When to consider CCSVI?

[Beth]

Hi,
I have posted about my daughter previously – she is a Diamox/mast cell treatment success story. Or she was until the headaches returned. The Diamox had totally relieved the headache for almost 4 months. But, in January, the headaches returned with a vengeance – back to a constant 7 or 8 out of 10. We increased the Diamox and her headaches relieved some, down to a 3 or 4 out of 10 most of the time and periodically as high as 8/10. We are increasing the Diamox again and will see if it helps. We have started baking soda capsules – approximately 1,250 mgs a day. But, after almost a month on the baking soda, I don’t see any marked improvement.

This return to the symptoms makes me ask a lot of questions – that maybe there are no good answers for…

~ Could poorly controlled mast cell disease precipitate the headaches coming back? She is on the Z/Z combo but that is clearly not totally controlling the mast cell activity. We are working to get on Gastrocrom but it is a long process and I don’t see it happening right away. I know CSF production can be influenced by mast cell activity. Could this have anything to do with my daughter’s headaches?

~ When do you start thinking CCSVI in a case like this? I had really hoped that my daughter would only be dealing with 2 out of the 3 parts of the theory but, logic demands that I consider CCSVI as well. I just don’t know what we should be looking for. And, there are no experts on this here. It is not exactly a ‘normal’ diagnosis and I don’t even know where to start. On the bright side, the physician’s assistant we see actually listened to me when I asked about it. He was a bit skeptical but listened and said if I could find someone locally to do it, he would refer us. I don’t want to jump into anything – clearly, we need to get the mast cell activity under control before we even consider CCSVI treatment. But, what should I be looking for – there is so little information available about this…What kind of tests/diagnostics/imaging can be done to give us a clue if this might be part of the problem?

~ My daughter will be having her annual eye exam in a couple weeks – is there anything I can ask the opthamologist to look for, in regards to CCSVI?

Thanks for letting me ramble! There always seem to be more questions than answers, but, thanks to Dr. D we at least know what questions to be asking!

[kamillean]

I don’t have the answers you are looking for…I have the same questions. My daughter’s headaches seemed to go mostly away when she started the Diamox too…then they started creeping back in. She is away at college and stressed now, so I don’t know how the stress and sleep deprivation are effecting the headaches. I still think they are better overall, but she is so exhausted now from the Diamox she can’t seem to tell me exactly how her headaches are (teenager you know). I too have been wondering about the CCSVI. In the Driscoll Theory, Diana says:

If the patient either doesn’t respond to Diamox or achieves a partial reduction of
symptoms, then an fMRI should be encouraged to look for CCSVI (chronic
cerebrospinal venous insufficiency) and angioplasty should be considered if the
fMRI indicates venous blockage or bidirectionality of venous blood flow.

Since your daughter has a partial reduction in symptoms, maybe an fMRI should be done. I tried looking this up myself the other day and couldn’t seem to figure out how to get one of these done. We are from Michigan and I found a refernce to an fMRI machine, but it seemed to be used for research. Maybe they have some in Ohio where you live. I don’t even know what type of doctor to ASK about all of this. I did just make my daughter an appointment at an Allergy place to get tested for Mast Cell disorder. Has your daughter been formally diagnosed with that, or are you just trying the Z/Z treatment like we are?

I wish I had some answers for you. I plan on asking her neurologist about CCSVI, but we don’t go until May.

[SammyJo]

I’m not a ccsvi expert, but I’ve had the treatment 4 times, so I know where you can get it done. It will probably involve travel, if you want to go to one of the doctors with experience. If you must go with a local interventional radiologist, look for one who has specialized in treating diabetics, specifically central vein stenosis, diabetics also get stenosis in places like the jugulars.

If you want to get a Zamboni style doppler before going in for a procedure, you can check with http://ccsvi.azdoppler.com/ and see if they are travelling to a city near you, or go to AZ.

Lastly, if you can travel, you could go to the Hubbard Foundation in San Diego, and there you can get very good CCSVI MRI. The have several associated IRs. Dr Haacke also has an MRI facility in Las Vegas, and works with IRs.

My last 2 treatments were with Dr McGuckin, he has done 500 procedures now, and has extensive experience treating diabetics. He is quite the master at treating veins, has very good results. His CCSVI program specialist has an educational blog, http://thinkccsvi.com with a map of clinics around the country he travels to, and tons of info on CCSVI. You can talk to the intake nurse. Get their instructions first on referrals if needed, and they will handle the insurance part.

[Dr. Diana]

Hello, everyone,
This is soooo important. I pulled my book down for revisions because so many people saw “CCSVI” and jumped to “angioplasty”. New research (soon to be published) strongly tells me that our weak veins and mast cell disease calls for a medical approach, and we are arranging trials now. Our risk of thromboembolism and stenosis is very high — I think we are “special”. It won’t be long, and I’ll be able to take you through the next stage of treatment (it’s like peeling the layers of an onion!). After that, just one more layer! Yea!

Meanwhile, yes, stress and infection can increase inflammation and mast cell degranulation, further damaging our vessels (and decreasing our CSF drainage). Be sure to check with your doctor regularly to be sure that your CO2 is above 22, or Diamox won’t work (and you’ll want to keep an eye on your potassium levels while your at it). I expected to be on Diamox for life, but as my vessel health is improving, I’ve needed MUCH less. I no longer have POTS or dysautonomia, fatigue or brain fog. Yea! I promise to do my best to get you there, my friends. We have to do this next step through trials (red tape. ugh.), but when you see the science, you’ll get it. Hang in my friends, and if you can wait on angioplasty, I’d recommend it… Big hug, Diana

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