NY here we come.....

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

Re: NY here we come.....

Postby tiltawhirl » Tue Jul 17, 2012 4:55 pm

Wow!

Please keep us updated. If you do decide to fly per the Dr, then I would really suggest getting up and doing a walk about every 30 minutes for sure.

All the best on recovery and a safe trip home. :)

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...and I for one, welcome our new Neurologist overlords!

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Re: NY here we come.....

Postby Cece » Tue Jul 17, 2012 7:04 pm

That sounds like two strenuous procedures, more than you were expecting. I am hoping that as he recovers he will feel some improvement.

Manhattan is not to be missed but not if he is not feeling up to it. I did more than I should've when I was in Brooklyn. Both times.

On the plane, if he is on an anticoagulant, that should prevent clotting? A different concern might be sitting upright which means less flow through the jugulars. Leaning the chair back or commandeering an empty row of seats so that he could actually lie flat could theoretically be helpful.

I'm guessing the Kiwi guy couldn't have jogged five blocks prior to his procedure. Another wow story.
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Re: NY here we come.....

Postby Robnl » Wed Jul 18, 2012 12:01 am

Thx for the update.....i'll hope things will get better...keep the faith!!!
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Re: NY here we come.....

Postby drsclafani » Wed Jul 18, 2012 3:07 pm

daniel wrote:Does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

I was treated by Dr. Mehta in Albany in January 2011 for a jugular vein and azygous vein but my jugular had blocked up by the time of my checkup 3 months later and I've been thinking I might visit Dr. Sclafani as he seems really knowledge and helpful here in the forums...


Email me at ccsviliberation@gmail.com. I will try to help you

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: NY here we come.....

Postby Robnl » Thu Sep 06, 2012 3:39 am

Any news??
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Re: NY here we come.....

Postby allynz » Thu Sep 06, 2012 5:20 am

We don't regret going at all and Dr Sclafani was amazing but we haven't had the results we were hoping for. I would go back and try again if we could afford it because clearly there was/is a major problem but the veins were so bad I suspect they closed up again right away.
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Re: NY here we come.....

Postby allynz » Thu Sep 06, 2012 5:32 am

Just reading back over this thread I thought I had posted more than what was intended originally as a pm for tiltawhirl - my other posts must have been all been private to those that contacted me directly - sorry about that. I will come back and share more as I feel I owe it to all those eagerly following every fellow journeyman.
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Re: NY here we come.....

Postby Cece » Thu Sep 06, 2012 7:50 am

It's so disappointing. And so expensive. :(
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 8:42 pm

When we were looking for a place and Dr for my husband’s ccsvi treatment I was so keen to read the experiences of anyone and everyone that has done it already and promised to document our journey for others contemplating a similar journey so here I am.

We chose to go to NY and see Dr Sclafani – I did lots of research and whilst I was convinced this was the right treatment option to pursue I knew we would probably on get one shot so on that basis I wanted to go to the best and for me that meant Dr S. I didn’t want to come away wondering if we might have gotten a different result if we had gone to a different Dr. With Dr. S I hoped we would be in good hands and I was right. I am so glad we saw him and no-one else so American Access Care Brooklyn was our destination.

Dr S. makes it quite easy sending recommendations for hotels, indications of transport costs and even suggestions for restaurants. We opted for the Best Western Prospect Park Hotel that was mentioned on Dr Sclafani’s website but had been removed from the list of suggested hotels in the info pack because Dr. S. thinks the other hotels are in a better location and that his patients would enjoy staying in the other areas better. That might be true but this hotel worked out great for us and discovered that all 3 patients he was seeing that week were all staying in this hotel.

The pluses for me were that it is a new hotel. They offer an American Access Care discount (about $139 per night). Breakfast is included. About $7-$12 to Sal's office depending on taxi (all unmetered in Brooklyn). And best of all it’s right beside train which goes straight up the middle of Manhattan – perfect when walking any distance is a challenge - you can buy a 7 day train pass for about $25.

I was happy here plus the other hotels got terrible reviews on Trip Adviser. I posted a review for Best Western Prospect Park on Trip Adviser.
Last edited by allynz on Fri Sep 14, 2012 9:20 pm, edited 1 time in total.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 8:52 pm

On the first day my husband had an ultrasound which took about an hour and is very straight forward for the patient.
Dr Sclafanis’ office is just upstairs from where they do the procedure at American Access Care. He was running late for us as we were the third set of people he was to see that day but then we had about 3 hours with him so were certainly not complaining – just don’t make any other plans for this day, maybe take a book or go for lunch like we did with one of the other patients at the bar just up the road.

Yes he does talk a lot as others have mentioned but we were so grateful and he made us feel very comfortable. Sal is totally genuine, definitely not in it for the money ( I doubt there is really much money to be had actually). He is the real deal and totally passionate about helping people with ccsvi. My husband is quite a cynic and was totally singing Sal’s praises and was so pleased we came here and didn't go anywhere else given all the problems we later had - Sal said this was probably his worst/hardest case to date. He is busy but doesn't rush anything - on Thursday he spent the entire day non-stop with 3 sets of people, us the other kiwis and a european couple and then did 2 procedures on Friday, my husband Saturday and again Monday - no idea what else he has going on but he had all the time in the world for us.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 9:00 pm

The day before the consult and the day between the consult and the procedure we went into Manhattan – you are on the doorstep of this remarkable city you have to make the most of it and with the air conditioned train leaving right outside the hotel there is really no excuse.

There was a heat wave when we visited (not great for someone with ms) so we opted for more sedentary tourism options such as a bus tour, the circle line boat tour, up the Rockefeller Centre and to the 9/11 memorial, all hard going but you need to make the most of the opportunity and who knows when we might ever travel again. If you do the Rockefeller Centre or Empire State be warned, you are still looking at anywhere between 45m – 120m waiting and queuing times before you actually get up to enjoy the view. Also a visit to Bryant Park is a must – it’s a relatively small park right behind the amazing NY Library, between 5th & 6th Avenue and just a few mins walk from the train if you get off at 42nd street. It is an amazing place to relax, watch and experience NY.
Last edited by allynz on Sat Sep 15, 2012 12:13 am, edited 3 times in total.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 9:19 pm

So now we get to the procedure, which on average takes 2 hours – My husband ended up with 2 x 3.5 hour procedures. It takes about 60m-90m for the procedure to begin during which time the patient gets into a gown, gets asked lots of questions and has blood pressure monitoring etc. I stayed with my husband for this bit and then sat in the waiting room reading my book the whole time.

The first procedure was not smooth sailing. Several of the veins were perfect which is great, but the right jugular was 90% closed and after some effort was opened and cleared but the left jugular was 100% closed.

They couldn't get the catheter in at all and when they went to do it a different way my husband had some kind of reaction – they weren't sure if it was allergic or anxiety but it wasn't great and when Dr S. came out to tell me they thought my husband might need to be transferred to a regular hospital as they didn’t know what was going on but thankfully he came right after a while.
Of course I had a minor panic attack thinking what have we done but I also felt very grateful we came here and were in the hands of an expert, I felt he would look after us and being in a country where we spoke the language certainly helped – I could only imagine how scary this would be if we were somewhere else.

Dr. S invited us to come back on the Monday to try again and we went back to the hotel where my husband slept most of the rest of the day. Dr S. even came to the hotel later that day to check on him and the other kiwi who was in a lot of pain. Dr S. then drove me and the other lady to a pharmacy and waited while the pharmacist confirmed they could fill our various prescriptions despite us both being foreigners and it being quite late in the day. Thankfully by that night both guys were both much better and we all went out for Pizza together near the hotel - the actual pizza place was way too hot so we brought it back to the hotel and ate together in the breakfast room..
Last edited by allynz on Sat Sep 15, 2012 12:18 am, edited 2 times in total.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 9:30 pm

Monday was a fairly full on procedure complete with doses of Valium and anti-histamine in an effort to avoid another reaction. Dr Sclafani nearly gave up after 3 hours of trying to access the vein but he went back for one more shot and was successful.

This time he went in through the other groin and up but again couldn't get into the vein - he expected this after the first attempt so instead then went in through the neck and down feeding a lassoo down through the vein to catch the catheter trying to come up from the bottom, hooking it and pulling it up.

He said the whole vein is really bad and was collapsed in several places which is why getting the cathetar through from either direction was so hard. He could only use a 8mm balloon - it was 14mm on the other side so now the blood is flowing but the vein is very small so who knows what the effect would be - we would wait and see. This was another 3.5hour long procedure.

This is one of the worst and hardest he has ever done. Yes the blood is going through all the collaterals which is all wrong, apparently the veins through his thyroid are quite big as a result.

My husband was exhausted by this procedure but actually looked pretty good right afterwards. After the first round he looked terrible and was quite freaked by the whole experience. He slept all that day and most of the next but when he did get up he noticed improvements in his hand and foot with greater sensation and control. He also felt alot less constricted in his throat and felt that he could breathe more easily and his skin was much clearer.
Last edited by allynz on Sat Sep 15, 2012 12:21 am, edited 1 time in total.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 9:32 pm

We went and saw Dr Sclafani on the Thursday we left, the temperature had dropped so much we wished we were staying on to enjoy the city without the heat. It was great to have the opportunity to say goodbye and quite surreal seeing the next round of people in the waiting room. My husband was feeling pretty good with much better control over, and feeling in, his right hand and leg.

He found the trip home quite exhausting and the Pradaxa seemed to kick in making him extremely tired - he seemed to think it is tiredness rather than fatigue but it certainly knocked him around and he had several days where he slept most of the day. He has had some of his best days since being back but also several of his worst. We did write to Dr Sclafani and he has never had a patient on such a roller coaster but he's never had such a hard case before either and he is of course not an expert in MS so really all we can do is wait and see.

He had several mornings with quite stiff legs, later in the afternoon he is at his best but then one night after a great day he couldn't actually walk in the evening but by morning was ok again. Most days he seems to feel pretty average with ups and downs so we are just pleased he is not working at the moment so can try and take things easy and sleep when he needs to.

From my perspective I think perhaps he is one of the unlucky 5% who has the rare form of Relapsing Progressive MS rather than just primary progressive because the way he has been has been quite 'attack like' after reading up on attacks and thinking back it seems he had a similar attack just a few weeks before we went to NY which would technically mean it was the same attack and we traveled right in the middle of it. If our neuro were more open to CCSVi we might have felt inclined to call him to discuss it but we've just decided to wait until his next review appointment because there is very little he can do about it anyway.
Last edited by allynz on Sat Sep 15, 2012 12:23 am, edited 1 time in total.
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Re: NY here we come.....

Postby allynz » Fri Sep 14, 2012 9:39 pm

Now it's been 2 months. The Pradaxa is finished. He has been feeling pretty average and we are pretty sure the veins have re-stenosed as many of the initial improvements have subsided. Yesterday he went for a follow up ultrasound at home with instructions for the technicians from Dr Sclafani and our fears were pretty much confirmed. We need to get the report and send it through to Dr S. but it seems the 'good' vein has very poor flow again and they couldn't find the 'bad' vein at all indicating there is no blood flow at all. The Ultrasound Tech was most perplexed and called in the radiologist who concurred saying they knew where the vein should be but couldn't find it.

So I don't regret our decision to try ccsvi or our choice of Dr. but we are of course disappointed in the result. We hope others will continue to try ccsvi as for some the results are remarkable. This wasn't the case for us but if we could afford to we would do it again. We hope the Drs stay committed to learning more as this procedure is so new and there is much to learn.

Good Luck everyone, be brave and give it a go - who knows you could be one of the lucky ones.
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