None of us slept well last night. I had stirred up so many emotions writing my previous note I had a hard time getting past feeling guilty for passing my vein abnormalities along to Jon, my 28 year old son. I convinced myself he now faced an uncertain future with unwelcome similarities to my 31 years with MS. I cried, a lot. Naomi, Jon’s fiancé, woke up with a stomach ache and Jon had a splitting headache. This was not a good start to a day where two of us would be treated for CCSVI and the other would carry the burden of taking care of everything else we needed.
Because Jon and I were not allowed to eat or drink past midnight, both of our ailments worsened as the morning unfolded. Jon needed food to stabilize his head and my eyes were screaming for moisture from too many tears lost. We got lost on the way to the clinic, despite having GPS on board and successfully going there several times this week already. Nerves? You betcha! Jon was the only driver allowed on the rental agreement, so we thought he could drive Naomi and I, then return the car to the hotel and take the shuttle when the time came for his appointment. Things didn’t go as planned, though.
Immediately upon arriving at the clinic, Jon backtracked and said he would stay instead of waiting at the hotel. I could see he was struggling ~ the uncertainty of the day was getting to him.
Imagine reporting for CCSVI treatment not even knowing what disease you had, never mind what the treatment would look like and if it would even treat your symptoms. Jon isn’t on Facebook; he’s attended a few of our meetings, but that’s it. Sure, he’s wondered before if he has MS, but remember at least two neuros told him years before he didn’t?
Jon was about to go from zero to two hundred in terms of personal CCSVI and MS discovery in less than 5 hours. And, I couldn't be with him for most of it. More guilt...
Moments after being whisked away to get prepped for treatment, my phone rang. It was Dr. Hewett wanting to deliver the news to Jon about what diagnosis his MRI revealed. I handed the phone to Naomi and she took it to Jon in the nearby waiting room. I was left alone with my thoughts about whether my son was now being told he had MS or even something else like Parkinson’s (his grandfather had it) or a brain tumour. It was these thoughts that preoccupied my mind as I was rolled into the treatment room.
My treatment was painless, but I remained aware of what was going on through much of it. I remember making the decision to close my eyes and drift off for a minute or so or to listen to Dr. Arata and his staff. The doctor often made remarks to me as he went along and answered my questions. I didn’t feel my left jugular, what I thought was my major problem, or my right jugular being ballooned more than a little bit, even though the balloon sizes went as high as 26mm. I remarked how quickly the doctor deflated them, unlike Albany where they are inflated a full two minutes each. Different styles and approaches to treatment – I love it! The more doctors debate how best to treat CCSVI the more people will be treated instead of being forced to wait for endless imaging studies.
Dr. Arata had mentioned the possibility of an azygos compression in my consultation the day before. I know from Seattle’s presentation (thanks Kathleen!) that COMPRESSION = SECONDARY CCSVI = STENT. But I also knew these were extraordinarily well tolerated in the azygos. During treatment, the compression was found higher than initially thought. Instead of being down in the hemiazygos near my belly button, it was in the azygos portion that crossed over my heart. During my first venoplasty, I was ballooned five times in various spots along this same stretch of my azygos. So Dr. Arata stented my azygos with (to me) a monster stent – 14mm x 80mm. This has to fight against the pressure of my beating heart and spinal column to carve out enough space for my azygos to flow.
Now in recovery, I count the minutes until I finally see Jon appear. It’s never good for a mom to see her child with wires and IVs hanging everywhere; I was both reassured and worried as his body language wasn’t good. We lay side by side in recovery for the next two hours (he wouldn’t let Naomi take a picture of us). I learned they stented his azygos too, but it wasn’t until Dr. Arata appeared that we learned the placement and size of stents were identical. In fact, both treatments were identical. Dr. Arata shook his head and remarked how amazed he was with the similarities of our veins. I asked him if he was going to write a paper on it and he said he should.
Remember all the hoopla coming from neurologists that claims we don’t know if CCSVI is a result of MS because it seems length of time with the disease is linked to CCSVI severity? The stenoses were seen as artefacts of the MS disease process. We were told why treat the remnants of the disease because such treatment could never alter the course of the illness.
To this I say “bulls***!”
I’ve had MS for 31 years; Jon is only 28 years old.
Oh, and significantly, during that phone call today with Dr. Hewett, Jon was told he does NOT have MS.
~Sandra
Part 1 here: http://www.facebook.com/notes/ccsvi-at-ubc-ms-clinic-information-and-support/a-mother-and-son-journey-step-1/10150090456692734
part 2 http://www.facebook.com/note.php?note_id=10150091172737734&id=182832983940&ref=mf