Thursday, April 14, 2011


Hi everyone,

Well I am scheduled back in to Dr. Siskin in Albany, NY May 9th first thing in the AM!

So why am I returning?

Things have returned to where they were and in some parts worse and in 1 part not as bad. Parts that are worse are my left hand and balance. One part that is better than it was but still is creeping back is my choking.

I did go for a couple of follow up ultrasounds in Barrie. And quite frankly I don't believe they see everything, heck my first said my right was more messed up than my left jugular and when Dr. S went in my right was beautiful, my left was the only one stenosed and my azygos had reflux. So I'm going for the gold standard as Zamboni terms it, the venogram. I want to be certain. If there isn't anything, fine I paid a hell of a lot to find out. If there is thank G_d I followed my instincts!

Also hearing from many others that the sigmoid and transverse sinuses are areas the IRs are finding issues in as well makes me want to see these for myself. Also I want May Thurners ruled out. My legs have been the worst MS wise from the start!

I raised $480.00 through a draw and am still trying to raise funds - whoever wins the draw is a very lucky person because they get a professionally built website by my awesome hubby. That $480 basically covers my stay in Albany at a good hotel that includes breakfast and a light welcome home meal Sunday to Thursday. Has great accessible rooms and a later check out time than others. So I know I will at least sleep well! Outside of nerves. And that I'll be able to safely bathe.

Being in a wheelchair for the most part sucks! If I have to go on like this fine but I can't take any worse. I've been worse off in ways before and I don't have a clue how I did it! It must have been my beautiful baby boy who had me fighting all the way. And of course my wonderfully supportive husband. Now I find emotionally it is harder and the physical effects are affecting me more. Going through the CCSVI fight here at home makes it so hard. I'm not talking trouble with my family, but trouble with my health care system not allowing us to have this covered here! Also I feel embarrassed raising funds and I feel guilty putting our family further into debt. It's crazy! Furthermore while this can do great things one of the negatives is constantly worrying over re-stenoses and then the accompaniment of horrific thoughts of trying to find funds to go back AGAIN. Seriously we better win the lotto! haha

I have to sit down and do a new video too. My walking has gotten so sketchy along with balance issues that I came back from Albany with, that I stopped going down to the basement after last summer and I barely go down to our main floor unless it's to get the heck out for a bit! I find the sensation on the bottom of my feet is still much more intense from time to time. Right after treatment it was all the time better but then the heat wave and my air con crashing I think killed it... So most things lasted about 2 months. But can't forget there were two things that seemed worse afterwards. I didn't have tremors in my left hand before or the bad balance issues.

What do I think of CCSVI - I think there is something huge to it. I do not believe it's placebo that people can come back and do so much more. That wasn't my case I didn't have one of the bigger miraculous results but still I did have small miracles, like holding my hubby's hand and walking from the car through my garage to the stairs there. That was huge! I regularly got out of the car and felt my legs would hold me without a walker or cane I just held on to the side of the car - nothing to hold the weight of my upper half off of my weak legs as I usually do that with the walkers! Pretty amazing to stand for a photo with my son too! Also I was able to handle heat to 28C that was unusual for me to be comfortable in.

So in closing I am going back to see if there's more to fix or refix. And we'll see how I am when I get back. meanwhile the price has gone up and where I paid 5k before this time will be 6400 minimum. If he decides I require stenting, which I doubt he will but may, it will be 2k more. Still a heck of a lot more reasonable than most if not all places... Still kills me that if they'd allow us to pay for it here it would cost $1500.00 - I can get lipo have that banding surgery in my tummy etc... but I CANNOT have a venogram with ballooning here!

Hoping everyone who wishes to be is out of the burning building! Peace light n' love - OOOH and Angioplasty For ALL!! Anything Less is Unacceptable!!



Tuesday, September 14, 2010

Tis September and -

I'm still waiting for October's scan. I'm looking forward to it and hoping both for and against the possible results if that makes any sense.

I'm hoping I've restenosed because then I can get retreated at some point and possibly see all the benefits I had gained and lost back. However, I am also hoping that there's no need to worry about going back for another treatment. I'm hoping this is just some sort of prolonged lull in the ongoing work of my body trying to figure things out and fix it's self. I'm hoping that things pick up again on their own. I try and think myself into that but it's very hard.

CCSVI and getting the treatment is exciting but after you've done it it's a whirlwind of emotions as well. Dealing with what your outcomes are can be difficult. Some things can make you so happy and others so sad and then again others that do both - it's very tiring and definitely plays with your head and heart.

I am very glad I had this done and would do it again in a heartbeat. I've always been willing to do things to get myself better now I face trying to take care of my body better.

Many come back from treatment thinking hey back to that life I was meant to have and throw caution to the wind partying it up if able to or simply going back to eating junk blah blah blah Or worse yet coming back and doing nothing to help the muscles wake up that haven't been used in ages!

My big trouble is diet. I live to eat instead of eat to live. I've meant to do the Best Bet Diet but I've been a bad girl, it is very hard and I keep wishing I had money for a cook or dietician to help me with it as it is so damned hard when you're a food slut such as myself.

Another problem is getting proper exercise for the limbs that haven't done so in ages. I was referred for physio but haven't had a phone call and I left a message regarding the wait but no reply... it sucks!

Anyhow here I am trying to deal with where I'm at, hoping that things just don't get worse :o)

Monday, August 23, 2010

Sad to say...

Well it saddens me to say this to everyone, but I'm pretty certain I've restenosed.

My best and immediate show (while on the table) is completely reversed. It disappeared directly after my left lower jugular was cleared and now it's fully back. What was it? Well at first I thought it was simply most of my MS hug but it was more than that and I didn't put it together until today. After I got up from the table I noticed the fronts of my thighs felt lighter too and the pain across my back had been relieved. Now I know this was part and parcel and instead of it just having been spasticty across my lower abdomen it was all of this area. I had been able to stand up straight longer, easier and it was because this was relieved. However now it's back.

Also my vision has begun to blur up again and wellsome other things too.

The good news - I know it worked. The bad news - for some reason it's stopped so now I'm going to have to PAY to have it done again and then what if I'm not stented or it restenoses again - I can't afford to have it done over and over again...

So for right now I am sitting tight until October when I go for my next scan in Barrie. We'll see what the scan says before I go on and bother my wonderful Interventional Radiologist.

Well, that's ma story for now. Still fighting the good fight and hoping that sooner rather than later we'll be able to have this done at home!

Monday, June 28, 2010

Well wadya know!

Hiya peeps,

K so I've kept pretty quiet about how I'm doing because I didn't see the mega miraculous results some others did. I still found some benefits that for anyone with MS and the load of symptoms I've had a relief from, release of anything is amazing!

I was so happy for my friends who are doing so well and just well... rolling with it and trying not to be down about my lack of being able to jump up and down. I went in realistic BUT that doesn't stop you from WANTING to have MORE - what a human condition eh? We always want more whether it's things, happiness, love, health, things... So anyhow I was just learning to cope with things. I even felt like maybe some things were backsliding and then today...

Today hubby had an early dentist appt so he left and after a long night I hoped for a sleep in BUT the munchkin marched in while Mommy was on the toilet having a morning pish. So anywho we went down and got breakfast after a quick cuddle, we dove into a bag of wanna be Crunch Berries *thumbs up* on those! And I moved around with the walker pretty easily so that was nice but didn't read anything into that... I was going to take him to his last day of school later blah blah blah. Hubby came home, went to his office in the house and my son went to watch some World Cup action.

K so anyhow afternoon rolls in and it was decided that Hubby would take him to school and I'd pick him up because we lost track of time and I couldn't scooter him there in time... So I went out with the scooter after a little deliberation. I went to the mall and was going to have a manicure - lost my good nail file on the trip and can't find a decent replacement that doesn't leave nail tares. Well got there and bumped into a fellow MSer whose also a scooterer (hehe). We got together before I left for the treatment and I've only been able to chat minimally with him since I returned. In part because of my major need for rest after everything and then also because I don't want someone to see me and not see huge changes and then lose hope. So anyways he loved what had happened for me etc... SO huge relief for me. Then off to pick up my son.

When I picked up my son I ran into a fellow parent whose friend has MS and is just learning about CCSVI yada yada and she asks if she can give her my info and I said YAH! Then I took my kid to a splash pad with that lady's nanny and her kids and met with other nannies, we hung out for a couple of hours, it was nice. Then we got to going home and I was a starvin' Marvin. So I came in, used the facilities and out we went and grabbed Pizza Hut :) (BORED YET? HANG ON IT'S JUST FRAMING) My son is in soccer and it's our responsibility to provide snacks tomorrow so we then headed to Wally World for some fruit and yogurt bars and juice boxes. Then we went home. Hubby went in with some bags and Ethan went in with the left over pizza and Mommy sat in the car waiting for her scooter to be brought to her door. SCRATCH THAT Mommy felt strong enough and had enough energy that she wanted to get up and go! SO I got out of the car closed the door used the side of the car to steady myself and also used it for support as I walked towards the garage. I reached the front before hubby came out the door inside our garage from the house. He came on down and asked if I wanted to give it a try and I said YES! So he offered an arm and I took it and got up the little step into the garage then rearranged the hold on his arm on my right side and walked to the steps and kept on going, I stopped at the facilities for a moment and then right on up the stairs to our room :) First person I called was my friend Brian that I had met with earlier to tell him of the new BONUS and he was very happy for me *smiles* I then called my best girlfriend a little later and now I'm telling all of you after posting it on facebook!

My legs still have a lack of sensation and are hard to get in motion but I think in time with physiotherapy I WILL get them back!

Hope that gave more hope to folks, it has to me :o)

Thursday, June 10, 2010

4 days post "Liberation"

Well howdy folks,

Sorry it's taken a bit but there are so many things going on, so many people and places etc... etc...

Everything went so well. I couldn't have asked for better. Months ago when I first learned of this I became concerned about stenting, I was frightened for a facebook friend heading to Poland and I told her don't let them stent you!!! She did and she was fine and I learned through her that basically stenting is safe it all depends on if you have a doctor who knows what they're doing basically. Not to mention what the stent is made of, I was concerned about whether or not I could have an MRI after I was stented if I had the stenting and my M.S. continued or for some other reason I required an MRI... Ginger laid my worries to rest. I began reading more from others who were learning and all the information taught me to relax!!

Anyhow when I went in for my procedure I was ready for stenting if necessary but thank G_d it wasn't. I was treated with angioplasty alone! My veins (those that could be seen fully) were not so bad that they'd collapse after the balloons were deflated :)

Interestingly I went into the procedure with a doppler that said I had a problem in my right jugular right subclavian and left subclavian. What was found on the venogram was my right jugular was beautiful! my lower left was not and my azygos was not and so those were the areas given venoplasty/angioplasty.

My doctor was lovely. When I arrived at his office I was sent to get my sedative, I returned and gave it to them to give to their nurse who would gather me when things were ready , take me to the operation suite and give me it and set me up for the procedure. The sedative makes you feel a little inebriated and honestly I don't recall fully getting changed. The nurses were lovely and did everything perfectly. One of them stayed at my head for nearly the entire procedure giving me caring strokes on the forehead keeping me calm as the doctor would have me take breaths and hold them intermittently while pictures were being taken and he wondered around inside of me. Before he put the catheter in of course he numbed the area with a couple of shots, the first was ouchy but I barely felt the second and then on we went :o)

Meanwhile my boys went and got a bite to eat and Denise (one of my Liberation angels) went off shopping, Denise and the boys came back shortly after it was done and I rested a bit and then got myself together with the help of the wonderful nurses. Then I received pain meds and got to meet with my doctor for a go over of everything. A cd would be put together for me of all the scans to pick up the following day. I actually went back a couple of days later picked up the scan and had a neck u/s to make sure the one nagioplasty on the left there had not restenosed. They can't see the azygos with the u/s so can't be 100% on that but my left jugular is flowing wonderfully :)

I noticed while on the table for my procedure that a good part of my MS hug lifted and I began to cry. After everything getting in our truck I noticed my legs seemed a little lighter and my right hand with the worst intention tremor was a little better. I pulled out a sheet of paper and I wrote my name follow by I Love You and showed it to my husband :) I then wrote I a heart and then the letter U and showed it to my son!! It looked perty legible hehe.

So then I didn't have the miraculous jumping and perfect walk but things were better, even if only a little or moderately. But now it's been 4 days and I'm seeing more, it's a bit of a rollercoaster but I notice a something different daily & it goes up and down.

Anywho it's past midnight and I'm barely coherent so I'm going to do something that takes little brains wait for my boys to get home and then go to sleep ;)

Night all!

Wednesday, June 2, 2010

Neurosurgeon yesterday was nice

Well he's feeling the nerve isn't truly pinched and says he has a worse protrusion in his back at present and wouldn't want a discectomy... He is ordering a new MRI seeing the last was 2009 and we'll see where we go from there.

During our meeting I told him I was going to have my CCSVI treated next week, his response was that if he had MS he'd be doing it too. So he's not a neurologist but he's in the neuro field and he'd be doing it too! NICE!

Anyhow, I'm not thrilled about the back problem not being fixed but if it shouldn't be then so be it. Maybe after my Liberation treatment I'll be able to move more easily and the pain of it etc... will go away :) In the meantime I have a nice new neurosurgeon whose going to order a new MRI for me to make sure things haven't gotten any worse.

On a separate note...

May 7th I noticed I was having symptoms of a UTI and went to a walk in. I was right I had bacterium present in my culture and so I went on antibiotics, macrobid to start. A couple of days in things were just as bad, no let up at all which I normally get with treatment, so cipro was prescribed. Things seemed to get a bit better and I made an appointment to go into my GP and tell her the news of my procedure and get a health check ok'd for the surgeon. DONE. I also did another urine sample to make sure all was alright on the kidney front because the walk in doc on the follow up visit said no bacteriuim but blood was present... So at the end of the day Thursday last week I gave another sample after seeing my GP and am awaiting news. This Am I woke up and found I had pain on my right flank and that's where you get kidney pain if there's an infection so I haven't been back to sleep since. Now the sun is up and birds are twittering like mad and I'm tired and achey and a little tummy sick :/.

I've looked up a new hospital near me and it has an emerge and a kidney specialty area so if this ends up being a kidney infection I know where I am going! I will call my GP's office soon as they're open to find out if I need to go or not :)

My Liberation cannot come soon enough BUT if I have this infection I'm glad I have 5 days in which to clear it up beforehand!!!!

Wish me luck! :o)

Sunday, May 30, 2010

Brain problem, blood problem, back problem BBB...

So it's 1 minute to the Monday before my Liberation as I begin this post.

Well it's getting closer and closer. It's a good thing too because I feel like I'm going into a flare right now. My left hand has begun having more tremors and feels more prickly numb. Also my back and legs have been having more fits and the spasticity is just too bloody much. I had considered asking the neuro about a baclofen pump several months ago but then got into the CCSVI shtuff. If this procedure doesn't help that will be in my future...

My back problem may still stand in my way and now that it's Monday I can say "today" I will be seeing yet another neurosurgeon to see if I can get interest in a discectomy again. Now that I have had to get the most recent on my medical wellbeing from my GP for my FSIR's office I have a ton of info on doctors thoughts on my back problem and it sure does piss me off because there's a strong consensus about the problem just a lack of getting something done about it. If after this Liberation I still have walking/spasticity issues with my legs I will push even harder for my back to be fixed because that can be causing a lot of this too! It could just all be my MS but I want to know for sure! I'm not sitting back and accepting any old thing, I'm going to know for sure before this is over!

Will update on how the neuro goes tomorrow morning.