The "Pain" Patient

An open letter to the President and Members of Congress...

There have been growing discussions about the "opioid" crisis in the United States resulting in even stricter guidelines for those who prescribe and take opioid medications. The CDC, FDA and DEA believe that their usage does not outweigh the potential risks, not to mention the increasing numbers of addiction issues and overdoses every year. However, making it harder to access these crucial medications are the last resort for many people. People who use opiates illegally will continue to do so, making it that much harder for current physicians and patients who do utilize these medications appropriately.

As a pain patient, there is already a large stigma against us regards to receiving care for pain
management. We are often viewed as "drug seekers" or "addicted" because we need opioids to control such severe pain. I am only 28 years old, but have endured 24 surgeries with a majority of those being in the last 5-6 years alone. I am currently facing 1-2 more surgeries in the near future. I need narcotic medication to control severe pain and to allow me to even function on a limited level. I have a rare, connective tissue disorder that effects everything from dislocating joints, poor healing, frequent and severe infections, nerve damage and even heart valve leaks to name just some of what I endure. Narcotic medication is only part of my medical care. I have been and am a continuous patient in physical therapy trying to strengthen and maintain my body as much as one can as their body breaks down around them. I also have a spinal cord stimulator that helps in managing a chronic and severe pain condition called Reflex Sympathetic Dystrophy or Chronic Regional Pain Syndrome, where even the lightest touch can make you feel as if your body was lit on fire. I take nerve medication, undergo injections, take NSAIDs and am a compliant patient in regards to my medical care. But, I need narcotic medications to allow me to heal from surgery, continue my therapy and be able to function, even in a limited context.

Reading through the new guidelines the CDC proposed in regards to limiting opioid usage broke my heart. I do believe those with addiction issues need help and a great emphasis on mental health needs to be made, but not in the place of pain patient needs. Physician education should also be a larger role than what was advised in caring for patients with chronic needs. As a current pain patient, I am subject to random drug screens (which I have to pay for), random pill counts, one pharmacy to fill my prescriptions through and must keep my doctor informed of ER visits or any other doctor, such as my orthopedic surgeons, who may write a prescription for narcotic medication. I have been a fully compliant patient and have not broken or abused the already stringent process needed so that I may receive pain treatment. Adding more guidelines doesn't necessarily solve the overall issue, but it will make the job for the physicians who still write opioid prescriptions harder and it will cause a greater burden to patients who already have to fight for everything. For patients like myself, a trip to the dentist is even a larger ordeal than most because my genetic condition causes an issue with local anesthetics where it makes them ineffective or you need a larger dose than recommended for even temporary relief. It makes surgeries and already difficult treatment that much harder. Adding more roadblocks is an undue burden we should not have to carry.

Chronic pain patients are much stronger than the public gives us credit. We are able to smile through the pain, when all we really want to do is cry. Despite being at a level of pain which most other people would curl in a ball and quit, we have to keep pushing. We do not "want" to be like this and if we could trade receiving pain medication for the condition that causes the pain, we would without hesitation. When considering how to help those with addiction issues, or any mental health issue, please do not also forget about those of us who need these medications as well...

LPAO 8 Dec. 2015

I am currently 16 weeks post-op from my left hip surgery Dec. 8th, 2015. My left hip surgery included an open surgical dislocation entirely through an anterior approach, labral reconstruction with allograft, acetabuloplasty, femoral osteochondroplasty and LPAO. It made for a long day and I was scheduled for about 6 hours. We where concerned with pain management due to the EDS and CRPS. The EDS makes locals and blocks ineffective or wear off much quicker than in the average patient. The docs decided on a lumbar plexus block, spinal block, iliacafascia block with On-Q pump and local anesthetic for the initial first few days post-op. We later learned that the On-Q pump catheter was kinked for the first 2 days in the hip dressing which contributed to the inability to control post-op pain. Dr. Swann even called me the night before surgery to check on me and answer any last minute questions that I had.

The OR was a very busy place between Dr. Swann, the anesthesiologists, nurses, tech reps, etc. It made the process more nerve-wracking then I expected. Originally, the pre-op imaging showed only some labral fraying, but after Dr. Swann was in the joint and the labrum, we where very glad that we planned to have a graft as a back-up because it was completely destroyed. Had we waited much longer for surgery, the left hip would not have been able to be salvaged. Swann was able to reconstruct my labrum, smooth out the femoral head and socket as well as correct my LCEA to 35 degrees. It was a long surgery, but everything was able to be accomplished.

I spent 5 nights in the hospital. Dr. Swann came by every morning to check-in and if he didn't stop in again in the evening he would call or text to check in on me. He placed a woundvac on my incision because of my history, but prior to discharge the wound care nurse decided to change the bandage without consulting with Dr. Swann. Not only was he furious for changing his dressing without notification, but the nurse ended up putting on a dressing that was contraindicated. Dr. Swann advocated for me and made sure the nurse was reprimanded for her behavior. The dressing ended up excoriating my skin leaving it scarred and feeling like my skin had been ripped off. Swann even made a house call that weekend because I was having so many issues with the woundvac and dressing and he didn't want it to wait till the week.

It didn't take too long after the woundvac was removed that my wound re-opened. Not the first time it happened, but I needed up with a different woundvac and a home wound care nurse to help close the incision. I ended up with severe nausea and feeling miserable for the initial weeks post-op. I was so miserable that my protein levels dropped dangerously low. We where unaware that the levels where that low until the wound continued to  re-open and the pain increased. By nearly 4 weeks post-op the wound dehiscence was worsening despite the woundvac, I was miserable with increased pain and felt so sick.

Dr. Swann re-admitted me to the hospital on Jan. 3rd, 2016. I had a hip aspiration done the following day with Interventional Radiology to check for an infection based on my symptoms and history with  infections. After the hip aspiration I went to the OR for Dr. Swann to clean out and re-close my incision. That is when I found out about the low protein levels and had to really increase my daily protein intake or the healing process would continue to be severely compromised. I was 4 weeks post-op and there was no sign of bone growth up to that point. The day after surgery I was sent back down to Interventional Radiology to have a PICC line placed. Although my cultures for infection came back negative, my protein levels where so critically low that I had no immune system and would need strong antibiotics (Vancomycin) to prevent any serious infection as I further recovered. The PICC line and IV antibiotics would be used for at least 4 weeks along with the woundvac to make sure my incision healed and prevent infection or further complications. I spent 4 nights in the hospital before being discharged to go home.

At my 6 week/2 week post-op appointment I was doing a lot better and the x-rays showed some progress in healing with some actual bone growth. I had even lost weight since my LPAO. Those would not be the only road blocks that I would face during recovery. By 10 weeks post-op, although there was a little more bone growth I had developed an inferior pubis ramus fracture. By 12 weeks post-op, the bone growth didn't seem to be progressing as well and what was a stress fracture was quite a visible fracture on x-ray. Dr. Swann prescribed a medication called Forteo that is used to treat osteoporosis, but had been studied and shown good results in healing fractures and non-unions. Unfortunately, insurance denied a prior authorization and 2 appeals by Swann and we are not able to pay the $4,900/mo. for 2 months that I would need the medication. During my 14 week follow-up we did further x-rays that showed minimal healing progress. I would remain on both crutches till 22 weeks post-op, increase my Vitamin D intake and continue to fight insurance for coverage of Forteo. If healing continued with minimal progress, then Dr. Swann would want to further discuss adding additional hardware to stabilize the fractures and promote more healing. Also, because it took 15 weeks for my incision to completely heal, he would not want to re-open a large incision due to my poor healing and would use a guided wire to percutaneously place more hardware to stabilize the fracture sites. To date, I have lost 30lbs since my LPAO. I will also see Dr. Swann again in 2 weeks to check on my bone healing progress. Fingers crossed for significant improvement!!!