*Disclaimer – I’ve been trying to write this post for a while now. Since it involves my chronic pain, physical therapist, money, the health care system in general, and emotions I will probably not due the topic justice. My hope is that this will help new chronic patients be prepared when they go to physical therapy specifically and better equipped mentally for the long bloody fight they have ahead of them. I am not trying to be controversial, annoying, combative, or mean in any way shape or form with this post. This is just my story, being told by me, so naturally it will be biased.
Physical Therapy as Defined by the state of Idaho- The “practice of physical therapy” means the exercise of the profession of physical therapy by a person who engages in examining, evaluating and testing individuals with mechanical, physiological and developmental impairments, functional limitations, and disability or other health and movement related conditions in order to determine a diagnosis for physical therapy and prognosis for physical therapy, plan of therapeutic intervention, and to assess the ongoing effects of intervention.
Practice includes alleviating impairments and functional limitations by designing, implementing and modifying therapeutic interventions that include, but are not limited to: therapeutic exercise; functional mobility training in self-care and in-home, community or work reintegration; manual therapy; assistive, adaptive, protective and supportive devices and equipment; bronchopulmonary hygiene; debridement and wound care; physical agents or modalities; mechanical and electrotherapeutic modalities; and patient related instruction; and to reduce the risk of injury, impairment, functional limitation, and disability, including the promotion and maintenance of fitness, health, and quality of life in all age populations. The practice of physical therapy shall not include the use of radiology, surgery or medical diagnosis of disease. Physical therapy may also include engaging in administration, consultation, testing, education and research as related to the practice.
Introduction & Background
Many, if not most arthritic patients will have to participate in the debate at some point in their medical careers of whether treatment is for maintenance or part of some specific diagnosis-related goal. Speaking from a recent experience, both terms are extremely difficult to define at best and since they involve a patient’s quality of life, are incredibly controversial for all parties involved. This conversation pretty much only has losers, even the select few making money in health care try to avoid this talk as long as possible. Let me explain.
I first meet Cassie after I ruptured a disk at C5/C6 in my neck. This was in 2005 and the surgery was my 3rd since 2003. Cassie was working at a local rehabilitation hospital that I had PT at for my previous 2 surgeries and for a skiing injury (non-surgical) in 2002 (I was a great customer; some might even call me a cash piñata). Right away I could tell that Cassie was something special. Not only was she professional, knowledgeable, and passionate about helping others, she was very easy to talk to and get along with.
Cassie’s positivity made recovering from this incredibly painful and awkward problem relatively easy (out of my 7 surgeries so far, the neck pain and discomfort I experienced during this time was by far the worse pain I’ve been in since the night of my rock climbing accident). I don’t recommend neck/disk issues for anyone thinking about trying it even if you have Cassie and my excellent surgeon (Dr. Tim Floyd) on your speed dial. To give you some perspective on how cool Cassie is, she even came to a checkup with Dr. Floyd with me once, how many therapists do you think would do something like that?
Once cleared by Dr. Floyd to resume playing I made it almost 2 years before I needed Cassie’s expertise again. This time it was for my left hip, which was resurfaced in Salt Lake City Utah.
Since hip resurfacing was a relative new operation in the United States at that point in time my doctor did not know of anyone locally with experience performing this particular surgery. However, he did know that Dr. Peters at the University of Utah was having great success with hip resurfacing with patients similar to me. My local doctor was recommending this particular operation because it has the advantage of keeping blood flowing to the joint during surgery, which would provide me 2 main benefits. First, it meant that the surgery wasn’t as invasive as a total hip replacement. Hip resurfacing also has the benefit of allowing a patient to be more active than with a total hip replacement, which was great since I am still young and trying to remain active.
Having had so much success and respect for Cassie after the neck surgery, there was no question that I wanted her to help me recover from hip surgery. Dr. Peters sent me back to Boise with PT benchmarks but it was up to Cassie’s to create a Plan of Care since she didn’t have access to my surgeon in Utah. As a side note, I would later learn that I was one of the first 5 people in Idaho to have hip resurfacing surgery. Considering the care I got from Cassie you would have thought that I was the 5 millionth person in the state to undergo this particular procedure.
About ¾ of the way through my hip resurfacing physical therapy I started to have a lot of pain and discomfort in my left knee. This was a complete surprise and shock, up until that point I had never had any trouble with that knee. My knee ended up going bad fairly quickly and it was determined that I needed surgery by that October. At that point I would have allowed Cassie to perform the surgery herself if she wanted, I was going to end up on her PT table anyway.
My knee surgery went good and I was cleared to ski by that winter. I was still incredibly weak from both surgeries so my skiing wasn’t great but at least I was on my skis making turns. I had the motivation and desire to get better after having 2 surgeries in one year but if it wasn’t for the hard work and time that Cassie put into me I’m not sure if I would have been able to ski that winter.
As is the case with most chronic patients, as one joint goes they all seem to follow. By the following summer, my right knee started to hurt. By that July I was limping constantly and by August I had to quit my job at the time (I was a campaign manager for a local Democrat who was in a heated race thanks to the 2008 Presidential Race) to have yet another surgery. I ended up having a Scope and Lateral Release on my right knee too but this surgery started to affect me mentally. I was just tired of having surgeries at this point so depression started to set in. This meant that Cassie now how a dual role, physical therapist and shrink. Being a good person along with a great physical therapist meant Cassie was more than happy to take on the dual roles.
At the risk of boring you the reader, Cassie got me through the right knee surgery with flying colors! Granted, I am one cool patient but I do believe in giving credit where credit is due. My joints seemed to calm down after this surgery and there were no more surgeries on the horizon at that point. Of course that was about to change…
While night skiing up at Bogus Basin I missed seeing some flagging that had been knocked down and covered by a light layer of snow. My ski tips got caught in the flagging and flipped me up in the air. Since I still protect my left arm because of the trauma from my rock-climbing fall I instinctively tucked my left arm into my chest to protect it. This meant that my left shoulder was exposed and took the full brunt of me flipping up into the air. Sure enough, I had dislocated my left shoulder.
Simply put, shoulder injuries blow! It is a joint you don’t want to mess with. Good news was that I already knew a great physical therapist that had a long and successful history of helping me recover from joint problems. We worked on that shoulder for a few months and were hoping I could avoid surgery. Turns out though that there was more damage in the shoulder than originally thought so surgery was unavoidable.
For those of you familiar with shoulder surgery I ended up having a Bankart Surgery. My bicep was detached from my shoulder and there was considerable soft tissue damage throughout the joint. Multiple screws and anchors had to be installed in my shoulder. Dr. Curtin was able to determine that a lot of the damage was old and couldn’t be directly attributed to my fall skiing. Whether it was due to the rock climbing accident or some arthritic disorder is still up for debate however.
I was having a terrible time mentally with this surgery. I was all spent physically and mentally. Once again Cassie took on this challenge and helped me get through it. She also had to deal with my neck while I was in PT for the shoulder because the brace the doctor put me in afterwards caused a lot of neck pain. As the kids say, I was a hott mess at this point in 2009.
I was scheduled for a 4:15pm appointment. My neck was hurting incredibly bad that day, it was bad enough that I probably shouldn’t have been driving (don’t tell the cops please). For reasons I don’t understand, the muscles in my neck get tight, and when I say tight, they feel like round balls of cement tight. This also causes me to get days, if not week-long headaches (I call everything headaches because our country uses migraines way to often so this is my way of protest-if you can cure your “migraine” with Advil and a can of Coke you have a headache and not a migraine). The only good news with severe neck pain is it made me forget about my lower back issues.
Needless to say I was looking forward to seeing Cassie that night. After talking to her about my current pain levels we went to work. The plan was to combine the Graston Technique with some deep tissue work. We had done this before with success so I was more than happy with the plan. While working on the neck is when Cassie began the conversation of whether it was a good idea or not to continue to see her.
Cassie and I had talked about this before. In April I made a deal with my doctor where I wanted 6 months to try and change my diet and exercise routine with the goal of improving my pain levels or else I would go to a pain management clinic. I’m getting to the point where my currents meds are only barely getting me through the day and my doctor doesn’t feel like he has the expertise to add anything else since I’m looking at long term use. Also, the severity of the headaches is concerning me more each day. Something needs to change quickly or else I won’t be able to work full-time or be active anymore.
I had told Cassie about this deal with my doctor so I was expecting everything to stay the same at least until my follow up appointment in October. Considering the pain my neck was causing the week leading up to the appointment, I certainly didn’t want anything to change that night. The last thing I needed was more stress.
We continued to debate the pros and cons of me continuing with physical therapy until my time was over. That is when Cassie told me that she could no longer see me. Her reasoning, as I understand it, is that since she can’t show improvement with me anymore without stretching the truth that her boss and billing people were asking why. According to her, by seeing me her license could be in jeopardy if my insurance company were to ever ask questions. It didn’t matter that the key element of chronic is that there is no cure; Cassie felt that since there was no ending benchmark that I could achieve that ethically it looked suspicious to continue to treat me.
To be perfectly honest, I am still pissed as hell towards Cassie, our health care system, insurance companies, billing people, politicians, the squirrels enjoying the sun outside my work window right now, etc. Since Idaho defines the practice of PT as “alleviating impairments and functional limitations by designing, implementing and modifying therapeutic interventions that include, but are not limited to: therapeutic exercise; functional mobility training in self-care and in-home, community or work reintegration; manual therapy; assistive, adaptive, protective and supportive devices and equipment…”, I don’t understand how any rational person could argue that I don’t need help given the amount of hardware and limitations I currently have.
To add to my anger and confusion is the fact that as of today, I have received no word, inclination, heads up, or smoke signal from my insurance company indicating they might have any sort of problem with me attending physical therapy. Also, I do not have a doctor that has shown any kind of hesitation about sending me to PT. Outside of a couple other chronic patient friends of mine, no medical professional has ever talked to me about switching to a chiropractor or massage therapist besides Cassie.
Now, without trying to sound like I’m bragging since there are so many others worse off than me, I do have some money in the bank and if I ever needed more, my parents have indicated a willingness to help pay for sessions. Each July, my insurance plan is reset to zero basically so there isn’t any long term therapy costs being stored anywhere that I know of. I have means, opportunity, and a desire to continue with PT so why should I have to stop?
Here is the kicker though. As I’ve now discovered, it is very easy to blur the line between friendship and physical therapist. Cassie helped, taught, fought for, educated, consoled, counseled, and most importantly relieved my pain. Almost all my experiences with her were positive with the only “bad” days coming from too much pain that usually required surgery to correct. All these are qualities that anyone, including me, would want in a physical therapist and a friend. The problem is that my pain prevents me from having both which isn’t fair to me or Cassie and is the reason why I’m so angry.
I now realize that in order for a physical therapist to be amazing, they almost have to become our friends in order to help us. That was certainly the case for me. Physical therapy meet that my surgeon had done his thing and it’s now up to me to do the work to improve with a therapist help. This also meant that I was at my most vulnerable since I was so mentally and physically weak. Any person that provided positivity to my life at that point would be someone I would want to develop a friendship with. Unfortunately, Cassie was just there to help me to heal; the friendship that developed was just a cool side effect of the my situation.
That’s not to say that a PT can’t be a good PT and not our friends. It’s more the circumstance that defines where the friendship/therapist relationship line gets blurred. For me that circumstance ended up being time. I spent so much time with Cassie because of my chronic pain that a friendship developed. She was there at my worse and got to celebrate with me at my best, just like any good friend would be.
A PT/patient relationship is unique in the medical world. It is the one professional that actually spends quality time with us, doesn’t make a snap conclusion in 15 minutes or less, and gets a front line view of our ups and downs. The problem is we are paying them to help us get better even though these are qualities we all want in our friends. I’m now sure that my anger is based in the fact that I forgot why Cassie initially entered my life, I needed her help in order to reduce pain.
Currently I’m not ready to apologize to Cassie for my rude behavior the last time I saw her even though technically she has done nothing wrong (at least according to Idaho law-see below). I am still angry and upset that she will not treat me anymore even though I don’t think I have a right to me. Our health care system isn’t necessarily equipped for someone in my condition but since Cassie is the face of that system she has to deal with my angry – right or wrong. It is unfortunate that after all these years that our relationship has to end like this and for that I am sorry!
I’m now at a complete lost as to what my next step should be in treating my pain issues because Cassie was the one I always turned too. All I do know is that I really don’t care about my own health right now but I will do just about anything if that means I can help someone else. I don’t know if I would recommend Cassie to a friend or stranger that needed PT but I would do whatever I could to help that individual have a successful PT experience. Also, I’m not sure if I will go back to Cassie whenever I have my next surgery. That call will have to be made at that time.
Long story short is please beware of the debate of maintenance versus a specific diagnosis treatment goal. Continually talk to your doctor, therapist, insurance company, and other patients about your condition and experiences. In the end you have to be your own advocate regardless of how helpful someone might be. However don’t, please don’t enter physical therapy with a bad attitude because you have read this! Physical therapy does help and should be apart of any arthritic patients plan of care I believe. Ironically if it weren’t for Cassie’s hard work and help I probably wouldn’t be here right trying to help you the patient even though my experience with Cassie is the reason for this story.
If you ever do find yourself in a similar situation please look into using your states Department of Insurance. In Idaho for example, I could file a complaint against Cassie and her employer at which point someone from the state would look into whether the billing people could use a different code to justify my physical therapy. The state can also force my insurance company to justify why they should not have to pay for PT if they were to ever deny a claim from me. Also, a patient can appeal their insurance company’s denial of a claim to the Director of the Department of Insurance who has the authority to force the insurance company to pay if there is a need. From what I understand, this process takes about 3 months. Basically there are options open to patients but you have to be willing to fight for yourself, which is something I am not willing to do right now.
Also, there are some new guidelines being considered because of President Obama’s healthcare law that could make physical therapy for maintenance a real possibility. There is a glimmer of hope for change for those of us that fall in the chronic category. Although it might not seem like it now, there is reason for hope for positive change in our healthcare system.