Neck MRI results

[ny biker]

I find that it's hit or miss in terms of finding doctors who know what to do with a patient who exercises. The exception is my gynecologist, because we both work out with the same personal trainer. Otherwise there seems to be no reliable information available before making the appointment. I was just lucky to find a pulmonologist who is unphased by my activity level. When I had the paralyzed vocal cord problem last year I would have been lost without him, since the ENT I went to had no concept of how to treat an active patient and refused to believe me when I said that it was affecting my ability to breathe when I rode my bike. When I went to an orthopedic surgeon some years back for a knee problem, two days prior to a riding a very hilly century, I was relieved that he said "let's give you something to get you through this weekend" rather than "I'm sorry but you can't do that bike ride" -- when I made the appointment I had no idea how he would treat me.

Great news about the meniscus, Catrin.

[Catrin]

I've been pretty good in recent years at not meeting that attitude, but my PCP is an OD and my chiro specializes in sports medicine. Of course that still doesn't mean they don't look at my birthday, and my chiro DOES remind me that I don't have the neck of a 26 year old. All in all I feel fortunate. So now I'm faced with figuring out how far to push my exercise until we get more information - enough but not too far. I just CAN'T sit on the couch until Feb and however long it takes to get those tests completed.

[Aromig]

I always find the sports medicine people the best. I'm in my mid-40s, work at a professional desk job, and am "curvy" (my nice way of saying overweight) but still really really active. I'm always relieved to find someone who helps me maintain my activity levels, without just having the knee-jerk reaction of saying "don't be so active."

[salsabike]

So one thing I did when I went to see ankle surgeons two years ago about the posterior tibial tendon dysfunction might interest you all, because it's very germane to everyone's concerns. I wrote a one-page summary and asked them to read it before we talked. The summary basically said:

"I have recently been diagnosed with posterior tibial tendon syndrome, stage 1 or early stage 2. My goal in coming here is to get a comprehensive understanding of all of my options for treating this, before it deteriorates further. It is very important to me that I be able to stay as active as I am now....

(description of symptoms, MRI results, etc.)

I am a 60-year-old athlete who is 40 pounds overweight. I have worked very hard to take the weight off, and several times have lost 20-25 lbs., and have gained some of it back. I am very aware of the weight effect on my body, care about it, and work to change it, with variable results. It is just as important for me to say here that I am nonetheless very active and plan to be very active as long as I possibly can until the day I die...

[a list of what I do annually since 2005: ride 2500-3000 miles a year, 8-9 miles hikes with 1500 ft. elevation gain. That I've done 8 sprint triathlons and three Olympics since 2008, and maintained a typical weekly triathlon training schedule with a coach, until this injury in 2014. That from about 1976-1991, I took 6-12 hours of ballet class a week; had to quit because I developed fibromyalgia; took medication for the resulting severe chronic muscle pain that made me gain a huge amount of weight and ended up changing my weight set point, so it is harder to lose and keep off weight now.]

And ending with this:

I can’t imagine not being able to hike and ride, especially...I write this so you will understand that being very active is a huge part of my life and that conversations about posterior tib tendon syndrome treatment need to recognize that as a priority concern of mine. Thanks."

The ankle surgeons I saw--one who is on the Seattle Seahawks' orthopedics team and one who is on the Washington Huskies' orthopedics team--took me very seriously and treated me with respect. I am not sure that would have happened without presenting this letter first.

So...just a tool for you all to think about using when the stakes are high and you're really worried.

[OakLeaf]

That's a great way to go. Still, I think the #1 effect would be to screen out the 75-80% of doctors who (in my experience) wouldn't bother to read it before walking into the exam room.

(To be fair - some doctors really do want to do better, but insurance companies constrain almost all of them. The choice in today's world for a doctor is either to administer a treatment code that matches the diagnosis code in the insurance company's flow chart - which, treatment codes encompass the duration of a visit - or, to stop accepting insurance entirely, and treat only those who can afford it. That works for some specialties just fine, particularly primary care, but not so much for a surgeon. I've talked with my psychiatrist quite a bit about this. After several bouts in and out of corporate medicine, once she'd paid off her student loans, she took a sabbatical and then came back to practicing but not accepting insurance. It distresses her a lot, not to be able to treat middle and low income patients, but not as much as giving poor care to all her patients distressed her when she did accept insurance.)


My massage therapist was asking me about my resting heart rate yesterday, which made me think of a way to characterize people like us:

"My age is greater than my resting heart rate."

[Catrin]

I like the letter and agree with Oakleaf. My problem is I've no knowledge of the neuro my DO is sending me to, and HE is new enough to the area that he doesn't yet have a local spine - doc favorite. The practice appears to be a small one, which isn't a bad thing. It IS part of a local major hospital but I can't find out much information outside of that. They appear to focus on thier patients more than thier website. Again, not a bad thing and i think neurosurgery is a smaller field than some.

So I will go on Feb 9, and present a similar letter when I drop off my images and paperwork prior to my visit. I DO have 2 others in mind for a second opinion if they advise immediate surgery as I suspect they will.

[Crankin]

Oak, I know this is getting off topic, but I really feel squeezed by the insurance situation you describe in my own work. A lot of the private practice therapists here have gone to not accepting insurance. They charge between 100-300 per hour. Now, I know there are enough people who can pay that, especially since many don't want any record of seeing a therapist. But, I have a problem with it. I don't think I could do that, yet I don't want to deal with insurance companies, so I am staying at the clinic. I keep thinking that I couldn't stay there, if DH didn't have a good income, as my income is so small, that this really is my "give back" career. It's a no-win situation. The only benefit is that I have a lot of clients, with professional jobs, with very good insurance. They can't or won't pay the private practice rates, so they come to the clinic, which is exactly what I would do now (although I had a private practice therapist who took insurance). Thus, we have an extremely diverse practice, in terms of SES and culture.
I say this as I am getting ready to go off for my annual physical, with my carefully chosen doctor!

[Aromig]

Such a letter is a GREAT idea!

When I started having pain while running last year, I went to a new ortho doctor. I decided to try someone new because the ortho doctor who was treating my broken leg four years ago (a torsion fracture of my tibia from stepping in a hole after running out a parachute landing :-)) repeatedly just told me that I might not ever be 100% again. The first thing this new doctor did was ask "so tell me about your typical week, what do you do?" I told him about running and cycling and yoga. He asked how many hours of each. Instead of judging me by how I look or what my job is, he said "well, endurance athletes are sometimes the hardest to treat because all of you seem to run/ride right through the pain and aren't good at judging when to stop. I will make you a deal, I promise you that I will get you out there and up to normal activity levels as soon as I can if you promise me to be honest about your pain."

I was tickled pink that he called me an endurance athlete (and then I wondered why I didn't call myself that? I do 4 or 5 centuries each summer and a lot of longer rides as well).

[Catrin]

I dropped off my images and paperwork at the neurosurgeons office yesterday for next week. I did decide to write a letter, and so I did.

[OakLeaf]

Hope they take your concerns seriously and can come up with a plan that works for you.

Aromig, I missed your post earlier, sounds like you got a good one!

[Catrin]

Come to find out, both the person who read my MRI and my doctor over-reacted to the findings. The neurosurgeon said there wasn't anything in it that was not age-appropriate and he didn't see any stenosis. He said many who read MRIs do err on the side of caution. He DOES, however, think I've some peripheral nerve issues, and has ordered an EMG to see if we can figure out what's going on. He thinks I've some peripheral neuropathy but we need to chase it down. Many things can cause that, and I don't know what can be done about it, but it's a big relief that some big neck surgery is no longer looming! I probably need a neurologist rather than a surgeon, but we will see what the outcome of the test is. So I will start to ramp things back up a bit, just not do those things that causes my arms to go numb :-)

[OakLeaf]

That's great news!

Hope the EMG isn't too painful, and that it gives your doctor some good info and a path toward a plan.

[Pax]

Whew, good news!!

[Crankin]

I had an EMG and it was not the worst thing I've had... You can handle it.

[Catrin]

Thanks for the heads-up that it might be painful...the online references I checked out mentioned nothing about pain... Oh well, I'm a tough old bird

BTW, I had heard that neurosurgeons tend to be very terse, that was certainly no exaggeration! Very hard to talk to, but he was very clear in what little he did say. I've friends in that speciality field who says he is very good, and as odd as the conversation was, I walked out feel good about everything and not just because he told me what I had hoped to hear.