Friday, July 23, 2010

Patience. Perserverance. Hope. (5 weeks post-procedure)

I was waiting. And I hate doing that. But I wanted some fantastic news to report in my next post... except nothing earth shattering has happened recovery-wise. In fact, I'm not even sure if I can say "steady as she goes" because that wouldn't be very accurate. It's a constant flux of symptoms. It's exhausting to obsess about how I'm feeling every second of every day. I'm tired of obsessing about it.

Of course, there are other factors at play that determine how I'm feeling. First of all, I haven't been too diligent with my diet. Too much fruit, not enough veggies, not rotating foods... and oh yeah, last night I ate cheese pizza for the firs time in 18 months. Real cheese, real gluten... real tummy ache. In fact, right now I have a big ball of something in my stomach. Probably that delicious, glutenous, chewy pizza crust. While I'm stuffing my face it's a fantastic idea and totally worth it. Hours and days later? Not so much. It all started with one piece of hot, crusty bread at Carrabas's a couple of weeks ago. Then I snuck a couple of ginger snaps. Then, a bite of a sugar cookie. Bad Susie. So now I'm back on track. I begged my husband to be the food police and he agreed. I won't like him when he's doing it but it's what I need to do to stay on the straight and narrow.

And the pizza incident, by the way? Totally pathetic, secret eating. The hubs was at work. Some friends dropped it off. I shoveled it in and immediately regretted it. So sad.

Then there's lack of sleep and fatigue, the nemesis of every person with MS, just waiting in the wings for a comeback. I started physical therapy a couple of weeks ago. First time since February and post-procedure and thoroughly exhuasting. I have new therapist (the clinic director, in fact - all of the staff has changed except for one therapist). I like his approach, more so than my previous therapist's and am hopeful that it will lead to great results. I know for a fact that my balance and walking is better, even just marginally, because the one therapist left that worked there the last go 'round has commented a couple of times "there's no way you would've been able to do that before". Susie:1 MS:0

I tried my best to explain CCSVI in the most truncated version possible. He was skeptical, to say the least. Until I told him about 90% absence of spasticity in my legs. To which he replied, "That's not placebo. You can't fake that." Susie:2 MS:0

He asked me what doctor did it. I told him I couldn't say. And then I told him to not put it in the report to my neurologist (who still doesn't know I did it but prescribed the therapy for me so he'll get regular updates). He looked at me like I'd had it done in an alley with a rusty knife. Finally he said,"I'll tell him it's the Ampyra or hypnosis or something like that." Susie:3 MS:0

Back to sleepyland: When I'm tired, I get around worse and then I think that any improvements were all in my head. But I still stupidly try to do everything I would do when I'm not feeling tired. And, for reasons I will explain later, the worry monster has made another appearance which severely affects my sleeping habits. He's settled in quite nicely. I really want him to leave. Susie:3 MS:1

On top of that, a new comment was posted on my youtube account about my videos: "Unless you put up the caption for the pre and post videos, there is no way to tell the difference between the two videos. No change on right foot and still need to balance using the wall. Sorry it didn't work out."

My response: "Wow. Go tell some kids that Santa Claus doesn't exist and ruin their day instead. You're wrong. The time difference on each video is proof alone."

I didn't want that sourpuss's comment to get to me. But it did. I really wanted to say eff you, but I would never. Yes, sometimes it's called for. But I just don't have the cojones for that. That dude really ruined my day. And the day after that. To say I was in "a mood" would be an understatement. Way to go, youtube jacknut. Why do people do that? I didn't post those videos for naysayers to pop my confidence balloon. I'm looking for validation. Aren't we all? Even my response is proof of that. It's about believing in something and wanting reinforcement.

This happened about a week after I had a one-month follow up with my Interventional Radiologist. On July 12th I went for an MRV (an MRI of your veins) of my head, neck and chest. It's a way for my doc to see if all the areas he ballooned in my jugular veins are still open. My appointment was on the 14th. Thank goodness Keith went with me because it was a lot of information to absorb.

The status: all three areas are all still open, except the left upper internal jugular vein (behind my ear) which is looking slightly narrowed. But, he said that could just be anatomical - and if it isn't, it will need a stent at some point in the future.

The interesting news: on the MRV of my head, he found that my right sigmoid sinus is almost completely occluded - to the point where all of the blood draining from my brain is only draining down my left side jugular back to my heart. Sigmoid sinus, you ask? What's that? Find out here. Can it be fixed? Yes. But, it seems a bit trickier - it's just inside my skull, almost to the top of my earlobe. And it will definitely need a stent because it's so severe.

Sidetrack: What's the big deal with stents? Well first of all, it's a permanently placed foreign object in your body. Once those suckers are in, there's no turning back. They're more painful and require a longer recover along with blood thinners for about 6 months and blood work twice a week to make sure the blood thinners are working (because you don't want a blood clot). One of the blood thinners prescribed, Lovenox, is a very expensive injection - with insurance. And there's still a chance that even with a stent the vein could narrow again.

This news blew my mind. Does it mean I'll see more improvement? Not sure. But it does make sense that I've only seen marginal improvements to date, because not all of the problems areas have been re-opened.

When can it be fixed? Well, my doc consulted with a neuro interventional radiologist that he works with who said it can and should be done. And my doc has done it before. To get more information/feedback he's attending a Professional Symposium on CCSVI, where he's going to present my case. (Pretty cool; and it's going to be recorded so I can watch it after the fact.)

I'm a little hesitant. The main areas of focus in CCSVI research (so far) have been the jugular and azygous veins. The sigmoid drains to the jugulars, though. The wheels in my brain started spinning as soon as we left the appointment. I sent a message to the Chief of Radiology/host of the symposium/champion of CCSVI on, where he has graciously made himself available to a hardcore onslaught of questions from desperate MSers. His response: "That is a worrisome issue. I would not myself treat such a problem, if it was real. I would work with my neurointerventionalist as a team." Ohhhh-kay. I responded back to ask what about it specifically was worrisome... so we'll see what he has to say.

My doctor did consult with a neurointerventionalist and I have complete confidence in him. I'm 95% sure I'm ready to do this. He said he could schedule it for August or September. He wants me to follow up with him when he gets back from the symposium... which is next week.

If I could just get through the next few days... at least for some news. Then I have to decide what I'm going to do.

Thursday, July 1, 2010

July 1, 2010 13 days post-procedure (celebrating little victories)

I know I'm neurotic and it's not that hard to make me cry.  I blush with shocking quickness and I err on the side of passive-aggressive, avoiding confrontations in every way possible.  I like to laugh and I'm goofy - I've embraced my clutziness.  That's my succint emotional profile.  Until about two weeks ago, anyway.  Right now?  I'm a mess.  I've found all of these dark corners in my brain and subtle sparks of feelings that I didn't know even existed.  A veritable panoply  - enough to put a bonafied crazy to shame.  Let's list them off, shall we?

   1. hope
   2. anger
   3. grief
   4. frustration
   5. elation
   6. giddiness
   7. despair
   8. hopelessness
   9. joy
  10. resignation
  11. jealousy
  12. pride
  13. indignation
  14. happiness
  15. fear
  16. worry
  17. self pity/general sad-sackery

The last is my favorite.  It's so easy to feel sorry for myself and to forget that I made all of this happen.  On my own. Well, after I was pointed in the right direction anyway.  But I took the initiative, I started the search for a local doctor supportive of CCSVI in April.  So in just a little over 2 months I've managed to track someone down and make it happen.  A doctor who has now (so I've been told) said he wants to make this his "life's work".  I did that.  Pretty badass.

But I'm also guilty of putting all my eggs in the CCSVI basket - and I've already admitted to doing that.  Especially when you see a before video like this and an after like this - not even 24 hours later, how can you not?!  I have to repeatedly remind myself that Denise Manley (the woman in the video), God love her, is very blessed and lucky but not an example of status quo.  So much so, in fact, that there's a facebook support group titled "Post CCSVI Slow Recovery" with 269 members.  One of the doctors in Poland, Dr. Simka, tells his patients to give it three to six months.  And there are many variables.  The two biggies:

  • When were you diagnosed? 
  • Where are you on the EDSS or Expanded Disability Status Scale?  The range is 0 (perfectly healthy) to 10 (dead).  I'm a 6.5: "constant bi-lateral assistance (canes, crutches, braces) required to walk 20 meters without resting", in case you're curious. 

Those are some loaded questions.  Maybe you were diagnosed in 2007 but started with onset symptoms in 2000 - it just took that long for a diagnosis.  Or you could be a 0 on the EDSS but have crushing fatigue, cognitive problems, issues with speech or hearing.  Thing is, no two people have the same disease course.  Period. Ever. So how can you have any accurate expectations of what your recovery will be like?  You get your blockages fixed and the blood starts to move freely but then what about all of the iron deposits on your brain and/or spine and years of nerve damage?  Why does it have to be so freaking complicated?

So here I am, almost two weeks post-procedure.  Have I shown improvements?  Yes, absolutely.  As many as I'd hoped for?  Not even.  But that's my fault.  Shame on Susie.  And my husband warned me.  I don't like to acquiese on this one.  I am eternally optimistic and he is the complete opposite.  But I need that right now - not complete skepticism, just a rational voice, for crying out loud.  I am such a sucker sometimes.  Don't get me wrong - in no way was I duped.  I had a legitimate problem that needed to be fixed.  Finally, something in this disease that can be fixed.  But it's not happening fast enough for me.  Gah!

Infamous list-maker that I am, I documented all of my symptoms etc prior to going in on June 18th.  I also got footage of me walking.  I wished I had gone more in depth - shown how bad my balance and spastiticty were, for example.  But it's too late to do anything about that now.  Here's my before list (with more sensitive topics removed to spare me some dignity):


Current MS symptoms (diagnosed 10/2001; last relapse 07/2006):

numbness (middle of back down to feet)
cold feet
cold sensation in legs
tingling/creepy crawly sensation in legs
weakness (both legs and feet – worse on the left side)
balance problems
proprioception problems
involuntary leg twitching (in evenings)
left foot drop
spasticity in legs and back (can't bend left knee unassisted)
clonus in both feet and lower back
heat intolerance
neurogenic bladder (always feel like I have to pee)
unable to empty bladder
minor fine motor skill problems with hands (buttoning shirts, etc)
double vision when over heated or anxious

Current medications:
Ampyra 10 mg 2x/day
Flomax 0.4 mg 1x/day
Novantrone IV every 4 mos (1 dose left)
Toviaz 4 mg 1x/day
Restoril 15 mg as needed (app 1x/mo)
Xanax .25 mg as needed (app 1x/mo)

Current supplements:
Candex 3x/day
Probiotic 3x/day
L-glutamine 500 mg 3x/day
Biotin 1000 mcg 1x/day
Vitamin D3 5000 IU 1x/day

Diet: omit soy, dairy, gluten, alcohol, refined sugars, red meat and limit fruit.

Currently have/use the following medical equipment:
3 wheeled walker
hand controls on car
forearm crutches
single prong cane
quad cane
AFO for left foot
bath seat

Click here for my before video.

I started to keep track of my post-procedure symptoms and any changes in a notebook.  Here's what I've written so far:
Venogram/Venoplasty performed 6/18/10
Improvements include:
  • warmer feet
  • spasticity gone (legs no longer tense and then relax when I stand up after sitting or laying down)
  • clonus improved (gone from 8-10 beats to 2)
  • easier to go to the bathroom/empty bladder
  • sleeping better
  • only got up once during the night to go to the bathroom instead of the usual 2-4 times (with meds)
  • feet are not hypersensitive to touch
  • L'hermittes sign gone
  • legs are less numb
  • feel sturdier
  • usually by 3:00 I'm ready for a nap but I breeze through the afternoon and find that I'm not tired at night.
6/24 (for video of me talking about improvements, click here)
  • left foot drop improved
  • stood at the kitchen sink doing dishes for ten minutes (normally when my legs start to get tired I stick my belly out and lean my hips on the edge of the counter for stability – that never happened) and then stood at the stove for five minutes making breakfast
  • bent down to wipe some water off of the floor and didn't have to hold on to the counter for support
  • standing and talking to my husband with my arms crossed, not holding on to the walker
  • numbness continues to improve; sensation is returning from waist to toes
6/25 (video of walking here)
  • able to bend and swing legs into car instead of putting my hands behind my knees to bend them and place them in the car
  • stood at bathroom sink washing my face and didn't lean into it with my forearms for support
  • able to pull on shorts (seated) without having to hike my legs up with my hands into each leg
  • flexibility improved (laid on my stomach and was able to grab my foot - left and right and bring it towards my butt)
  • sit to stand (twice) without holding on to anything
  • clonus returned (not sure I was checking it the right way before)
  • walked with one forearm crutch around house (during work day)
  • legs not feeling as sturdy
  • cold sensation in feet and legs returned
  • couldn't sleep last night; woke up three times to go to the bathroom
  • legs and feet feel warmer (sensation-wise)
  • walked with one forearm crutch for a few hours
  • walked (waddled, more like) down the hallway - about ten steps - without holding on to anything, 3 or 4 steps at a time very, very slowly

So, placebo?  I think not.  But full disclosure:  I started Ampyra about 3 weeks before I went in for the procedure, but I stopped it two days before to get a baseline for how I was really feeling (I've yet to notice a difference in leg strength from Amypra; just sensory changes).  I was off of it for 6 days.  I called and spoke to a pharmacist at the drug company who said it is basically like starting from scratch - and it's supposed to take 2-6 weeks to kick in.  That was encouraging in the sense that, any improvements I am seeing are from the venoplasty, not Ampyra. I filmed myself walking about a day after I started the Ampyra and it's exactly the same the "before" video I filmed on the 17th - proof positive that the Ampyra is not clouding any actual improvements from venoplasty alone.

The walking/sensory improvements aren't all day every day, either.  There is an ever-present ebb and flow, one that I could do without.  But the two very first improvements (with spasticity and bladder) have stayed constant through out.  I have to at least be thankful for that.

Should I be happy with what's happened to this point?  Of course.  But I'm forever looking for the next thing - and it's difficult to let yourself down from a full on crusade... you want that high to continue.  Worst part?  I've never been a patient person, so this is a real struggle for me.

Thankfully I've spoken to many people who were/are on the same track as me -celebrating little by little, incremental improvements.  So let's just see how this unfolds.  But I hope I can simmer down a bit and be a little more philosophical about this.  Or I'll just have to get on some crazy pills.  And I really don't want to take any more medication...