LadyGazelle NEW INFO

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

LadyGazelle NEW INFO

Postby LadyGazelle » Tue Sep 15, 2015 6:16 pm

Dr. Siskin who did my CCSVI procedure in 2010 ballooned 5 areas but could not open the top of the left IJV due to "possible vertebral compression". I have been treated by upper cervical chiropractor as UprightDoc recommended for the past five years. A contact with someone who was in a 5-year study who asked her CCSVI doctor if he would look into my case. He called Dr. Siskin's office in Albany:

"Dr. Siskin said you have a styloid compression making it impossible to pass the inner jugular to the cerebral veins. Chiropractic manipulation will not resolve the issue according to his neurosurgeon and VS."

Dr. Sclafani told me I was under-treated when I contacted him in 2010... but the cheaper NUCCA route made me 5 years older with permanent double vision the neuro-opthalmologist insists is MS lesions on the brainstem causing "VI nerve pulsy" (since 2008). I need to have the sigmoid sinus cleared of possible arachnoid cysts and stented but it cannot be accessed.

Do I need bypass surgery? Who could do that? ...vascular surgeon ...spine surgeon ...cardiologist? I have been given the "runaround" by 2 brain surgeons and 2 vascular surgeons in Rochester, New York who UNSURPRISINGLY will do nothing for "CCSVI" with MS.
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Re: LadyGazelle NEW INFO

Postby CureOrBust » Tue Sep 15, 2015 10:29 pm

LadyGazelle2 wrote:Dr. Sclafani told me I was under-treated when I contacted him in 2010...
If he says "under treated" it implies to me he has an idea how he would complete the treatment. Any idea of what he is proposing?
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Re: LadyGazelle NEW INFO

Postby NHE » Tue Sep 15, 2015 10:38 pm

Hi LadyGazelle,
You may wish to read some of Donnchadh's posts as he has had experience with obstructive bone spurs on C1.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic25718-15.html#p231335
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Re: LadyGazelle NEW INFO

Postby LadyGazelle » Tue Sep 15, 2015 11:20 pm

I need to get the "gold standard" catheter venogram just to find out what the blockage is in my left IJV. That has to be taken care of with a bypass or something. I can't just tell a doctor what I need based on an opinion.

Can a catheter venogram be done to just assess that area? I am mostly worried about my double vision and I want some answers other than it's from a lesion on the VI nerve. My neuro-opthalmologist tells me she doesn't believe it's a venous issue. But I know it is! :cry:

I'm asking for Dr. Sclafani's suggestion what is needed now. Please?
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LadyGazelle NEEDS SCLAFANI INFO

Postby LadyGazelle » Thu Sep 17, 2015 1:54 pm

Can someone give me Dr. Sclafani's contact information?

I am having Dr. Siskin's offIce send my records to my GP to see exactly why he thinks the internal jugular vein could not be accessed 11/8/10.

Dr. Sclafani told me at the time, he thinks I was "under-treated" and he would like to do another procedure. I asked "uprightdoc" about the vertebral compression and I took his suggestion about seeing the chiropractor he highly recommended. I have been going since 2011 in hopes that compression could be fixed. The only way I would know is with the "gold standard" of catheter venography.

If Dr. Sclafani can get through the internal jugular vein, then a Utah doctor wants to go through that vein to clear the sigmoid sinus in the brain which could relieve the double vision I have had since 2008 after experiencing a whiplash in 2006. If he can't get through it, I will need bypass surgery but not without documentation Dr. Sclafani's CCSVI procedure failed. I was told the Utah doctor won't do the SS procedure if he already knows it can't be acessed.

I need to speak with Dr. Sclafani about this and I don't know how to reach him other than this forum.
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Re: LadyGazelle NEW INFO

Postby cheerleader » Thu Sep 17, 2015 5:27 pm

Google to the rescue....

Dr. Salvatore Sclafani
American Access Care
577 Prospect Ave
Brooklyn, NY 11215
(718) 369-1444

I would recommend steering clear of using CCSVI in descriptions of medical concerns with vascular surgeons, and speaking of severe jugular stenosis due to extrinsic compression. CCSVI is still not an accepted diagnosis----but jugular compression which creates intracranial hypertension is recognized. Here are some case studies to share with the vascular surgeons.
https://www.thieme-connect.com/products ... 32-1314274
http://www.ncbi.nlm.nih.gov/pubmed/21866063
http://www.hindawi.com/journals/cris/2012/293568/
http://www.ncbi.nlm.nih.gov/pubmed/22322614

best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: LadyGazelle NEW INFO

Postby 1eye » Wed Sep 23, 2015 2:48 pm

I think a lot of doctors do recognize the term CCSVI. It is controversial whether the procedure does anything for MS. I am one of Dr. Siskin's patients who say it did, for them. I know of others. I just met one in a movie theatre. It is not necessarily either effective or long-lasting in any individual patient. I believe the investigation with a catheter can be well worth it and can be done with no reference to controversy, especially if you already have a doctor's opinion in writing. Investigation alone does not require ballooning, or stents, or bypass, or follow-up long-term drug treatment. I think Dr. Sclafani often will treat if he sees something treatable, in the same session as the catheter-based investigation, because the catheter is also used in the treatment. I do hope he does not suffer from all the radiation used in these investigations. He investigates using intravenous doppler ultrasound, which can give much more information. It does not use X-rays at all. There are many more blood flow problems that can be pathological, cause symptoms, and can be treated with various procedures including bypass. Bypass has not had a lot, if any, success with MS. I would have to be much worse to try it.

BTW I believe Dr. Siskin was a student of Dr. Sclafani.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: LadyGazelle NEW INFO

Postby LadyGazelle » Wed Sep 23, 2015 10:00 pm

Thank you 1eye. Today I talked with a spine surgeon's Physician's Assistant and she understood talking about CCSVI after I explained how nobody wants to help me. I got the standard initial X-ray of my neck, but she told me it's not the right test to find vertebral compression of the IJV because it is outside of their area of expertise. She sent a note to my GP explaining she feels I need to see a vascular surgeon.

Tomorrow I will ask my GP to send a copy of the spine doctor's note from the P.A. to the vascular surgeon's OFFICE he has referred me to 2 weeks after my CCSVI procedure. (That doctor has retired.) So now that I have more information with the help of the links posted above and comments - I have a new plan and a practiced speech!

Thank you for your cooperation! I will have to wait a few weeks to see Dr. Stoner, (vascular surgeon). Fingers crossed :geek:

I want you to understand, if bypass surgery is suggested, 1eye, it's because I heard my diplopa could cause stenosis in the sigmoid sinus and the only way to get to it is thru the internal jugular vein. So I'm ready for anything! The neuro-opthalmologist reacts to my "knowledge" like "SUCKS TO BE YOU!" :roll:
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Re: LadyGazelle NEW INFO

Postby 1eye » Fri Sep 25, 2015 7:09 pm

LadyGazelle wrote:Thank you 1eye. Today I talked with a spine surgeon's Physician's Assistant and she understood talking about CCSVI after I explained how nobody wants to help me....
....So I'm ready for anything! The neuro-opthalmologist reacts to my "knowledge" like "SUCKS TO BE YOU!" :roll:


Many doctors never had a course in bedside manner, empathy, or anything remotely related. So, they never reached a level of maturity that allows them to remember that they too will most likely get sick, most likely be hospitalized, and will definitely die. Everybody does.

If a doctor even came close to saying that to me, I would reply: "When you die, I may be still alive, and I will probably always be happier than you."
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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