Wednesday, June 24, 2015

Can you hear me now?

Blue Tooth! Can you hear me now?


David is driving us home.  I’m writing my blog via voice commands over my new blue tooth (see above).  Check it out….NO ONE else has BLUE TOOTH technology like I HAVE!!! Try not to be jealous.

I cannot describe the relief I feel just knowing we are headed in the right direction.  I think this trip held so much hope, that it was really quite terrifying.  I have been gaining so much feeling back in my left leg since the spinal cord stimulator device was removed, it’s simply the headaches and subsequent lethargy that really seems to be my biggest barrier to the lifestyle I long for. 

The headache specialist, Dr. Boes, ordered a PET scan and a cisternogram. The PET scan was to rule out the degenerative brain disorders, and the cisternogram uses such an usual concoction of “contrast” that the nuclear medicine pharmacists actually sent the wrong medicine and we ended up having to stay in Rochestor for an additional day due to the delay (apparently it had to be flown in and was in transit as my procedure began).  They flip-flopped my schedule so I had the PET scan first. Luckily, I had not eaten in some time as that test requires a short fasting period and several limitations in the types of food that cannot be eaten for the 18 hours prior to the exam.  Whew. But the cisternogram was the test I was dreading the most, as it began with a spinal tap, and then they wheeled me up to the nuclear medicine department, where I spent the remainder of yesterday.  On 5 different occasions, I had an hour-long CT scan, while they watched the medicine migrate its way to my brain. The hard part of this, believe it or not, is that odd shaped slab they roll you in and out of the tube on.  I was in such excruciating pain having to lie there, without moving each time, that it really took two people to get me back up.  It was no bueno.  David and I crashed early last night, as we had to come back at 8:00 this morning for the last of the dreaded CT scans.

Of course, throw into the schedule over the past two days, that I had to fit in a trip to the dentist to be fitted for this device that prevents me from clinching my teeth at night.  We did manage to do that and Dr. Klempe (the Dentist) was more than accommodating.  I cannot say enough good things about him and his assistant, Dawn.  Without a doubt, I am sure God brought us to them.  My teeth could have broken at any time, and although I rather resented that it happened while we were already at our stress max, Dr. Klempe approached this entire scenario as an essential piece of the headache puzzle.  I believe he may be right.

I think it’s safe to say that my official diagnosis is “Complicated.”  In truth, Ehlers Danlos is complicated and unfortunately, they just don’t know this disease enough to have established disease process treatments and protocols. 

After the morning CT scan, David and I went for a cup of coffee and were simply waiting for the next appointment with Dr. Klempe at noon, before we met with Dr. Boes (headache specialist) at 1:45.  But my cell phone rang at 9:35 and I always jolt when the area code is 507.  The woman said, “Did you get a phone call telling you that Dr. Drubach (the cognitive specialist who I had an appointment with in September!) has agreed to see you TODAY at 9:45?” I said, no mam, but we can be there in 5 minutes.  Good thing.  We jumped in the car, parked at the hotel, and my sweet David pushed me at warp speed down through the underground walkway to the 8th floor of the Gonda building! We arrived at 9:43 and even I was panting.  Dr. Drubach did a thorough exam and reviewed all of the previous tests and consultations.  He basically said that although I had significant cognitive deficits with higher order thinking, where problem solving is concerned, there was no evidence of any typical disease process.  Woot! He suggested that my case was complicated (no duh!) and they would simply use the current PET and MRI scans as a baseline for future exams to help establish any possible degenerative brain disease.  Cool beans – mostly good news and now we don’t have to return to Rochestor in September!  It’s really like we won the lottery on that!

In the meantime, we missed the dentist appointment.  David called and thanked him for the help and got the information I need to bring to my dentists in Shreveport.  Then we grabbed a hot dog in the “Peace Plaza” outside the Mayo Clinic and bought ourselves a beautiful pencil drawing of a female cardinal (the video you see below is of a female in a male cardinal mask….I know you thought it was a real cardinal…sorry).  We started getting anxious, so we decided to just go early to my headache appointment since we really, really wanted to see him early and leave for home.

Well, Dr. Boes saw me an hour before my arranged appointment.  Woohoooooo! He said, I know you guys want to get going home, so lets go over what we know.  He said he had another “complicated” patient and had experienced some luck in his treatment, so he felt fairly sure we would come up with a plan. Basically, The cisternogram did not reveal an apparent tear or leak in my dura, but he actually didn’t expect to find one, as Ehlers Danlos Syndrome alone could explain the otherwise, unexplainable symptoms I am experiencing.  He knows the pressure is a problem, especially in finding the right balance between low pressure headaches and high pressure headaches.  He doesn’t think a shunt is worth the risk in my case, and suggested a medication (I can’t remember the name!) that will help address the pain of a headache and tends to reduce spinal fluid pressure just slightly.  He feels confident that this new medication he is recommending and the old reliable (and dreaded because of side-effects), Diamox, would be the best treatment for now.   Lucky for me, he seems to really like my case, and when David told him that I didn’t have a headache last night (first time in months – and coincidentally the night after my pressure was relieved because of the spinal tap), he was totally bought in and seemingly committed to help my physician in Shreveport navigate the prescribed treatments, until we develop a solution I can live with. 

I truly wish I could say they found the problem and they fixed it. That has never been the case when dealing with Ehlers Danlos Syndrome. With all that ambiguity, it’s awfully nice to have some things that are non-negotiables:  My faith, my untiring love for my two beautiful daughters, Sydney and Aubrey, and my ever-growing love for David.  Upon this foundation, I feel capable of loving more, doing more and, yes, doing less. 


We just honked and waved goodbye to Minnesota.  Admittedly, I cried thinking about all that has happened this past week, and how happy I am to leave it behind.  I cannot wait to see Leslie and Charley. Headache or none –I’m done talking about that now.  











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