DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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drsclafani
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Post by drsclafani »

CD wrote:I moved this from Cece's turn thread..

Dr. Sclafani a question please.

I had my annual Thyroid US recently. The US women was a Dr. She found more nodules, nothing new there, and the stents in my left jugular.

She used many different US attachments to take better shots of my neck and spent a long time, one hour on me. Even going behind my ear.

She had a 3D color Doppler, but did not have me sit up or inhale, exhale. She was just surfing I think. Lol

That said, she and another Dr wrote up the report to my Endo Dr. with an addendum attached saying, I had a stent in my left jugular vein that showed "incomplete occlusion." I have tried to look this up. What does that mean? I got my copy before the Endo Dr.

I still feel the same improvements, a few came back like ringing in the ears, a few better, like balance and energy so pretty much still better, not worse.
Thank you,
CD
firstly, why did you have a stent? i havent put one in yet and i am trying to figure out WHY people need them.
my colleagues in AAC have a composite rate of sent placement of less than 3%. in a total of nearly 600 procedures.

now you have a near thrombosis....what that means is that the stent is nearly thrombosed or clotted. you guys nee to not let this happen. Unless you have a thrombosis and a stent is needed as an emergency, you need to get a second opinion before you allow this. that is my opinion.

that being said, you have good symptomatic relief and that is not worth complaining about. I just worry that loss of the vein will lead to return of symptoms.

you need to go to an IR and get evaluated for your near thrombosiss, probably intimal hyperplasia
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drsclafani
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Post by drsclafani »

newlywed4ever wrote:Dr S - your last 'lesson' re: rendezvous is very exciting to me personally - we're going to get my occluded left IJV open yet...not tomorrow or the next day, but every step in this journey helps! Thanks for sharing :D
Sometimes they recanalize, sometimes they dont. But we need to keep hope
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what twilight cocktail were you given during the procedure?

Post by drsclafani »

CD wrote:Hi Magoo,
FWIW, I had Dr Siskin and he said my azygous was very tiny. The smallest he has seen so far. While he was ballooning it, a blockage at the middle, and then he did the arch, it was the pain you described. In the middle of the chest and through to my back. Ouch!

It was there as he held the balloon fully dilated. He did it many times. I must have said something or winced because he asked how it felt a few times. I said like a gallbladder attack would feel like. Sharp pain in the chest going into the shoulder blade and the back.
can people share their experiences with pain during the procedure. i

I do not sedate my patients. manyIRs give a cocktail of Versed and Fentanyl. versed is an anxiolytic/amnestic medication that reduces anxiety and causes loss of the memory of the procedures. Fentanyl is a short acting very potent narcotic that blunts the pain.

If anyone knows what they were administered OR NOT, please share here.
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formyruca
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Post by formyruca »

Prior to procedure:
5mg Valium orally
81mg aspirin orally
2mg Dilaudid intramuscularly

During procedure:
4mg Versed
200 micrograms fentanyl
60mL nonionic contrast
6000 units Heparin

I slept through the procedure, but woke up when jugulars were ballooned and right back to sleep.
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Johnnymac
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Post by Johnnymac »

Courtney said she was in a bit of pain during her ballooning, said it felt like the fentanyl would wear off slightly before the ballooning was finished. The only discomfort she has now is pain in her chest/back when she sneezes.

Edit: additionally, Courtney is mentioning today that she does have some discomfort, tightness in her chest through to her back while breathing deeply. Not pain really, just tightness and discomfort.
Last edited by Johnnymac on Fri May 13, 2011 10:53 am, edited 1 time in total.
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magoo
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Post by magoo »

Dr. S,
Here is what my report states:
"After dedicated SVC gram the azygous was studied and retrograde flow was noted with marked collaterals with a very tight web-like stenosis and markedly delayed emptying after selective injection venogram. 8mm PTA of the azygous genu (70%) stenosis was successfully performed with subsequent marked improvement in drainage."
I was told the valve was involved here too.
Medications used were: Versed 4mg, and Fentanyl 200mcg
I did have pain during the procedure. And, it was noted and discussed that I experienced an increase in pain during balloon inflation that was relieved after deflation.
What was particularly interesting, was the pain I experienced during the procedure was exactly the pain I had complained about for months prior to this treatment. It is now gone, except for the new chest and back pain.
Unfortunately, my headaches are still a problem. And, I remember the procedure very well although I had Versed. :)
CD, thanks for sharing. The pain you describe is exactly what I experienced.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Post by Bear2 »

I had lots of pain during my recent azygous balloning. It was very painful during the inflation of the ballon. I was given 75 mg of fentanyl on 4 seperate times during the procedure. It probably helped, but it was still very painfull.

My chest was very sore for a couple of days. I had hiccups for those 2-3 days after the procedure. Each hiccup brought pain from chest. After 4 days all soreness is gone along with those hiccups.

Jim
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Post by bestadmom »

I had some pain during the azygos ivus and ballooning and asked for more painkiller. I felt like I couldn't inhale without it hurting under my right lung. Immediately after the stenosis was ballooned, the pain and breathing discomfort went away. I had no residual pain at all.
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Post by Johnson »

I don't know what I was given in Poland, but they gave me something (the reports are rather sparse from them).

In my first procedure, I had no pain, but I know my mind fights anaesthetic, and I kept coming to semi-consciousness and looking around. Then the nurse would jump to my head and the docs would tell me to stay still.

In my second procedure I asked not to be sedated, and I was told that they didn't give me anything - but I am sure they did. I tried harder to remain still that time. I had only very minor discomfort.

I'm glad you don't use sedation. I like being conscious and alert. Even pain can be an interesting experience.

(edited: 43 kilobytes of fluff)
Last edited by Johnson on Fri May 13, 2011 7:51 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Post by lovebug »

I had my CCSVI surgery done by Dr.Arata at Pacific Interventionalists in Sept. 2010. The valve at the collar bone of the RJV was closed 70% and the valve of the LJV was closed 50%. I was given Fentanyl and Versed during the surgery. I had no pain during or after the surgery what so ever. I felt like nothing had actually occured in that surgical room! But I know I was mistaken. The Versed and Fentanyl worked very well. Somedays I wish I could have taken that stuff home with me for my nerve pain. But sadly none of my nerve pain has subsided after the surgery..........
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drsclafani
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Post by drsclafani »

lovebug wrote:I had my CCSVI surgery done by Dr.Arata at Pacific Interventionalists in Sept. 2010. The valve at the collar bone of the RJV was closed 70% and the valve of the LJV was closed 50%. I was given Fentanyl and Versed during the surgery. I had no pain during or after the surgery what so ever. I felt like nothing had actually occured in that surgical room! But I know I was mistaken. The Versed and Fentanyl worked very well. Somedays I wish I could have taken that stuff home with me for my nerve pain. But sadly none of my nerve pain has subsided after the surgery..........
Recently, i decided to begin my interrogation of the jugular veins by evaluating the juction between the sigmoid sinus and the jugular bulb and the jugular vein. Two recent patients required MRV AFTER the procedures to better evaluate the dural sinus segment.

The method i use to catheterize the sigmoid sinus is to advance a stiff glidewire through the bony canal and enter the dural sinus on the other side of the skull. I have found it very helpful as i will show on the DSASQ thread

However there is pain when the guidewire touches certain parts of the vein in the skull canal. I am trying to assess this pain and to figure out how to take care of it.

For those who may not know, i choose to NOT put in an IV in the arm or hand. I wait until i puncture the saphenous vein and through a sheath through it into the superior vena cava. Until then i can give no medications.

Any thoughts

Now i must evaluate this painful
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Post by Bear2 »

Dr Sclafani,
The one incision is the best idea yet. Only 1 stick is way better than an IV in the arm and the access for the sheath in the groin.

When the guide wire is high up and touches something(nerve), it is not painful but rather a crackeling sound and an uncontrolled twitch. It is a weird sensation but not painful. I am for less drugs if it helps keep me aware of what's going on.

You can knock me out when my wisdom teeth are ripped out.

Jim
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Post by Thekla »

I was treated in Frankfurt in August. I had no pain meds, except the local (and def needed more of that---I don't know how they judged how much and where to jab, but it was not enough) during although I did have an arm iv for the contrast followed by liquids to flush the stuff out of the kidneys. I did not need pain meds, the ballooning was not aggressive.

Aftercare was only low dose aspirin.
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Post by dania »

Dr Sclafani I have a stent that was inserted last June. It has now become pinched and bent at one end. Dr Arata was unable to get past the bend. It is causing me considerable pain. Meds do not help. What can be done?Can it be removed?
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Post by Cece »

drsclafani wrote:Recently, i decided to begin my interrogation of the jugular veins by evaluating the juction between the sigmoid sinus and the jugular bulb and the jugular vein.
Does it change any of your choices during the procedure, if an issue is found there?
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