If you occasionally read my blog, you know about the weird illness that my wife has been dealing with since the beginning of they year. But in case you do not know, she has been diagnosed with nutcracker esophagus, a rare disorder where her esophagus goes through intense and severely painful spasms. For many patients, this comes in occasional occurrences and often has a discernible cause (such as an ulcer or viral infection). Most of the time, with a proper combination of pain medicine and spasm control drugs, the disorder can be kept in check. In my wife’s case, her G.I doctor could not find a cause and none of the medications would have any significant effect. So he ran out of options so he started the process for a surgical consult (for a procedure called a Myotomy) and kept upping her pain meds.
The Myotomy procedure involves the cutting of the spasming muscles to prevent them from having the spasms in the first place. It is somewhat of a drastic measure, but all other known medical options had been exhausted. So after a long wait, we finally met with the surgeon. In his opinion, although the surgery would help with the spasms he felt it would have a limited effect on the pain. He also seemed unsure because of previous surgery (years ago due to scar tissue from a car accident) and wanted to talk with her G.I doctor. Then the wait began…
In the meantime, more pain medication, several ER visit later and after her being treated like a junkie be hospital staff, we decided to see a pain management specialist. Dr. Barto, is an oncologist (cancer specialist) and actually went through cancer herself so she has a personal understanding of chronic pain and managed to significantly reduce her medicine intake by giving her lower doses of different medication with various effects. In the meantime, a few weeks later, we finally heard back from our G.I doctor and he is now unsure about the surgery and wants us to get a 3rd opinion.
All right, no big deal. Right? Well, he wants us to see a doctor on the in Milwaukee, which is pretty far from Washington state. In addition, our finances are really tight at the moment and our insurance would only partially cover the consult (and any expensive tests it might require). Being at the mercy of the doctor’s decision we move forward trying to set something up with the Milwaukee doctor. Yet again weeks pass without hearing back.
Finally, we hear back, the other specialist wants nothing to do with us and refers us in turn to a San Francisco doctor. All right, at least it is a little closer but still not covered by our insurance but we have to do what it takes. So we contact our G.I doctor, explain the situation and ask for them to send the file to the SF doctor. After almost two weeks, we finally hear back saying to simply send him the letter and file we had for the Milwaukee doctor. Ok, but the letter is addressed to the wrong doctor? Aren’t we getting a referral from our GI doctor for that one? What’s going on?
Another 1-2 weeks later, we get an email from the G.I. doctor’s assistant, saying in polite words that they are dumping us and they cannot help us anymore. Talk about ethics and compassion!! Welcome to the game of Doctor Hot Potato!
On the bright side, Dr. Barto is really caring and wants to help my wife. She is willing to help her personally and has a her ideas (or theories) even though he is not a GI specialist. So overall, months wasted and a few steps backward, we can at least hope we’re now moving in the right direction. We’ll see where things goes.
As I have mentioned, it is very likely we will need some out-of-state consults and are short on money at the moment. So we are going into “saving mode” and will start putting money away. Also, I’ve added a few sponsor links to my blog posts. So if anything offered is of interest, feel free to follow the links and help us out in the process.
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