This Is MS Multiple Sclerosis Community: Knowledge & Support

I just got back from Dr. Angelo Markis' 1st CCSVI procedure...




....go on to the next day. I am basically resting, drinking lots of water to help the kidney's flush out all the contrast dye, sedatives, etc.

Based on my experience, I think I can say that MSer's in the Midwest and especially Chicagoland now have a viable treatment option!

I took some photos of the clinic location, staff, and Dr. Markris and hope to be able to post them later.

This is Jackie, Patient Service Coordinator, who runs the front desk and most likely will be talking to you on the telephone about the details of your procedure:



Contact information:

Chicago Access Care
Angelo Makris, MD
3011 Butterfield Road
Suite 120
Oak Brook Promenade
Oak Brook IL 60523

Tel: (630) 990-9729
Fax: (630) 990-9730

www.makrismd.com

This is a clinic setting, not a hospital. My two previous liberation procedures were at hospitals, and this clinic was as fully equipped as them. You are not making any compromises in terms of equipment or facilities by selecting a clinic-and the overhead is much less.

The actual procedure was basically the same "gold standard" venogram and venoplasty.

Dr. Markis was able to locate a problem in my internal jugular vein that two previous IR's missed. He used "aggressive" techniques to open it up. There was a loud "POP" sound when it finally gave way. Even the nurses in the operating room heard it!

The nurse overseeing the "conscious sedation" was first rate. I was aware of what was going on, but hardly even felt the inflations except for the dramatic POP in the one location. The only thing I actually felt was the initial opening for access by the catheters and Dr. Makris' hands pushing down at that site.

Both of the IJV were ballooned near the confluence, 14mm on the left and 18mm on the right. No stents were used. I had a chance to have a nice chat with the doctor before the procedure, where I expressed the strong determination not to have stents implanted. Dr. Markis said he uses stents only as absolute last resort in his patients, so this was a relief for me.

I debated about posting the following image because it's personal but so many have wondered about what the entry point looks like and where it's located that I decided to go ahead. To orient yourself the viewpoint is looking downwards and the left side of the image is the groin area, and the right side is my right leg. You can see that the entry point for the catheter is very small (about a quarter inch) and why the nurse has to trim your hair prior to the procedure.



More later.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

That's great! I hope you regain the improvements you got the first time.

I hope you have good news. Rest and more rest. Give your veins time to heal.

Can't wait to hear it, Donnchadh! You were in my thoughts today, it's good to hear from you and I hope you are feeling well.

I heard from Dr. Makris today and am delighted by both of your good reports!!!

Has anyone else been scheduled with Dr. Makris in Chicago?

Well done Donn!

Can I ask regarding blood thinners and aftercare. What has Dr Makris set down for you? Thanks.

may you have excellent results and recovery!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Donnchadh - so VERY happy for you!! I've been one of your "fans" for a long time now. I go for my 2nd angio 1/28 with Dr Sclafani...hope to get back some of those lost improvements. Rest and get back with us only when you're up to it. Positive healing energy to YOU!

I just saw this post. I haven't been on TIMS for several days. So happy for you Donnchadh! Please keep us posted! I hope this does it for you this time.

Dr. Makris is following the protocol set up by Dr. Sclafani so he prescribed
Arixtra (fondaparinux sodium) 5 mg in a single dose prefilled syringe.



The drug is packaged in a box of 10 pre-filled syringes, so I was given two boxes by the pharmacist. I took just one syringe with me to Dr. Makris' clinic and left the rest at home.

I am injecting this once a day in my tummy, for a total of 20 doses. The first dose was administered just a hour before the liberation procedure started.



The Arixtra syringe comes apart into three pieces. First step requires you to twist sideways the clear cap (not upwards) to break it free. Next hold the syringe securely and then pull up the cap (it's tight). Be careful, as taking this cap off exposes the actual needle. Kind of pulling the cork out of a champaign bottle-you pull harder and harder and then suddenly it comes off. Lastly remove the cap on the orange plunger side.

I am injecting this once a day (at noon) in my tummy, for a total of 20 doses. The customer service rep for Arixtra said to alternate between the left and right sides of the tummy and choosing a different injection site each time. To make things easier to remember, I inject on the left side on odd days of the month and on the right side on the even numbered days. Do not inject into the "belly button" area.



Arixtra is a product of GlaxoSmithKline. The above booklet gives clear step-by-step instructions on how to self-administer the injection.

The nurse went over how to properly inject this (basically make a skin fold between the thumb and fingers and inject the syringe with the other hand). There's an intentional air bubble in the syringe; don't be concerned about that-just push the orange plunger all the way down after injection.

It has a thin needle and it's basically going into fat tissue, so there's very little discomfort. There's a natural reaction to initially go slowly with the injection but you are far better off just plunging all the way as quickly as you can. If you are squeamish about needles, perhaps a companion can do it for you. After injection, the syringe automatically retracts the needle. It's cleverly designed to be a "one time use" syringe.

Arixtra should be stored at room temperature; not frozen.

I personally haven't felt any bad side effects from this blood thinner. It is very reassuring to know that my treated veins are not going to clot up. Arixtra is meant for treating "deep" (internal) veins, so it is ideal for CCSVI applications.

However, Arixtra is very expensive. I got prescription filled at a local Walmart pharmacy, and was told that this order would be $2,800 if there was no insurance coverage. Dr. Makris said he could order cheaper substitute blood thinners/anti-clotting drugs if patients don't have insurance coverage or if is inadequate. I realize that Arixtra is costly, but then consider the thousands of dollars spent on "MS autoimmune" therapy drugs which are essentially just producing expensive urine.

After the 20 doses are completed, Dr. Makris recommended taking aspirin 81mg (the so-called "baby" aspirin dosage level) indefinitely if tolerated. Enteric safety coated aspirin has a delayed release to prevent stomach problems. Myself personally, I can take this without any complications but each person is different and you have to be alert to any adverse reactions.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

hope you get back everything plus. the best of healing thoughts this new year and beyond.

[Judging from some PM's I have received, these points must be understood: the clinic is in a suburban area outside (west) of Chicago and there isn't any public transportation available. Basically, you must travel there either via a car or taxi on the expressways.

There are a great number of hotels nearby; but which one is closest or the "best buy" I don't know because I was able to be driven to and back from this clinic on the same day. Younger brothers do come in handy.]

Here's the "final flight path" for getting to Dr. Makris' clinic. Both Mapquest and Google map gave good directions from my starting point and following through the expressways but didn't quite have the final turns correct. I think the problem is that the clinic is located on the back side of a high end retail shopping strip ("Oak Brook Promenade"), and not on a specific street front.

Basically you are turning off of Butterfield Road (Route 56) onto Fountain Square Drive. Butterfield Road is north of, and runs parallel to, Interstate 88 (Ronald Reagan Memorial Tollway).

The photographs were taken by me from the front passenger side; you are required to have someone else drive you back because of the possible side-effects of the sedation given during the procedure.

Make a turn at the stop lights at the intersection of Butterfield Road (which runs east and west) and Fountain Spring Road (which runs north and south: you will be going due south). The Oak Brook Promenade is located on the south side of Butterfield road. Another landmark, Dick’s Sporting Goods, is on the north side of Butterfield.



Keep going.



Keep going.



Keep going.



You are going straight though the shopping mall inner front parking lot.



You now see the back outer parking lot (you are still facing due south).



Make a left hand turn; you are really just going through the back parking lot. The clinic is about 2 blocks straight ahead (due east).



Here it is! There's plenty of free parking right in front of the clinic.
Go through the front door, then go to the right hand door to enter the reception area.

Prepare to be liberated.

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Oh my goodness, Donnchadh, this is looking to be the most complete and photographed liberation tour de force yet.

Arixtra - phew! $140 per hit.

Interesting that Dr Makris got you to have Arixtra injection one hour prior to treatment. Makes sense. In Poland it was about 2 days after treatment before the blood thinners could be organized.