Friday, January 9, 2015

Life is never boring (an update on M's back)

M had his long awaited appointment at the Colorado Comprehensive Spine Institute on Monday and it was not exactly what I was expecting... (or even close!)

I've already written a letter to the CCSI about our experiences, so rather than write about it again I'll just cut and paste the letter (yes, I am that lazy!).

It's a long letter so (just in case you don't want to read the whole thing) the condensed version is the appointment was a waste of time, we'll won't be going back there, and I have an overwhelming urge to send a thank you note to Dr L, M's regular spine doc at UCSHC.

Get comfortable... here's the letter:

January 8, 2015

To: Colorado Comprehensive Spine Institute Administration

Re: January 5, 2015 appointment with Dr Kuklo


This is to follow up my phone call to CCSI on 1-8-15 regarding my concerns about my son, M K’s,  1-5-15 appointment with Dr Kuklo. 

Due to my son’s disabilities I am his legal guardian. When I called to make his appointment I explained that my son is both developmentally delayed and has schizophrenia, and needs to see a physician who would be sensitive to his unique needs…he is not a typical 22 year old. I was assured that Dr Kuklo saw many of the CCSI pediatric patients, and was very good with individuals with special needs. Unfortunately, that turned out not to be the case. By the end of my his appointment with Dr Kuklo M felt hopeless about his back problems (an L5 pars fracture), confused and upset… Dr Kuklo told him several times that his back would never heal, giving the explanation that it would not heal because the fracture was on the “compression side”… M was not able to understand the explanation, he understood only the message that his back would “never heal“ (in M's mind, “never get better, pain forever“). 

Dr Kuklo gave the impression that M’s back problem is so common as to be unimportant, saying that 5% of the population has pars fractures… He seemed to have no interest in the impact this injury and the associated pain has had on M’s life. I understand that, as back problems go, a pars fracture is a common issue and not an emergency… However, the fracture has impacted M’s life significantly for over a year and is not a common issue for us. It would have been nice if Dr Kuklo had treated M’s experience with a bit more sensitivity and respect…

Dr Kuklo spoke disparagingly about other treatment options that have been suggested by other spine physicians M has seen and was so outspoken about his poor opinion of surgery for M’s problem, and it’s slight chance for success, that if M does need that type of surgery in the future, it’s likely to be very difficult to get him past the anxiety triggered by Dr Kuklo’s overzealous and overbearing sharing of his negative opinions. 

As the parent of two children (now young adults) with special needs it’s easy for me to recognize people who are sensitive to, and understanding of, those with disabilities. Dr Kuklo was neither… I have no idea why M was scheduled with him. Dr Kuklo’s words and the attitude in which he said them were confusing and hurtful to my son… 

During the appointment Dr Kuklo came across as arrogant and patronizing towards me as well, at one point telling me that M has a pars fracture, then asking “Do you know what that means?” in a tone of voice that left no doubt in my mind that he believed I was an uneducated, clueless, parent and could not possibly understand the big words he was using. Had he taken the time to read through the medical records I provided, he would have seen that M has been in treatment for the pars fracture for almost a year… Does he really think I would not know what the doctors have been treating all this time?  M has been seeing highly educated and experienced physicians for his entire life, I have gotten used to being treated with respect and as a partner in his care by the many specialists he sees (orthopedists, gastroenterologists, cardiologists, psychiatrists, neurologists, just to name a few…) Does Dr Kuklo really have such a low opinion of parents who take on the job of caring for their seriously disabled adult children? 

Our appointment ended up taking almost two hours… only about 15 minutes of that time was actually spent with Dr Kuklo. Part of those two hours was spent on an x-ray, but most of that time was spent sitting in the waiting room while Michael’s anxiety went up, he wandered restlessly, and those who came in after us were called back. That kind of a wait is extremely difficult for someone who is developmentally delayed, mentally ill, and anxious about the appointment before we even walked in the door… 

We waited two months for our appointment with Dr Kuklo… two months during which M’s back treatment was on hold and he struggled with the pain and all it brings with it (pain causes stress, stress causes an increase in psychiatric symptoms, including psychosis). We made the decision to do this because I’d heard good things about the CCSI, and I hoped the orthopedist we saw would help us clarify the next step in M’s treatment. Instead we ended up with an unnecessary x-ray and 15 minutes with an arrogant, opinionated, and insensitive, doctor. The appointment was a complete waste of our time. 

Imagine my surprise the next day when I decided to leave feedback about our appointment online, googled Dr Kuklo’s name and found his past checkered with various professional/ethical issues. Why would you schedule my son… who is so vulnerable and nothing but complicated medically, developmentally, and psychiatrically with a physician with Dr Kuklo’s very poor bedside manner, and questionable history? 

I am extremely thankful that we do not have to see Dr Kuklo again, and that M still has good treatment options available to him (not through CCSI, obviously)…  but angry about the lack of caring about the patient we experienced. I had much higher hopes for your clinic and your doctors… 

(I'll let you know what kind of response I get, if any....)

3 comments:

Virignia said...

Oooohhhh that makes me want to punch someone in the face. That is horrible!

liese4 said...

Son of a nutcracker, what the heck? Your letter should move mountains, at least get a formal apology. I do not understand this.....give Michael a big (gentle) hug from us.

Angela said...

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}

I have no words for those morons!!!!