CCSVI-Before and After

Thank-you for all your prayers and kind words prior to and after my procedure.  It has been just over a month since my procedure and it has flown by like crazy.  I wanted to post an update on how things are going for me since my procedure.

 Dr. Arata at Synergy performed the procedure this time.  The Dr. who performed my procedure last time at this facility specializes in other vascular issues now.  Dr. Arata decided he would be the only Dr. at his office preforming this procedure because of his experience in this field, he has done extensive research into CCSVI and why many people with MS have this autonomic nervous system disorder.  I found this experience totally different than the one I had in March of 2011.  He explained in depth on how Zamboni had it right about the veins in CCSVI, but that it isn’t that they are just narrow but that the Autonomic nervous system has switched from pumping blood through the jugulars, azygus and sometimes renal veins in people who have abnormal veins, in my case they’re kind of warped around each other,  my nervous system found an easier route at some point and disregarded trying to go through the veins they are supposed to go through, whether it was at some point narrowed, blocked a bit, because of the valves  making the veins less accessible I’m not sure of that part.  He explained so much and I was trying to grasp it all, this is stuff I will research more on in the future.  Basically by performing this procedure, it resets the system so the blood flows properly.

 They performed so many tests prior to and the day after my procedure to check on differences for comparison.  One of the major things they noted was that my foot temperature had gone up 5 degrees; I knew something was different in my feet because they were pink instead of no color like Rod says.  The other thing was this crazy sweat test they perform.  They put these pads on your arms, legs and feet and inject a gel into these pads that are strapped on and it tests how easily you sweat.  The test the day before was so painful, like burning pins in my skin as it heated up.  I asked her if this is normal and she said it hurts for people who have a hard time sweating (part of the ANS system too).  This test took about 20 mins.  They day after my procedure she did it again and they didn’t even have to tell me it’s changed cuz the test only felt uncomfortable and was finished in 10 mins.  When they did give me the results, they told me there was not only and improvement but that it is in the normal range considered for anybody.

I had an MRV done the day prior and one the day after.  I got a DVD of both and haven’t had time to look at them yet.

God started bringing this all together a few months ago.  It started with healing on the inside.  I had started to feel really inadequate; I could do less and less mentally and physically.  I received poor MRI results in the spring showing I had several new lesions on my brain.  I kind of knew it as my cognitive function and ability to handle stress had plummeted.  I started reading a book called “Battlefield of the mind” by Joyce Meyer and God revealed to me how I may not be perfect in health but there is nothing wrong with me and everything right with me.  I had many years of feeling helpless, being unable to do the things I saw everyone else doing.  When I’d have an “MS” day/s I’d feel like a bad Mom, wife, daughter and employee. 

The thief comes only in order to steal, kill, and destroy. I have come in order that you might have life—life in all its fullness.  John 10:10 (Good News Translation)

God started transforming me inside first.  Before I even planned this procedure I was given a prophetic word by a guest pastor that my storm was almost over and that God was going to turn my mourning into dancing.  As much as I loved to hear that, I said to Rod, my storm is almost over?  I didn’t know what or how God was going to work in me until it all started to unfold.  Well soon after that it all started.  As you probably read in my prayer request email it all came together so seamlessly.  Looking back I think about how long it takes people to get in for this procedure, how Rod asked his boss to work remotely for 5 weeks just 2 weeks prior etc...  I’m still in awe.

                                            

God works in so many ways and usually the way you think it will happen is not the way God has it planned.  Why would God do it the way I thought it should be done? 

I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for.  Jeremiah 29:11  (The Message)

The Symptoms (Before and After so far)

I’m giving all the details here, as I know my family, friends, and others that may benefit or want to know how it’s worked for me.  I am normally a private person but I’m just putting my personal, somewhat embarrassing stuff out there.  I am in no way perfect after this procedure but I do have substantial improvements!

**More energy (this was one of the worst symptoms I dealt with daily, not just tired but debilitating fatigue.  I would have a nap almost every day just to continue for the rest of the day.  It would hit just as bad if it was mental fatigue from work/stress as if it was physical.  I took anti fatigue pills endlessly which have so many side effects.  The last 4 months I was taking these pills daily and sometimes more than once daily if I had something I needed to attend or house work etc…) 

Since the procedure I have had one nap.  I’ve been tired but nothing like the fatigue I felt.

**On top of that I have noticed real changes in my “brain fog”.  Some days I would know exactly what’s going on, but other days I could listen or read something and be like, “what the heck, I don’t get this”.  This was always worse when I didn’t feel fully rested.  I still need to exercise my brain cuz I notice that if I get a bit stressed trying to figure things out that I start to shut down and stop trying.

** Being fully rested was an issue all the time even though I had daily naps.  I almost never slept through the night, It started because I had to get up to go to the washroom and I think my body reset itself and thought I should not be able to fall back asleep, cuz it could take hours sometimes.  Then after a while one bathroom trip became 2-3 every night, the worst thing was I felt like I had to go so bad but I didn’t.  Now since my procedure I have only gotten up two nights to go to the bathroom, and I think it’s partially because I’ve been drinking so much tea. 

**My right hand and forearm (left hand just a bit) were always numb feeling.  It’s the hardest feeling to explain but it’s almost like frost bite that never goes away, sometimes painful but usually not.  Unfortunately I still have this same feeling, but Rod mentioned the week before that my right hand looks purple, he hadn’t noticed before and I think it got worse looking but had always looked discolored and two days after the procedure he said my hand looks pinkish. 

**I used to be constipated, like to the point sometimes of having to take an exlax because it had been a week and my stomach was so bloated.  Now I am not. 

**I had really bad balance some days.  Some days when I’d lose my balance a bit it was like someone you see who is drunk feeling woozy and trying to catch themselves.  I’ve got improved balance, not perfect but better. 

**Once a week at least I would feel dizzy/nauseous and feel like throwing up.  That hasn’t happened. 

**One big one was the pain I had on a daily basis (this one isn’t commonly fixed by this procedure because it is past damage and not the ANS symptoms of CCSVI, other than headache) my pain was from head, behind ear, jaw, shoulder and then under the back rib and above the hip.  This pain would roam all the time.  I’d never have the pain on both sides but always on one side in all the places noted.  I took pain pills after pain pills trying to find the right one.  I started on this one that you have to ramp up to the dose you need because of the side effects involved, this one helped the most but never took the pain away.  Since the procedure I don’t have pain like I did.  I can still feel muscle tension but its muscle pain instead of the nerve and muscle pain.  It used to get so bad some nights that I couldn’t sleep.  2 days prior to procedure I decided since I had to fast for a day that I’m quitting all my medications cold turkey.  This was something that no doctor would recommend cuz I was on a lot that have serious withdrawal symptoms but I just felt I need to do this.  I’ve been relying on medication for too long.  So it’s not just a little relief it’s huge as I was on the highest dose for this medication. 

**Stress had started to get bad for me, in the last year and a half, I couldn’t handle normal stress like I should be able to, but in the last 4 months everything that didn’t go as planned or something popped up that required me to strategize/figure out how to deal with it was an issue.  My brain and body would just start shutting down.  My MRI results had shown several additional lesions on my brain, in the past it was mostly on the spinal cord.  The ones that were on my brain were related to cognitive portions of the brain-- problem solving etc… I was living in chronic stress mode. Everything at work seemed to be stressful, even though it was my normal work life, it got to the point that I decided to give my notice and leave my job, but opted for my Dad’s suggestion of working from home. I don’t know where I am at with that because I’m not feeling chronically stressed right now, but I will try to avoid anything that can bring it on.  This is also something I need to continue to pray for, I’ve developed a habit of dealing with things the same way, either ignore it, or deal with it and let myself shut down, so I was mainly just avoiding any potential problem.

**My legs weren’t a huge issue prior unless I walked for a long time which they would then become tingly and numb the next day, or if I stood stationary for a long time.  I had no drive to walk around much for fear of that feeling coming on.  After walking too long in the last week my legs have been really weak feeling, not tingly or numb (like muscles I’ve never used being sore to the point I can hardly stand, so I need to stop prior to it getting this way.  I just don’t know yet when it’ll happen.  I’m not used to walking for more than a short grocery trip so it’s learning my limits in each situation.

I know I’ve been relaxing in beautiful California so I’m not in my regular routine, already so much better, so everything else to come is more icing on the cake I can’t have!  I’ve gone gluten free as the Dr. says that diet has so much to do with this condition.  The bonus is Rod has decided to give it a try too, for a Dr. to convince my genius (he is an actual genius) husband of how diet affects everything and give him facts that he doesn’t question is a Dr. who has his research right.   

 

Thank-you again for your love and support! 

Tara-Lynn Ollerhead

 

1 For everything there is a season,
    a time for every activity under heaven.
² A time to be born and a time to die.
    A time to plant and a time to harvest.
³ A time to kill and a time to heal.
    A time to tear down and a time to build up.
⁴ A time to cry and a time to laugh.
    A time to grieve and a time to dance.
⁵ A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
⁶ A time to search and a time to quit searching.
    A time to keep and a time to throw away.
⁷ A time to tear and a time to mend.
    A time to be quiet and a time to speak.
⁸ A time to love and a time to hate.
    A time for war and a time for peace.

Ecclesiastes 3 (NLT)