Flew 8 hours from Canada to Switzerland last week to find out if I can ultimately receive FUS PTT. It turns out that yes, except for low skull density ratio (SDR) of 0.34, measured with CAT scan during assessment.
Soooo, husband was wrong all these years, I am not hard headed after all! It is now scientifically proven!
All jokes aside, 0,34 is quite low and needs to be upped between now and the surgery that will take place sometimes early 2021. Mind you, Dr said he would operate anyway, but there would be pain involved as the ultrasounds would be more dispersed (can’t recall exact words, but something like that…).
Dr Jeanmonod recommended that my GP prescribe Biphosphonates and referred this paper:
The Efficacy of Bisphosphonate to Increase the Skull Density Ratio of MRI-guided Focused Ultrasound Candidates with Brain Disorders - Hisashi Ito
In this paper, 7 Japanese patients were treated with 35 mg of Alendronate (Aln) weekly and followed every 3 months. Results: The SDR value elevated in 4 patients which got successfully MRgFUS (see figure 1 above from study for impressive differences in Aln treatment results...).
(Note: Apparently, Japanese population have aprox 35% low SDR versus aprox 1% of North American/European populations… So, I had 99% chances of being ok but got in the 1%...)
Searching Google as to what could make such a difference in Aln results, I found that Calcium intake at the same time as Aln could counter the absorption of Aln. And apparently, Statins can positively potentiate the effect of Aln.
My GP prescribed:
- 1 dose of 70 mg Aln weekly (twice the amount in the study)
- 1 dose vit d 10,000 UI weekly
- 500 mg of M Calcium twice a day, at breakfast and supper
I figure that one weekly dose of Aln makes it active during the whole week in my system, so I am wondering if the 500 mg Calcium twice a day will interfere or not.
Would anyone like to speculate on this? Question to all of those very knowledgeable members here, if it were you, what would you do to harden YOUR skull?
Many thanks
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Great news that Dr. J said he would operate anyway. You were pretty worried about being disqualified, now all you have to do is become thickheaded -- and they got a pill for that.
Congratulations.
I have no advice how one hardens their skull. Maybe there's an HU forum for that.
Please keep us updated on your progress. This procedure is a good alternative to dbs, in fact it has advantages ( as well as disadvantages)
compared to dbs. I am now considering dbs ( dr. J said that I would not be a good candidate) but based on the reported experience I might ask Dr. J to take another look.
Why on Earth are people having to travel half way around the world for this?! I can’t believe that there aren’t more enterprising clinicians globally who aren’t interested in pushing the boundaries and getting involved. Beats me 😕
once there are more successful cases documented I think it will be more widespread. I found a group here in Florida t hats doing FUS for essential tremor and I have recently been in contact with them to see about how they approach PD patients. Still not certain this procedure is right for me yet, I need to have a conversation with them soon.
Same here, Bass. We are thinking about contacting this Florida group. I believe a forum member had the procedure done there and he is very happy with the results. What have got to lose?
That’s what I was thinking (and kind of secretly still think...), but when I asked Dr Gallay, neurosurgeon at Sonimodul, if Sonimodul had trained the Japanese who are doing trials on PTT, he said that although they came to visit a few times, they didn’t actually train them, there's no need to, because all of Sonimodul 's data are published and available to neurosurgeons who have the equipement.
Switzerland is a plane ride away, wouldn't do this procedure anywhere else. I'm in the car 4 hours each way every time I go to Mayo, and that's anywhere from 4 to 8 times a year. And it's all boring interstate the whole way. Plus you have to stay awake, somebody else drives the plane. So for what amounts to a car ride, you get the best people in the world to do the work. Can't beat it with a stick.
- I don't know how long it (MRI guided FUS of the PTT) has been since it was proven as viable but I suspect DBS showed similar commercial uptake speed in its infancy.
2. High barriers to entry
- Reg approval. Capital investment. Staff investment.
3. Widespread availability of substitutes
- DBS
4. Obsolescence risk
- If you are planning on living more than ~15y, you'd need to consider the risk that this procedure will disqualify you from some superior future disease modifying treatment. This is going to moderate demand somewhat.
Hi Nicole, sorry almost missed this. Glad to see you're safely back from the trip. How was your n95 mask torture? : D
If hardening bones = hardening scull,
I'd first test the vitamin D level in your blood and increase the intake to raise the serum value if under 50ng/mL. I recommend you try out Life Extension's blood test that's on a sale now for around $35. I bought the test but haven't gone out to the lab as of yet, but the lab price is very good. Even with a good health insurance, I have to pay $150 for vitamin D test, so this is a good alternative option for multiple tests. I'd take D3 and be sure to pair it with vitamin K2 so that it gets directed properly, preferably not at the same time you supplement calcium (Ca may be best before exercise). You should supplement D3 by your serum value, not simply by a massive D3 dosage amount to avoid hypercalcemia. parathyroid.com/high-calciu...
Also increase collagen supplements. You could buy a supplement for convenience or you can easily make your own bone broth with an Instant Pot - use an organic whole chicken or organic bone-in meat and run it for 2hrs under the Soup cycle with a few tablespoons of organic apple cider vinegar.
Up your vitamin C intake - helps collagen production that helps bone mineralization. I recommend you try making your own liposomal vitamin C. All you need is Sunflower Lecithin (I use Now's) and C-Salts (or any other vitamin C you prefer). Mix about 3-4 days worth of both Lecithin and C powder and mix it in a blender. Then pour the mixture in an ultrasonic jewelry cleanser and let it run until all the surface bubble disappears. The below video is a decent tutorial of the process. Although I have a jewelry cleaner as in the below video, I actually prefer to use my Sonicare toothbrush with a new dedicated brush head instead - I use it to stir the mixture in a circular fashion in a glass cup (that I prefer over the metal lining of my U-S cleanser) until all foams disappear. I invented the process and it works well, confirmed with my microscope. Lecithin will also improve your cholesterol status, which in turn will improve the bone density.
Be sure your Mg, Zinc, and calcium status is good.
Most importantly, increase your sun exposure (around 20 minutes or so, but with SPF on your face) and strength/weight training. Many studies have shown that weight bearing and strength training improve bone density and protect against bone loss. The Japanese are culturally more prone to stay out of the sun - perhaps that might explain the lower SDR value?
Lastly, I would stay away from Statin especially if you're already in the acceptable bone density range. Statin is known to cause cognitive/memory issues along with many undesirable side effects.
‘’I read that calcium intake at the same time as Alendronate (Aln) could counter the absorption of Aln. I figure that one weekly dose of Aln makes it active during the whole week in my system, so I am wondering if Calcium twice a day will interfere or not’’.
N95 masks for 7:30 hours to go and 8 hours return flight was quite uncomfortable as we expected. But we will finish our quarantine tomorrow and so far, no covid symptoms. So, it was worth it
I do take K2 (MK07 Natto bean).
I couldn’t swallow the calcium GP prescribed, so pharmacist replaced with liquid calcium that includes Vit D3… so I can’t take them at different times. Is it worth trying to get another calcium replacement that would not contain D3, or if taking only K2 away from calcium is enough?
I was thinking of adding a collagen supplement to help shoulder tendonitis anyway, so I will order ‘’ Multi-collagène de Revive Natural types de collagène I, II, III, V et X’’
Life Extension’s don’t sell blood tests in Canada (but they do ship supplements).
Full blood panel was made through GP a couple of months ago, and as usual for me, all was optimal.
I can’t up vit C because it potentiates Levodopa carbidopa (terrible side effects). I am at lowest c/l dose possible to ‘’function’’. Can’t stop entirely c/l because of bradykinesia and rigidity.
Great tips on making broth and liposomal vit C. I’m sure other members will benefit from your tips (my hands don’t allow me this kind of activity...).
Yes, I take Zinc and magnesium (threonate day, Mag calm night).
Yes, 20 mins sun exposure daily, but no SPF because I thought it would block vit D.
Weight and strength training are impossible for me right now. However, starting psysiotherapy next week to improve balance/gait, as recommended by Dr Jeanmonod.
My cholesterol is fine. No intention taking statins, just mentioning it potentiates bisphosphonates.
That's interesting to hear that vitamin C causes terrible interactions for you with C/L. Could you elaborate? Is it irrespective of the timing?
I don't know how it is in Canada, but in the US, full blood panel does not include vitamin D test so I'd be curious to see your level - it's actually important. That's too bad LE doesn't serve your location, but your lab tests are probably more reasonable than here anyhow.
The SPF was sort of a joke to keep the wrinkles and sun damage off the face. You tend to produce more vitamin D from the rest of the body not usually exposed to sun anyhow. Best to lay out in the sun occasionally in your bikini. ; )
Good to hear you're staying off Statin - that bit made me worry for you.
Since you're planning on taking Alendronate, just be sure to research all the vast known side effects and quickly be alarmed of any experienced negative issues.
As for the calcium, you can simply get some bulk calcium citrate powder and sprinkle on your food - I do that especially with oxalate rich foods (to bind it) or when making smoothies. As for the timing with the drug, you should be careful of supplementing any other supplements/meds within at least 30 minutes of the med, usually recommended to take first thing in the morning.
It’s not vit C causing terrible side effects, it’s the Levodopa Carbidopa. Vit C increases absorption of C/l and therefore, my tiny dose of C/l becomes much more effective, equalling in more painful dystonia, akathisia, insomnia, etc.
Last test Vit D was 70 (range is between 23 and 113).
Lab tests in Quebec need to be prescribed by a regular doctor. The lab tests are free unless you go to a private clinic (still need dr to prescribe).
Yes, first thing I did was check for side effects for Alendronate… I don’t plan to take it one day more than required! But Dr J tells me he needs this for my surgery, I’ll take it.
As for calcium, not sure I want to take it… Dr J wrote: ‘’thérapie contre l’ostéoporose par Biphosphonates’’ (to get osteoporosis therapy using Biphosphonates), he never mentioned Calcium and Vit D that GP prescribed. Searching Google as to whether or not use them with Alendronate gives two different opinions… some studies seem to show it was helpful and some, detrimental… not sure what to do… maybe I’ll ask Dr J by email.
Anything else you can tell me will be appreciated (any other HU member’s opinion is welcomed also)!
When you take vitamin C at the same time with C/L, yes it can increase the absorption because the ascorbic acid drops the Ph and allows the C/L to pass down quicker from the stomach to intestine - this is actually a desirable effect by some when using the minimal effective dosage of l-dopa. This shouldn't prevent you from taking vitamin C at other times.
OK, your D level is good so no issue there. You'll have a better absorption of D3 from daily smaller intake rather than weekly massive doses. Don't depend on GPs for issues related to nutrition and vitamins - most are rather clueless.
You actually need calcium for Aledronate to work effectively. You just need to make sure that you don't take it at the same time with Calcium or other minerals. You''ll be fine by ensuring you take it about 4 hours away from supplementation.
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