A CCSVI Patient Log: All About Steve

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

A CCSVI Patient Log: All About Steve

Postby mormiles » Tue Sep 22, 2009 8:25 am

This is Steve’s treatment and recovery log. The Stanford imaging and surgery are scheduled for 9/28 and 9/29. I thought it appropriate to start with his MS symptoms and history. Please forgive me if some of the future entries are very dry and clinical.

About the man: Steve is 56, ½ Sicilian, ¼ Italian, 1/8 Irish, and 1/8 German. He was born and raised in Schenectady, NY, and he’s lived in the Dallas area for the past 25 years. Steve is a quiet man with a generous and loving heart. He’s very disciplined and loves the structure of a routine. It was tough for him when he was laid off in January, even though it was even tougher on him when he was working every day. His new routine is to come into town with me on Mondays, Wednesdays, and Fridays. On those days, he goes to 8 a.m. Mass, stays for the Rosary, hobnobs with the senior citizen “daily Massers,” sometimes goes to programs with them at the senior center, has joined a bible study, and runs errands. He comes to my office and takes naps in between these activities. On Tuesdays and Thursdays, he stays home to rest, cook, and do laundry and housework. Lots of time is spent napping every day. Since the lay-off, he filed for disability income and was approved as of July. He’d rather it were a paycheck for working, but he’s glad to have an income with his name attached.


About the MS: Steve was diagnosed in January 2005 with RRMS, a diagnosis that was later changed to SPMS in the summer of 2006. The truth is that Steve’s MS is OLD…45+ years old and I wonder sometimes if it isn’t actually PPMS.

Before Steve was 10, dyslexia and poor eye-hand coordination were his only common MS symptoms. Then at 10, he spent a week in the hospital with a suspected case of rheumatic fever, but there was no conclusive diagnosis. His symptoms were fever, fatigue, weakness (especially the legs), and malaise. If that was an MS attack, it’s the only one he’s ever had. The urinary urgency started in his late teens, and the occasional ED started in his early twenties.

For the next 20 years or so, there was just very slow worsening of his urogenital symptoms and lack of coordination. Other symptoms crept in too: feeling off-balance on rare occasions, nervous ticks, chronic constipation, mild fatigue, and allergies.

Then he met me. When we started dating, I had walking pneumonia and didn’t know it, just the latest of many serious respiratory infections. Now I know that it was the start of several years of constant communication of Chlamydia pneumoniae from me to him. Within a few months, Steve developed sciatic pain, restless legs, and the imbalance problem accelerated. Shortly after we married, I wondered if he had MS, because, as a child, I had known a man who had MS. It sure looked similar to what I had observed, but I put it out of my mind. Over the next few years, everything accelerated. When Steve’s boss asked him if he might have MS, I dragged him in to the internist with a long list of symptoms and asked “Does he have MS?” In the previous years, I had sent him to doctors with lists of symptoms, but nothing ever came of it. It took asking the question to get an answer.

After the diagnosis, Steve injected Rebif for a year and only got much worse. In 2006, I found the Vanderbilt Protocol, a long-term combined antibiotic regimen tailored to treat chronic infection with Chlamydia pneumoniae. We both tested positive for chronic infection. Steve is still on the protocol full-time, and I’m on intermittent therapy. The Vanderbilt Protocol has slowed Steve’s progression, but there has still been progression. I expect he will remain on the protocol at least several months after receiving stents for CCSVI.

So now, he has foot drop on the right side, a very weak and slow right leg that is wasting in the thigh, the left leg is getting weak, his balance is very bad almost all the time, he’s lost quite a bit of upper body mass and strength, he becomes paralyzed with too much heat or fever, he has poor dexterity, his vision gets blurrier as the day progresses, his speech is often slurred and he has trouble finding the right words, he has tinnitus that he says sounds like a machine shop, he wears absorbent briefs and pads all the time, he has no feeling in his body except his nose and his burning feet (both of which are hyper-sensitive), he’s very stiff when he has slept or sat for awhile, he has significant cognitive dysfunction, he has heavy salivation and sometimes has trouble swallowing, and he has to use Lunesta because of poor sleep. He walks badly for very short distances and uses the riding carts in stores. He has a cane, a walker and a wheelchair, all of which he uses occasionally. BUT, the very worst of all Steve’s symptoms is FATIGUE. And yes, he’s depressed.

I’m wondering seriously about how much good CCSVI treatment will do for someone who has had MS for such a long time, but we’re so looking forward to finding out. Since further information concerning people with progressive MS came to light at the conference in Bologna, we’re considering adding Copaxone to the drug mix to span those infernal 18 months needed for the whacked-out immune activity to stop. We’re both hoping Steve will get some of the same types of symptom relief that others have gotten, but all he has actually verbalized is that “it would be nice” if he had a return of feeling in what I refer to as “the center of his universe.” You men out there know what I mean.
Last edited by mormiles on Tue Sep 22, 2009 12:13 pm, edited 2 times in total.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Tue Sep 22, 2009 9:10 am

Thanks for that Joyce. Must have taken some effort to 'relive' all that's happened, and it sounds like a lot. Tell Steve I am pulling for him hard core. I am considered progressive also, but I haven't had it for as long as Steve and am not as disabled. It's pretty much a waiting game for me at this point. It seems I'm draining fine for now, so we'll just have to see what we see. But my hopes are high due to the fact that my headaches and other little aches have gone since both sides are fixed. I hope I get back some bladder function as I know Steve would also.

I felt like I knew you before, but so much more now, thanks for your candidness in describing Steve's dysfunction. I hope to God he gets some relief. I've decided to go on LDN very soon (hopefully have my Rx by week's end) and will let you know how that's going. Copaxone is the other thing I considered since it is 'different', but I just don't want to pay that much unless the LDN leaves me wanting. Keep us posted on how it goes with Stanford.
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Postby chrishasms » Tue Sep 22, 2009 9:17 am

123
Last edited by chrishasms on Sat Dec 05, 2009 12:20 pm, edited 1 time in total.
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Postby catfreak » Tue Sep 22, 2009 9:52 am

You are such a sweetheart! God bless you for caring so much for Steve and sharing your history with us.

It won't be long now.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Tue Sep 22, 2009 10:27 am

It will be soon, maybe add your date to this post/thread so it is right here :D

hoping for the best for Steve!! I am so glad he decided to look at it and investigate!
marie
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Postby Jamie » Tue Sep 22, 2009 11:34 am

Put it this way.

It's worth a shot.
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Postby whyRwehere » Tue Sep 22, 2009 12:05 pm

That was a very touching entry. We all need to do whatever we can to make our lives and bodies better. I really hope Steve improves...keep us posted.
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Postby cheerleader » Tue Sep 22, 2009 12:36 pm

Thanks for all the info, Joyce.
I'm there with you, dear heart.
thoughts and prayers,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Tue Sep 22, 2009 5:44 pm

I wish you both great success, however you choose to measure it. Take care and I will be waiting hear how you are doing.
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Postby Jamie » Tue Sep 22, 2009 9:44 pm

Thank you for your hearfelt post.

We don't know what to expect for Steve as he's suffered so much.

All I can say is the road will be hard but not getting any worse would be victory, right?

You've every right to hope for more but its not going to be overnight.

Good wishes from me and Mel, we won't pretend its a piece of cake on the day, I've followed your story from the beginning and I can't wait to keep following you, hopefully in better circumstances.

Take care of Steve AND yourself and safe travels. Use all the airline help and amenities you pay enough!
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Postby mormiles » Wed Sep 23, 2009 5:36 am

Thanks everyone. Steve came down with a flu a couple of weeks ago and has just finished two courses of Tamiflu. He's in worse shape now than ever, and he's becoming more over-the-top emotional all the time, so the CCSVI treatment couldn't be coming at a better time. Seeing him this way has dampened my hopes, so your kind words are an especially soothing balm for my soul right now.

We are both in a mindset to expect nothing, to hope for the end of MS progression, and to just see what happens in the years to come. The wild excitement I felt after first discovering CCSVI and its treatment is dampened, though I'm very happy for those who are helped by it. But, who knows...maybe we will be very pleasantly surprised. I told my mother last night that I didn't think I was capable of crying anymore, not because I had cried myself out of tears, but because I've stifled them so many times. She assured me that I could still cry and suggested maybe I would be overpowered by a need to shed some tears of joy in the near future. Dear God, let that be true.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Wed Sep 23, 2009 6:50 am

Joyce,

No matter what happens, I feel like I did the right thing. I don't know how much, if any, disability this will actually take away. But I will tell you this. I've never been so hopeful for so long. It's allowed me to see the world hopeful again. You know the one that's not absolutely, positively centered around your suffering? That one. It's been awesome to feel that way. To engage in a conversation for real and not be distracted. To be able to drink a glass of water after 8:00 and not be uber paranoid because I "deviated from my regimental routine". And it's lasted. If this is only temporary, I'm still glad. I haven't truly "felt" things the way they ought to be felt in a long time. The hope that this could potentially stop my progression has left me so hopeful I can't explain it. I know I'll never be like Mel as she was obviously still inflammatory and I'm not. But rather than be jealous of her, I'm absolutely giddy for her. Before I would have just been jealous. I feel like, for the first time, I've done something that I want to do, not just follow Dr.'s rote. I don't know if that explanation came out right and I have to get back at it, but I know how bad being sick on top of MS is and I feel for you in the short term.

I hope and pray that Steve gets good results and gets stents put in everything and gets a dose of hope too. You think the flu is bad? The post op of this is worse, BUT you will be "suffering with a purpose" and coming from a different place. Take care and good luck.

Lew
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Postby mormiles » Wed Sep 23, 2009 7:09 am

Lew, You're a true friend.
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At Stanford

Postby mormiles » Mon Sep 28, 2009 1:49 pm

This has been imaging day. Steve has serial narrowings in both jugulars, from high-up to low-down. The azygos looks very good. We both were impressed with Dr. Dake and like him very much. He doesn't seem put off at all by the fact that Steve has had MS for so long or that his EDSS is 6.5. Funny, Steve and I feel more hopeful since the consult.

The surgery check-in time is 6 in the morning. I won't check in again until after the surgery.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Mon Sep 28, 2009 2:09 pm

Kick ass Steve.
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