Talk about misdirected anger!

One of my greatest wishes for my second procedure was to be able to lose the cane.  I hated that damned cane!

What I realize now with all of the wisdom that three whole weeks bring is that the cane is not the problem.  I was so unstable and weak before the procedure that I could not even function in my own home without that cane.  Now I only take it with me out of the house.  Even then I don't lean on it as if my life depended on it.  It's just a tool to help me safely manage uneven sidewalks, curbs, or unfamiliar terrain for now. 

It wasn't about the cane.  It was all about ME.  Yes, a collective, "Duh!" is totally appropriate right now.  That poor innocent cane was the subject of all my frustration, sadness, and fear.  Sorry little guy!  I hate limitations, not you.  You and your outfit-coordinating friends in my collection have done nothing but stand quietly by doing exactly what you were meant to do.  You let me bang you with every step, drop you too often, and curse your very existence.

I'm sure if you had more than one point of contact with the ground, you would have tottered off and left me a long time ago!  Thanks for sticking with me.  Even though you had no choice, I am offering a belated, "Thank you."

I try to express my gratitude to everyone in my life who offers me support, emotionally or physically, or both.  If there is anyone out there who is feeling unappreciated by me, I offer my most humble, "Thank you!"

I couldn't get through life without the people, and yes, tools, that allow me to do what I do.

Note:  Please notice that on the right hand side of this page, under the "About me" box is a new box that says, "Subscribe via email."  This nifty little feature will send you an email link to my blog whenever I write a new post.  I added it upon request of friends who want to know how I'm doing, but forget to check the blog regularly.  Thanks to Amy for letting me know that such a tool exists.

EDSS 3.5?!?!

I had a fascinating appointment today with my neurologist, Dr. Tornatore.  He has been one of the rare neuros who has been excited about CCSVI since the beginning.  Today was no exception.

He came to get my husband and me from the waiting room.  Hugs for me and a handshake for my husband.  Then he motioned for me to walk with him to the exam room.  I handed him my cane and walked next to him all by myself!  I do have a flair for the dramatic!  He was impressed.

He wanted to hear all about my latest treatment.  I pulled out my disc full of images, as well as the written report.  I told him all about the amazing improvements that I have experienced over the past two and a half weeks.  We talked about the differences in my experience after each of my procedures.  He was listening so attentively, and taking lots of notes.

Then we moved on to the physical exam.  I was ready to really wow him!  He tested my reflexes and muscle strength.  What really struck him was the dramatic improvement in my ability to lift my feet at the ankle.  I have had foot drop on my right side for years.  I finally got an AFO with dorsiflexion assist in December.  I don't need it anymore!  Well, for as long as this treatment lasts, anyway.

Then he had me walk.  I'm still too weak to walk on my toes or heels for more than a few steps.  I am also not going to pass a field sobriety test walking heel-toe any time soon.  But you should see me walk his hallway without a cane or a wall for assistance!

He told me that he had me measured as a 6.0 on the Kurtzke EDSS scale before my CCSVI procedures.  This level says, "Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting."  I concurred.  This scale is used by neurologists to quantify disability in eight functional systems.  It is often criticized for primarily focusing on the legs, to the exclusion of other clinical changes.  But it is a simple way to evaluate walking.

Well today he assessed me at an EDSS of 3.5!!!!!!!!!!!!!!  This level says, "Fully ambulatory but with moderate disability in one FS and more than minimal disability in several others."  To earn that number I walked 500 feet up and down his hallway without a cane or touching a wall.  I did it with ease!  Well, at least until the last 20 feet or so, then it got a little tough, but I made it.  I was amazed.  I had never tested myself like that. 

I can't wait to tell my PT all about it when I start rehab with her tomorrow!  If she was impressed with me during my evaluation yesterday, this is really going to blow her away.

I wish there was some data on the results of a second venoplasty.  It would be so comforting to read that the second time around lasts much longer than the first.  Ha!  Wishful thinking, I know.  I guess that I am one of the guinea pigs who will provide that unofficial data for myself and others. 

I realize how lucky I am to be in this position.  I will make the most of it by documenting my progress, both forward and backward.  Although, let it be said that it is WAY more fun and easy to report the forward progress!

PT evaluation

I saw my favorite PT, Ginger this morning for the first time since December.  I didn't have time to make appointments with her after the first procedure in March before I started feeling badly again.

I was smarter and faster this time!  I'm still hoping that my veins stay open forever, but I'll take all the time I can get.  Also, working regularly with a PT will really help me objectively monitor my strength and balance.  Less guessing for me is a good thing.  She will be documenting my changes so I don't have to!  It is always nice to have a partner in crime.  And this one is being paid to do all of that monitoring stuff.  I just get to enjoy her company, and appreciate her wisdom and talent.

It was such a welcome surprise that Ginger knew enough about CCSVI to be much more informed that the average PT.  I had forgotten that I had added her to my email distribution list!  I was happy to fill her in on the spotty details. 

I feel so lucky to have found Ginger.  I have been seeing her off and on for many years.  When you find a PT who truly understands the needs and limitations of a person with MS, you hold on tight! 

We spent time catching up, then the actual eval began.  She could see immediately how much stronger I am than in December!  And this is before any actual rehab has begun!  I was so excited to see her reactions.  She told me that I had made her day.  I assured her that the feeling was mutual!

I explained to her how my muscles do not fatigue like they used to.  We decided that for the first time in our long history together that she could push me to do more.  She understands that with MS, if we fatigue my muscles they stop working, no matter how determined I am to make them work harder.  She always forced me to pace myself.  She was right.  I was frustrated with my body, but never with her.

But now we are rehabilitating a woman with "vascular compression" on her prescription, not MS!  The game has changed, and so the rules must change as well.  I never thought I'd see the day.  I am so grateful for this opportunity.

So I start therapy in earnest on Wednesday.  I will go twice a week for four weeks.  Then my insurance requires a reevaluation.  WHEN I have demonstrated what I anticipate will be awesome progress, I will get to continue seeing her.  "Awesome progress" has never been part of my PT vocabulary.  Often she would document the most minor improvements, but usually never enough to buy me as many sessions as I would have liked.  I am entering a brave new world for myself.  I am excited to see what this body can really do!

We are going to focus on leg and hip muscle strengthening, and core balance stuff.  I have never been this excited to exercise in my whole adult life.  I loved walking for exercise up through my first 10 years of MS.  Then waking for fun became increasingly more difficult, then impossible.  Walking for utility became challenging at some point, so exercise walking really faded to just a distant memory. :o(

It is difficult to imagine that my walking might improve to the point that I can do it for fun.  Heck, I just want to be able to walk well enough to do the grocery store easily, and take my girls back-to-school shopping!  My wishes are modest, but dreams cost nothing, so why not do it?

I see my neurologist tomorrow.  I am excited for him to see the same improvements that Ginger saw today.  The difference is that he saw me slipping downhill fast in June.  He will have an even greater appreciation of my new strength!

Tune in tomorrow for the report!

Funny story

I have been able to successfully cut back my baclofen dose at lunch and dinner to 10mg from my usual 20mg (I still need the full 20mg at wake up for now).  Awesome!

Today I felt a lot of tightness in my hamstrings, the place that always gives me the most trouble.  So I took 20mg of baclofen at lunch.  I didn't get any relief.  What is up???

Then I remembered that I biked really hard (at least for me) yesterday.  My muscles are SORE from exercising!  This is what regular people feel like the day after a good work out. 

It has been so long.  I forgot what regular feels like.

Busy, busy, busy

I have been doing a whole lot of nothing for so long.  O.K., that's not entirely true.  I take care of my family, cook, do laundry, drive carpools, etc. And I cannot forget the work I did to get retreated this summer.  But for the past several months it has all been done with almost Herculean effort. 

So on Saturday I did another grocery shop AND went even farther on my stationary bike.  Yes, I get the irony of that statement.  Sunday I went to Target and walked the whole damn store.  Then I went back on Monday to exchange some stuff.

Tuesday.  Uh oh.  I had trouble marching at my counter.  My legs just weren't up for pushing those bike pedals.  I know that I have been doing a lot, but was this just regular person fatigue or something far worse?  I admitted to my husband that I thought that I might be restenosing.  Remember, I'm the person who, just a few days ago, announced with pride that, with all of my experience I would definitely know if it was happening.

Well I am humbly here to tell you that I might be full of sh*t.  I just marched and biked longer than I have so far.  Take that Nicole, you big weenie!  Oh, how I wanted to be wrong.  I hope to be wrong for a long time, but I know my odds.  I guess that I am not as immune to the doubts as I thought I was.  Will any of us who have been Liberated ever be immune? 

Having doubts about just how long I will feel so well is not the worst problem in the world.  I could still be on the other side, just getting worse.  I'll take this problem any day, thank you very much.  I am well aware that there are probably thousands of people who are just getting worse.  They are waiting for their name to be called off of a long waiting list, or are trying to raise money to finance a trip to a clinic abroad.  There are even MSers who don't even know about CCSVI yet!  Hard to imagine that in Canada, where their media has been very active in reporting about CCSVI.

But here in the US, the biggest media stories are not about the successes.  Too often they are poorly researched, fear mongering stories about this newly named congenital condition and its treatment.  The impact of these stories has been to scare hospital administrators into second guessing the judgement of some great doctors. 

So much has changed in just the 5 months since I was first treated.  Who knows what the next 5 months, not to mention the next 5 years will bring!   Progress cannot come quickly enough for so many of us who are "out of wait."

1 Week Update

I am so happy that I began this blog so many months ago.  It has given me an invaluable tool to be able to revisit where I was one week after my first venogram.  I just read that post,"It's the little things..." from March 9th.

I feel much less anxious today than I did back then.  There were SO many unknowns in March.  Would I improve?  Would it last?  How much would I improve?  Would this treatment be the answer to my prayers?

Edited to add:  There are still many unknowns, but having past experience gives me great peace and strength to deal with all of these questions.  I'd just as soon have it all fixed on the first try, but that doesn't seem to be how this whole treatment is panning out for the majority of us. 

So much pressure to put on my poor veins and myself!  Today I can confidently say that this treatment DOES work for me.  It was not placebo.  Unfortunately, many of the improvements didn't last very long after that first treatment.  Losing my balance after being able to enjoy it for only a few short weeks was especially cruel.

I now know so much more about this procedure, and more importantly how my body responds to it.  I will trust my instincts more this time around.  I know that if symptoms begin reappearing or get worse, that I am most likely restenosing. 

But right now I just want to focus on feeling as well as I do!  I exercised for the first time a couple of days ago.  I was amazed that I was able to work my muscles to the point of feeling them burn.  What a delicious sensation.  For as long as I can remember, fatigue would overtake my muscles long before I could get to that point.  The day before my procedure I was unable to lift my knees so that my thigh was at a 90 degree angle.  If I got to 45 degrees I was lucky.  But then it would flop to the floor.  I couldn't do it more than a few times with each leg before they simply would not budge.  Fatigue.

So I stood at my kitchen counter on Thursday and slowly marched, getting those thighs horizontal TEN times each!  And I was able to control their return to the floor.  No flopping for me.  I went to the family room to do some of my floor exercises next.  That is were I felt the burn of muscles doing what they were intended to do.  It was exhilarating!

I took yesterday off from exercise because I had real life tasks to do.  I still have to pick and choose my battles.  Today is Saturday.  I am going to do it all again, and add the bike, too.  These may be baby steps that I am taking, but they are the steps that are moving me forward.

Nicole: a case study?

It is amazing what a person can do when she has decent balance!  I walk without a cane, although only in the house for now.  I go out at night alone!  I can do some of my balance-related PT exercises.  The fun never ends!

I say this with great humility, but I think that I am a great case study for this treatment.  Having done it twice I can now see what impact it has on my body in great detail.  It seems that my balance is the most sensitive to jugular stenosis.  I say that because it was the first thing to go when I began restenosing only three weeks after my first treatment.  And 24 hours after my second treatment, it is back!  Hallelujah!

Losing my balance was hard to miss when it happened. Many other symptoms worsened so slowly it was difficult to notice that it was happening. Now that everything is good again, I can see just how significantly the fatigue returned. It was sneaky though. In hindsight it is so obvious! I haven't "needed" a caffeine fix since my veins got fixed.

My feet have stayed pink since moments after the first procedure, so that seems to be a less sensitive symptom in my body.  Purple feet are a key visual indicator of CCSVI in Dr. Tornatore's opinion.  True, but in this body it was just the tip of the iceberg!  Although my feet remained pink, they became harder and harder to keep warm. This happened so slowly it was very difficult to see the change over time.

Swallowing problems didn't begin showing up again until the month or so before the second treatment.  I had more trouble coordinating my swallow, and began aspirating liquids again.  These problems were not happening with anywhere near the frequency that they did before the first treatment, but were definitely noticeable.  I find these swallowing symptoms most interesting because I am a speech-language pathologist.  I am trained to teach people how to protect their airways, and I couldn't protect my own!  Oh, the irony of it all!  But go ahead and stretch my jugulars, and the dysphagia magically disappears!

Those are my Deep Thoughts for today.