This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all!

Well, I had my angio on the 9th in Albany.
Here is the quick breakdown:
40% stenosis in my right IJV and a slight narrowing in my left IJV. Azygos looked ok. Both IJV opened.
Nothing new to report. Still feel the same as I did when I went in.

Here is the long breakdown:
I hesitated to write here because I wanted to give my body plenty of rest after the surgery. About a week has passed and so I believe that the meds are out of my system.
I will be writing on the stickies and adding to the polls on TiMS.
My family and I (wife and 2 young children) drove to Albany from Pittsburgh. It is about a 7-8 hour drive. I heard from nurses that people drove in as far as Minnesota. The people at Albany Medical were great. I can't say that enough. From the nurses to the techs to Dr. Mandato. My family was all there and the nurses helped out so much. All were excited to hear/see results.
The procedure itself was 2 hours, though I remember only about 20 minutes of it. Pretty painless. I was up and moving about 2-3 hours after. There was the “heat” of the incision that lasted about 2-3 days but nothing which I couldn’t handle easily.
After the surgery, Dr. Mandato stopped by. He went over what he had done and what to do post op (325mg of aspirin for 3 months). He also stated that they are doing surveys about the results through the web – Survey Monkey. They want to track outcomes and sending it via email to everyone that is getting the angio. So far about 200 people have been through there… about 2 a day in the hospital. Before asking me how I felt, Dr. Mandato repeatedly mentioned to give it 3 months. 3 months, 3 months 3 months. So I guess they are seeing better results later rather than earlier.
The next day, I went in for a follow-up ultrasound and “passed with flying colors”.

So what did I have:
Heat intolerance and exercising are what makes this list even worse. My best case scenarios are to be "at rest" all the time. Exercise is a subset of heat intolerance. Heat can come from the environment (over 70-75 degrees) or internal such as exercising over 10-15 min.
Scales: 1-10 1 is the Best and 10 is the Worst
1. Optic Neuritis (rt eye). Typically a 2-3. With heat 8, to where I am for all practical purposes blind.
2. Rt "leg drop" Typically 2-3. With heat - 7. The right leg feels like a ton of weight. It drags and drops unless I am fully concentrating on moving it. Also have tingling from time to time - like a light weight funny bone hit.
3. Looking downwards, 50% of the time, shoots tingling sensation to all extremities.
4. Cog fog. I strive to remember easy name/terms/words. I may pause for a min to try to remember what word I am searching for.
5. Double vision. I can "fix it" when I notice it.
6. Massive Fatigue. Typically 3ish. With heat - 8. I mean bad. As soon as I walk around for more than 10 min I can feel it. Exercising... yeah right. Lifting... yeah right. I am literally laid out. I have to sit for about 25 min just to get down to a 3 again. Going to an amusement park - are you kidding?
7. Rt leg twitching during evening hours and later. Does have the ability to keep me up. Have not had a full night sleep in over a year.
8. Odd temperature sensations. Comes and goes. Cold feels hot and hot feels cold.

What has happened after the surgery:
Well nothing yet Hate to say that here after all the good news that is going out but I do not feel any different. Took a warm shower – fatigued. Walked out in 72 degree heat – fatigued/footdrop in about 10-15 minutes. Cog fog and vision still the same.
So I guess at this point, I will give it 3 months. I will be updating TiMS and Albany on my condition as time goes on.

Rieja wrote:Hello all!
Well, I had my angio on the 9th in Albany.

congratulations!!

Rieja wrote: So I guess at this point, I will give it 3 months.

good luck!!

Rieja wrote:Heat intolerance and exercising are what makes this list even worse. My best case scenarios are to be "at rest" all the time.

There are many posts reflecting the importance of exercise. Are there exceptions to this rule? or is this another example of 'work through the pain'?
In the early stages of PAD - peripheral artery disease, patients are advised despite the pain, to walk walk walk.. get that blood flowing!

So much to learn

Yeah my best bet is probably the pool solution I want to excercise believe me. I didn't play 12 years of soccer lying down:P

It isn't so much of the pain as it is fatigue. I just can't move or I begin to fall over! lol. My parents have a pool and I JUST aquired one myself (moved to a new home). The pool is SOOOOO much better at this point.

I do want to run, bike, walk but it kills me lol. I am hoping to get this new pool up and running and starting off my regiment there

Thanks for sharing. Info from others, even if it isn't what we want to hear is critical.

I'm disappointed you didn't have the same immediate improvements that some others have had. Hopefully, it may happen over the next three months.

Please keep us informed. Take care

Best wishes for healing and wonderful improvements as time goes on.

Thank you all very much!

@Trish - good luck with your man. I hope all goes well for him at the casino as well

Blaze wrote:Thanks for sharing. Info from others, even if it isn't what we want to hear is critical.

I'm disappointed you didn't have the same immediate improvements that some others have had. Hopefully, it may happen over the next three months.

Please keep us informed. Take care

Yeah I am a bit disappointed too but not out of hope. I'll give it the 3 months and then maybe have a good talk with Dr Mandato I am keeping him informed anyway. Based on how he was pushing the 3 month wait time, he must have seen much more positive feedback at that point. I guess we will find out!

Rieja wrote:Thank you all very much!

@Trish - good luck with your man. I hope all goes well for him at the casino as well

lol! Thank you! Maybe he's on a winning streak!

rieja - I found your post of great value . You have given us an honest evaluation of the expectations of CCSVI treatment .

All too often ..... we read of those expecting miraculous instant results in spite of having some very severe and long time disability ........

Is it reasonable to exit the dentist's chair ..... and head for the nearest Steak House ...... and try out the new fangs ?

I do hope you take the 3 months ......... or longer ......... before you decide if your treatment has worked .... or has benefit .

From what I have gathered ........... a slowed .... or stalled MS progression ........... is a resounding victory .

I wish this and more for you ..........




Mr. Success

Rieja wrote:Based on how he was pushing the 3 month wait time, he must have seen much more positive feedback at that point.

Dr. Siskin talked about this at the Brooklyn symposium. Basically, yes, they've seen an arc that is not much to start but then gradual improvements. By three months you should know, you have my best hopes and encouragement!

What I hope is that after three months I can prove to myself progression has stopped or even reversed. I have a 1 month follow-up and I hope to arrange the next 21 months worth as well. I will be doing the MSFC which I have written about elsewhere on this forum. It covers some but not all bases. For instance there's nothing about temperature sensitivity. A thermometer, a bathtub, and the peg test will do fine so I may have this going by my 1 month.

My temperature limit (in air: the point at which I start to cuss) is really only fractions of a degree north of 73 fahrenheit.

My experience with Dr. Siskin was about the same: no earth-shaking improvements yet. Only time will tell.

Plus the snoring: I made a lot of noise during the Liberation. Just expressing my gratitude; it was all I could think of to do while I was asleep.

I wish us both continued improvement. Keep exercising.

Thanks everyone!

I just want to make clear what happened and some expectations. Looks like 1eye and I are in the same boat... wonder if I snored?


In any case I will keep everyone posted here. Prayers and hopes to all

MrSuccess wrote: I do hope you take the 3 months ......... or longer ......... before you decide if your treatment has worked .... or has benefit .

I will very much wait and see. I am a patient kind of guy and understand that only rarely do good things come right off the bat! I know my place in the grand scheme and hope that I fall into the gradual recovery state

After talking to my darling man last night, I don't think he's experienced remarkable results. He hasn't followed other people's experiences the way I have. He also doesn't research things the way I do. He lives his life, day to day, and resigned himself to Primary Progressive MS. We've never discussed the improvements that other people are having. So, I know that any improvements that he feels are not a power of suggestion.

He went into the CCSVI procedure with no expectations. I'm sure he had some hope but he's a very pragmatic man. He doesn't believe in miracles.

Right now he's started keeping a journal. He's going to document any changes that he feels for the next three months.

When he told me that he had feeling in his feet (he didn't know that other people have experienced that), I knew the procedure was working.

We still have so much to learn but I know we're on the right track.

The man doesn't believe in miracles, yet he has a woman like you on his side! What more evidence does he need!

Very glad the procedure worked, feeling in the feet is a good thing to have. Crossing fingers that more gradual improvements come.