Getting Re-Liberated Locally

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

Getting Re-Liberated Locally

Postby Chris1967 » Tue Aug 31, 2010 11:18 am

Liberated in Bulgaria May 5, 2010.
I'm getting 're-liberated' at my local hospital tomorrow, Sept 1, 2010 by local cardiovascular surgeon.

Total cost for me and my family to fly to Sofia (business class, 3 of us), be liberated, celebrate, splurge and come home: $25,000.
Total cost at my local hospital tomorrow, $100 if I go right home afterward, $250 if I stay overnight or whatever. Thank you Blue Cross Blue Shield.
My vascular doctor, who is anti-stent, said I may need regular surgury! WTF!

I will ask him if I can post his details tomorrow. I wanted to share that this guy wanted to involve my neuro when I presented last week....I told him I was not there for a neurological consultation and I had my Bulgarian discharge papers from Tokuda Hospital in hand. I had to sell it people, you can do the same!

I need to say here as well that I am way more disabled since my Bulgarian Liberation. Can be restenosis, we'll see.
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Postby CureIous » Tue Aug 31, 2010 11:38 am

Glad BCBS is taking care of you. Is that PPO or HMO if I may ask?

Good luck on your followup, hopefully they'll find something.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Getting Re-Liberated Locally

Postby Cece » Tue Aug 31, 2010 11:52 am

Well done! I think there are just many more opportunities in the US now compared to months ago. CCSVI moves fast....

Vascular surgery has been discussed a few times as an option. Would it be a venous graft? Dr. Sclafani commented on it once. It is more of a risk if it is done high-up in the jugulars but a vascular surgeon would likely not want to do anything there anyway. Lower down near the subclavian is less of a risk. It may be more of an option when a blockage is 100% and the catheter can't go in to balloon.

Can you tell me what reasons your vascular surgeon gave for being anti-stent? (Likely the usual reasons, I know.) Stents make me nervous too. With a surgery you have the immediate risks of the surgery but not the long-term unknown risks with a stent.

Best of wishes for your procedure and your health.
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Postby CCSVIhusband » Tue Aug 31, 2010 12:18 pm

Good for you Chris.

Excellent work ... I hope you get the results you hope for!
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Postby Chris1967 » Tue Aug 31, 2010 1:54 pm

CureIous wrote:Glad BCBS is taking care of you. Is that PPO or HMO if I may ask?

Good luck on your followup, hopefully they'll find something.

Mark.


Thanks Mark. HMO
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Re: Getting Re-Liberated Locally

Postby Chris1967 » Tue Aug 31, 2010 2:02 pm

Cece wrote:

Can you tell me what reasons your vascular surgeon gave for being anti-stent? (Likely the usual reasons, I know.) Best of wishes for your procedure and your health.


Cece he did not give any specific reasons, I just remember he made a negative comment or two. I want to type and express myself and just cant!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!God I hate this.

Im just glad to go in tomorrow and have very low expectations. This was a fiasco from the start. he did not embrace Zambonis theory infact, he was extremelely dismissive before I left for Bulgaria. Recommended I did not go, but I did. more later...my apologies
Last edited by Chris1967 on Tue Aug 31, 2010 2:12 pm, edited 1 time in total.
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Postby Chris1967 » Tue Aug 31, 2010 2:05 pm

CCSVIhusband wrote:Good for you Chris.

Excellent work ... I hope you get the results you hope for!


Thanks. I just sat there, wife beside me and argued that we NOT talk about my neurologist. He asked if I had one and I said yes, now lets move on. He insisted, I insisted (respectfully)...i sure wish I had more type in me..It was interesting how he sat up there on that patient table and looked as if he were considering something then suddenly he said "come with me, let's schedule your invasive venogram." Wife said its becouse he 'likes me', I think he just had enough reason to proceed with my epicrisis from Tokuda Hospital in Sofia, Bulgaria
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Postby shye » Tue Aug 31, 2010 2:52 pm

lots of light to you Chris....
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ccsvi

Postby blossom » Wed Sep 01, 2010 6:07 pm

all this can get a person pretty frazzled. but good to hear how you stuck to your guns. the very best to you.
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Postby dlb » Wed Sep 01, 2010 8:10 pm

Great news Chris... Best wishes for a successful procedure & scoring another doctor (maybe - fingers crossed)!
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Postby costumenastional » Thu Sep 02, 2010 4:36 am

Hey you,
wish i could be there for you like last time bro.
Don't make us wait for too long.
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Postby vivavie » Thu Sep 02, 2010 6:38 am

Chris, I sent you positive vibes all day yesterday! I relate to you because I too got "worse" after 1st liberation but my situation is not physically as bad as you. After my 2nd, the doc said to be sure to stay FLAT a lot for the first few days to insure a lot of flow in the jugular as they "should" be closed when we are upright. To make sure the juices are moving!!!

Please please do send a quick update of how it went yesterday but lay flat for a few days. Rest rest rest

all the best for you
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Postby colapesce » Thu Sep 02, 2010 6:50 am

Excellent news, Chris!

Please keep us all informed when you're up to it.

Am so happy for you x
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Postby Chris1967 » Thu Sep 02, 2010 7:26 pm

Hello everyone , thanks for all the well wishes. The surgery went without a hitch, everything smooth as can be, I feel ok.

I got there as requested at 7:30 AM, had to wait till about two o'clock. very much like the surgery in Bulgaria, it lasted approximately 45 min. to an hour tops. I have an appointment to follow up seven days from today.

I'm not quite sure why but he didn't stick around to tell me what he found and how he treated what he found. most peculiar. I just remember asking him what he found and him saying real quickly that he found stenosis in my left side, low, and nothing to speak of on the right. like I said peculiar.

I'm open to any suggestions as to what I should ask him. I actually left the hospital approximately 45 min. after the surgery was wheeled to my car and my wife took me home. Today my family was here staining the fence in the backyard. I couldn't stand it I, I had to be out there to help, foolish of me but if that's any indication, I feel just fine today. That's it.

I just wanted to come on here and report what I can as quickly as I can. I'm off to bed, when I know more, I'll share more. I'm using the voice recognition software so forgive the paragraph and sentence structure. I know it really sucks. :-) Ask me any specific questions if you have them, If i can, ill try to answer.

Shout outs to my boy costumenational and my girl colapesce! Thank all for you support, prayers and positive vibes :-)

Best,
Chris
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Postby daniel » Thu Sep 23, 2010 12:00 pm

Hey Chris, glad to hear your re-liberation went well and I hope it is continuing to hold! Let us know how you're doing
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