar line because the seroma was HUGE! When they finally got it out, drained it and laid it out flat it measured six inches by just over three inches! The plastic surgeon's job was the reconstruct the area where the seroma laid in the hope that there wouldn't be space for another seroma to develop there again. He also placed two drains in my back; one on the right and one on the left; and, one was deeper placed than the other. This was in the hope to collect any and all fluid that might collect in my back after the surgery.
My recovery was long and hard. I had the drains in for about 8-10 weeks. During that time, I continued to have a lot of discomfort and just never felt "better". Once the drains were removed, the discomfort and pressure seemed a little better. But that only lasted for a month or so.
I saw my orthopedic doctor in July 2015, and told him if I didn't know better, I would think that seroma is back again. He sent me for an MRI.
I had that MRI on July 18, 2015. That MRI showed exactly what I though. There was "...a posterior subcutaneous soft tissue density likely secondary to a postop fluid collection measuring approximately 4.3 centimeters {1.7 inches} posterior to the L2-L3 extending to the level of L3-L4. This is smaller comparison to MRI of 12/22/2014." SERIOUSLY?!? Of course it's smaller than the one in 12/22/2014 because it's a BRAND. NEW. ONE.!!
I honestly cannot remember from July 2015 until I had another MRI in October 2015, which that the seroma grew a little bit more. It was, at that point, 2.44 inches by 1.65 inches. What I do know is that I lived with this pain day in and day out, and refused to have them drain it because I knew that it would just fill up again. I used pain medicine as needed (which was pretty often), and just hobbled my way through my days. I do remember saying in October that something had to be done, that I couldn't live in that pain much longer. My orthopedic surgeon suggested that I have a CT Mylogram to make sure that there wasn't anything further going on. I would have to wait until after the first of the year due to insurance reasons.
On February 23, 2016, I had the CT scan with contrast. This was a second CT scan of the year. I had one in January 2016, but because the seroma was there, the dye couldn't get to where it needed to. So, this time they drained the seroma that was there so that the dye could get to where it needed to in my back. I was so hoping that I would feel better from them draining the seroma, and that it would finally reverse itself. I did get some relief, but it was very short lived. Probably only a month or two.
By May/June 2016, I was continuing to deal with constant back pain, and pain down my left leg. I hobbled through the summer, and wound up calling my orthopedic doctor in September 2016 because I felt as though the seroma was back.
His course of treatment suggestion was to refer me to a pain management doctor for epidural injections, stating that everything looked fine from the CT scan and that this could possibly be residual nerve and muscle issues. I've had epidurals many times before, and they never did anything. I honestly I wasn't comfortable with what he suggested, but, I went ahead and made the appointment. After I made the appointment, I just was very unsettled. Deep in my gut I felt that the seroma was back. The pain and pressure was all too familiar. So, I called my surgeon's office back, and demanded an MRI before I saw the pain management doctor.
On October 1, 2016, I went for an MRI. Not only was the seroma back, but the MRI showed that I have a "new disc protrusion at L3-L4" {which is the level above my fusion}. Bonus! And, the seroma is a little BIGGER than the one that was surgically removed in February 2015. Another bonus! {Sarcasm definitely intended!}
If all this wasn't enough, beginning some time in 2015, I started experiencing full body pain. This pain increased during 2016. My mom has rheumatoid arthritis, so I thought I should go get checked out. I saw a rheumatologist in November 2016, and after an exam and a lot of bloodwork, I was diagnosed with fibromyalgia and rheumatoid arthritis.
At this point, I'm not willing to try any treatment that I've already done. No more try this medication and that medication. No more tests. No more draining the seroma. No more "let's wait and see". I'm done! At this point, I will do anything to be out of this pain...but it has to be something totally different...something I've never tried before. I know that the pain in my back is from the chronic, reoccurring seroma. I fully believe that there is a problem some where in my body, possibly with one of my systems {possibly my lymphatic system} that is causing these seromas to come back time and time again.
This thinking and attitude has brought me to where I am today. A friend at church shared with me that she was having terrible pain, and went to see a nutritionist. After I got the diagnoses from the rheumatologist, the fact that my surgeon wanted me to go to pain management and the realization that the seroma was back, I asked her for the information. It's time to try something totally different.
On December 2, 2016, I went to Natural Healthcare Center in Long Branch, NJ {http://naturalhealthcarecenter.com/). I met with Dr. Poodian. I brought him all my medical reports and recent bloodwork. He spent about an hour with me, asking questions and reviewing all the paperwork I brought him. He was sympathetic to all I had been going through, and honestly couldn't believe that I had been through so much in four plus years. He said that he strongly felt that they could help me, but that I needed to understand that it would be a lot of changes and commitment. I told him that I was ready to do whatever I needed to do to get out of this pain. For the first time in a long time, I felt like there was hope. Hope that this pain could and would end some time soon. The next step was then to see the nutritionist, Dr. Coetzee.
On December 6, 2016, my husband, Scott, and I went to see Dr. Coetzee. He, too, spent about an hour with us going over my medical records and bloodwork. He asked a lot of questions and gave us a lot of information. He felt strongly that he could help me, but told me that it wouldn't happen over night. He said that all this didn't happen to my body overnight, so this wouldn't be fixed overnight. He said that I could possibly start feeling a little better 2-3 months into the program, but realistically give him a year. That was a hard pill to swallow. Another year? Seriously? I had to remind myself that I said I'd do anything to be out of this pain...this was my anything. So, with that, I said, "okay"...and I jumped into this journey to wellness.
I honestly cannot believe that I've been seeking relief from back pain, and now full body pain, since the summer of 2012. That is so crazy to me. This journey has been so long and so hard. I honestly cannot remember what it feels like to be well and pain free. That saddens me. Even though the pain is still ever present, I have hope. Hope that this pain will one day end. For after all, it's right there in the word "H.O.P.E."...Hold On Pain Ends! I'm holding on with all I have, and I'm looking forward to the day when I can say "I have NO pain"! What a glorious day that will be!!
From Cherie C.: What a journey, Lisa! Praying that all that pain will go away soon!
ReplyDeleteFrom Beth S.: One day at a time. I told you the other day, you can do this. So many people are behind you....it's Lisa time!! Love you lots ♡
ReplyDelete