March 11 PTT & me; 90 day update; a l... - Parkinson's Movement

Parkinson's Movement
17,413 members17,285 posts

March 11 PTT & me; 90 day update; a lot of good news, but some regression.

MBAnderson
MBAnderson

PTT procedure March 11, 2020

90 day report

June 9, 2020

The degree of relief for my treated (left side/right brain) is 90%.

Overall, I consider myself to be 65% relieved of Parkinson’s.

Of the changes that did occur, all happened within a few days of the procedure.

1) Initially, complete relief from tremor, rigidity, stiffness, dystonia, and back and neck pain on the left side, but some regression has occurred. A minor tremor has returned to my left hand, but only when in bed at night when trying to go to sleep or if I experience stress - so it is not a concern. I now eat and drink with my left hand, control the computer mouse with my left hand and do most things with my left hand.

2) Initially, 90% improved sleep, but some regression has occurred. Sleep is now 50% better.

3) Initially, normal walk and left arm swing returned and remains resolved.

4) Initially, complete relief from constipation. I was having 2 bowel movements per day for the 1st month, then one bowel movement per day for the 2nd month and exactly at the end of the 2nd month, full constipation returned. Boo-hoo.

5) Facial mask disappeared and remains gone.

6) Much improved voice, although minor regression has occurred, but remains good.

7) Initially, jaw tremor stopped, but a minor tremor has returned, but only when in bed at night when trying to go to sleep - so it is not a concern.

8) Initially, minimal reduction of tremor in the right hand, but now is significantly worse. If I am sitting in a chair and rest my right arm on my right leg, it shakes my whole torso. I cannot do anything with my right hand.

9) Gait initiation was a significant problem and was a 90% improvement, but minimal regression has occurred and is a 65% improvement.

10) Initially, turning over in bed was a 90% improvement, but regression has occurred and is now a 30% improvement.

Back pain occurred every day was a problem, but is now completely resolved.

Initially, I felt tipsy, tending to lean forward, but that only lasted 2 weeks.

I have significant tremor in my right arm, some neck stiffness, impaired, but much improved voice, balance, gait and dexterity.

I have a good attitude and no bouts of depression. I am looking forward to the future instead of dreading it. I’m happy and love our dog.

I would like to return next March, 2021 and have the other side done.

I have asked the good doctor if he would be willing to do so and what is criteria is for making that decision.

I've been off-line for the past week. Did I miss anything useful?

marc

81 Replies
oldestnewest

Hi MBA. Good morning and happy new day. I am glad to see that you have had overall success and this community is grateful for your detailed information. Never seen anyone being so patient with follow up information and your documentation of your journey is incredible.

I am surprised by the regression. Have you asked the doctor for input?

Also, your description of the exact percentages of relief is amazing. How did you measure? Are you using any scale such as UPDRS?

I have not turned in this report to Dr. J yet. I'll do that tomorrow, along with sending him a video. I expect to have a consultation with them a few days after that.

He asked me to measure my improvements in percentiles. There is nothing scientific about them -- they're just my best guess/approximation.

Thanks for this informative post, Marc. I'm glad it has helped you so much. It helps us, too, to be able to read your detailed account.

I’m very happy for you, and grateful that you’ve shared your experience. I keep PTT in my file of future possibilities.

Good to have you back Marc. Good information. Good result. Good news

Hope you get the other side done soon.

Thanks for the updates, Marc! Really appreciated. Glad things are still overall improved.

-april

What is PTT?

Grumpy77
Grumpy77
in reply to Nitro53

The full name is FUS PTT

Focused Ultra-Sound.

The Switzerland's version is PTT (Pallido Thalamic Tractotomy)

It's a non-invasive brain surgery procedure, rivalring DBS, and it's been discussed at length on this forum, so if you do a search for FUS PTT, you will find a lot of good stuff to read

Nitro53
Nitro53
in reply to Grumpy77

Thank you.

Thanks for the update Mark. I’ve got a quick question: are you taking Sinemet? Had you been taking it before surgery? If so are there any changes in dosage, response, or on/off times? Thanks, John G

John,

I take one, 50/200 continuous relief at bedtime. I normally don't take Sinemet except sometimes in when going out. My pattern has not changed before or after the procedure. I have always been mostly unresponsive to C/L.

Grumpy77
Grumpy77
in reply to MBAnderson

Hello Marc, thanks for your update

So since you are unresponsive to c/l why bother to take it.. You are probably getting all the side effects without the benefits

MBAnderson
MBAnderson
in reply to Grumpy77

Because every now and then it helps a little and I am appreciative when that happens. When I meet friends for lunch, it is better to have reduced tremor 1 out of 10 times then never at all. I am quite ambivalent about it. I often go several days and sometimes a few weeks without it.

Sorry misspelled your name. I know it’s Marc. 😁

Thanks for the update Marc!

Thank you for the update, Marc! I have been anxiously awaiting this.

It sounds like your improvements are still holding fairly well, but the constipation sounds like an issue at this point. The amount of improvement degradation that you have experienced in roughly the past month or month and a half, from your description sounds like it may coincide with the slow return of constipation. I don't know how it is for you and others, but my experience is that constipation makes any issues I have worse, and from the outside looking in, as I am, it could easily appear that the regressions you are experiencing could potentially be tied to the constipation issue? You are the only one who might be able to discern if there is a connection. Do you think that might be the case??? Possibly via the gut brain axis.

Thank you for all of the clearly explained details, Marc!

Art

MBAnderson
MBAnderson
in reply to chartist

I haven't made any connection and I'm not certain I understand what you're saying.

Are you saying that the re-occurrence of constipation may be causing degradation of other symptoms? Are you thinking that if I resolve the constipation issue by, for example, taking magnesium citrate, or Miralax, or Vitamin C, or whatever, that the other issues will improve?

I had assumed the regression of constipation is due to whatever is causing the regression of the other symptoms?

chartist
chartist
in reply to MBAnderson

That's what I was thinking might be worth a try. If you are able to get a handle on the constipation to see if that improves the other things, but even if it doesn't, it is definitely a positive move to get rid of the constipation for your overall health. Since you will be contacting Dr. J shortly, perhaps you can run that idea by him to see what he thinks?

Art

MBAnderson
MBAnderson
in reply to chartist

Good idea - asking the doctor.

So, please give me a recommendation for the best way for me to deal with it.

chartist
chartist
in reply to MBAnderson

I mentioned magnesium oxide because it is considered to be poorly absorbed, but does tend to loosen things up. The mag citrate is better absorbed, but is well noted for loosening things up. The hope being that you would still be able to take Mag-T without getting too much magnesium.

Mag oil is another form of magnesium that can be rubbed on the belly both front and back to see if it can loosen things up.

There are also certain fibre that can be useful or bumping up the dose of xylitol you are taking because xylitol can increase treg cells to control an inflammatory response that may be driving things in a negative way and can also loosen things a little with plenty of water.

Art

chartist
chartist
in reply to MBAnderson

Marc,

Some people find benefit with apple cider vinegar, but the taste is awful and it can be a little rough on tooth enamel. I personally can only drink it with the addition of a quarter teaspoon of baking soda mixed in because that addition does a couple of things. It raises the pH of the ACV which will make it easier on tooth enamel and it will conserve your natural bicarbonate stores and it modifies the taste of the ACV to be slightly more tolerable. It has only a little magnesium in it so should not add too much to your total magnesium intake. The BS also slightly carbonates the ACV, which for me, again makes it slightly more palatable.

Art

Hi Marc, It’s wonderful to read your story.

My husband has prune juice (more concentrated than prunes) every day. He also has a protein powder for his constipation. I think it has improved even more since starting on Mannitol. He’s now going almost every day. I thought we might add magnesium citrate as suggested by Art.

Re c/l. My husband has been on Madapar from his first diagnosis back in 2012. It appears to be doing nothing. He certainly doesn’t get on and off times that he feels. He’s worn the PKG watch a number of times and it indicates that it does work, but only marginally.

Good luck

Gwendoline

chartist
chartist
in reply to MBAnderson

Marc,

Maybe it will be beneficial to use a combination of magnesium citrate and the vitamin C. That way you won't have to worry about getting too much magnesium and vitamin C should not be an issue as it is generally well tolerated. That is of course if Dr. J thinks that is an option.

Art

pdpatient
pdpatient
in reply to chartist

Hi Chartist, you are spot on! Constipation is directly related to ON times and duration, at least for me. Whenever my symptoms get worse despite my regular medication regimen, I immediately realize it i have not had regularity in days.

I solve this with a complex protocol that involves drinking lots of water, Miralax and Benefiber. I then eat a lot of vegetables that night. The next bowel movement is painful, but subsequent movements get much better as long as I remember to take Miralax and Benefiber every day. Miss one day and I will be back to square one.

Sinemet or Rytary or any of the variants get absorbing in the small intestine and therefore the absorption of Levodopa is dependent on the efficient transportation of Levodopa through all through the digestive system. Anything that interferes with the transportation: be it delayed gastric emptying, or too much food or the wrong kind of food such as protein rich foods or backed up bowels due to constipation can interfere with the medication efficacy.

Not that sure if this applies for MBAnderson unless he is still taking Levodopa because he has yet to complete the procedure for the other hemisphere.

Hi again. Try adding prune juice to your regimen. My husband has the Benefiber twice daily (on his cereal and in his prune juice). His carer makes sure of that !! 😆

Thanks, I'll give that a try, too. I get a lot of fiber as I am mostly a vegan.

Despe
Despe
in reply to MBAnderson

Hi Marc!

I am so happy for you and even though some of your symptoms have regressed, I call it a VICTORY against PD.

Although my husband has never experienced constipation, our DO recommended and insisted on him taking ENZYMES (ProteoXyme) 2 capsules X 3 day 30 minutes before food. It does work more than my husband wants. :) He even gets up in the middle of the night to go to the bathroom, sometimes three times. He actually cut down the evening dose as he complained that defecates too much, lol. :)

Are you still on vitamins/supplements? I am sure you take probiotics, too.

chartist
chartist
in reply to MBAnderson

As you were describing the past two months, you said at the beginning of the second month, you noticed your frequency of evacuation had declined and it seems with that decline you are also seeing regression in other areas and by the beginning of the third month you are saying that constipation is back. So this just makes me wonder if the constipation is actually a contributing factor to some of the regression as I always notice that constipation will almost always worsen any issues I have. The conversation with Dr. J may clarify things a bit. Is the constipation a cause or an effect of something else?

Art

MBAnderson
MBAnderson
in reply to chartist

This is precisely why you get paid the big bucks.

It never occurred to me, but makes sense.

HiddenThis reply has been deleted
MBAnderson
MBAnderson
in reply to Hidden

Now that I've thought about it overnight, on the other hand, something has/is causing the constipation to regress.

Hi MBAnderson. Are you still taking any Levodopa in any form? If so, Chartist is correct, and you might want to address it with gusto. Please read my detailed response to him.

I have read your comment and I very much appreciate it & taking action on it immediately.

We are coming to appreciate that our gut is really the controlling force of our health.

Excellent work Marc / Art. Thank you for getting a thread humming about poo

Home territory of course for Winnie

I have a thought on this one, aside from the microbiome gut/brain axis stuff. For me constipation appears not so much to be the sort that the mathematician had to work out with a pencil, but more a question of the peristaltic action shutting down and not moving things along. I can have, and have had, constipation and diarrhea at the same time, in that I have all the pain and discomfort and feeling I will brown aerosol my trousers, but then when I get to the loo have to strain to get the diarrhea out

(Lovely topic - well chosen again!)

As such, I am unconvinced by the traditional laxative option, including the milk of magnesia (french equivalent) my trial doctor recommended. I think this "not moving things along" can lead to the mathematicians pencil problem (bad case for me over Christmas) but the hard painful stools are a symptom, not the cause.

Fibre helps - as I think do yoghurt, kefir, kombucha. But also hydration. Water is often called "the magic elixir" and it helps here too. This is for the traditional aspect of the problem.

However, I think, in PD, its a motor symptom. Its the muscles in the gut not doing their "Move along, please" job. And, as we discussed elsewhere, the interesting thought is whether the signalling / muscle problems are in the gut or the brain, or a bit of both.

Given yours appeared to be helped fully for 2 months by frying a bit of your brain, unless there was another factor (like medication during that period), it would seem to suggest that the brain is at least involved.

That said, I agree with Art - I tend to associate better PD symptoms when the pooing is working well, so its a 2 way traffic maybe

Feeling intolerably smug just now :-)

I have had experiences where, pre evacuation, I felt like I could likely crap through the eye of a needle (and it was coming whether I was suitably close to a latrine or not), but ended up passing what felt like the size and consistency of a housebrick.

Fair enough, but I have had a couple of episodes of serious diarrhea - post dodgy paella most recently - where 5 or 6 brown aerosol spells resulted in me taking immodium, but where at the point of aerosolling I would sit there with nothing happening, and have to force a bowel movement with a strain identical to a normal dry constipation problem

Indeed, for me, constipation is more about having to force the motion to start, than it is about dry house-bricks (most of the time - Christmas a notable and irritating exception).

Happy days...

I regret entering the discussion 😂

MBAnderson
MBAnderson
in reply to ChrisWF

It's probably 1 of the more troublesome symptoms and also least discussed.

I agree. I believe PD causes a motility problem.

Since taking mannitol n B1 constipation not an issue for me. Before dx i developed underactive thyroid and put on some 30+ lbs. , thyroid issues very similiar to PD. Felt like i got more overweight the less i pooped!

Having lost the 30lbs in 3-4 months n constipation not an issue i feel unclogged- great feeling. I eat lentils and helps motions be soft enough to pass.

Thanks for the update.

Marc,

I was just reviewing your regimen and noticed that you are taking Mag-T. The one thing I often point out about Mag-T is that it is the one form of magnesium that has never given me diarrhea at any dose I have taken, whereas a form like magnesium citrate has definitely given me diarrhea at a high enough dose. If you have not as yet tried a form of magnesium such as citrate or oxide that are more likely to cause diarrhea, do you think it would be worth trying? The oxide form is purported to be poorly absorbed, so perhaps you can take it right alongside the Mag-T which is purported to target the brain?

Art

One more thought, Marc. The regression of the constipation sounds like it is 100% regression back to pre-procedure level, whereas the other improvement regressions are only partial as you expressed with your percent figures. So I see the constipation as leading in this sense and possibly being capable of being a causative factor now.

Art

MBAnderson
MBAnderson
in reply to chartist

". Constipation regression is preop...improvement regressions are only partial..." Very observant.

I just sent off an email to Dr. J asking him to comment on your theory.

chartist
chartist
in reply to MBAnderson

That's why I sometimes don't get paid the big bucks!!!

Art

The gastroenterologist put my husband on Linzess for bad constipation and it worked

Thanks for the update, following your FUS in March, I was thinking and wondering how you were getting on. Sounds all your improvements are truly positive I’m so pleased to hear how it is working for you such great news, and clearly laid out in your post.

Only thoughts on relief from constipation which my husband only seemed to have issues with after taking Amantadine, 4 years after diagnosis.

He seems to have improved it with increasing extra fibre foods at each meal, I know that doesn’t help everyone.

Thanks for the update MArc and hope it will improve more.

For the constipation, I feel the same as Winnie, it's the muscles of the gut not working well or weak to push or something.

Maybe eveyone already know about banana helping with constipation? I feel that it helps, except that health experts now say don't eat it much because of the sugar in it.

So encouraging to hear your story, thanks so much Marc. Real inspiration and hope.

Keep making progress and ps keep us posted. 👍🤓

Thank you so much for your detailed posts.they have taught me so much. The discussions they emanate are also so helpful to the Pwp community.

Hi Marc

Thank you so much for keeping us posted.

Very happy about the general improvement, and obviously sorry about the regressions.

I was wondering if the stress you were put through for travel returning home after PTT could have had an incidence. I know Dr J insists on "no stress" post surgery, but Covid19 didn’t know about this...

Anyway, overall situation seems much better than before, so very happy for you!

🙆

MBAnderson
MBAnderson
in reply to Parkie-

Good question. Possibly, but there's no way to know. It was stressful, but I am retired and lead a pretty stress-free life.

Thanks Marc. Maybe I'm lucky but my non motor symptoms including constipation and insomnia went away with B1. Two years ago I had a colonoscopy and after cleaned my bowel all my symptoms went away. C/L does not help me too much (100/25 3xday).

I have a question for the treated side:

1. Did you noticed any stress improvement? I'll explain. When we are under stress the tremor intensifies a lot. Did that still happen on the treated side? If yes, is the same like before or less than before?

MBAnderson
MBAnderson
in reply to ion_ion

I cannot say with certainty there's been an improvement in my ability to tolerate stress. I think perhaps a little. When I feel stress, tremor does return to my left hand, but less than before.

Interesting. Perhaps Art and/or Richard will chime in on the likelihood that cleaning out the colon might reduce symptoms.

chartist
chartist
in reply to MBAnderson

It might if there is inflammation there that might be contributing to the constipation. Since you already take in considerable fiber, how much water are you drinking per day? Are you taking any pain relievers?

Art

MBAnderson
MBAnderson
in reply to chartist

No pain relievers. 40 to 60 ounces per day of water.

Hi MBAnderson. I believe that is inadequate. More like at least 3.5 liters.

Please see:

mayoclinic.org/healthy-life...

Jeeze, that's a lot. Seems like one would have to be continuously drinking all day long?

Yes indeed. I have to confess, I drink less water than you do. I have to step up also.

3.5 liters is about 120 ounces!

ion_ion
ion_ion
in reply to MBAnderson

It is not just drinking water but the frequent use of the bathroom. Maybe an automated system with a hose between the faucet and the mouth and other hose on the other side to the bathroom will comfortably solve the issue.

MBAnderson
MBAnderson
in reply to ion_ion

ha

Despe
Despe
in reply to ion_ion

LOL :)

To keep me regular, every day I eat about a 1/2 cup blueberries, 1l2 mixed nuts (unsalted), crasins and approximately a cup of Cheerios with almond/coconut milk. I also try hard to drink water throughout the day.

I was hoping to learn whether one can have the left side (right body) done. I think from reading your comments that the answer is possibly yes? Thus, though it may not be possible or safe or wise to do both sides close in time to each other, it is a possibility, it is feasible to do both sides eventually in the same person?

MBAnderson
MBAnderson
in reply to MarionP

Marion,

I'm confident he has done the left side 1st in many people.

I think it depends on which side of your body symptoms began 1st appearing. I think he believes that the side of the brain that is controlling the progression corresponds to which side of the body symptoms 1st appeared. In other words, my tremor 1st appeared in my left hand so he feels the right side of my brain is controlling the progression which is why he did the procedure in the right side of my head.

That video I posted of Ms. Copeland (find it under my profile )is someone who had both sides done at the same time, I'm pretty sure. I believe Dr. J wants to wait a year between procedures because in some people a 2nd procedure is unnecessary and he wants to wait a full year to make sure that all the changes that will take place have taken place.

lenamm
lenamm
in reply to MBAnderson

Doing both sides at once can cause more side effects such as speech issues. Yes I know people who have had left done, right done, both done at once, and both done with two years in-between.

MBAnderson
MBAnderson
in reply to lenamm

thanks.

Dear Marc, I am very grateful for the updates. I am upset by the regression. May be Art is correct connecting it to constipation. So there is an advice. Our family use this recipe with success.

At night time, pour 5-6 non-sorbate pitted prunes with 1 cup boiling water and cover it. In the morning on an empty stomach have a drink of the cup and eat prunes. It empties the stomach very well. My husband takes it every morning.

thanks, but it sounds awful?

Why does it sound awful?

Hi MBA, the suggestion given by nkurilskaya is in fact better than a previous suggestion in this post thread to drink prune juice. You have no added sugar, and the natural osmotic process of tenderizing the prunes ensures faster absorption and digestion.

It's a well known recipe for cheaper prune "juice" and healthier. It doesn't necessarily have to be taken in by morning and you can take it anytime. Also, you can eat them raw without the soaking and infusion method. It still works. It's just slower.

The infused water is quite delicious and the prunes have a yummy soft bite to them. Alas, I can't have it because I also diabetic. You won't believe the extraordinary amount of sugar in those prunes. Especially, the ones from Costco. They are almost literally from heaven in their incredible softness and sweetness.

If you have been judging the sweetness of prunes from other retailers, you really need to try it from Costco.

Okay, I'm sold. I had no idea. Thanks.

LoL. I deserve a commission from the organic plum growers of California😇

The Costco variety is grown here and I too disliked the rest of the plums and prunes sold elsewhere before encountering those. Prunes are dried plums. It must be the soil.

Lana666
Lana666
in reply to MBAnderson

Marc, I can second a prune extract idea - a most common traditional remedy I remember from my childhood. Thank you nkurilsksya for reminding. Just got prunes from TJ - will see its efficacy in new circumstances.

pdpatient
pdpatient
in reply to Lana666

Lana, Costco ones are better.

Lana666
Lana666
in reply to pdpatient

Thank you. Definitely getting them when at Costco.

Sorry, may be because of my English...

Your English is fine. I have just never liked the taste of prunes and I mistakenly imagined prune juice would tastes worse.

Lana666
Lana666
in reply to MBAnderson

Marc, It may grow on you (the taste) if works. Delicious dessert for me - couldn’t wait till morning for the extract and gulped all prunes as soon as they became soft and plum from absorbed water. Making a second batch:)

I just got off the phone with Dr. J for our 90 day post-op telephone consultation. He said I was coming along as he expected.

He said some of my regression is because some movement (full body movement) is controlled by both sides the brain such as jaw tremor, walking, and moving around in bed.

He said I should still expect improvement to continue.

This is the email report I sent him yesterday.

He was pretty automatic about his willingness to do the other side next March - on the one year anniversary. Whee-ha-a!

"Dr. Jeanmonod,

Attached is signed permission to share my data with the Swiss Health Department.

On about June 9, I sent Ms. Rossi a 90 day report. In preparation for our phone call Monday at 4:30 PM, here is an update.

A few weeks after the procedure, the tremor in my right hand was noticeably worse and has worsened since.

Infrequently, I experience a return of tremor to my left hand and jaw, but that is mostly when I feel stress or when I am in bed at night trying to go to sleep.

My walk is still fluid and my left arm swings fully.

I remain free of dystonia, rigidity/stiffness and back pain on my left side.

My sleep remains good. I am getting (6 to) 7 hours per night.

Constipation returned after 2 months to preop condition.

Preop, my left shoulder was tight with limited range of motion. It is mostly good now, but my right shoulder is seizing up.

I believe my facial mask remains gone and my voice remains stronger.

Gait initiation was a problem preop. There has been regression here, but primarily when I try to step backward.

I sometimes feel slightly tipsy, which I mean to be distinct or different from balance issues. My balance is pretty good.

There has also been some regression in my ability to turn over in bed. Immediately, postop that seemed totally relieved, but has regressed now about 50%.

Psychologically, my attitude is very good. I am happy. I have no bouts of depression. I do not ever feel sad. I am enjoying life with my wife and we are looking forward to the future.

I am very appreciative of all that you have done for me.

Overall, I feel about 60% relieved of PD.

Thank you.

Marc Anderson

"

Great news Marc, thanks for sharing!

Marc, Thanks for the update. I have a question regarding the cost. Is the cost tax deductible in USA for a procedure done in other country?

lenamm
lenamm
in reply to ion_ion

Yes it is - I wrote it off on my taxes resulting in a nice little refund. The travel expenses are also.

You may also like...