Yesterday.. Some answers and then some..

Yesterday I had my fifth dilation at the Mayo Clinic.

Here is what I know:

• They were able to get my opening back to 15mm. They did not tell me how narrow the opening had gotten, but since I just had a dilation the beginning of last week it should not have closed much.
• I did not have a steroid treatment this time. I had a steroid treatment with my dilation on the 11^th, so it was too soon for another one.
• They are also not worried about the tear. The tear occurred in the scar tissue and not my esophagus as originally thought. The scar tissue will tear during a dilation on a fairly regularly basis and as long as the tear does not perforate the esophagus you are fine. I was also told that if a tear creates a hole anywhere (esophagus or intestine) during a dilation that I would know about it by waking up in recovery after emergency surgery. I didn't wake up in recovery after emergency surgery yesterday, in case you were wondering. 
• The pain I experienced after the last procedure was because of a series of biopsies taken during my procedure on the 11^th. The doctor doing the dilation will do biopsies if they notice that the scar tissue growing or changing in anyway. According to the doctor yesterday, they just wanted to make sure that the scar tissue contained no residual cancer or precancerous cells. Everything came out clean which is nice.

See all good news……  So far….  But then.....

After the dilation I met with my surgeon, Dr. Kendrick, and things went downhill quickly. One of the first few lines out of his mouth was “I have a plan to end these dilations, but you’re really not going to like it.” 

“We need to put in a stent” was all he said.

“Crap” or actually the potty mouth version of that word was all I could come up with.

The procedure to put the stent in is pretty much the same as the dilation. They are going to go in and expand the opening out to 15mm. Once that is complete they will insert the stent into the area and let the scar tissue close on it. The idea being that the scar tissue will be held in place by the stent until such time as the scar tissue establishes the 15mm opening as it’s permanent place of residence. Then the stent can be removed (two to three months later) and all is well. Well at least that’s the plan.

I have mentioned my sister Melanie a few times in these postings. She had her stomach removed a year ago. Due to this I have been able to use her as a sounding board for some of the decisions I have needed to make. No matter what it was, there was a good chance that she had gone through a similar experience. Now where our stories are similar they were not always the same. Dr. Kendrick was quick to point that out, yet his comment that I was “really not going to like this” was based on what happened to her.  

After a number of dilations it was recommended to Melanie that she have a stent put in. Which she did and her body almost immediately rejected it. Long story made short, she spent 4 days in the hospital trying to recover from the little stent experiment. She continued to have to have dilations after the stent came out. So in the end the stent was just a painful, horrible mistake.

Dr. Kendrick pointed out that what happened to Mel was “not normal” and “was the exception and not the norm”.  What? Not the norm? None of this is normal.  A normal person doesn't have their stomach cut out. And of the people who do have their stomachs removed it is not normal to have to have strictures. The ones that have strictures only have to have one or two dilations and it fixes it. The number of people this affects just keeps getting smaller and now you tell me that there is a normal to the abnormal? The percentage of people who have had to have a stent put into the keep the connection between their esophagus and intestine open, after having their stomach removed, is probably just north of nil. So having one of them go bad is probably a pretty high percentage I am sorry to say. Not normal my ass. There I vented.

In the end I am having the stent put in next week. I am tired of having dilations. If there is even a slim chance that putting the stent in will put and end to them then I will take it. I would like to say that I have had enough go “wrong” on this little adventure that something has to break my way but I am not that optimistic anymore. I won’t know if it worked or not until I wake up from the procedure. Hopefully not after an emergency surgery. 

Are we having fun yet?

She said, "Boy, I'm gonna give you the ride off your life.

We're only gonna do it once, but we're gonna do it right.

If you're into taking chances, you better hold on tight.

Cause I'm gonna give you the ride of your like.

(The Ride Of Your Life  Restless Heart)