As you all know I was super excited about getting the Doppler Ultrasound to see if I had CCSVI. I did NOT know that this test was actually going to be painful since it lasted 2 hours and they contorted my neck all sorts of weird ways and made me stay in those painful positions for too long! Thank you MS for making my body so tender that this was excruciating! I didn't know what to think when I heard the doctor say "good news and bad news, your veins looks perfectly healthy!", as if that's supposed to make me feel better!? A person without MS might think it great news, but I was really counting on this as another option to try to get to the bottom of this mess!! :( My little heart was broken as we drove away from the Vascular Surgeon's office with feelings of confusion, fear, anger and defeat, to name a few. But the next day I conferred with my fellow MSers online and so many of them confirmed that the docs missed the vein blockages when they did the ultrasound on them too and that the only way to really find out what was blocked was to proceed with the invasive MRV which is the actual procedure to unblock veins. Think angioplasty, going in through the groin and all the way up to the chest and neck and then unblocking or expanding whatever vein needs it, if any. The doc didn't want to do this without concrete proof that there was something to unblock 'cause the procedure does carry risks that he didn't think were worth it. I told him that plenty of people had had the ultrasound which showed perfect veins only to get the MRV and find that they had blockages in the major veins afterall!! He said I need to find a neurologist willing to insist on this and he'll do it, otherwise he won't. I read that there is actually a protocol for Dr. Zamboni's way of doing the Doppler Ultrasound that actually finds blockages without doing the MRV first, I'll have to check with the doc on this as well. I'm not dying to have this invasive procedure done by any means but what would you rather have some pain and a chance of complications but possibly a better life? Or an uncertain, painful life with many terrifying question marks of what's to come?? I'll take my chances with the CCSVI if possible thankyouverymuch.
Great news to report though! I told y'all last post that my GYN had found a lump on one of the twins, lol, and sent me to do a Mammogram and Ultrasound. I had this done last week and the girls are PERFECTLY healthy, nary a lump or bump or anything bad to report. :) And the mammogram was not painful like I expected it to be, woohooo!! Learned a lot about that particular part of our anatomy. Did u know that what boys like to think of as fun bags are actually little factories that are activated every month by hormones to get ready for milk production if need be? That's where all the pain comes from every month. And did u know that the part of the boobage that's right by the under arm handles over 40% of the work of the whole tata?? That's why that part's most likely to hurt the worse each month. I'm sure the ones that are moms already know this but this blew my mind. ;) I also learned that breast pain is the 1 part of our bodies where pain is actually a good thing, 'cause if you have cancer then you wouldn't hurt, it'd just be a lump, so pain is a good thing, go figure! :) Needless to say I have a new found respect for my chesticles! ;-)
Other than that, nothing else new is happening with my health and no news in my world is good news! My body's finally chilling out on me and not putting me through hell every month, knock on wood. Let's hope that this break continues 'cause it feels pretty damn great to feel normal again. :) :)
Stay tuned to find out about other CCSVI diagnostic possibilities and about how fabulous it is to be me right now. Doesn't take much to make me happy just give me 4 properly functioning limbs, a non cloudy brain and enough energy to do my thang and I'm good. ;-)
2 comments:
I was intensely curious to find out if CCSVI would work for you. I wish you were working with someone who knew more about CCSVI in MS. It's hard to trust the judgment of someone in another specialty who knows less about MS than you do. I encountered that with an opthamologist. I asked him if my floaters were the result of my MS. He said, "I've had floaters since I was 20." Totally unsympathetic. I asked my neurologist about the floaters, and he said they were "definitely" caused by MS.
I loved the term "chesticles." :-) I have fibrocystic breast disease; a lot of women do. I never knew that the pain was a good thing or why it occurs under the arm. Thank you for explaining that. Now I have one less thing to worry about!
LOL Glad I could shed some light on your situation Christine, I'll have to learn more about Fibrocystic Breast Disease. I was slightly terrified as to why they were hurting as bad as they were, especially after the "lump" idea the doc put in my head! I'm so glad sometimes that drs. can be wrong more often than they're right! ;-)
I've not given up on the CCSVI thing yet, I do think I have it, we love to blame the MS for the dizziness, headaches, heat sensitivity, etc that happens to us when it's been proven by people getting better from these symptoms that it's CCCSVI that causes these horrible symptoms NOT just MS. I learned about 1 neurologist that has knowledge of CCSVI here in Houston so I'm going to make an appointment and see if I can get re-tested, maybe with Dr. Zamboni's protocol way of diagnosing CCSVI which seems to work better than the regular diagnostic testing. Here's the link to Zamboni's protocol, pretty cool = http://ccsvism.xoom.it/ISNVD/Other/Abstract-Guerra.pdf I'm def going to show that to whatever neurologist and vein expert I end up with. This is me not freaking out but taking the initial news in stride. No point in losing it, especially after hearing from so many others that an initial clean Doppler Ultrasound does not a healthy vein system make! I'll keep ya posted. :)
And PS that ophthalmologist is blind himself, what does he know! LOL You should call him Dr. Magoo, betcha that'd be pretty accurate! ;-)
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