I like...

I was at a seminar recently where one of the exercises was to name things that I like. (Thanks, Mo!) For one minute I had to repeat the sentence "I like..." followed by something that I like! This is a great exercise to focus on the what's right - so much of the time I tend to focus what is wrong, or what I don't like.

Here's my list of the things that I like that relate to CCSVI. Think of this as kind of a Top 10 list (except that I’m not going to number it, and there may not be 10!)

I like:

• the magnet that I found in Aurora, NY when I was tested at BNAC (pictured above.) OK - it really isn't about CCSVI, but I loved finding it on my Buffalo trip!
• the CCSVI word cloud t-shirt, which can be viewed and ordered here. Sandra created the shirt from the writings of folks who have MS who wrote about what CCSVI means to them. Sandra is the admin for the CCSVI in MS UBC Facebook page - click here to see her page.


• Joan's CCSVI in Multiple Sclerosis page – click here to see it.


• the CCSVI Alliance - click here to see their new site. They also get the vote for my favorite charity! The check's in the mail!


• people who take CCSVI seriously but who also make me laugh. This one's a tie:


• WaYnE at the CCSVI Toronto Facebook page (click here to see the Facebook page and here to see the latest cover of Liberation Quarterly).


• Dr. Sclafani on ThisIsMS (click here to see the 194 page thread where he answers our questions). I think I may have to comb through that long thread to find the "Sclafani"isms and make a list!


• Flowers 4 MS. Angela sells greeting cards and t-shirts here , and also does a wonderful job translating Italian text for us. Check out her Facebook page here. Angela is currently donating proceeds from her fundraising to BNAC.


• the many other folks raising money for BNAC: Jill, Larry, Linda, Jackie, Orna...


• IrishBear76 on YouTube.


• Wheelchair Kamikaze. Click here to read his blog. He's articulate, thoughtful, funny and has a great ability to see both sides of a story. He writes about MS as well as CCSVI.


• Allison Shadday's book titled MS and Your Feelings – it can be ordered here on Amazon. Allison’s book is about MS and there is great advice in it about dealing with a chronic illness which will apply to CCSVI as well. I know for me that the emotions around CCSVI are similar to when I was diagnosed with MS. This is a truly helpful book, especially the parts around grieving and loss.
  
• all of the new friends I've made along this CCSVI journey, which is really just beginning.
  
  

Pam Parties at The Pink Door

Wow! What a party! When Jackie Roberts, the lovely owner of The Pink Door, throws a party, she goes all out!

On June 27, 2010 Jackie hosted the Festa per la Salute (Party for Health) at The Pink Door. The money raised supports CCSVI research at the Buffalo Neuroimaging Analysis Center (BNAC). It was a wonderful evening with great food, excellent entertainment, fun drinks, and special guests appearing via Skype.

We arrived in Post Alley at about 5:15 pm to find a line at the door. The entrance to The Pink Door is just that... no sign announces that you're there except for the pink door. A very funny and tall woman on stilts was there to greet us. Someone took our names at the door and passed them along to the announcer - or was he an emcee - or was he a ringleader like at the circus? Anyway, he announced our name over the loudspeaker as we descended the stairs into the main dining room. At the bottom of the stairs Jackie's sisters were there to greet us and offer us wine or the signature drink (more about that later!)

The next stop was the BNAC table, where Linda Safran (the Development Director) and her daughter Jenny were sharing the news about what is going on in Buffalo. It was wonderful to see Linda again (I met her in May when I was at BNAC for testing) and to meet Jenny.

The entertainment for the evening was amazing. The dining room has a very tall ceiling, and there was a trapeze artist performing as we walked in. As we moved from the dining room to the lounge, an artist was working on a painting. On the deck, which has beautiful views of Elliott Bay, there were musicians - a tuba player and an accordion player - as well as four young ladies performing modern dance. In the lounge there was a man slicing prosciutto. Over the course of the evening there were various musicians performing on the stage in the lounge.

Jackie's staff did an excellent job taking care of us. When it was time for another drink, or oyster, or appetizer, they were there.

Speaking of drinks... The signature drink of the evening was the Wheelchair Kamikaze. Jackie named the drink for Marc, writer of the excellent and award winning blog: Wheelchair Kamikaze. If you haven't seen his blog click here to have a look. So, what's in the drink? Take a regular kami - vodka, lime, triple sec - and add blue curacao and two wheels of lime, and there you have it! And I did... I had several, and had the hangover to prove it the next day.

The food at the party was wonderful. My husband loaded up a plate for both of us, and there were lots of options for us vegetarians - veggie lasagna, gluten free pasta, salad, bread. Good stuff. There were two options for dessert - strawberry sorbet and Bongo Bongo. We had multiple plates of Bongo Bongo at our table - yummy profiterole with chocolate sauce.

One of the highlights of the evening was when everyone gathered in the lounge and a large screen came down from the ceiling. Jackie gave a heartfelt thank you speech, and announced that we would be Skyping with Marc - the Wheelchair Kamikaze. It was great to see him on the big screen, and he was inspiring and funny. He announced that our next guest would be Dr. Robert Zivadinov, the director of BNAC. I have to confess that I went back out on the deck to sit down during Dr. Z's talk - with no disrespect to Dr. Z, but the alcohol and MS were taking their toll and my legs were tired!

After the Skype sessions were over, there was more entertainment on the deck - a fire dancer! It was great to see her perform with Elliott Bay in the background. As the evening went on, there was more music on the stage in the lounge and the accordion player continued to play on the deck.

Jackie's party was important for fundraising for CCSVI research. However, just as important for me was to have so many people with MS who are interested in CCSVI in one place! While many of us had communicated on ThisIsMS.com or Facebook, most of us hadn't met in person. It was wonderful to meet folks who have already had the procedure: SammyJo, Marie, Janet (who I believe gets the award for traveling the farthest - from PA!), and Kathleen. It was also great to meet people with MS who are just as obsessed with CCSVI as I am! I know that we'll stay in touch, and there's talk of meeting again later this summer. If you were at The Pink Door and I didn't meet you, please find me on Facebook or post a comment here.

My beekeeping husband also connected with a beekeeper friend of Jackie's, so he was happy to talk with someone about natural methods of beekeeping, Warre hives and swarms!

For those of you who aren't in this area, please keep The Pink Door in mind as a great place to have a meal and enjoy some entertainment when you're in Seattle. It's an easy stop - just one block up from Pike Place Market!

And to the lovely Jackie: thank you for what you've done for CCSVI and Seattle. You've helped us to find one another; you've helped to fund the research; you've helped to spread the word about CCSVI to people who may not have heard. You gave us a place to meet and a party to remember. You are an inspiration. Thank you!

To the post office!

Today has been quite a day of mixed emotions. I've heard that Barb Farrell will receive treatment in the U.S. on Wednesday. THAT made my day. I had a wonderful private response to my Pink Door video from someone involved in fundraising for MS and CCSVI research. THAT made my day. I've helped match up people with sponsors to attend the Pink Door party. That's awesome.

However, I'm also frustrated. There's a bit of a story behind it, and I need you to know the background.

In January 2010 I embarked on a letter writing campaign. I took the advice of many (especially Joan) to "go local" and bring the CCSVI research and information to local doctors who could help - Interventional Radiologists and Vascular Surgeons. I wrote a 2 page letter. I looked up about 20 doctors. I printed the letters and mailed them. In total, I heard back from about 6 doctors. Two of them actually called me! Not all were interested in acting right away. There is one doctor that I've had contact with via email since he replied to my letter in February. I shared new research, we discussed insurance. I emailed him about Dr. Dake's presentation in FL back in March, and he emailed that he was there in person to hear him! He emailed recently looking for an update on me. That email arrived while I was in Buffalo for testing at BNAC. I've since sent him my test results.

I sent him an email to let him know the tests were in the mail, and asked a few "while we're waiting" questions. One of these was:

"How many MS patients have you heard from about CCSVI"?

Can you guess what his answer was? I mean, c'mon. I'm in the Seattle area where the incidence of MS is high. I'm thinking "he's heard from a lot of people." His response:

"Five"

Five? Am I really only one of five people in this area interested in CCSVI research? I find that really hard to believe... *sigh* That is the source of the frustration today.

When we heard about Barb Farrell, we all asked "What can we do?" and we emailed and sent letters.

I have a request for a new letter writing campaign.

For now, just for today, skip the neurologists. Skip the celebrities. Forget about your primary care doc. Just ignore them for a moment.

If you're in the U.S. and you haven't written letters to vascular doctors in your area, please do! Here are a few easy steps that you can take to help spread the word about CCSVI and to encourage a local treatment option for YOU!

• Use the internet to find local Interventional Radiologists and Vascular Surgeons in your area (see below for a link). You are looking for doctors who perform balloon angioplasty, also known as an "endovascular" procedure.
• Write a brief, heartfelt letter in your own words
• Print the letters and sign them
• Mail the letters in a hand-addressed envelope
• Post here or on TIMS or on Facebook to let me know that you've done this. Be number 6! :-)

See how easy that is? It doesn't sound like that big of a deal, right? It's really not. But it will take some time. Maybe a few hours. It will be worth it! Think of Joan getting the research to Dr. Dake. Think of 'bestadmom' from TIMS getting the research to Dr. Sclafani. Did you hear Dr. Sclafani's speech from Italy? He is involved in this because he got a letter from 'bestadmom.' He was about to retire, and now he is working on CCSVI for us. Because of one person. That person could be you for a doctor in your area. "Why me?" you ask? "Why not you?" I ask.

Please help us spread the word to doctors who can help us. And if you think "Well, someone probably already did this..." please don't let that stop you. The more letters, the merrier. The more letters, the higher the impact.

Am I done yet? Not yet... Here are a few more hints on what worked for me. If you're wanting to send letters and thinking "I don't know where to start," here are a few tips:

• In my letter, I included my personal contact info: Email, phone, mailing address.
• I included a very brief statement about what CCSVI is.
• I included one or two websites. I included Dr. Haacke's site. If I were writing the letters now, I would also include theVenous Multiple Sclerosis site which has an excellent list of published research. (See my links at the top of this page if you need web addresses for these.)
• I was upfront about the fact that I have MS, and am looking for relief from symptoms. I was clear that I knew that this wasn't a cure.
• I was clear about what I was asking for. I was asking for testing and treatment.
• I offered to send more information if they didn't know about CCSVI. I did not include copies of research, as I didn't want to send it if they already knew about it.
• I included the 'big names' who were involved at the time - Dake, Simka, Zamboni, Haacke, etc. There are now more. Include the new doctors - Siskin, Sinan, Sclafani, etc.
• I mentioned a brief summary of the research that was going on.
• I mentioned that patients were anecdotally reporting great improvements, and that Zamboni's research indicated quality of life improvements.

I found the doctors names using several methods:

• Society of Interventional Radiologists website Use the Doctor Finder on the left. Choose your state, and then choose "Angioplasty" as the specialty. Here's a hint on these names. I cross checked them. Some of the addresses were not correct. Some of the doctors had changed hospitals. Google their names, and search out their websites. Verify the address.
• Be sure to look up the IRs and VSs at the big hospitals and univeristy hospitals in your area. Note that not all Vascular Surgeons perform endovascular procedures, which is what we need. IRs do... that is all they do! Before you send a letter to a VS, check out the info. A lot of hospitals and clinics have detailed information about each doctor.
• Don't forget the private clinics. The physician owned, physician run clinics. Think of Siskin at Community Care in Albany...

I'll leave you with one final note. Please write your own letter. It should sound like you. You should know the research. You should know the terminology. Why? Because if you write these letters, a doctor just might call you. Be able to "talk the talk" when they call. I encourage you to write a letter that is so compelling that they can't help but call you. And when that happens, please let me know!

Now - off to the Post Office with you!

To The Pink Door! June 27, 2010

Please join me in Seattle at The Pink Door on June 27th. Can't attend? You can help by sharing this video with others, or sending a donation. Also, I'm 'matchmaking'! Contact me to sponsor someone if you can't attend, or to be sponsored if you're in Seattle.

To reach me privately about matchmaking, please click here to send me a private Facebook message.

The waiting place

One of my favorite books is 'Oh, the Places You'll Go' by Dr. Seuss.

My friend Dorothy gave me this book before I left on an adventurous trip to New Zealand back in '93.

What a fun book. Oh, the places I've gone... and the places I've yet to see... The book has advice for life's ups and downs.

It's that book title that inspired the name of my blog.

The path of testing and treatment for CCSVI has and will take me to many places, both literally and figuratively.

Right now, I find myself in

'The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No...'

It goes on, and here's what I'm really waiting for:

'Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.'

--Dr. Seuss, 'Oh, the Places You'll Go'

Yes, the place that the Boom Bands are playing. That, in my mind, is what I'll hear after treatment for CCSVI. Certainly the Boom Bands play when one is liberated, right? Or so I hope.

And yet, I'm in the Waiting Place both by geography and choice.

I want to be treated for CCSVI locally. No one, that I'm aware of, is treating locally. I'm in touch with a few doctors and am hoping someone will start treating here soon.

Then there's the part of me that is waiting by choice. I have many fears. Re-stenosis. Stents. Clots. Getting worse. There are so many people feeling better after having their veins open. However, this is still an experimental treatment, and I'm having to figure out just how much of a risk taker I am. Where is my comfort level? What's going on with my MS? How long can I wait? Where am I emotionally? What can I handle? What am I willing to put my friends and loved ones through? There are so many questions in the waiting place.

I've been mulling this over for days and trying to figure out how to put it in words.

I've learned to follow my gut instinct. While my emotions may try to take over, I need to balance them with the logical side of me that does the 'pros and cons' analysis.

I had an email from Euromedic the other day - Dr. Simka's group in Poland. I had sent an email months ago. They still had me on the list, and were wondering if I was still interested. I didn't hesitate in my reply. 'Please remove me from your list. I'm waiting for a treatment option that is closer to home.' I'm on other lists, but they're not close to home either. I'll have to wait as my name comes up to see how I feel.

So, I wait... and I'll know when the time is right for me.

To all of you pioneers who have been treated both here and abroad, a heartfelt thank you for pushing ahead and helping to figure this out. I do believe that this will be a big discovery in the disease that we know today as MS.

And, I do believe, that one day I'll hear the 'Boom Bands' that mean liberation and hopefully a loosening of the grip that MS has on me... when the time is right for me.

Fundraising for CCSVI

I fully support what Buffalo Neuroimaging Analysis Center (BNAC) is doing to research CCSVI. By participating in their self-pay CCSVI Database Study, I helped them with their research in several ways. I added data to their growing set of CCSVI data to help make the correlation between vein issues and MS. In addition, a small amount of my fee will go towards helping them continue their research. I've also donated to one MStery Party, and will be attending another.

The best way I can help now (I don't have unlimited funds!) is to continue to spread the word about what BNAC is doing, and how you can help them financially. Their total study cost is $5 million. Hopefully they will get funds from some big donors.

In the meantime, they are asking individuals to help by holding MStery parties. This can be a party held at a restaurant or park, or it can be a virtual party. If an individual party raises more than $1,000 there is a matching grant of $1,000 from the Direct-MS Foundation (Ashton Embry's organization). Check here for more information about hosting a MStery party: BNAC MStery party.

Here are a few of the MStery parties I'm aware of:

Jill and Larry Nolan are hosting a MStery party potluck picnic in Edwardsville, IL on June 13, 2010. If you're in the greater St. Louis area, please consider attending. If you can't attend, please consider making a donation and be a 'virtual' partygoer: Jill and Larry's party. Follow the instructions for online donations.

Jackie Roberts is hosting a MStery party, called 'Festa per la Salute' (Party for Health) at The Pink Door in Seattle on June 27, 2010. The cost is $100 per ticket, and 70% of the ticket price will be donated to BNAC. In addition, participants can make a tax-deductible donation directy to BNAC at the party. For more information: Jackie's Pink Door Party.

Flowers 4 MS is supporting BNAC in a big way. Angela has raised, at last count, over $6,000 for BNAC. I ordered a t-shirt and cards from her recently, and am impressed with her fundraising efforts. She is an amazing woman, and has some great Italian to English translations of important CCSVI documents out of Italy on her Flowers 4 MS Facebook page.. Back to the fundraising: if you'd like to support Flowers 4 MS and BNAC, here is her site where you can order beautiful greeting cards, t-shirts and other items: Flowers 4 MS.

Stay tuned for more posts. I'll be expanding my site by adding a few pages (for example see the 'honeybees' placeholder at the top...) and will have a page that is dedicated to fundraising.

Thanks for your support!

More about Buffalo

So, the story left off when I received my test reports at BNAC on Thursday.

After that, we went to lunch with Jill and Larry. Jill was being tested on the same days as I, and we had connected online before we each traveled to Buffalo. We knew we would meet while we were all there. In just a few short days and over a fair amount of food, we became friends! We met Jill and Larry for dinner on Tuesday night (they're in the photo in the prior post), ran into each other on Wednesday during the day, had a missed connection that was totally my fault on Wednesday evening at the Chocolate Bar, and then our lunch on Thursday to compare notes.

Thursday's lunch was at a restaurant called Merge which has a great vegetarian menu. Luckily, Jill and Larry love their veggies, so we all enjoyed our lunch. We compared notes, talked about next steps, and I began to be sad as I realized that they would soon be heading home and I wouldn't see them tomorrow!

To Jill & Larry: you made the trip so special for me. I miss you both, and it meant so much to me that we were there in Buffalo at the same time.

As we left Merge and walked back to the car, I noticed something flying in the air over the street. From a distance, it looked like a big flying mass of mosquitos. Then I realized - it's a honeybee swarm! I looked at my husband, who is a beekeeper (also known as a beek) and he was as surprised as I was! There were hundreds of bees flying around looking for a spot to hang out.

In the spring when the bees are busy building up their numbers in the hive, sometimes it gets too crowded. They make a new queen and when she hatches, a huge number of bees (sometimes up to half, which can be thousands) leave the hive and fly off to find a new home. And we were lucky enough to see this right in the middle of downtown Buffalo (on Virginia, just off of Franklin to be exact)!

Before we left home, my beek-husband had collected a honeybee swarm from the local Subaru dealer. It was so amazing to see another honeybee swarm in downtown Buffalo.

I heard Jill say "I think I'm going to get in the car" and then I thought to myself, "Oh yeah - you guys are trying to leave town!" Plus, it's a little odd to stand in the street with a whole lot of bees flying around your head! We drove them back to their car, and then went back to check on "our" bees. It took several calls to finally find some phone numbers of beekeepers in the area who might be able to collect this swarm. My beek didn't reach anyone in person, but left several messages.

Honey bees are dying in huge numbers. There is an issue called colony collapse, which my dear beek can tell you all about. All I know is that bees are cool, and we need them. If you see a honeybee swarm, please don't exterminate it if at all possible. Please try to make some calls to see if you can find someone to collect it. In our area, the 911 operators have access to a "swarm list" and beekeepers will be called. You can also usually find swarm lists online, posted on the websites of local beekeeping groups.

If you're lucky enough to see the swarm flying, stand aside and enjoy. It is more likely that the swarm will look like this:

My beek took this photo just before we left our Buffalo bees. The bees found a small branch to use as their temporary home, and they began gathering. The queen is likely to be in the middle of this group. The bees will stay clustered like this until their "scouts" have found a new home, and then they'll leave. These bees had loaded up on honey before they left the hive, and are not angry - they're just focused on getting to a new home.

Here's a picture of my beek on Virginia Street making calls. You can see the bees flying if you look at the house... The bees were gathering on a branch right near the top of the sign.

So, what does this have to do with CCSVI? Well, nothing, but it's fascinating, isn't it? You should hear the gasps of disbelief when my beek husand tells his beek friends that he saw a swarm a'swarmin' in downtown Buffalo! My current obsession is CCSVI and my beek's obsession is bees! Everybody needs a hobby!

We headed to the Chocolate Bar for dessert before leaving Buffalo. It was bittersweet (pun intended!) to be there without Jill and Larry, but we enjoyed excellent chocolate desserts and coffee.

We had a day before our flight left Buffalo, and my beek had discovered a town called East Aurora. He had made a reservation at the Roycroft Inn. This was exactly what I needed. We had a beautiful room in a wonderful old inn with creaky wood floors and lots of great arts and crafts style furniture. It was a lovely, quiet retreat. My beek's other passions include architecture and woodworking, so the Roycroft was a great stop for him.

Late that afternoon we received a call from John, a beekeeper. He was planning on going into Buffalo that evening to try to collect the swarm. Hurray for John!

Back to the Roycroft: Elbert Hubbard founded the Roycroft in 1895, and it became quite the place for local artisans to make their wares by hand in response to the Industrial Revolution. In the 60's this would have been called a commune. By today's standards it would be a co-op. In the early part of the 20th century, the Roycroft campus supported hundreds of craftspeople and was self-sufficient. If my beek had lived during this time, he certainly would have been a Roycrofter. The folks of East Aurora have done a wonderful job restoring and revitalizing the Roycroft and their town.

On Friday morning, we received another call from John. He collected the swarm! Hurray for my beek and John for saving the bees!

Elbert Hubbard, founder of the Roycroft, was a writer and philospher. I'll leave you with my favorite quote from the Roycroft:



I was happy in East Aurora. We found good food, a place to rest, my beek was by my side, and there was talk of liberation! Life is good.

To Buffalo!

I learned about CCSVI in late October, 2009 and discovered the CCSVI forum on ThisIsMS.com. I didn't sleep the first night I heard about the CCSVI theory. I was awake, tossing, turning, wondering. It seemed there was something to this new idea. I've been hooked ever since, following the forums and Facebook pages on a daily basis. When Buffalo Neuroimaging Analysis Center offered a self-pay testing program for CCSVI, I decided to take advantage of it. I was there last week, and this is my story!

My husband and I flew to Buffalo on Sunday evening. We flew in a day early, and spent a day and a night at Niagara Falls. We had both been there before, but it was great to see the falls again. We stayed on the Canadian side at the Marriott Fallsview,with a (yes, it's obvious from the name but I have to say it) great view of the falls! We were able to get a reasonable rate with a 1 night package that included breakfast, dinner, 2 tickets to the SkyWheel and a free shuttle between the two casinos and the hotel. If you go to Buffalo and have never seen Niagara Falls, you should go. Here's the view from our room on the 12th floor:

On Monday evening we headed to Buffalo. We stayed at the Doubletree which is right across High Street from the BNAC/JNI location, which is at Buffalo General Hospital. If you go to BNAC (which I learned is prounounced Bee-Nack, not Bee En A Cee…) and want to stay at the Doubletree, make sure to call the reservations number and ask for the Buffalo General rate. The Doubletree has a great staff, free internet, chocolate chip cookies at night, a café downstairs for food (Au Bon Pain) and is just ridiculously close to BNAC. There is also a computer with printer for guest use (great for printing boarding passes for the return trip) and they were willing to send a fax for us at no charge. (Yes, in this day of e-everything and scan and email, some of us still need to send a fax!) Anyway, back to the Doubletree - you can't beat the location. It was great to just head across the street and be back at my room in between tests.

On Tuesday morning I went to the main entrance of the hospital and was escorted up to the 2nd floor. The staff was great about meeting me and escorting me to my next test. I really appreciated this! While the hospital is not large enough to get hopelessly lost, it was nice to know that someone was waiting for me and would get me to the right place on time. After a bit of paperwork, I was off to the tube!

The MRI staff was great. I asked the tech to talk me through the sequences. I like to know where I am in that 1-1/2 hours of testing! You know the drill, right? I don't sleep in the tube, so I'd rather hear the "Ok, Pam - the next sequence is about 9 minutes" and then do the math to know how much longer I've got. I survived the 1-1/2 hours with nary a leg twitch until she said the magic words, "OK, Pam - you're done. I'll be right in to get you out," and BAM - the left leg jumped. Funny, eh? (I learned that in Canada!)

The tech was excited about CCSVI research, and I could tell she was happy to be a part of it.

I’ve had several MRIs over the past 7 years – about 10 or 11 – and I found it interesting that there seemed to be some new sequences. New noises, new table shakes, new "pings." There were times when I thought… "Hmmm – I haven’t heard that before." I’m guessing that was the MRV part, as that sounded new to me. Or maybe the SWI, as they were also testing for iron deposition...

I had a break for lunch, and went back to the hotel to meet up with my husband. He had been walking around downtown Buffalo and was checking out the sights. There is some great architecture and old churches in the downtown area.

On Tuesday afternoon I had my Doppler test. I was wearing my CCSVI word cloud shirt, which I bought from Sandra’s Café Press site. Check out the CCSVI at UBC MS Clinic Facebook page for more details on how to order… Anyway, the Doppler tech was very interested in the shirt, and who knows – maybe BNAC will have their own shirt for fundraising soon???

The Doppler was quite interesting. I expected the scan of the neck, in both supine and upright positions. However, I didn’t know what made it a ‘transcranial’ Doppler. The wand is used on the cheek, in both supine and upright positions, to check the deep cerebral veins. There was a rep there from the manufacturer during my test. This is the new, bright, shiny, cool machine. I was glad to have my test done on it, and the techs were great.

Tuesday evening we went out to dinner with some of the other folks being tested. We went to the Anchor Bar, the original home of the Buffalo Wing. As a vegetarian, I didn’t try the wings, but the interior was fun, and it was good to compare notes with others going through the tests.

Wednesday morning was the Neuropsych test. I hate these. I participated in a clinical trial a few years ago that inculded these types of tests. I was the good student in school – almost straight A’s, and the thought of getting something wrong just bugs me! Anyway, that was almost 2 hours of answering questions, adding numbers, sorting cards, etc. I was tired!

I had the privilege of meeting Linda Safran while I was at BNAC. Linda is a go-getter who is the Development Director for BNAC. If you’re interested in raising money for BNAC and want to have a MStery party, you’ll likely have the pleasure of getting to know Linda. She has her work cut out for her. BNAC needs to raise a lot of money to complete this CCSVI research. I'll write another post with information about who is raising money for BNAC, and how you can get involved.

Wednesday afternoon my husband and I headed to the Buffalo and Erie County Botanical Gardens. They have a beautiful conservatory there, and we enjoyed checking out the plants. I have to admit I wilted a bit. The conservatory was warm in some wings (80+ degrees F) and we didn’t stay as long as I would have liked. Here I am in my CCSVI shirt:

Wednesday evening I had the pleasure of helping to guard the cooler at Wobbly’s softball game. Wobbly posts on the CCSVI forum at TiMS, and he was eager to meet those of us visiting Buffalo. His real name is Bill, and he is one of the fortunate JNI patients who went to Italy to be liberated. He is a generous, funny and kind man. It was great to hear his stories and to cheer for his team. They tore up the diamond with lots of homeruns, and the game ended early (5th inning instead of 7th) because it would have just been too embarrassing for the other team to let it go on (or maybe it was in the rules???) :-) If you’re going to be in Buffalo, send a PM to Wobbly on TiMS and try to meet up. He’s a great guy and you'll enjoy meeting him.

Here's a picture of us at Stiglmeier Park, Diamond 1 - I'm 2nd from left, Bill is on the far right.

Here's Bill guarding the beer cooler.


Thursday morning was absolutely nerve-wracking. I was tired, and knew that in just a few hours I would be meeting with Dr. Weinstock-Guttman to have a neurological exam and to get my results. I was so nervous I could hardly eat breakfast! Once we were in the room with Dr. W-G, I was much calmer. She is an absolute gem! Kind, caring, knowledgeable… I could go on… I wish she practiced in my town. She would certainly be my neuro. I’m amazed at how she can be involved in so much research and have a practice also! Do these doctors ever sleep???

So, on to my results.

According to Dr. W-G, I have a “beautiful” brain! (All but one of my lesions are in my spine, which isn't part of the imaging package at BNAC - heck - I can't even get my HMO to scan my spine again!) The MRV of the neck didn’t show any issues. However, the Doppler showed a slight stenosis in the right jugular, and I have an abnormal valve on the right side. In addition, I have stenosis of the deep cerebral veins. The MRI report showed better than average brain volume, but more iron deposition than average.

So, there you have it. I meet two of the five criteria for CCSVI. I know - it's OK - you can say both "I'm sorry" and "congratulations" and both are the appropriate response!

For me, it was important to know if CCSVI is an issue or not. As Cheerleader on TiMS said when many of us were discussing the BNAC results on the first 500, there is only one number that is important to each of us. I either have CCSVI (100%) or I don't (0%). I got an "A"!!!!!

There’s more to tell about the rest of the trip and my thoughts on the results, and I’ll save that for another post!