Crossing My Fingers...

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

Crossing My Fingers...

Postby healthymama » Sun Nov 15, 2009 3:13 pm

I'm "new" here too. I am so excited about CCSVI. I have been telling everyone about it. I have sent all my paperwork to Dr. Dake, just waiting to hear back from him. My mom wants to have all of her 7 children tested for CCSVI, when it becomes more available, because she has 2 daughters and a sister with MS and two other daughters who are starting to show possible signs of MS. I was just diagnosed in June 2009 and my sister a couple months later.

I am healthymama because I have chosen not to take any MS drugs. I still want to have more children and pretty soon, so I have been doing the Best Bet Diet and eating lots of raw food, and I have seen great improvements in my energy, brain fog and mood, not to mention losing a needed 55 lbs so far. But I also feel that I am not completely healed, fixed, or cured, whatever you want to call it. CCSVI make so much sense to me.

So that leads me to my first question. Do you think I might be rejected by Dr. Dake because I still want to have more children? Would the stents effect me in any way, particularly in labor? I am willing to wait to get pregnant as long as needed because I feel so strongly about stopping the progression, but also feel a huge part of me would be taken away if I was told I could not have more children, but I also know I need to be healthy for those children.

My next question is: How long does it usually take to hear back from Dr. Dake? I would fly out there tomorrow if he could fit me in. :) I'm sure all of us feel that way.

I have loved reading all of your stories and advise on this forum so far. I hope I can add my story to this group in the near future. Thank you!
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Postby mrhodes40 » Sun Nov 15, 2009 3:38 pm

Well Hi HM!!

Welcome! Please ask your question regarding labor and delivery to Dr Dake after he sees if and where you might have a stenosis and he offers what kind of repair might be done. Location and type may make a difference.

I will offer that if a large family can be evaluated he will be very interested based on past conversations. The idea that in a given gene pool you can tell the MSers from the healthy's by looking at veins is too good to be missing.

I mean c'mon, how many gene studies have tried to find someting specific about the genetics of the MSers vs non in families? Many!! with no conclusions to date, only trends.

Please know this is experimental we talk on this board as if it is not soometimes but it is not proven yet so keep that in mind, but study away!

Glad to meet you
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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby mrhodes40 » Sun Nov 15, 2009 3:45 pm

I sent you a private message you will see the bar on the left and look for your private messages bout halfway down, click it and read what I wrote.... :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Appointment with a vascular surgeon

Postby healthymama » Fri Nov 20, 2009 2:26 pm

I called a couple of vascular surgeons here in Utah and found one who was interested in helping me. I specifically asked if he corrects stenosis in the jugular veins and he says yes! I am scheduled for an ultrasound next Wednesday and an appointment with him right after. So now my big question is do I really need an MRI/MRV to see the vein problems, or will he be able to see a problem just because of the ultrasound?

My mom is also having my sister tested while she is visiting for Thanksgiving break. She has no signs of MS and is only 19, but my mom wants to get it done while they have good insurance.
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Postby MS_mama » Sat Nov 21, 2009 8:41 am

healthymama, that's great news! As far as I understand, ultrasounds should be done by someone trained in the Zamboni protocol, because it is more operator-dependent. You could easily have a "false negative." However, CT venogram or MRV would give a clear picture of the veins. Doppler is still important to see how the blood is flowing though, although there remains the difficulty of finding a trained technician.

Dr. Haacke says on his site (ms-mri.com):

Disclaimer: Although MRI may be able to detect stenoses, the results may also represent normal variants where the carotid artery has a pinched jugular. This may represent a false positive and suggests that the MRI scans need to be supplemented by careful doppler studies.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby radeck » Sat Nov 21, 2009 8:24 pm

HM, you peeked my curiosity with your question about future pregnancies. I can't think of anything that would cause a problem here actually, except for the radiation exposure from the X-ray (which shouldn't be such a big deal since people have these kinds of angioplasties often) and the small incision site (less than an inch) at the groin. Are these the factors you're worried about or am I missing something? Thanks.
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Postby healthymama » Sun Nov 22, 2009 2:12 pm

I guess I am a little concerned about the integrity of the treated vein. I would think that this procedure would only improve it, but I don't understand everything about stents and ballooning. I really want to have more children, so I guess that is why it is the first thing I thought about.

I don't want to wait, I see the importance of stopping the progression as soon as possible.
Thank you!
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Postby healthymama » Wed Nov 25, 2009 1:37 pm

I just got back from seeing a vascular surgeon. They did an ultrasound and did not find any stenosis, but I kind of expected that. The radiologist did say that my jugular veins were unusually small. I asked if that could be because I have a stenosis above the neck where they couldn't see and he said that was possible. He also said it could just be the position of my neck or I just have small veins.

Everyone seemed so nice and excited about the information I was bringing them, until I talked to the doctor. He said that this is too simple of an answer and that I should look at every new research coming down the line with "a jaundiced eye." But he was still willing to do an MRV and see what shows up.
I brought them the specific protocol, I hope they are able to do it right and that they find something. I should hear about the scheduling of the MRV on Monday.

So I feel this is a good start. If they don't find anything I am definitely going to send my scans to Dr. Dake or Dr. Haacke to see if they can find it. My mom was also able to get my sister's PCP to schedule an MRI for next week. She does not have MS, but she is only 19. My mom just wants to make sure.
Have a happy holiday everyone! :)
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Postby LR1234 » Wed Nov 25, 2009 2:56 pm

Thats great news healthymama!

So although you have not got stenosis you seem to have some unusual jugular veins...maybe that decreases the blood flow??? It will be interesting to see if the MRV shows anything.

Good Luck and keep us posted x
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Postby healthymama » Thu Jan 14, 2010 11:10 am

Last week the imaging center that was considering getting the proper protocol for the MRV called and said they were not interested, they are not a research facility and the research I gave them was "old". That was very disappointing, but a couple days later I found out that I am pregnant, which I am happy about. I was having an inner struggle between having another baby or waiting and getting treated first, the decision has now been made I guess. =) Actually I "blame" it on Incline Bed Therapy, it regulated my menstrual cycle and I have had so much more energy. I recommend it to everyone, but be aware of the consequences. ;)

So my quest for getting tested and treated for CCSVI is on hold. I wish everyone luck and hope the path will be a little easier in a year or so because of all that you are doing. Thank you all so much! =)
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Postby Cece » Thu Jan 14, 2010 11:46 am

Congratulations on your pregnancy!
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Postby Mutley » Thu Jan 14, 2010 12:06 pm

Healthymama that is wonderful wonderful news, congratulations to you both!! I think news of a baby coming is a lovely distraction from CCSVI.

All the best.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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