(Donning gold chain with big clock around my neck, hip-hoppin’ to my rhyme, cuz’ now I’ve “got the time”…)
Oh, you say that term, ‘Dude, its out of date’?
Hmmm…on second thought, let me re-it-er-ate,
I’m kickin’ it old school, just to make you freak
Like the sound of Dr. Z’s sneaks, going ‘squeak squeak’
I can always tell when she’s coming round
When I’m in the crib on her side of town
(Insert “West Side” hand signal throwdown.)
Ok, I’ll stop before I cause further injury. I know the world can’t handle much more of that before either fire and brimstone rains down or the return of Jesus is quickened.
(Removing gold chain with big clock and giving it back to Mike because he told me last week he actually wore one of those! He said he has a picture too, so I’m gonna try to get it! Hee hee. Blackmail.)
Last week I had another appointment with Dr. Z, last Monday. Did I tell you she’s Da Bomb? Oh yeah, I did!
I heard her sneakers squeak closer and closer to the door; she has a funny walk (it takes one to know one, and I clearly qualify…), so I have been trying to figure out if it’s her shoes, her gait, or the floors themselves that make the squeak-doppler tracking system so effective. She came into the room so calm and focused…can I get a bottle of that? No, seriously…
She asked me what I thought of the intranasal ketamine and I told her it was some wild stuff (my face probably said “REALLY FREAKY wild stuff”) and that I wasn’t real comfortable with 3 sniffs due to the side effects, so I was using 2 sniffs as needed and that was helping with the pain a little bit – 1 sniff didn’t do much, if anything, for the pain. She asked me about the side effects. “I took it yesterday and it was like I was looking through one of those old Viewmasters, with the pictures in 3D, and you can clearly see the levels or “slices” of each 3D layer. I was listening to the sermon in church and I was like ‘Dude, that’s 3D!!!'” and that’s with just 2 sniffs, so you can imagine what 3 does to me! She recognized it gives me visual and perceptual distortion. She said I might have less side effects the more often and regularly I use the intranasal ketamine and recommended two sniffs twice a day. The one hour of side effects and the 3 hours of pain relief I was experiencing matched up exactly with the clinical studies, she told me. I told her it was hard to fit 2 hours of “down time” into my schedule and that I am scheduled tightly from 7am-11am.
“You do a great job of organizing yourself; its awesome,” she said, and I really appreciated the fact that she recognized how much effort goes into managing my health. (98% of people don’t have a clue, ESPECIALLY doctors it seems.) I said, “Well, I have to.”
We talked about increasing my Lyrica, but I was wary because I couldn’t pin down the cause of new bladder incontinence issues I’d had for several weeks, the timing of which matched the previous increase in my Lyrica dosage. I didn’t want this to be an inadvertent side effect of the Lyrica, since I felt the Lyrica has been quite helpful in decreasing my burning pains and I felt increasing the dose may help achieve further relief, but neither did I want to keep having incontinence and end up depending on Depends! Luckily, she didn’t think it was the Lyrica and recommended I check in with my primary care to see if I had a UTI. (Turns out I did!)
I wondered why, when I missed even one dose of my Lyrica, I felt the burning pains coming into my legs more strongly. She said it just meant I was losing the therapeutic benefit, that when I stop taking it there wasn’t enough in my bloodstream to do what it’s supposed to do. So we decided not to decrease the Lyrica right now, but just to hold on.
She mentioned Nucynta again, and I told her I had thought about it but wasn’t ready to try it yet because I didn’t want anything that would cause increased constipation. Even though it’s known for being much less likely than other opoid meds to cause constipation, even a slight slow-down for me equals HUGE problems in the GI department.
I mentioned that the ketamine significantly increased my visceral hypersensitivity. So while it helps with the burning pains in my legs, it revs up my visceral hypersensitivity so it’s a real balancing act to keep gut and legs happy. If the VH acts up, I can feel everything moving through my intestines, and that’s EXTREMELY painful and can be Game Over for a week or more until I can get it calmed down again. She told me her patients with VH in the past responded well to tricyclics in low doses and asked about my experience with those. Let’s just say they make me nuts. Probably because the GI system makes 80-90% of our neurotransmitters and so I’m already a bit “off” in that department, then we add in an SSRI or something to really jam things up and it throws everything off.
Some of the old tricyclics were terrible for treating depression (and they made people super sleepy), she said, but they work well for nerve pain and bowel hypersensitivity in much lower doses. She said using Elavil/Amitriptaline could slow my motility a bit but I could try biting just a little of the tablet to see if I could manage it. She said I could keep it on hand and try it if I decided I wantd to. I love how she doesn’t try to push meds on me like other doctors have in the past. She understands my hesitancy. I’m not a natural pill popper and I hate living by a schedule of pill reminders 3 or more times per day.
I asked for a note that I could take with me when advocating at health and fitness clubs, trying to get a payment plan or some type of financial assistance for the use of a warm water therapy pool to help increase function and decrease pain. Also needed a letter to VR for hand controls and shoes, hoping to help VR get the clue that we need to make this happen (been working on the hand controls for 2 years now with NO progress…ugh).
She talked to me about prognosis and said she’d spoken with her colleagues and it seemed that I’m likely to stay about the same. I might get better, but probably not worse or spread unless I have a new injury of some type – a car wreck, falling down stairs, falling in general, or surgery, etc. As long as I’m just living my life, I’ll have “good” years and “bad” years where it varies. The CRPS/RSD isn’t likely to disappear. But I was happy to know she didn’t foresee it getting any worse in and of its own, “more of the same” seems to be the name of the game. Desensitization and staying active is the right thing to do, and staying in bed and in my wheelchair is going to give me contractures, weakness, deconditioning, etc.
Curious as to what was left on the table for treatment options, I asked if she thought we should try the nerve ablation procedures. She cringed audibly. Eh, not the reaction I was hoping for. She asked me how much the nerve block helped me and I said it helped significantly with a few problems (circulation, less vibration hypersensitivity, color changes, temperature sense), not at all for others. Evidently the results from the nerve ablations would not yield any more drastic positive results than the nerve block did. I didn’t know this, though it makes sense; ablation just fries unruly nerve endings south of the brain, so any messed up pain signals that originate in the brain from lonstanding CRPS aren’t going to be corrected by ablations. Additionally, the risk of causing CRPS to spread to the place of needle insertion is a real risk. She’d had a patient who had a cortizone shot in her elbow for tendonitis, and it caused the RSD to spread there, where the pateint had not had RSD before…and that patient’s RSD was about as severe as mine. Also, some patients had really bad pain in their sides after these procedures. Yikes. Made me bite my lip a bit. She said with the blocks, she could knock me out with anesthesia to make it less likely to cause a spread, but the ablations are more invasive. Her gut feeling told her to hold off and make sure an ablation was worth the risks by first trying a few more nerve blocks under anesthesia if I wanted to ride down that road. I felt she was more hesitant about these interventions than when I’d spoken with her previously. Perhaps her colleagues had known of others who had also had spread from these procedures. But I wasn’t disappointed because I trusted her gut sense.
Let me take a moment to just say, “I RESPECT A DOCTOR WHO CAN TRUST HIS/HER INTUITION!” who doesn’t just play by the medical textbooks, is willing to turn lose and cut bait with tradition if benefits outweigh risks, and who is confident. But, you know what? It’s one thing to find a doctor who takes his or her gut sense into consideration; it’s an even better thing to find a doctor who takes his/her gut sense into consideration and who also isn’t a pompous, bombastic, arrogant, godlike smarty pants who forgot he had a thermometer shoved up there. Lucky for me, Dr. Z appears confident, able to trust her intuition, and not at all vain or proud. The fact that she’s so comfortable asking colleagues demonstrates her humility; she’s even freely offered herself to check with others regarding my case!
I know many docs who would be seriously offended if I’d asked them to check around, and NEVER would have considered for a nanosecond asking another doc for advice/experience. Also those docs who even hesitate to write referrals to other specialists outside of their field when they have no answers (which is hard for a proud doctor to admit in the first place). Proud doctors tend to preach “acceptance” while either leaving many stones unturned or in fact turning them over and, having no explanation for the odd things found beneath, replace the stones where they were found and say, “Eh, I didn’t see anything; you need to accept that it is what it is and learn to live with it”. What was Google’s informal motto? Something like “Don’t Be Evil”? If the shoe fits….
Back to the regularly scheduled programming….
I told her I had read that folks getting the SCS (Spinal Cord Stimulator) implants were often having trouble 3-5 years after the implant and having them taken out or just having issues, so I wasn’t sure what to think of all that. She said the SCS does work very well for CRPS and that at 3-5 years, 50% of SCS recipients will be getting 50% relief. I wanted to know about the other 50%. Dr. Z wondered if they had a clear diagnosis of CRPS, or if they were carefully selected, even if the leads migrated. She’d seen it work well for lower extremity CRPS.
I wanted to know more about the ketamine infusion, and she said she could send me to Dr. James North in Winston Salem. I told her I’d looked into it before because I was originally to see him based on a referral by my ortho surgeon, but that Dr. North doesn’t accept Medicaid, and because of this he wouldn’t accept my Medicare plus Medicaid combo at all. She said I might be able to get them to bill only Medicare and tell them I’ll pay the copay or remainder, but she’d had zero luck advocating for other patients with Dr. North’s practice. This is quite disappointing. She wrote to him asking if I’d be a candidate for IV ketamine and said he’d talk to me about all of that if so.
She ran through the plan of action up to this point and was getting ready to go. Oh no!, my brain said. I still have a few more questions! “Are you coming back?” I asked, hoping not to sound too desperate. “No,” she said, “What else do you need?” Ok, girl, time to squeeze it in as tightly as possible…STRESS LEVEL SOARING. Geez I hate it when this happens! Ok, try to keep looking composed. I have had these questions bouncing around for days to weeks and it’s frustrating leaving a doctor with them STILL bouncing around. My brain has enough to juggle as is!
I told her I felt like we’re still missing something because I have a bunch of really weird symptoms no doctors have been able to diagnose, and it’s NOT just CRPS, but I’ve become so tired of docs treating me like I’m nuts that I’ve just stopped asking for help with this stuff. Feeling like I’m going to pass out, actually passing out, not sweating in the summer (fainting instead), visual problems, heat and cold intolerance, difficulty with exercise, light sensitivity, heart palpitations, a “weird” feeling I get that I think is related to my circulation (I feel like an amphibian; I can’t keep my temperature steady). I said I felt like a lot of these symptoms were tied together – heart palpitations come on more strongly when I also feel like I’m about to pass out.
She wasn’t sure what to tell me on that account, which is fine with me, but she said a cardiologist would be the best to work on some of that. She said I should get a referral from my primary care to cariology since she didn’t know any good cardiologists right off the bat.
I explained how weak I get, that I can’t even hold my toothbrush up to brush my teeth for a minute and I have to rest my arm on a towel rack, and that I can’t open my eyes more than half way, have difficulty breathing, and facial weakness among other issues.
She threw out some differentials – seizures? myasthenia gravis? and other neuro conditions. She knew a good neruro so got me a referral there.
I said it’s like my autonomic nervous system is on the fritz and Dr. Z said some folks with RSD also have fibromyalgia and that it can make the ANS do wonky things, and I probably have it too (I was diagnosed with FMS at 18 or 19 years old).
She had to leave, but I had been able to squeeze most of my questions in and I was happy. Later realized I had forgotten to ask about the bone scan YET AGAIN! even though I had put it at the top of my list…but we rarely go in the order that I wrote on my list, so, sometimes I miss the most obvious questions.
Gail, Dr. Z’s nurse – she’s really awesome too and really helpful when I call with questions – came and got my papers straightened out. Then I was off to another appointment.
I sure am grateful to have Dr. Z on my team. I’m so grateful to the woman at MDA who recommended her to me! What are the chances of meeting someone else who has RSD in her legs too, lives near me, is my age, and has a wonderful doctor? What are the chances that this person would answer the phone on the day that I happen to be calling to ask if MDA can help people who have CRPS? I mean…CRPS/RSD is a fairly rare disease so I hear, and what are the chances? I’d say it was a miracle, myself. Believe what you wish. God had His hand on that too.
I have such bad “white coat syndrome” that even though I feel better getting answers from Dr. Z and her bedside manner couldn’t be better, my guts still act up and I get sick before or after every appointment. My gut are just that – my guts – and they have a mind of their own when it comes to peristaltic activity!
I was legitimately happy to hear that she didn’t think I’d get much worse without injury. Honestly, I think what I’ve had to deal with is bad enough, thanks. Though I do still wonder about WHY my left leg flared up so badly like it had never done before to that extent last December when nobody could identify an injury and I remembered no injury, only sudden sharp pains, then the feeling of a familiar stress fracture plus new problems. Guess I won’t know till I keep on living.
Dr. Z is quite amusing to me, and I’d love to know more about her if I wasn’t on a mission to get my rapid-fire questions answered before our appointment time was up.
One thing that’s really funny about Dr. Z is her voice. She has a fairly monotonous voice and I am not sure she could carry a tune in a bucket to save breakfast, yet she only sounds monotonous when she’s talking to other medical professionals or dictating. There’s a calming quality to her voice when she’s talking to patients, and there’s also a lot of interest in her voice. It’s like she has “selective monotony”. Uhm…see? Kinda funny-odd. I’m glad she seems so interested when she’s talking to patients! Makes me wonder what her coworkers think, however. LOL. 😀
While solving the riddle of the squeaky sneaks, which always squeak to the same rhythmic beat, certainly intrigues me (I should estimate how many beats per minute next time to see if she walks to Adagio, Andante (which I think actually means “a walking pace”?), Largo/Lento, or Moderato…do I really have nothing better to do with my extra neurons?), I’d like to know what motivated her to go into medicine in the first place, especially Pain Management. Most people who go into the medical field do so for rather altruistic motives, or so I’d like to think. Many of my peers in my college courses who were also in medicine had interesting stories to tell of their child who was born with multiple disabilities and how caring for their child made them realize they wanted to work in the medical field; others had a great doctor growing up and aspired to be like him; a few more had parents who were sick and they wanted to find a cure. For me, I had lived with various disabilities all my life and I had some practical experience in problem solving every moment of every day and learning to be as independent as possible despite my challenges, and as this perfectly fit into the premise of Occupational Therapy practice, I graduated as a COTA/L and loved my job. When you find one of those “gem of a doctor” folks, don’t you want to know the story behind their awesomeness? Perhaps the reason is not as exciting as I’d imagine (much like my baldness…really boring in reality, but the speculative guesses of others are VERY entertaining, as is providing some white lie versions of the truth in response to their questioning; much more interesting than that real truth).
Either way, I think doctors can really get burned out and a good doc can go sour over time. Boredom? Seeing the same “chronic pain” patients repeated day in and out because the complaints are all the same…well, I guess if you can’t appreciate the real nuances and details that make us all different, a snowflake is just a snowflake falling amongst a bunch of dull ol’ snowflakes, right? Perhaps the burnout that I saw was so common among medical professionals did many docs in – think of that nurse I wrote about in the last post. The job wasn’t what they signed up for – lots and lots of PAPERWORK. Good pay, but long hours, and Rx pads don’t come in exciting, happy, motivating colors (we need to get the drug reps working on Rx pad development…let’s just hope they make the Rx pads better than they make their clocks). Dr. Z has been “in business” for around 12 years, but she doesn’t seem the least bit burned out. Which brings me back to the sneakers…no, sorry, I’m joking this time.
Watch out for clocks on neck chains…they DO really effect your mojo.