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Hi Everyone,

I'm new here. I've tried to post 2 times previously, and both times my posts were wiped out. Being that they were hours before, and hours after my surgeries, I was too tired to rewrite them.

I have a few questions regarding post-surgery, and am hoping that some of you would be willing to weigh in.

First, a little background...

My surgeries were in 2 phases, as my Doctor prefers not to do two veins at once.

My azygous vein was 60% blocked and my Left Jugular was 90%. Evidently because the LJ was so bad, the blood was "jumping" veins and was forcing it's way through a much smaller exterior jugular vein.

Those were the results of surgery #1.

4 days later I went back for #2, and asked the doctor to please take a look at my LJ to see how it was doing post-surgery. At that time, he found that much lower down on the LJ vein there was some major crimping, and that it was blocked there as well.

At that time, a larger balloon was used on the LJ.

That same day my right jugular was opened, which had been 60-70% closed.

It's now about 10 days after my 2nd surgery, and my left jugular is very uncomfortable. I would say that it's painful, at about a 5, on a scale of 1-10. I am trying very hard not to sleep on that side, and am very guarded when hugging people.

Also, there are certain ways that I cannot turn my neck without it feeling like something is going to pop...vein wise, that is.

And, there are walnut or larger sized places under the skin in my groin area, on either side. I had a sonogram on both of them last week, per my Dr's request, and they found only a small hematoma.

So now the questions....
1. Is this jugular pain normal?

2. Will the walnuts go away eventually? (Please say yes!)

3. After reading some of the post-surgery issues that others are having, I'm wondering if I should be on a blood thinner other than aspirin?

4. I am incredibly tired. Is this normal? (My trip home 7 days ago was via about a 22 hour train ride...but I had hoped to be bounding around by now.)

5. Do any of the rest of you deal with really low blood pressure? I've battled it since getting sick a few years ago. Yesterday it was 81/54.

If I'm ever able to figure out how, I will post my before and after videos. I definitely see improvement in many areas, but when our weather changed from 75 degrees to 40 something within about 12 hours, the old familiar headache woke me this morning, and fatigue set in like crazy.

Many thanks for reading...

Welcome Tnc

Certainly someone will pop up and share with you. I haven't got the procedure therefore I can not comment on the after feelings.

I trust all will be OK with some time in tho; good luck and cheers!!

Welcome to the forum, what lousy timing for your posts to get wiped out.

I don't know the answers to your questions. One of the things that can be done post-procedure to see how things are going is to get a doppler ultrasound to check the neck, especially that left jugular.

You could also work with a hematologist to see if you are clotting or what your blood numbers are (?). (Question marks are when I'm not sure about what I'm saying, sorry.) Is there any CCSVI doc closer to you? Are you US or Canada, insured or noninsured? I hate that depending on answers to that last question (Canadian or US but noninsured), things might be more difficult. But not impossible.

I had the opportunity last summer to go with a doctor who put his patients on aspirin only after the procedure. Even at that time we'd heard enough clotting stories and had Dr. Zamboni's advice that patients be put on an anticoagulant (which even rules out plavix, an anti-platelet) that I chose to pass.

Hi Cece,

Thank you so much for your help!

I am in the US and have great insurance.

What medicine is it that you would want a doctor to put you on if you were to go with them?

There are no CCSVI docs close to me that I am aware of.

I think I'll just call my doctor who did the surgery and ask how to get my blood numbers checked. I have a scheduled blood draw for my neurologist already in hand that I haven't had done yet...so I could just see if those areas (clotting, etc.) are already being checked.

Thanks so much!

I am going with Dr. Sclafani, who uses a once-a-day heparin-like injectable called Arixtra.

Another doc who I recently considered was using Lovenox, which is also an injectable.

Most common seems to be Plavix, which is a step up from aspirin only, but I am not convinced it is enough. Least common is Coumadin, which is quite strong, but some are put on it post-treatment if clotting is found. None of this is solid yet, there are risks to being on blood thinners and risks to not being on them.

Calling your doctor is the best idea. I hope you'll keep us updated too.

TNChickie wrote:Hi Everyone,

I'm new here. I've tried to post 2 times previously, and both times my posts were wiped out. Being that they were hours before, and hours after my surgeries, I was too tired to rewrite them.

I have a few questions regarding post-surgery, and am hoping that some of you would be willing to weigh in.

First, a little background...

My surgeries were in 2 phases, as my Doctor prefers not to do two veins at once.

My azygous vein was 60% blocked and my Left Jugular was 90%. Evidently because the LJ was so bad, the blood was "jumping" veins and was forcing it's way through a much smaller exterior jugular vein.

Those were the results of surgery #1.

4 days later I went back for #2, and asked the doctor to please take a look at my LJ to see how it was doing post-surgery. At that time, he found that much lower down on the LJ vein there was some major crimping, and that it was blocked there as well.

At that time, a larger balloon was used on the LJ.

That same day my right jugular was opened, which had been 60-70% closed.

It's now about 10 days after my 2nd surgery, and my left jugular is very uncomfortable. I would say that it's painful, at about a 5, on a scale of 1-10. I am trying very hard not to sleep on that side, and am very guarded when hugging people.

Also, there are certain ways that I cannot turn my neck without it feeling like something is going to pop...vein wise, that is.

And, there are walnut or larger sized places under the skin in my groin area, on either side. I had a sonogram on both of them last week, per my Dr's request, and they found only a small hematoma.

So now the questions....
1. Is this jugular pain normal?

2. Will the walnuts go away eventually? (Please say yes!)

3. After reading some of the post-surgery issues that others are having, I'm wondering if I should be on a blood thinner other than aspirin?

4. I am incredibly tired. Is this normal? (My trip home 7 days ago was via about a 22 hour train ride...but I had hoped to be bounding around by now.)

5. Do any of the rest of you deal with really low blood pressure? I've battled it since getting sick a few years ago. Yesterday it was 81/54.

If I'm ever able to figure out how, I will post my before and after videos. I definitely see improvement in many areas, but when our weather changed from 75 degrees to 40 something within about 12 hours, the old familiar headache woke me this morning, and fatigue set in like crazy.

Many thanks for reading...

1: My bf had pain in the jugular area, had 70% stenosis and was ballooned. The pain was only for a week or so.
2: No walnuts here! Sorry!
3: My bf is on Arixtra for 20 days, subcutaneous 5 mg.
4: Incredible fatigue after procedure is SO normal. My bf was fatigued for many days after.
5: No low blood pressure here. Sorry!

Hope this little bit helps. Bf was liberated a couple weeks ago.

I have had pain in both jugulars on and off for the first two months, more in the 90% stenosed one (bigger balloon more tearing I would expect), not unbearable though but quite obviously coming from the jugulars in the neck area. I had angioplasty almost 3 months ago for me and now it is perhaps once a week or so.

Docs are all over the place regarding blood thinners and anticoagulants for the simple reason that there is really no scientific evidence that it is helping or that it is not helping. I would say being undertreated is a much bigger problem that the after treatment drugs with respect to restenosis and clotting as no amount of thinners and anticoagulants is going to keep too small of a stent stent clear or a vein ballooned with too small of a balloon.

I had my procedure done 4 days a go, I was ballooned only(all 3 veins).
Since yesterday I have pain in LJ and RJ both, it's a bearable pain (so far)
I must take Aspirin 325 mg once a day

brave

It would make sense that pain might be greater or last longer in the weeks after the procedure with these bigger balloons at higher pressures, does that seem to hold up with what people are reporting?

Hi TNChickie,

As you requested on the Dr. Mehta/Kacey thread, here I am to try to answer your questions

"So now the questions...." with my answers:

1. Is this jugular pain normal?

I do not believe your pain level of a 5 on a scale of 1-10 is normal. I believe you should call Dr. Mehta.

2. Will the walnuts go away eventually? (Please say yes!)

I don't know, but years ago, I had an IV in the top of my hand during surgery and developed a "walnut" which took about three months to dissolve away completely.

3. After reading some of the post-surgery issues that others are having, I'm wondering if I should be on a blood thinner other than aspirin?

Well, I felt that my personal MS history warranted me NOT to take anything stronger or different than aspirin which is an anti-inflammatory, antipyretic, antiplatelet, anticoagulant blood-thinning medicine. Even aspirin has side-effects, BUT coumadin (Warfarin) has even stronger side-effects than aspirin.

Some of the side effects of coumadin are neurological and include: paralysis, paresthesias, difficulty with swallowing and breathing, pain, headache, muscle weakness, and numbness -- these can confuse the picture for pwMS and make those existing symptoms even worse and are why I would have refused the medication. Since you are concerned, I think you should definitely call Dr. Mehta with this question.

4. I am incredibly tired. Is this normal? (My trip home 7 days ago was via about a 22 hour train ride...but I had hoped to be bounding around by now.)

This is a procedure that seems to take its toll on some pwMS, especially those who travel from afar. Also, the body and brain are dealing with new blood flows, so being tired sounds like a symptom one could expect to have after the procedure; I was extremely exhausted for a month afterward. If you're worried, put this on your list of questions for Dr. Mehta.

5. Do any of the rest of you deal with really low blood pressure? I've battled it since getting sick a few years ago. Yesterday it was 81/54.

After having "fainting spells" from blood pressure readings even sometimes lower than yours for the first five years after my diagnosis, my blood pressure readings inexplicably increased into the normal range where they have remained for the past five years -- I haven't fainted since. Whether or not you're fainting or even feeling lightheaded upon standing, I think you should also put this one on your list of questions for Dr. Mehta.

I hope you do follow up with Dr. Mehta and then get back to us with an update. I'm going to copy this post over to the other thread.

Best of luck
~HappyPoet

Cece wrote:It would make sense that pain might be greater or last longer in the weeks after the procedure with these bigger balloons at higher pressures, does that seem to hold up with what people are reporting?

CeCe, Dr. Sclafani ballooned my bf low and then went higher than he normally does. And it was quite high! But, the pain went away after a week or so.