This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks to Dr. Sclafani and all his staff for their kindness during my husband’s treatment in Brooklyn on 4/1/2011.

A little background – My husband was diagnosed in 1975 at the age of 26. The year before he had ON, but when diagnosed his leg was dragging and he was losing arm strength. He has received many treatments including ACTH and prednisone during the years when he was RRMS and he always bounced back without any deficits. Mid 90’s he started Betaseron and the last three years he has been on Tysabri. The mid 90’s brought SPMS and he has slowly declined. Major decline has been in his ability to walk, constant back pain, numbness in legs (below knees) and feet, feels like he is walking on balls, terrible leg spasms, and most recently bladder issues. He has tremendous arm strength. Don’t know what we would do if he didn’t.

Procedure - Bill received his ultrasound on 3/31/2011 from a very nice Tech in Dr. Scalfani’s office and was told that he had reflux in both internal jugular veins. Procedure was performed on 4/1/2011 but not without difficulty. Dr. S said Bill was his toughest case to date. The RIJV was narrowed and he was able to open with good flow. The left had a flap at J2 (or was it J1) closing it off and had no flow. He was able restore some flow to the LIJV. Dr. S said that Bill has very large IJVs. I had noted - 20mm right and 18mm left. The other veins were not checked. This was a very long procedure and there were issues that developed with the sheath and balloon that gave Dr. S a great deal of stress and my husband a great deal of pain. (Dr. Scalfani - If I have stated anything incorrectly, please feel free to correct me). I will add more when I receive the written report.

What has changed? - Almost immediately the constant pain in that one spot on the left side of his back that he has had for 15 years, subsided. Bill said it is reduced by 50%. We have dealt with numerous pain doctors during the years and this is the best it has felt even with all the pain meds and procedures. The numbness in his legs and feet has also lessened. The feeling of walking on a ball has gone away.

What has not changed? - He still has back pain but on the right side that goes down his hip and leg. This has been pretty bad. He also continues to have the leg spasms. His ability to walk is limited.

He came home with a terrible cold that is dragging him down.

I hope that Bill will not restenose or develop thrombosis or scarring. Only time will tell. Hopefully more will be learned and other veins will be checked. No one can tell us there is no connection. Can you imagine that someone who has felt like they were walking on balls for more than ten years, can have this sensation eliminated with this one procedure?

Again, thanks to Dr. Sclafani and the whole team.

It is in many ways surreal! I hope that as he recovers from his cold and the strain of the procedure (which sounds like one for the record books) and the travel, that he continues to feel better and see improvements. It sounds like the pain on the right might have gotten worse for him? It is unfortunate if this is the case. But good that it has been so reduced on the left. When you say other veins still need checking, that would include the azygos?

**hugs** Thank you for the update, I am glad he has seen some improvement, and hope that there will be more to come either over time or after future procedures when those additional veins can be checked!

Nice to hear of some improvement. Did Dr. S send him home with an ac drug? Dr. C sent me home with Plavix for 60 days. One week to go.
-Dan46-

Wishing your husband many more improvements in the future!

I also got a very bad cold after my procedure, as did many other people. I wonder if there is a connection.

I am mystified what it is creates these aftereffects? Is is stress? The hospital? Traveling in a plane?
I recall after returning from SUNY to Detroit i suffered the first UTI I had ever had in my life. Was it the catheter? Contrast Dye? THat posion warfarin? Who knows I just pray you keep feeling better all.

Thank you all.

It sounds like the pain on the right might have gotten worse for him? It is unfortunate if this is the case.

I have no answers. I don't know if it is worse or if now that the constant pain on the left is reduced, he is feeling the pain more on the right. I never realized that he was having the pain on the right. I was worried about a blood clot and Bill said "no" he has had this pain before.

When you say other veins still need checking, that would include the azygos?

He did not check the Azygous. I think because it was already such a long (and tough) procedure. Only the RIJV ad LIJV were checked off on the sheet that we received when discharged. Neither Azygous nor iliac were checked.

Did Dr. S send him home with an ac drug?

He is on Arixtra for twenty days and a baby aspirin a day. Dr. Sclafani talked about keeping him on the Arixtra longer. I will contact him in a few days and see what he recommends.

This cold is really taking him down. He even has a mild case of laryngitis.

Wishing your husband the best. I'm sure any improvements mean a lot to him. I'm sure it's nice to know you have a doctor as caring and meticulous as Dr. Sclafani.

The thing that went through my mind is that if people like your husband have the treatment early on, can the damage be stopped? If people feel any improvements after 30 years of MS, imagine if it can be treated earlier. I think I've seen some things that younger veins may also respond better. It's all very interesting, and I look forward to where the science goes.

Center,

I wonder too. Since he had no flow in the LJV because of the flap that closed off the vein. Was he born with this vein closed off?

maggie mae, thanks for your update and the info. you supplied about your hubby's condition before hand.

so glad to hear he has had some improvement. hopefully when his bad cold is under control he will notice more improvements. when i get a cold i can get as weak as a kitten. so, i'm sure the cold may be masking some of the benefits. the best thoughts and prayers of healing are sent your way.

This was a great melodrama from beginning to end.

It started off easy enough. Classic valvular stenosis confirmed by IVUS to be incompletely opening valve leaflets. This was a large vessel, measuing 20 mm at its widest diameter. A 20 mm balloon 4 centimeters in length was used to dilate the valvular fusion.This was accomplished requring 8 atmospheres of pressure. Post dilation flow was excellent with no stasis, or feflux.with excellent flow and no residual .

The left jugular vein was a bear....catheterization was exceedingly difficult because the vessel orifice was so stenotic. Multiple guidewire and catheter shapes were used and we ultimately traversed the area of stenosis.
Again IVUS showed that the stenosis was caused by incomplete opening of the valvular apparatus.

It was at the during the final dilatation of the LIJV, that contrast was seen leaking from the balloon. .

We therefore attempted to exchange of the broken catheter to a fresh one.

However this was easier said than done. We then spent the next two hours trying to get the balloon out.

What happened was that the balloon tore circumferentially near the end of the balloon closest to the outside. I tried to pull the balloon catheter gently into the tip of the 10 French sheath. To no damn avail. Try as i could I could not get the ebd if tge catheter nor the balaloon to come out. It appeared that the balloon clumped up. Brute force would have torn vein and caused a lot of problems.

I called my colleague from the adjacent room to lend a hand and a brain. We fiddled for a while and both came to the conclusion that this bad body wasnt going to cooperate

So the general rule in such cases is to step away from the table, take a deep breath and then try something new. This is what we did:

Thinking that two heads make better than one, we punctured the right femoral vein and placed another catheter, figuring that two catheters would be better than one. Perhaps we could get the catheter out from the right side. So we introduced a snare, sort of like a loop of wire on the end of a wire, through the right sided catheter. We placed this around the end of the broken balloon catheter and pulled it down to the right sided puncture hole. eventually we accomplished this and pulled the tip of the catheter, unfurled balloon and all. toward the right femoral sheath. We were able to grab the guidewire that was in the left sided catheter out the right femoral sheath. Now we had both ends of the catheter under control.

Then we put in a larger sheath in the right femoral and pushed. This did not appear to do anything and we made a call to the surgeons on our team. While my collague made the call, i tried again and finally got the balloon to come out.

But having bailed myself out of a big problem, i still had to finish the procedure. so up back into the left IJV i went. A venogram was performed to check the left sided angioplasty. We found a flap of the vein wall hanging loose in the vein, like the uvula in the back of the throat.
because there was good flow, i decided to leave it alone.

Next we actually did study the azygous, then the renal, then the ascending lumbar and the inferior vena cava. . All unremarkable.

the patient was sent back to the hotel on aspirin and anticoagulation. He came back to the Brooklyn AAC Center on Monday and I performed an ultrasound exam. There was good flow in both femoral veins and in both jugular veins! the flap was still present .

Glad I do not have try to do that very often

Wow! Oh wow. You have an exciting life. Did you have to call in Tony's cousin Enzio?

I like your resourcefulness Doc. It must have been a hair-raising time. And to finish the job so perfunctorily... My hat is off to you, sir.

_________________
My name is not really Johnson. MSed up since 1993

Thanks Dr. Scalfani for taking the time to explain. Reading about the procedure, I can see how much I missed or misinterpreted during our conversation.

WELCOME TO
THE ITALIAN FISHERMAN!
not only on the west side of NY but now available guerny side!

Sal,
I think i felt your college ring in my illiac vein after my prcoedure. Any suggestions?

marry me

Going back in seems brave of both doctor and patient! Have you had a balloon break on you like that ever before?