Pain Clinic #1

I went to the pain clinic on Friday.

I can say that so casually now.

It has become a necessary part of my life. The pain specialists make sure I’m getting the right level of medications for pain management. They assess my condition to determine what procedures might help to reduce my pain. They are really good at communicating technical details in a way that’s easy to understand and setting my expectations. Most importantly, they quieted the doubters (the insurance company, my family doctor/primary care physician, and other specialists) who questioned, for different reasons, why and how it was possible that I could be in so much pain based on my initial misdiagnosis and even now with what my surgeon identified.

Having pain specialists as part of the team of doctors treating me has also become important to my friends and family. They are more comfortable with my treatment plan now that I have this extra level of care. When my pain spikes to unbearable levels my friends and family ask if I should call the pain specialists to have my pain medications adjusted. They ask when my next appointment at the pain clinic is scheduled if they think I need support. And they ask if the pain specialists agree with my surgeon’s opinions about how to move forward with treating my condition.

At Friday’s appointment I saw the doctor I met during my first visit last summer– I like her a lot. She adjusted my medications to help with my night time pain and the high blood pressure I now have because of my pain. Then she talked to me about the procedure I have scheduled for later this week. This procedure will help my surgeon determine if the only surgery known to be able to correct the condition I have might help or hurt me further because my illness is rare, but my case is more complicated than most documented cases.

The doctor outlined the possible outcomes for the procedure and she set my expectations. I could end up having a major pain flare up after the procedure and it may take weeks to see any positive results– if any at all. If my pain is not relieved then the surgical option will be taken off the table because the anticipated outcomes for my post-operative quality of life are very poor. The upside if this procedure fails is that the pain clinic may be able to provide some minimally invasive treatments to help me cope better long-term.

My situation may not be ideal, but I feel very fortunate to have access to this clinic and such a caring team of doctors.

Today I leave you with Joan Armatrading singing about physical pain of a very different nature than mine.

Joan Armatrading – Physical Pain

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6 thoughts on “Pain Clinic #1

  1. I was in a very similar situation just a few months ago. I have had chronic pain for 5 years and they weren’t sure if the last surgery I needed would hurt or help me. I have had pain specialists as part of my team for over 4 years now and I don’t know what I would do without them. I also had a very special case and there really wasn’t anything to compare me to. However, I had the surgery about 3 months ago and it has really changed my life. Although I am not completely out of pain, I am at a much more manageable level. I completely understand what you’re going through, but never give up hope for better quality of life! I also write a blog about chronic pain and here is a link to one of my inspirational posts regarding chronic pain. I hope this quote could help you through a difficult time as it did many times for me. http://jawsurgerypain.com/2014/12/02/137/

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  2. I’m so glad that you’re reviewing all of your options, not just surgery. Surgery is a major trauma to the body, and your body sounds like its already had its share of major traumas. As a TMJ patient, just like Jaelin, I also had surgery, although not as extensive. And I would not counsel any other TMJ patient to choose surgery.

    I was desperate, as many pain patients are, and I didn’t analyze my decision to have surgery as much as you’re doing. I wasn’t told, like you, about the after effects of surgery — so I was surprised when the pain didn’t get any better, it just got worse. And then all my doctors are like, well, there’s nothing else we can do.

    And here I sit, decades later, with pain that has just gotten progressively worse, while access to the treatments that can work are getting even more restrictive. As someone who has suffered from intractable pain for almost 30 years, I would hate to see another pain patient following me down that same road…

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    • I’m so sorry to hear that this has been your experience. I hope you’re having a good day today.

      I think I got lucky when I was sent to a doctor with compassion. Even though my condition is not something he can treat he investigated what could be done for me. At the beginning of all this all my hopes were pinned on surgery. Knowing what I do now I’m willing to try as many things as possible before locking my fate to surgery.

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