Fed up with Doctor Y's Office: The Letter

Before leaving Seattle to get married and go on a long sabbatical/vacation, I saw my (former) neurologist Dr. Y. We discussed my recent diagnosis of Syringomyelia, and I told him I'll need help managing it while travelling. He seemed to agree, but when I called him from abroad and from NYC his office was less than helpful. I felt fed up and let down and I was in pain. After returning to the west coast, I wrote this letter to Dr. Y which I will send tomorrow.

Censored version with names removed
From Patient: A
To: Dr. B Y Fax: xxx.680.2246

January 23, 2006

Dr. Y,

You may recall my vacation plans from our last appointment: I married in August in Oregon and then my wife and I have been traveling (US and EU). We are currently travelling across the US and plan on settling in Portland. Travel has been difficult at times with a chronic, painful condition, but I'm thankful to be able to do so.

I called your office on December 7, 2005 from NY to give you an update on my condition (it'd been almost 3 months) and ask for a massage prescription. I was very disappointed with the lack of care I received from your office. I had told you I would be traveling and may need to call from the road. I realize that there are limitations to what you are able to do without your patient present. I entrusted you to be the primary physician to help me deal with my difficult neuro. condition. I discovered that, because I happened to be away from Seattle, I had nobody to turn to for help with my painful condition. All I was told was that “if its that bad, go to the ER”. I do not feel this is appropriate; I have a chronic condition, not an emergency, and the ER is quite expensive. Massage is effective treatment for spasticity, and there is no contraindication here. This was unacceptable. My doctor friends told me to find a new neurologist and I agreed.

What I expect from my neurologist is a strong ally in dealing with Syringo Myelia (SM). I am grateful that you were able to help me diagnose SM, and appreciate your past efforts to listen to me.

On January 18, 2006, I called and requested a referral to the OHSU neurology clinic in Portland, where I plan on living. You refused to give a referral even though you diagnosed the condition. Wonderful. Thanks for the help.

I will try to send a book titled “Contents Under Pressure” in the hopes that it will educate you and your staff about just how difficult it is for the patient to find quality care with a rare neurological disorder such as SM. Very few doctors (only neurosurgeons, really) understand the condition, you have to get a referral to see a specialist, and the health establishment presents numerous obstacles to the patient who is in a lot of pain and slowly loosing motor control. I'm only 30 years old. Just try to imagine it.

I felt that you should receive this feedback first.

Sincerely,

name
cell
email

I ordered two more copies of Contents Under Pressure, one of which I will send to his office and urge them to read. The book portrays some of the frustrations people face dealing with the health care beaucracy when they have a rare, difficult to diagnose disease such as SM. The author actually does not have a syrinx, but he has a related condition called Chiari Malformation.