Whit's Amputation Revision #Whithasgrit
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As you all know, I underwent an above knee amputation of my right leg last April. Things seemed as if they were going great at first, but as we moved into the fall the wheels began to fall off the bus so to speak. I began complaining of pain well above the norm of living with Complex Regional Pain Syndrome (which is already ranked as the most painful condition known to mankind). The pain was worsening with each passing day, and I kept reaching out to my doctors expressing that I felt something else was wrong. I kept reaching out and kept reaching out, and around Christmas time the pain became unbearable.
After the holidays I landed back in the surgeon's office and had to beg for an MRI to be performed. Just as I had thought, the MRI came back showing a significant neuroma of the amputated limb. This neuroma was the cause for the intense phantom limb pain and residual limb pain that was in addition to the already unbearable pain of Complex Regional Pain Syndrome (CRPS). No wonder I was in such a tremendous amount of pain that is more than difficult to put words to. My surgeon began the process of finding a surgeon that was capable of helping me due to my complicated medical history also including: a Chiari Malformation, Ehlers Danlos Syndrome, and Multiple Sclerosis on top of the Complex Regional Pain Syndrome. The surgery called Targeted Muscle Reinnervation (TMR) is a very skilled surgery performed by very skilled surgeons, especially with all of my underlying conditions.
ONE surgeon was found anywhere near me, and really in the entire state of Texas, that was capable of helping me with this TMR surgery. The nerves were just cut and left hanging kind of like cutting the wires in a power line. They have been trying to still fire and do their job, but have nowhere to go. This surgery reroutes my nerves into my muscles so that they have a healthy place to grow and begin working again in a healthy way. So began a month long battle with my insurance company because the only doctor that could help me, was out of network with my insurance policy. I was blessed to have the Rare Disease Community on Twitter, in addition to an unbelievably kind woman within BCBS, come alongside me in the fight for my life with my insurance company. We finally got the insurance company to cover the surgeon in network and I was able to go see him on February 19th. It was EVERY BIT worth the fight with the insurance company because this surgeon was everything I could have hoped for and more. We discussed the proper plan of attack and decided we would do this in 3 different surgeries to keep my body as calm as possible during each procedure so not to flare the CRPS. LEAVING HIS OFFICE WAS THE FIRST GLIMMER OF HOPE I HAD IN SUCH A LONG TIME THAT I WASN'T GOING TO LIVE IN SUCH AN IMMENSE AND UNREAL AMOUNT OF PAIN FOREVER. Surgery was scheduled for April 6th, and I could not wait for that day to get here!
About a week ago I got a call from the Houston Methodist Hospital where surgery was to be performed. The girl informed me that the hospital was out of network, and I would need $19,758 to move forward. I have been told by every manager in the facility that there are no payment plans available because of my HMO insurance. I immediately thought that this was just another fluke and the insurance company would see the need to cover the hospital in network as well since that's the only hospital this surgeon operates out of. Well, I have found out that I was very wrong in thinking this. I now have to come up with $19,758 in order to proceed with surgery.
Just when I thought everything was going to work out, and I was one day closer to fixing this incomprehensible amount of pain, I learned that I was so very wrong. I tell people often that the way I get through every day living with so many diseases/disorders are my 3 f's: my faith, my family, and my friends. My Bible and devotionals keep reminding me that I must keep faith that God will work all things for good as HE sees fit. That I must be patient and wait with a trustworthy heart. So I am placing my trust in HIM, and praying that we can make a literal miracle happen so that I can proceed with this surgery that I needed a month ago!
I have taken blow, after blow, after blow, after blow recently. I am having all kinds of medical issues arise because the MS was not found early enough. My Chiari Malformation has been presenting all kinds of issues since the fall season. All the while I am living at a level 7, 8, or 9 on the pain scale. I am doing my best to continue working and be a wife and a mom. I feel as though I am holding on for dear life right now and I'm losing grip with each passing moment. I truly need a miracle. I heard, from the mouth of a very sweet child last Friday, that she knew I was going to be okay. So maybe, just maybe, God is about to show up and show off in a big way for me.
If you all know me on a personal level, you know that I don't very much like asking for help in any way form or fashion. But here I am, standing in all my vulnerability, and asking for help. I appreciate any dollar amount that you can spare as it all adds up at the end, and for you sharing with anyone and everyone you know might be willing to help. I am grateful for the incredible group of people that I have around me, loving on me. I am grateful for you. Thank you from the bottom of my heart.
(The pics below show the estimate from the hospital and pictures of what "leglet" (yes, I have named my residual limb!) is looking like these days. I promise it hurts about a thousand times worse than it looks.)
After the holidays I landed back in the surgeon's office and had to beg for an MRI to be performed. Just as I had thought, the MRI came back showing a significant neuroma of the amputated limb. This neuroma was the cause for the intense phantom limb pain and residual limb pain that was in addition to the already unbearable pain of Complex Regional Pain Syndrome (CRPS). No wonder I was in such a tremendous amount of pain that is more than difficult to put words to. My surgeon began the process of finding a surgeon that was capable of helping me due to my complicated medical history also including: a Chiari Malformation, Ehlers Danlos Syndrome, and Multiple Sclerosis on top of the Complex Regional Pain Syndrome. The surgery called Targeted Muscle Reinnervation (TMR) is a very skilled surgery performed by very skilled surgeons, especially with all of my underlying conditions.
ONE surgeon was found anywhere near me, and really in the entire state of Texas, that was capable of helping me with this TMR surgery. The nerves were just cut and left hanging kind of like cutting the wires in a power line. They have been trying to still fire and do their job, but have nowhere to go. This surgery reroutes my nerves into my muscles so that they have a healthy place to grow and begin working again in a healthy way. So began a month long battle with my insurance company because the only doctor that could help me, was out of network with my insurance policy. I was blessed to have the Rare Disease Community on Twitter, in addition to an unbelievably kind woman within BCBS, come alongside me in the fight for my life with my insurance company. We finally got the insurance company to cover the surgeon in network and I was able to go see him on February 19th. It was EVERY BIT worth the fight with the insurance company because this surgeon was everything I could have hoped for and more. We discussed the proper plan of attack and decided we would do this in 3 different surgeries to keep my body as calm as possible during each procedure so not to flare the CRPS. LEAVING HIS OFFICE WAS THE FIRST GLIMMER OF HOPE I HAD IN SUCH A LONG TIME THAT I WASN'T GOING TO LIVE IN SUCH AN IMMENSE AND UNREAL AMOUNT OF PAIN FOREVER. Surgery was scheduled for April 6th, and I could not wait for that day to get here!
About a week ago I got a call from the Houston Methodist Hospital where surgery was to be performed. The girl informed me that the hospital was out of network, and I would need $19,758 to move forward. I have been told by every manager in the facility that there are no payment plans available because of my HMO insurance. I immediately thought that this was just another fluke and the insurance company would see the need to cover the hospital in network as well since that's the only hospital this surgeon operates out of. Well, I have found out that I was very wrong in thinking this. I now have to come up with $19,758 in order to proceed with surgery.
Just when I thought everything was going to work out, and I was one day closer to fixing this incomprehensible amount of pain, I learned that I was so very wrong. I tell people often that the way I get through every day living with so many diseases/disorders are my 3 f's: my faith, my family, and my friends. My Bible and devotionals keep reminding me that I must keep faith that God will work all things for good as HE sees fit. That I must be patient and wait with a trustworthy heart. So I am placing my trust in HIM, and praying that we can make a literal miracle happen so that I can proceed with this surgery that I needed a month ago!
I have taken blow, after blow, after blow, after blow recently. I am having all kinds of medical issues arise because the MS was not found early enough. My Chiari Malformation has been presenting all kinds of issues since the fall season. All the while I am living at a level 7, 8, or 9 on the pain scale. I am doing my best to continue working and be a wife and a mom. I feel as though I am holding on for dear life right now and I'm losing grip with each passing moment. I truly need a miracle. I heard, from the mouth of a very sweet child last Friday, that she knew I was going to be okay. So maybe, just maybe, God is about to show up and show off in a big way for me.
If you all know me on a personal level, you know that I don't very much like asking for help in any way form or fashion. But here I am, standing in all my vulnerability, and asking for help. I appreciate any dollar amount that you can spare as it all adds up at the end, and for you sharing with anyone and everyone you know might be willing to help. I am grateful for the incredible group of people that I have around me, loving on me. I am grateful for you. Thank you from the bottom of my heart.
(The pics below show the estimate from the hospital and pictures of what "leglet" (yes, I have named my residual limb!) is looking like these days. I promise it hurts about a thousand times worse than it looks.)
Organizer
Whitney Lavender
Organizer
Caldwell, TX