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.  

Friday, June 19, 2015

Put extra Mayo on mine, please!

There's a lot to say, so I will try to find the shortest way through all of this, but since the last time I posted, I have had the spinal cord stimulator removed, where I recovered from, pretty darn well.  I have been walking every day and have returned to Stand Up Paddling again, which I do most every day. It's sort of comedic to see me, since I generally fall more than I'm up, but I'm getting better each time I give it a go.  David has been joining me on his SUP board and he seems to be enjoying it as well!

On our way to Rochestor, I began experiencing some pretty severe pain in the left side of my jaw. I bought just about everything on the (legal) market to kill the pain or numb my teeth, and thought it would hold me over until my already planned dentist appointment next week.  Not.

We pressed on and I managed to make it to my first appointment here at Mayo on Thursday morning.  The appointment was with the psychiatry/psychology department, where I did over 4 hours of cognitive function tests. I suspected it would reveal some significant memory issues, but really wasn't pleased at the other findings.  Basically, the doctor said my memory was fair (not good, and remembering names is very, very challenging), but that my higher order thinking that involves problem solving was seriously compromised. I also knew this, but didn't quite know how to explain it...which is actually part of the issue: ironically.  In lay terms, I know I need to get from point A to point B, but I get confused when I try and determine the steps it takes to get from A to B.  So, the short of it is, they are doing a PET scan on Tuesday to rule out any degenerative brain disease.

After my morning appointment, David located a dentist who could see me immediately.  Thankfully, it turned out to be a very good dentist, because I apparently clinch my teeth (HARD!) and cracked two teeth badly: one on top and one on bottom. As they drilled the bottom tooth (which felt the worst), they hit a nerve and I learned I could levitate.  Poor David could hear me screaming from the waiting room and was getting pretty anxious to get back there.  Well, they discovered the crack was a zig zag across the entirety of my tooth, so the Dentist had to send me immediately to an oral surgeon, as the only option was to extract my molar.  With a lot of happy gas, local anesthetic, and three hard pulls, my tooth came out - roots and all. Thank God, as otherwise, it would have involved surgery on the bone. I guess having loose connections paid off in that regard.  But, I still had the other tooth to deal with, so I had to return to the dentist, and thankfully, he was able to drill through the middle of the tooth without it breaking apart. He was able to avoid a root canal and simply put a temporary cap on it, that will last me until I get home.  He also fitted me for a device that he thinks will solve my headaches (he's not a humble man), since I clinch my teeth. I had a mouthpiece prior to all of this, but he suggested this was the wrong solution and fit me with one that covers just my front teeth and actually prevents my teeth from ever touching each other.  He called in a favor from his friend at the lab, they did an impression today, and I'll have that device ready to go before we leave here on Tuesday night.  Overall, my teeth are much better but my jaw feels like an 18 wheeler backed over it.  And let me just tell you that brushing and flossing doesn't prevent this, because I'm slightly OCD about that and my teeth had no cavities or issues other than the fact that I was breaking them to pieces while I slept.  How nice.

Oh ya...I failed to mention that our two day stay at Mayo has turned into a week-long stay.  Because they added the PET scan and after today's appointment with the headache specialist on the neurology team, he added a test called a cisternogram.  This doctor was very thorough and seemed to have a lot of good ideas leaving us both feeling like we will either leave here with a definitive diagnosis and solution or at least a plan to address the headaches.  The cisternogram is basically another spinal tap with some special type of contrast that will help them determine if I have a spinal dura leak.  Although they did an MRI a year ago to try as they suspected this same thing then, the doctor today suggested that an MRI is not nearly as conclusive as this test, as it can overlook a small leak.  So, the cisternogram will take place on Monday.  I guess they evaluate the results of this test at 24 hour, 48 hour and 72 hour intervals to see what happens, but the doctor said they would pretty well know what's going on, if anything, by the 48 hour mark.  Therefore, he scheduled me to return to see him late Tuesday afternoon, when he will review the results with me and if all is clear with those results, he will give me a medication regime to follow to try and resolve the headaches.  Of course, if the PET scan reveals some sort of degenerative brain disease, then we might discover the headaches are attributable to that disease process, and in that case, there may or may not be a way to resolve the headaches.

This afternoon, I also met with the original neurologist (Dr. K),  whom I saw last time I was here, and am really confident he knows what he's doing.  I guess he was the fourth person since we've arrived this week who called me "complicated," so I'm pretty sure I'm getting that tattoo'd on my forehead.  Dr. K also ordered an evaluation from the cognitive neurology specialist.  Unfortunately, that Dr can't see me until September, but Dr. K assured me that he is involving the head of the neurology department to urge him to see me before we leave next week.  He wants to get a better understanding of what is going on with my cognitive functioning, and if we are in fact, dealing with a degenerative brain disease, then he wants to know what it is.  He warned me that if that is the case,  there is likely not too much they can do about it.  He said he really didn't think I had Alzheimer's Disease because he felt like it would have shown up on a the previous MRI, but he said there was the possibility that we have just caught whatever disease this is, at its earliest stage and we, therefore, won't be able to determine what it is until we get another MRI in a few months, from which we can compare to previous MRI's.

At the moment, David and I are sufficiently overwhelmed, but terribly grateful for a very nice dentist who has made us swear we will take him out for a beer when we come back in September.  We are also very grateful for food delivery to our room from the local restaurants, rather than hotel room service (which they don't have). I am VERY grateful for noodles since I can only eat soft foods in my desperate attempt to avoid dry sockets.  We are incredibly humbled by the love, care and generosity we have received from all of you.  We feel wrapped up in God's love and know that whatever happens here in the next few days, we will make the best of it.  Our wedding anniversary is Monday, so we will definitely order in a special meal (that's supposed to make you laugh!).

I'm sure there is more...but I'm tired of writing and I'm pretty sure one friend in particular is very tired of reading (you know who you are!! :-) )...oh, and our Greek food was just delivered.  Oh boy...couscous for me...steak kabobs for my sweetie.  Life is good...