Wednesday, May 19, 2010

Diana Gordon - Post Procedure

June 12 - I'm ba-a-a-ack!!! :)

It is 4 days after my angioplasty procedure (June 8, 2010), and I feel GREAT!! I am not only a Pisces (March 3, 1965), but I'm now a Gemini, also. ;)

I should mention that Tim Hortons can really KILL!! *LOL* We stopped at a "Timmies" on the way, and I got a blueberry fritter with a coffee.

Anyhoo... I took a bite of my fritter and a sip of my coffee (it really wasn't that large of a bite), and I couldn't swallow it, so it became lodged in my throat, cutting off my airway... I couldn't cough it out, either. Man,it was SCARY!! I had to open the car door and do my best to clear my throat and lean over to let gravity take over. Finally, it came out. Somehow, I don't crave their fritters anymore. *Grin*

My procedure took 1 hour and 10 minutes, because he found some surprises (to me). I was convinced, due to my doppler exam report, that my only problem was in my left jugular. Well... Lemme tell ya...

BOTH of my jugular veins were significantly stenosed at the base, which he ballooned, and then he moved onto my AZYGOS vein. The sweet doctor said it was so severely stenosed and twisted, that it was the worst he has ever seen. He tried just ballooning it, but when the balloon was deflated, it went right back to how it was originally. He then told me he had to use a stent.

From our previous conversations, I knew he ONLY uses stents when absolutely necessary. They are MRI friendly, and how the azygos vein is shaped, there is absolutely NO WAY it can migrate; it is shaped like a candy cane, and the stent could not get around the loopy part (technical term LOL). The severity of the anomaly made it appear somewhat like a bow tie, which leaves your imagination seeing something quite different from how it is supposed to be. He used a 6 cm stent.

During the procedure, lying on my back, I had a tickle in my throat, which caused me to cough. I looked up at the nurse who was stroking my hair and said, "I don't do that!!". I was shocked, in a good way. *Big Smile...*

While in recovery, I remember looking around, and I WAS READING!!! The blurriness had subsided within minutes of the treatment and I was reading things I would normally see as a bunch of fuzziness. That was totally amazing, and I was in awe. I didn't even want to blink, because I wanted to keep seeing how I haven't been able to for a long time. I haven't even attempted to read a book for pleasure, for well over a year, and before that, I always had 2 or 3 books on the go, plus technical manuals. I loved to read, and I can love it again. :) My vision is even better today than it was yesterday, so I can't wait to "see" what tomorrow will bring. LOL

The only pain I get is because of the 6 cm stent in my azygos vein. I have pain medication I take when it gets unbearable. I also have to take Plavix once a day, which is an anti-coagulant, because of the stent. I only have to take that for 6 months, then only low dose aspirin after that.

My fatigue is completely gone, as well as my brain fog. I have to practice some things, like my walking on my whole feet and talking; that's even improved since yesterday. It'll all improve over time. :) I ran up and down my stairs today, which is a remarkable improvement, and I will work on performing more things, to get more ease of function back. Practice, practice, practice. :)

The numbness in my hands is subsiding, where my thumbs are the only numb things left. I can type about 70-80 wpm now, and can write with so much more control. I am practicing my signature to get that back, because it's been about 3 years since I've had to leave that behind.

I can now swallow quickly, two or more times in a row!! I can drink water (or whatever), just like a normal functioning person; I guess that makes ME a normally functioning person!! YAY!!!!!

The doctor who performed my treatment is GREAT, and yes, the ballooning hurt, especially my azygos vein, because it was sooooo badly stenosed. It doesn't last long, though, because it goes away when the balloon deflates. I sucked it up 'cuz I'm a buttercup. ;)

My parents are absolutely wonderful and were with me 100% throughout this whole thing. They weren't allowed in the procedure room, but I'm sure they would have been, if they were allowed. I am just so lucky to have such terrific parents, who go above and beyond what is expected. Sheran and Neil Oberholzer, you really saved my life. :D

I hope and pray that every one of our brothers and sisters, who need this, have an easier time getting it. THAT'S what we're fighting for.

We’re also fighting for our children, nieces, nephews, cousins and their children… the list goes on. We are fighting something, that never should have never even been an argument.

June 15

I woke up this morning at about 5:30am, full of energy. I had my shower, and feel totally awake. The numbness in my whole hands is GONE!! No more numbness, even in my thumbs, until I get tired.

My eyesight is even better than yesterday. I woke up to NO PAIN because of the stent, as well, so I guess my body is getting used to having the extra piece of hardware.

I'm getting out of the habit of even reaching for the railing to go up the stairs now.

Next week I'll start looking for a job with renewed vigor. I am REALLY READY!!

I now have my life back. *Smile...*

June 25

I was going to update this yesterday, but I wanted to see if my new improvement was going to last, and it has!!

The night before last, I noticed that the numbness in my thumbs didn't come on near bedtime, like it normally did, and I woke up to complete numb-free hands yesterday. Again, it didn't come on last night, so I think it's gone.

I am up to approx. 80-90 wpm typing speed, because of the regained dexterity, and I'm working on getting to be over 100 wpm, just like I used to be. Can ANYTHING STOP ME??? I think NOT!! LOL

July 2

I started back at the gym and feel wonderful to be back. I feel strong, but I know enough not to overdo it, because I have muscles that can "ouch", if I am too aggressive. I absolutely love weight training, and will feel much better, when I start to see definition returning.

July 3

I rode my bike downtown today, and stopped at a paramedic station to ask about medical transport, for those unable to travel by plane to be treated, without medical assistance. This is the service that was mentioned:

I rode home and felt very strong and empowered.

Since then, I have been going to the gym and ride my bike daily.

July 9

I went for my 1 month follow-up Doppler ultra sound exam today, and it came back with perfect results. Angela, the technician at Dr. McDonald's office, said it was as if she scanned her own veins. That was music to my ears. :) Of course, I had to share the good news on Facebook. LOL

July 31

I know it's been a while since I've written any updates, and I apologize. I have been experiencing small improvements, and have met some incredible people (members of my new family), and have been enjoying the summer, as marked by my tan.

My eyesight has it's very good days, then I slide back just a bit to where it's a wee bit blurry, but I have to remember that this is normal, and to not wig out over it. Even when I slide back, I'm still so much better than I was. I really have to remember what I always say to others when this happens; to watch my water levels!! A dehydrated brain will not work properly!!! I go up and drink a glass of water (top up my water level), and wait a minute or two. I begin to feel better, right away, so my panic goes away.

The numbness in my hands is completely gone, except I sometimes feel a small amount of pins and needles, especially when I get tired, or when I pay attention to it (it's amazing how I don't notice anything like that at all, when I'm not concentrating on it :/) My hands have been numb for years, so I'm not surprised that they are still getting used to this new thing, called circulation. LOL

I have been going to a lady, who is getting her certification for Reflexology. I go to her once a week, and have noticed how amazing it makes me feel.

If you don't know about reflexology, it stimulates all areas of your body (to motivate blood flow), through points in your feet, and promotes healing.

I'm not finished healing, but I'm so far away from where I used to be, it's totally amazing.

August 5

I had my eyes tested today, and they were VERY thorough with their imaging of my eyes. Both my macula and retina are in perfect shape, and there is absolutely no sign of neuritis. That is music to my eyes. *grin*

I guess I have to admit, that what is left, is *whispering* due to age. :/

September 8

I had my 3-month follow-up today, and Angela said everything is running absolutely perfectly, I'm glad to say. I began this journey at an EDSS score of 3, in August I assessed myself at a 1, and now, I'm down to a BIG FAT ZERO!!! EDSS is a game where high score DOES NOT WIN!! It's like golf in that respect, but I play this game much better; I am playing to WIN!! *Smile...*

This whole MS/CCSVI journey has been quite an awesome experience, to see both sides of this, and I have met the most incredible people imaginable. The grass definitely is greener on this side of the fence. The fight to have this simple angioplasty approved for everyone in Canada who needs it, isn't over yet, but we're going to win!!

I have my game face on!! *Smile...*

October 15

My eyesight has "un-blurred", and eventhough I expect it to go in and out of blurriness until it sticks (just like my numb thumbs did), I know it isn't due to the aging process afterall. It's starting to re-blurr, but tomorrow is yet another day, and tomorrow just may be the day that clear eye sight comes to stay. I'm loving it!! The only thing after that to improve is my speech. If I'm going to sound drunk, I at least want to BE drunk. LOL

December 8


I have also had my 6 month doppler exam, and my blood is flowing in the proper direction, with no evidence of CCSVI.

I am in the midst of trying to get back into my career as a CAD Designer and was in a class for 3 weeks called Access to Apprenticeship, which gave me a lot of information of how to go about getting into an apprenticeship to "learn on the job". I have 2 job developers looking for me, who have contacts and experience to hopefully find a job for me that I can call my own and also call it a career; I'm tired of just jobs.

February 3, 2011

I know it's been a while since my last update, but there really hasn't been much to report... until now. ;)

I thought that age was beginning to catch up with me when my eyesight decided to stay a tad blurry, until January 30, when it "snapped" clear at about 4:00pm, and stayed like that until 11:00pm when I went to bed. I woke up to it being blurry again, but at least I knew I was not done improving, and there was still hope. When it clears, it feels amazing. I know now, that when I feel a bit tired and kind of draggy, it's because of my eyesight and how much I strain to see; I'm not used to wearing glasses, so I don't... I don't want my eyes to get used to them, which would mean I would never improve.

On February 1st, My eyes "snapped" clear again in the evening, and remained like that again, until I went to bed; I was worried about going to sleep, because I didn't want the clear to go away, and wake up to blurry again. That didn't happen, and my eyesight has been clear since. I am so happy!!!

February 18

On February 14th, I had an eye-opening experience; I googled Plavix, to check out the side effects, and found that why the lingering pain in the ass improvements that are better than they were pre-procedure, but haven't gotten as good as I want, are all listed as side effects of this drug. No wonder I HATE pharmaceuticals!! I already took it on the 14th, but that's it!!

Here's what it says:

"What are the possible side effects of clopidogrel (Plavix)?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Stop using clopidogrel and call your doctor at once if you have any of these serious side effects:

* nosebleed or other bleeding that will not stop;
* black, bloody, or tarry stools;
* coughing up blood or vomit that looks like coffee grounds;
* chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;
* sudden numbness or weakness, especially on one side of the body;
* sudden headache, confusion, problems with vision, speech, or balance; or
* pale skin, easy bruising or bleeding, weakness, fever, and urinating more or less than usual.

Less serious side effects may include:

* stomach pain;
* runny or stuffy nose, cough, sore throat; or
* mild headache or dizziness."

Nice, huh?

I was told to only take it for 6 months, because of my stent, but I figured, "What harm would it do if I took it until my supply is gone?" I was sooooooo wrong!!

June 10, 2011

Well, it's been a while since I've posted an update. It is over a year ago since I was treated for CCSVI and I feel fabulous!! I have not reverted to anything I felt pre-procedure, thankfully.

I am planning on going to college to take something I wish I had taken years ago, before the symptoms of CCSVI put their hooks in me, and stopped my life in its tracks. I am going to take Mechanical Engineering Technology - Automotive Manufacturing. What a mouthful!! I am tired of chasing something I may not ever catch without the proper qualifications, so I'm just going to bite the bullet and "get 'er done". It's going to be tough, but it'll be necessary to get to where I want to be. The course is a 3 year co-op program, and quite a commitment.



Saturday, May 8, 2010

Diana Gordon - Pre-procedure - May 8, 2010

My very first attack was 13 years ago, but who knows for how long before that, that I was feeling some effects and symptoms that I didn't recognize. I was clinically diagnosed with RRMS on July 9, 2008, after many years of misdiagnosis, including a brain tumor. Since I was definitively diagnosed, I was then on a mission to find out how I could really beat this "thing". :) I will love to know that I'm really not a clutz. LOL

I think it is wise to document how I'm feeling before I am "fixed". I really don't like using the word "Liberated", because that word is way over-used. I like to call it what it means to me. There is something wrong with my left jugular vein, and I am going to have it repaired, or "fixed". If I say "Liberated", that word almost makes the whole thing seem hokey, but it is VERY real to me.

My biological father died from complications due to MS on May 6, 2004 and I'll bet he had CCSVI, possibly in his left jugular vein, like me; anything physical in nature, can be passed down, genetically. I have it, and the odds that my lovely daughter Gessica has it, is great. I'm urging her to get tested, but she's an adult, and I can't force her to, like I could, when she was young and under my supervision. Needless to say, it scares me to death, if she doesn't; I don't want her to experience all of this, like I have.

Anyway, back to what I'm feeling, prior to my procedure, which is scheduled on June 8, 2010.

Well, I should start first, with my symptoms.

1. Numbness in both of my forarms and tingling hands (feeling asleep), which makes it very difficult to type

2. Speech is very slurred, especially when I get tired. Many words are difficult to pronounce clearly.

3. My vision is blurry. I can see, but to see fine print is very difficult and straining. I am always walking around, being quite dizzy. It's not vertigo, as I've had that; it's very difficult to describe.

4. Fine motor skills are suffering, I believe because of the numbness. My handwriting really sucks, and my typing isn't much better, although, you can read it. I had to give up my signature, because I can never write it the same way twice.

5. I call what I'm feeling, a body fist, where all of me tightens, like clenching. I can't relax and a friend gave me a perfect descriptor for it: Like the tin man.

6. Brain fog is incredible, although I fight it as much as I can, but that is completely exhausting. I forget the little things, and write check lists, so I don't forget things I need to do, but then I forget to look at my list. :/

7. The fatigue I feel is like nothing I ever experienced before this. I can't just "suck it up, because I'm a buttercup". It feels like I've been picked up by the tail, spun around and flung at a wall. It totally whacks me out.

8. My balance isn't too bad, but I'm a little off and tend to bounce off of walls unless I grab onto something to steady my balance, and I have to hold onto railings when going down most sets of stairs. I no longer possess confidence when trying to do something that requires balance or ease of movement.

9. I feel very shakey, almost nervous in nature... so weird.

10. I have difficulty swallowing and can't swallow quickly, twice in a row; I have to take some liquid in my mouth, swallow, then take some more and swallow, etc.

11. I can't cough to dislodge anything from my throat if it gets stuck there, and has resulted in my airway to be blocked on several occasions.

12. I can fall asleep, but I can't stay asleep for a whole night, although my sleep patterns have improved since being on LDN (Low Dose Naltrexone). I'm going to stop using that, after I'm finished the 7 capsules I have. I am so anti-drug, even taking that makes me feel uncomfortable, even though it is in only 3 mg dosages.

I hope I will be okay when I go off of it. I don't want to ever experience another relapse. The "body fist" is a mild relapse, when compared to other ones I've had in the past. I will not miss any of it, once it's gone. Of course, I hope it will be gone forever. I miss who I am... I've been away for a little while, but I'll be back!!

I hope to get back to work, as soon as I possibly can. I want so much to get my old career back, in CAD Design. I loved it so much, and really feel I can be better at it, this time around. :) You may laugh, but I really want to be a clean freak again... I used to absolutely LOVE to clean. I took a lot of pride in it.

I would be VERY appreciative of everything and everyone around me, because I know what it's like to lose everything, at least know what it feels to be at risk of losing everything. I want to be a contributor to society, not a drain. I want my life back, plain and simple.