|Donnie Thibodaux's Survivor Story|
Donnie is a survivor of NF. We went through 4 weeks and 4 doctors of misdiagnoses
before finally seeing a doctor that recognized the actual problem. Here
is our story of how NF has changed our lives.
Doctor # 1, Misdiagnosis # 1.
Doctor # 2, Misdiagnosis #2.
Within less than a week, Donnie’s appetite waned to nearly nothing, he had chills and low fevers off and on, occasional vomiting and was staying in bed nearly 24 hours a day. The mass on the side of his knee became larger and the side of his left thigh was swelling. He explained the pain as a deep ache, kind of how an irritating toothache feels, constantly gnawing away with more and more intensity.
Doctor # 3, Misdiagnosis #3.
Before we left the doctor’s office, I shared a concern of some of our friends. Several of our friends had mentioned the possibility of a blood clot. I told the doctor, I know I’m not a professional and neither are our friends, but could this be a possibility? He had Donnie stand up felt up and down his leg with his hands, said “the blood flow is good, nope, no blood clot here, it’s a torn meniscus.” We were told he needed arthroscopic surgery to have it corrected, otherwise he would just have to live with the pain. We do not have insurance because Donnie has diabetes, his employer does not have a group health plan, I do not work and so I do not have insurance to cover him under, and individual health insurance providers have refused him. The quote for surgery we were given was astronomical to our ears. We were severely distressed and did not know what to do next, because there was no way we could afford surgery.
Doctor # 4, A Step in the Right Direction.
When we walked into this 4th doctor’s office, 4 weeks after Donnie’s pain began, we received our first glimmer of hope. The doctor did not agree with Doctors’ 1, 2 and 3 diagnoses. He believed all Donnie’s pain, symptoms and presenting was indicative of a possible hematoma. He scheduled an MRI for us for the following day, Friday, June 25th.
The MRI was very painful for Donnie and the evening after the MRI his leg began presenting discoloration for the first time. Before this point it was swelling back and forth across his thigh and the mass was becoming larger and harder. After the MRI, his leg below his left knee began hurting on the back of the calf and small knots started forming behind his calf as well as swelling. The doctor called back on Tuesday, June 29th with the MRI results, confirming the suspected hematoma, a lot of fluid build up and suggested Donnie take med’s to break down the hematoma and eventually clear up the swelling, etc. in his leg. Donnie’s pain once again was considerably worse since the last appointment and so we asked to see him again.
Two days later, on Thursday, July 1st, we had our 2nd appointment with this doctor. When the doctor saw the worsened condition of Donnie’s leg, discoloration, swelling, new knots, etc., he said “there’s nothing more I can do to help you. You need to see a surgeon.” and referred us to a surgeon for the following day.
Doctor # 5, Finally Some Answers.
On Saturday, July 3rd, Dr. Wood saved my husband’s life. After surgery, he told me it would have been a matter of just a couple days and he would have died had he not had surgery.
Over the course of the next 6 weeks Donnie had 7 surgeries total. Five to dibride his left leg from just below his groin to his lower calf, one to perform skin grafts from his right leg to his left leg. And…the 7th surgery was to dibride his right thigh. A few days before he was to come home, Donnie’s right thigh began hurting like his left thigh had begun. The day he was to go home, the doctor ordered a CAT scan of his right leg and found another abscess. We have no idea how it got to his right leg… it didn’t spread from one leg to the other, just showed up as if a “mirror image”. They caught it before it became as bad as his left leg, and sent him home about a week ½ later.
We still have no idea what initiated the NF. No open wounds to start, no scratches, no cuts, no recent surgeries before the onset of the NF. He has had to learn to walk again, and of course has a long way to go in recovering completely, but can you ever recover completely from NF? The mental and emotional traumas that he went through were nearly as excruciating as the physical traumas of NF. Altogether NF has changed our lives unexpectedly through the worse for the better. Life has become more precious, priorities have changed, and we have changed. This has been such an awakening experience. We are just so thankful that Donnie is a survivor. I still have a husband, my little boy still has a daddy and my little girl to be born in just a couple of months will be able to know her daddy. Thank you God. Thank you God. Thank you God!
Please note: The following linked images are very graphic and may be upsetting.
Springdale, Arkansas USA
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September 8, 2004