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)