This Is MS Multiple Sclerosis Community: Knowledge & Support

I posted this on another topic, but just c/p here. I have rested a lot, thank you HP. I used to refer to myself as a narcoleptic insomniac. I was so tired I could fall asleep at any time for no reason, but when I tried to sleep, I was so scatter-brained and forgetful I would just lay there stressing about remembering things. I couldn't sleep. When I did sleep, I woke up often and couldn't fall back asleep. Anyway, on to my other post...

You know, I posted days ago, but I have no idea where it went! My apologies to you all. I have been doing wonderfully and I am SOO thankful for all of you thoughts, prayers, and checking on me.

The procedure went well, though it was more than I thought. I wasn't really prepared for what happened, but it wasn't bad...I just had no idea what to expect. Anyway, my left side was blocked 80%. My right is blocked 70% and I don't know about the azygos or whatever it is yet. I am scheduled for the 30th to finish up.

Since the procedure, the first thing I noticed was my sight. The only real problem I had (so I thought) was double vision. I do still have that, but I can see clearer and colors are brighter. It was amazing to look around...and the sunset! Wow! I am not nearly as tired as I usually am. I can think clearer and remember stuff better now. I thought I would be super excited and want to fit the last 18 years into the next two weeks. But I didn't. I am actually enjoying the quiet in my head. I am relaxed and I just want to sit quietly and think clear thoughts. It's so wonderful. Even if I don't get any better than this, it is more than enough for me. I can read again and understand what I am reading. I can remember things and I don't have post-its all over the place. I used to staple notes to my purse so I didn't forget to do things in town before I went home from work. I don't do that now and I love it. I am in absolute awe at the fact that I am part of such a revolutionary process. I will try to keep up with you all and not leave you in the dust.

Oh, and I haven't had to refer to anything as "thingy" since the procedure either. I can remember what each "it" really is and call it by name. The only things I have called "thingy" are the things that I didn't know what they were anyway. Blessings!!!!

Soooo glad for you, Kaboodah! Amazing news!
Michael and I spoke at the Roundtable at the Egg in Albany last week(ish). It was amazing to meet some of the folks who have had the procedure done and the mindblowing results they have had. I thought Michael had good results, but my goodness!!! Some of these people had such dramatic results, it was so moving! To me it was vindicating. I know there are a few minds out there saying "this is all in your head". But it isn't. The proof is in the patient. I was in awe of these people.
It was amazing to be on a panel with Dr. Dake and Dr. Haacke. They are smart dudes. Of course, they're no Manny Mehta, but they'll do in a pinch!
Michael and I are going to see Dr. Mehta again in December. We'd like to see if he would consider another procedure on Michael. While he is still doing well, he has become pretty quiet and tired again. Certainly not to the same degree as prior to the procedure. Dr. Mehta said this was possible, but was unsure about the timeline.
Hope everyone out there is feeling well, wishing you all a wonderful holiday season!

So sorry it took me so long to respond. I'm sure you understand. I have been very busy. I'm not going crazy or anything, it just feels so good to be able to just do anything! Im sorry to hear that Micheal is falling behind again, but glad to hear that it took so long for the symptoms to rear its ugly head again. I wish it was permanent, but almost a year is better than a few weeks. I don't ever want to feel so low again. I am confident that one time that we have to go back to have the procedure done again will be the last time because they will have figured out how to open up the veins permanently. I was at the roundtable and heard you and Michael speak. I can't wait until I can get the download to show my family. It was a lot to take in. I am so glad my husband came with me. He understood it more than I did. When Michael asked "What was the question?" lol..I was thinking the same thing! My progress has been amazing, but what is better.... I still have the right and azygos to go. Even now, I can't imagine feeling better than this. Seeing straight would be nice. What I am looking forward to now are the small annoyances to go away. Ok, my husband is "reminding" me that we have some work to finish up before we go to bed and back to work in the morning. God Bless you all and Merry Christmas!!

Oh...Part 2 is Tuesday!!

kaboodah,

I'm so very happy you're enjoying your improvements.

Would you please do me a favor this time by not going to the gym until after your endothelial lining has healed from the venoplasty which I think takes approximately three months. If you must exercise, perhaps Dr. Mehta can advise you on how to minimize your risk of thrombosis, intimal hyperplasia, and/or restenosis.

Best of luck on Tuesday!

~HP

Dear Happy Poet,

OK...so I really have to thank you for posting that about the gym!

I had my procedure on the same day that kab had hers...and was evidently in the bed right next to her.

I wasn't aware of the concerns about exercising. Thank you for sharing, as I was about to ask for a gym membership for Christmas.

HP, did you happen to see my post from a few nights ago asking about pain in the jugular site? It's a new thread. If you wouldn't mind, would you please pop over there and weigh in on the 4-5 questions that I posted?

I'm one of those who didn't do a lot of homework before having the surgery done...so much of what may have been discussed on the forums previously, I haven't seen.

I did do some...just not a lot, and almost none via forum, as my head was too "buzzy" and swimmy to be able to process it all.

Have a great night!

Hi TNChickie,

As you requested on this thread, I tried to answer your questions on the other thread. I'm copying that post to here:

"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.

Best of luck
~HappyPoet

what is the cost of the treatment???

Welcome Cracker,

Dr. Mehta does his CCSVI procedures in two separate visits; for example, he'll venoplasty the LIJV on the first visit, and then he'll venoplasty the RIJV and Azygos on the second visit. Each visit is $10,000 for a total of $20,000.

Note: He can no longer accept Medicare.

Best of luck.
~HappyPoet

So it is possible that if a patient had a jugular with no stenosis and only needed one jugular (and the azygous) ballooned, it could be done in one procedure for $10,000. But you'd have to get lucky and have that configuration of CCSVI.

Kleiner also said in another thread that his aunt, since she was coming from so far away (Canada), was able to have both jugulars ballooned in a single procedure. That would seem to be the only way to make this financially smart as a self-paying patient, since the full procedure can be had for $7500 - $10,000 elsewhere.

Dr. Mehta is more cautious and there are patients who want a more cautious approach.

Hello everyone. I am currently looking to get into Dr. Mehta's office to be tested for CCSVI, and was wondering if someone that has had the liberation treatment done by Dr. Mehta could please give me some insight on what to expect. Any replies will be greatly appreciated. Thank you.

Dr. Mehta is a very capable vascular surgeon with a lot of experience. His facilities and personel for CCSVI are impressive.

If you're without a participating insurance company it could get rather expensive though. I had two procedures done there and the charge would have been approximately $15,000 per procedure without insurance.

From what he told me during the time of my procedures, was that his patients were or had experienced improvements.

I can only tell you what my outcome was, which probably isn't the norm. I ended up clotting (LIJ) after the first procedure, not sure of the outcomes after the second procedure. He was unable to balloon open the clotted LIJ or remove the clot during the second procedure. I've been on warifin sodium ever since, making sure (hopefully) that my RIJ doesn't clot (2nd procedure) and that my LIJ doesn't clot anymore than it had. I'll find out when I go for my 3 month ultrasound in 3 weeks.

If you decide to go through him for this procedure I'd suggest, just my opinion, on insisting on a blood thinner for a time afterwards to give your jugulars time to heal as a precaution. His protocol at the time, not sure if it still is, is 81 mg aspirin after the procedure.

Ok thank you very much for your insight. So, have you seen any improvement?

The juries still out on improvements. Warifin can give you side effects and I'm hoping that these are some of the things that I'm experiencing...fatigue and leg weakness. I've been SPMS for the last, I don't know 8 years and was diagnosed RRMS in 1979. I wasn't expecting any quick symptom fixes, but hoping for improvement over time.

Good luck on your CCSVI journey if you decide to take it.

Thank you, I appreciate it. I was just diagnosed in August of '08 and was never given an actual type to it like PPMS or RRMS, and am currently 29 with two young children so I definitely can use all the good luck I can get.