Near 2 month update, follow up, spreading the word.

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

Near 2 month update, follow up, spreading the word.

Postby Jamie » Fri Aug 21, 2009 8:29 am

So we're nearly two months out.

In the last week Mel's slipped back a bit.

Nothing major and no MS type symptoms but the initial super energy has gone.

This has coincided with a weird feeling in her neck/jaw on the left side.

Again, she is still doing great but just a general feeling of tiredness is coming back a bit. However this has coincided with 12 hour work days, lots of stress and she's a witness in an investigation into someone she works with which is extremely upsetting.

Her follow up is 24th September.

She was similar to Lew in as much as she had 2x malformed, twisted left jugs. The left was stented up by the jaw but perhaps he'll need to relook at the twisting.

Apparently even in two months he's done that many and learned that much that he can be more aggressive and fix that.

She may not need it. Personally I'd rather it just be done then we can move on. Mel isn't thinking that way, she had a really tough time during the procedure as she doesn't respond well to pain meds.

But we'll see.

We are still 100% glad she did it and her life is much improved.

Isn't it great that if you start to feel bad then we know there is a solution and a reason?

So, spreading the word.

Mel works for a Foetal Interventional Surgeon.

His wife has had fairly mild MS for 24 years but she is starting to go downhill.

We forwarded the papers on, had chats with Meg and she has an appointment with Dake next week.

She's had tinnitus for 20 years and just desperately wants that to go away. That's what she'll settle for.

This Dr. is a bloody genius, the surgeries he performs on unborn children, the lives he saves every day, and he's a top man too. Reminds me of Dake actually.

Anyway, he's reviewed all this talk to a lot of surgeon pals and some neurologists and made the decision that its for real.

This is fantastic because once the word really gets out in Houston (huge Med center with lots of teaching hospitals) it will really spread!

I hope her treatment is everything she wants it to be for her, but I also hope that it goes so well that Tony becomes an evangelist for this. He's extremely well connected.
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Postby LR1234 » Fri Aug 21, 2009 8:35 am

Thanks for the update Jamie, Hopefully Mel will get her energy back soon.

Has she stopped taking the blood thinners now? If so when did she stop them? I am just wondering whether the blood thinners serve another purpose with regards to MS and its hypercoagulation issues
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Postby Jamie » Fri Aug 21, 2009 9:09 am

No still on them.

And her INR today was high which will contribute to feeling tired.
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Postby Loobie » Fri Aug 21, 2009 9:45 am

After reading your first post, I was going to ask the same INR question. Mine has been hard to bring up since we were taking it easy wtih the coumadin because of my bad reaction, but I just got my number back after going back on one pill a day instead of a half. Well I'm tired as shit today and told my wife "I feel off". Well my number was 2.9, so I'm chalking it up to that for me. At least that's the story I'm sticking to!

Concerning Dake and the procedure. We were some of the first. He knew what he wanted to do, but that guy is learning from each and every procedure. In my last "check in" I talked a bit about Holly and how she would not only want this to continue, but to thrive and improve. He fully agrees and I actually have a feeling that he has been somewhat energized, of course not by Holly's passing, but rather by her spirit and her commitment to this procedure and potential results. I am of the same attitude. I have been having some not as good as other days, but when I come back and have a better one, it's better then before, so I'm chalking this crappy Friday off as a Coumadin day.

So Mel doesn't do the pain meds well either? I'm going to tell them during that time where they get your health history and all that and talking to the young Dr. that they need to push Zofram with the morphine every time. Then I'm also going to have some MJ this time and see if I can completely do it this time w/out percocet. here's hoping she gets back on track!
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Postby mormiles » Fri Aug 21, 2009 10:08 am

Jamie, I hope Mel's stressors evaporate as soon as possible; they're very bad for her health. Between that and the Coumadin, no wonder she's so tired!

Steve and I will be there on 9/24 for the imaging---we hope to meet y'all then. You and I can have a cheerleaders' convention while Steve and Jamie compare MS and CCSVI notes.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Jamie » Fri Aug 21, 2009 11:01 am

Joyce!

Sounds excellent!

I'll PM you my cell phone number.
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Postby Loobie » Fri Aug 21, 2009 11:19 am

Missing you guys by only a few days. Super bummed!
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Postby mrhodes40 » Fri Aug 21, 2009 3:59 pm

Overall good news though Jamie!

I agree with the learning with every patient thing. Island Girl had a brachiocephalic anomaly that he did not fix... It may be repaired in the future. But we all understand this is new and not fully understood and that we are "guinea pigs" to a certain degree. I was DELIGHTED to sign up anyway.

I kind of wonder if the 12 hour days are not tiring themselves too. :wink: I mean did she do 12 hour days before?

Hey let me add a word on the coumadin fatigue-it is real and I felt a lot better when I got off the coumadin. I have been off now for 10 days and I feel so much better, plus the bruises are gone.

And also WOW on the fetal surgeon!!! How awesome that there may be some awareness in Texas. All we need is one or two good medical centers looking at it and presenting it as reasonable and things will be a lot more open.

Thanks Jamie for the post and positives. IT is good news
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Postby Sharon » Fri Aug 21, 2009 4:45 pm

Just to add my bit about Coumadin....By the time I got back to Stanford for my follow-up, I was feeling "out-of-sorts". I was not necessarily tired,but the energy level just was not there. It took me a day to recover from the trip. I have been off the Coumadin since August 5th....and, ooh, things are much better.

The wierd feeling in the neck and the jaw....Lew and I had a sensation on the bone behind the ear. I do not know about Lew, but I do not notice it anymore. I think we all are going to experience little aches, pains, sensations for a while. Remember folks, this was surgery. I had minor hand surgery last fall. It took about four months for the hand to get back to a normal state.

Great news about the doc in Houston.

Tell Mel to cut back her work schedule---geez, a normal, healthy person would have trouble with a twelve hour a day work schedule.

Relax this weekend
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Postby whyRwehere » Fri Aug 21, 2009 5:28 pm

My mom takes coumadin, and I asked her if she is tired from it...she says she takes it at night before bed, so she doesn't notice. Mind you, she is often tired ever since I could remember, and I feel like her now. When people talk about brain fog, I know what that is like, even though it is my husband with MS. I think it is wheat...it just knocks me out...sorry got a bit off track.
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Postby Daisyduck » Fri Aug 21, 2009 6:22 pm

To Jamie and Mel: I had noted in the last ten years that I, after having had one minor surgery and one major surgery, both involving either aenesthesia or pain killir drugs, my MS symptoms lessened for about a month, and maybe even six weeks. This is only a guess, but I think ther immune syustems fights hard against the invasiveness and the drugs? Again, after I had the four stents put in at Stanford, I was walking much better for about a month or so. Now I am struggling a little with balance again. But I will say absolutely that I am better now than I was before surgery in every other way. My ambulation has not really worsened so much as it did not improve permanently, and Dr. Dake told me to get a trainer and exercise, exercise, exercise. I hope this helps you some. Daisyduck
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Postby catfreak » Fri Aug 21, 2009 8:47 pm

Wow, 12 hr days and extra work stress will get a well person down, but a person with MS it's almost too much. Maybe once this is over it will relieve some of the fatigue.

I was working 50 hrs a week and would do a couple of 11 hr days, 2 10's and an 8 and then crash on Saturday's. Plus my Mom was in the hospital for 7 weeks during this time. Finally that is over for now and we are at 40 hrs.

Maybe Mel's will get better soon.

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Sat Aug 22, 2009 4:28 am

I'm still all in. The thing that I think we are partly dealing with here is what we always say; we are in uncharted waters. There is no "what to expect when you're expecting.........results" for this procedure. Hey, we're freakin' guinea pigs bigtime. I have already said this. No matter what this turns out to be. I will 'cross the finish line' for sure. I have a fairly good sized lump under my ear (you can feel it, not see it) where I think the stents are and I don't know if that's right? But the big thing is, just like when we were just on meds. We have to get after it big time in terms of PT. My shoulder thing is just so wierd. I mean my shoulder is STILL out of socket from spasms near the surgery aggravated site. I think it may be improving, but my scapulas been out of place since about a week out. And now my shoulder is literally covered in bruises that look like I have liver spots all over my shoulder from all the aggressive massage we are trying to get the muscles to let go.

I just keep reminding myself of that. I'm still taking three pills a day just for post op care and still have musculo-skelatal (sp?) issues, so I'm not even done recovering from this surgery yet. But it still doesn't stop me from constantly wondering if I am 'getting better'. It's almost as if I evaluate how I do doing everything more strenuous than tying my shoes.

My hope is that we get about 6 months out and we all went to have a big reunion and play soccer! I don't know how the rest of you feel, but my mindset is ever changing and right now I'm perfectly content to just stay the same and not get any worse while not taking any MS drugs. It feels better to stay there than to constantly be on the lookout for the good changes. However, when something works slightly worse, well that scares the shit out of me too. So I think, for me anyway, I need to attempt to just try and go back to "I'm living with MS" mode and not think that I'm fixed. Now how am I going to do that knowing that I will probably have more surgery in 3 weeks? Who knows, and I doubt I do very well with that. God look on us all for trying. We are simply not content to let this take us down without a fight. And since there are no good weapons in the FDA treasure chest, let's keep up the good fight and beat this MF down.
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Postby Jamie » Sat Aug 22, 2009 10:01 am

I read someone say the other day this isn't a cure, its just stopped my progression.

Well, surely that IS the cure.

Repair is a seperate matter.


This WAS meant to be positive, the tiredness is not fatigue like ms fatigue and she is on a lot of coumadin still.

and yes, we are still all in.
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Postby Sharon » Sat Aug 22, 2009 10:41 am

Jamie you wrote:

read someone say the other day this isn't a cure, its just stopped my progression.

Well, surely that IS the cure.


For me, I would agree...stop the progression and it is a cure. Others are going to differ with you. Some are going to say it is not a cure until the lesions are gone. To be honest....I really do not care what someone else wants to call it...if the progression stops, I'm calling it a MIRACLE!

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