CCSVI treatment in Tukwila, WA

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

CCSVI treatment in Tukwila, WA

Postby SandyK » Wed Jan 05, 2011 1:39 am

Hi. I was treated on January 3rd. My husband wrote up a short note he posted to friends and family on Facebook and I'm sharing it with you.

I will post updates again shortly.

I don't know the percentages of stenosis yet. I do know at least a 16 mm balloon was used. I'll have more info when I get the report.

Written by my husband:

We arrived early but the doctor was running a little late with the patient ahead of us so Sandy wasn't officially wheeled into the procedure room until 11am. The pre-briefing and prep care from the doctor and ...staff were excellent; very informative and good bedside manner.

I was not allowed in the procedure room so at 11am I went back to the waiting room and sat with Pattijean and Sam (Sandy's mom and older brother who both rearranged their schedules to be there). The procedure was predicted to take about 2 hrs; it ended up being only a little longer than that because all five veins in question needed some kind of attention. She was awake for the whole procedure (with some minimal painkillers).

After they brought her out she had another 2.5 hours of recovery. She was in very good shape; a little weak but overall she felt good. The doctor gave us the after-action report and said that the whole thing went very, very well and Sandy was a real trooper (probably because he didn't see her crying while we prayed beforehand).

So... the results:

Nothing immediately dramatic. Bear in mind that Sandy has had MS for the last 17 years and that's a lot of damage to undo; it isn't going to happen overnight. HOWEVER two things to make note of...

1. Sandy was able to *stand* at the front counter while we paid the bill. After a physically and emotionally exhausting day with only 5 hours of sleep the night before, this would normally be impossible. She *should* have been a wasted, limp ragdoll.

2. During the trip back to Kingston (1.5 hours) she did not sleep in the car. And on our way home we stopped at the grocery store. She was able to come inside with me and take care of getting a prescription filled at the pharmacy while I rounded up some chow. She was also able to stand *unassisted* in the checkout lane. A week ago she would never have made it out of the car. Again, this happened at the end of what should have been a draining and devastating day.

Bottom line: Improvements will come SLOWLY, but they are now possible and appear likely.
Diagnosed 1994, Self EDSS is 6.5
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Re: treatment in Tukwila, WA

Postby ThisIsMA » Thu Jan 06, 2011 12:42 am

Hi SandyK,

Congratulations on your procedure and on being able to have it so close to home!

I am also located in Washington State and I am very excited to learn that the procedure is being offered here. Is this doctor willing to give out his or her name and phone number? I would love to be able to get an appointment with them.

Did you have a doppler or MRV or both prior to the procedure?

What was the cost and was it covered by insurance?

I have so many questions! I guess its rude of me to be asking questions when you're recovering from a very big day. So please rest up, no rush in replying, but when you feel up to it, I'd love to receive contact information for this doctor (of course with his or her permission).

Thank you so much and CONGRATULATIONS!!!

Mary Ann
DX 6-09 RRMS
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Re: treatment in Tukwila, WA

Postby NHE » Thu Jan 06, 2011 2:07 am

Hi Mary Ann,

ThisIsMA wrote:I am also located in Washington State and I am very excited to learn that the procedure is being offered here. Is this doctor willing to give out his or her name and phone number? I would love to be able to get an appointment with them.


I just sent you a PM with the info.

NHE
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Postby Krusty_bath » Wed Jan 12, 2011 8:20 pm

I am in Washington and have had ccsvi treatment in California, with little result. Can you give me the name and contact info for the Tukwila CCSVI treatment, so I can get follow up here.
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Re: Treatment in Tukwila

Postby GinaB » Thu Jan 13, 2011 12:52 pm

SandyK,

I hope that all is well with you, congrats on finding Liberation so close to home. My husband and I are a few hours further away in Victoria and are very close to being able to start the process.

So many questions but I will just shoot you a couple.

How are you feeling? Have the improvements kept coming? If a little energy returns that alone is worth the price of admission.

Did they do the scanning at the same time and did they do both the Doppler ultrasound and the MRV?

How much should we budget for the procedure and tests?

Thanks for sharing your experience with the rest of us.

Gina
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Postby SandyK » Thu Jan 13, 2011 5:23 pm

Hey GinaB.

I am facing an uphill battle. I have so much damage from this disease that it is going to take time to recover. I have noticed much more stamina. I don't peter out like before. I didn't experience a dramatic change but I have had this so long I am past dramatic improvements.

There is no scanning...straight to Venogram.

I would budget $8800 in the event stents are needed. I didn't need any and they have only had a handful of patients who did.
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