25 October 2010

We drove over 120 miles today to get some peace of mind and got hope as a "parting gift"

Despite much trepidation, I went to see a specialist today. I'm so glad I did. My husband and I had to drive over 60 miles one way to get to the Vital Health Institute to meet with Dr. Andrew Cook, but it was a drive worth making. It was one of the most positive experiences I've had dealing with the medical profession. That's saying a lot.

The incredibly kind staff and soothing office ambiance put my mind at ease shortly after arriving. Prior to any exam, my husband and I had an opportunity to meet with the doctor in a comfortable consultation room furnished with cushy chairs. It was so refreshing to be able to review my medical file in comfort and fully clothed instead of sitting on an exam table with my chilled legs dangling from underneath a paper smock.

Here are some more refreshing aspects of my visit:
  • The doctor wasn't rushed because he sets aside an hour to an hour and a half for initial patient consultations/exams.
  • He had reviewed my file before I came in so he was familiar with my history and ready to "hit the ground running".
  • The doctor managed to be both kind and straightforward in his answers.
  • He performed the ultrasound/sonogram himself so he got images of what he is looking for instead of what a tech thinks he may want to see.
I had my share of "a-ha" moments during the consultation as Dr. Cook enlightened and educated us. Here are the major "a-ha's" I gleaned from my consultation and exam:
  • The doctor suggested that because of the nature of ovarian tissue (it's very sinewy) and because of the amount of scar tissue I had around my ovaries back in 2005, it is highly probable that a piece of an ovary was left behind back in 2005. It would explain why my symptoms have somewhat a cyclic pattern.
  • The doctor helped us understand that endometriosis implants are, for all intents and purposes, "tumors". And recent research has uncovered that those implants can create their own estrogen and keep going even if all reproductive organs have been removed or shut down artificially. That's why recurrence after hysterectomy is high if all implants are not excised the first time. It's also why popular hormone therapies (e.g., Lupron) can be ineffective.
  • The doctor showed us that even though endometriosis can't be "seen" with ultrasound, a trained specialist's eye can see indications that scar tissue is most probably present (as in my case).
  • Based on my exam, the doctor believes I may have interstitial cystitis in addition to the endometriosis. The two conditions could be related.
  • Finally, the doctor enlightened us that long-term sufferers of endometriosis can end up experiencing other tangentially related issues. In my case, I may have a connected form of insulin resistance. All of that will be explored further down the road.
Even though my case is a complex one, he is hopeful that with surgery I can regain the quality of life I had a brief glimpse of a couple of years ago. It means that surgery is in my future. But it also means that there's hope of feeling well again!

Dr. Cook used a great analogy. He said it's like someone that's getting horrible gas mileage with their car. They can go have it tuned up, get new tires, and overhaul everything. Then come to find out that the emergency brake has been engaged the whole time. The emergency brake has to be disengaged or all the other measures won't make up for it. The car will still get lousy gas mileage. Endometriosis implants are like the emergency brake. We have to take care of that first or nothing else that we do will really solve the problem.

This all means that we have to make some harder decisions if we want to make surgery a possibility due to financial considerations, because Dr. Cook is an "out-of-network" doctor for any health care coverage, not just ours. Other aspects of the surgery like the hospital and anesthesiologist could be covered by some PPO health insurance plans, which we don't have. We have some options in that arena, so we're having to examine those carefully.

Despite those factors, both of us came out of the appointment feeling like a huge weight had been lifted off our shoulders--this, after we had both been on the verge of tears going into the experience. That's very telling to me. The calmness we each feel individually and together is very telling too.

Needless to say the 60 mile drive home was a lot less tense then the ride there.


Heidi said...

How wonderful! It helps just to know that someone you trust has a handle on things. The money part stinks, though. I'll be hoping fo the best for you!

Muddy Boot Dreams said...

When you finally get even part of the answer, or someone that actually believes you, it's such a relief. I think that is a major part of the battle.

It really looks like you will be able to move forward on this, and I am so glad to hear that you have hope in your voice.

Hugs to you,

Jen @ Muddy Boot Dreams

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