- Get a neurologist in Portland (where I'm moving to) and get a full MRI work-up.
- See a specialist neurosurgeon in Seattle.
The neurosurgeons are on board and ready to see me. They'd prefer that I get a full set of new MRI's done first, but they are willing to order the films if they have to. I'll need a good local neurosurgeon to help me manage my SM in Portland anyways, so I decided to find a neurologist before seeing the neurosurgeons.
This should be a straightforward task. I have a solid diagnosis of a serious neurological condition, so there's no doubt I need a neurologist.
I decided to go to OHSU's neurology clinic since they are probably the biggest center in Portland. Unfortunately, getting in to see a neurologist at OHSU is near impossible. They have the most absurd and useless admissions process I've ever seen. Here is what has happened so far:
- I called the main OHSU neurology line and said I needed a new neurologist in Portland for my diagnosis of Syringomyelia. They told me to have my doctor call this number (503-494-7967, see ohsu.com) for referral instructions.
- January 18, 2006: I called Dr. Y's office in Seattle and requested a referral to OHSU neurology, giving them the voice number to call for instructions. Dr. Y's office latter called me back and said they will not do the referral (after already doing two to UW and OHSU neuroSurgery) in an rude tone.
- January 19, 2006: I called my PCP Dr. M and requested a referral to OHSU neurology.
- January 23, 2006: I'd heard nothing from OHSU Neurology or Dr. M, so I called Dr. M's office to see how the referral was going. His staff was on top of it, but they were getting zero response from OSHU Neurology despite leaving two messages and waiting two days.
- January 23, 2006: I called the main OHSU Neurology line and explained that I was having difficulty with their referral process. I also had called the number they gave me for referral and was told to leave a message. I asked for the name and number of the Supervisor. The staffer said that I should avoid calling the supervisor and creating a "messy situation", and that she would instead tell the woman in charge of the (503-494-7967 part of the clinic) referrals to call my doctor back. I kept my tone professional, politely asking again for the name and number of the supervisor, just in case I should need it. (Jean Ellis 503-494-2286) I then hung up and waited.
- January 24, 2006: I called my PCP Dr. M. They finally got a response from OHSU Neurology. They said that OHSU requires the referral to be mailed, not faxed, and that they would fax a reply and mail the referral immediately.
- January 25, 2006: Roxy from Dr. M's office called. They received a fax (no phone call) that said that I need to follow up with my Neurologist in Eugene (none such person exists) first. WTF!?
- January 25, 2006, ~11:20 am: I called the OHSU Neurology "supervisor" Jean Ellis at 503-494-2286 and got his voice mail. I left my name and number and asked him to please call me back ASAP, preferrably today.
Ahh, another fun day dealing with healthcare beaucracy. Isn't it amazing!? It's even more fun when you're in pain. Yay.
4 comments:
sorry you have had so much trouble with the referral process. I have rsd/crps. nobody in my town of salem can help me and I have referral processes juststarting for ohsu pain center and nuerology. hope I have better luck than you've had. I know how bad it sucks to be in pain24/7 and nobody seems to care or help. good luch to you and hopefully good health.
Hi. I understand totally. I had a ruptured disc so had a discectomy over two years ago and never fully recovered. Although I can now walk, I suffer agonizing pain 24/7 especially when I lie down for even 30 seconds. That disables me. Through this process I had to take lots of time off from work as leave, then unpaid leave, had tons of MRI's and saw a neurologist who gave me sketchy answers and dismissed me with advice that I need to be on mood stabilizers to treat my depression which he thinks is causing it all.///Then I call back to him unsatisfied and he says well they think I might have a spinal infection of some sort and maybe I should come back in. I then receieved a letter of termination from my work due to leave paperwork I faxed, not reaching them. Now I'm broke, without medical care, and hopeless and waiting for state aid./// I never imagined that it could ever be like this. By the way, I am NOT depressed (as the Dr. tried to guess) despite my chronic pain and chaos in my life. I remain positive, not sure why at this point. Getting sicker all the time, and disabled for the most part.///Just wanted you to know I understand and am going through terrible treatment, or lack thereof rather./// To top this, my MRI shows edema of the spine, and dark spots in my vertebrae that surround the site of surgery. Scary... miasansomatyahoodotcom
I also have SM with a Chari Malformation; however, I had a decompression done, which almost elminated most of my mygrains. However, the "bolts of pain" in my right arm, which the doctors call, "Tremors," are told to me the cause from my syrinx; however, the syrinx, which expands down to my T2 area favors my left side- why is the pain on my right side??? The left side just started with discomfort about 2 months ago. The right side pain has been there for a long time.
It has been a few years since you posted this. Did you ever get into OHSU and if so, how were they in treating your condition?
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