45 mins conversation with dr. Jeanmonod regarding FUS

[ion_ion]

Hi all!

I just spoke with dr. J about my situation. In my case he said the PD looks very easy (after 4 years) and he recommended an evaluation exam to determine if I really need a FUS surgery at this time. He said I'm at the border line. The cost of that it will be 2000 CF which will be subtracted from the total cost of 34k CF. If he determines I do not need surgery at this time, but later, I won't need other evaluation.

I asked these questions:

1. If the medication works, is the surgery going to be less effective? No, that is not true but he said he does not want to do the FUS as long as he thinks it is not necessary.

2. Is the FUS going to resolve the stress sensitivity? Yes, by removing an overexcited path in the brain which needs about 3 month to re-program.

3. I have the tremor only on the RH side; is the FUS going to stop the progression on that side? What about the other side? on the RH side YES, on the LH side depends if the PD was already initiated. I'll email this question for more clarifications.

4. How long last the FUS improvements? It is estimated for long time by analogy with DBS. The first FUS was done in 2011 but they traced the people who had FUS starting 5-6 years ago and they are ok.

5. If he considers I do not need a surgery now but I want it , no matter, is that possible? No!

We spoke about more things but I think the 5 questions answers may be interesting for everyone.

We'll work together to determine a good date for my evaluation exam; I told him I want it asap but also depending of the C19 situation.

[ion_ion]

I told him my state looks much better than 3 years ago thanks to HDT but he did not comment.

[Farooqji in reply to ion_ion]

How much is the extent of your tremor? As far I understand, FUS is irreversible intervention in brain and should be considered only if the symptoms heavily interfere with the daily activities. In my opinion,one should hang on to the alternative treatments such as exercise,diet and supplements etc for as long as possible. I am hoping that in the coming 5 years or so, much better treatments will be available (including stem cells). We have to preserve ourselves until then

[pdpatient in reply to Farooqji]

Iqbal, I fully agree.

[ion_ion in reply to Farooqji]

I doubt a cure will come soon. I know, we must hope that will happen. On the other hand I do not want to wait till the symptoms heavily interfere with my activities. It is enough how much they bother me know.

If FUS would be reversible what that would do? For example DBS is reversible and what that does? Eventually brings the tremor back.

[Grumpy77 in reply to ion_ion]

DBS reversible? Um, I never knew that. From what I've been hearing, I thought it was the opposite

[Grumpy77 in reply to Grumpy77]

You're right, I did a quick Google search and I found this

"And unlike other surgeries (pallidotomy, thalamotomy) that damage brain tissue, DBS is reversible and can be turned off or removed if necessary. Standard DBS surgery is performed while you are awake and requires that you stop taking the medicines that control your Parkinson's symptoms."

[lenamm in reply to Grumpy77]

I've known of two people who had it reversed - both are way way worse off than before their surgery. You are pulling wires out of the brain! I also imagine in putting the wires in you are damaging more brain than my 3mm ablation lesion. So yes reversible with a high cost. Usually they just turn DBS and leave it because of the worse damage of pulling it.

[lenamm in reply to ion_ion]

I have never understood why you would want FUS surgeries to be reversible, esp PTT where you are destroying one specific tract that is super small. I love my little 3mm lesion - there is no way I would ever want it gone. I have talked to one person who did have some speech issues after and even for her the benefit was so good she was completely happy with her results.

[ion_ion in reply to lenamm]

I think the message should be for the person I replied to. He said the FUS has a problem of being ireversible, not me.

[Parkie- in reply to lenamm]

Thank you Lena for all the info.

That one person who had speech problems after FUS, was it because she had it done on both sides?

[lenamm in reply to Parkie-]

Yes both at the same time

[Parkie- in reply to lenamm]

So, easily avoidable by doing the two sides like you, with a delay in between.

Were you surprised by dr j 's response to ion about fus stopping the progression on untreated side only if pd has not started yet? For my part, I thought his littérature says Fus on one side stops progression on both sides (and that's what I thought MBA was told by dr j).

[lenamm in reply to Parkie-]

His response was exactly what I would’ve expected. I feel like my progression has been stopped on my left but not on my right. He told me before that sometimes if you treat one side the other will stop but not always.

[jimcaster]

Once again, this is informative and encouraging. Thank you for sharing.

[lenamm]

I had my evaluation for side two a week ago and he said my symptoms were moderate in my right compared to being severe in my left before surgery one. He realized though that meds don't help me and that the moderate symptoms severely impact my walking, driving, and working. Luckily there was a cancellation for Dec 9th so I will have side two surgery then! So we are just staying in Switzerland for six weeks. No point in traveling home to just travel back again (I live in the US) esp with COVID which is crazy bad in Switzerland right now.

[ion_ion in reply to lenamm]

I think everyone here is curios to see the results after your second FUS. I would like to go to Switzerland asap but I told the dr. that depends of the C19. I do not want to get stuck there. I'm still working and busy at work.

[Grumpy77 in reply to ion_ion]

You're still working, that's very good. Do you intend working into your 60s?

[ion_ion in reply to Grumpy77]

I already passed mid 60s so I wanna work till around 70s. At least for now working it is helping me.

[Grumpy77 in reply to ion_ion]

Well done! Great feat and good ambition. I'm 55, I really hope I can match that but I doubt I would

[jimcaster in reply to lenamm]

Congratulations, Lena. I have said this several times, but your success with PTT (along with that of MB Anderson and Trixiedee) is the single most encouraging bit of Parkinsons related news which I have encountered since my diagnosis. You are a courageous trailblazer!

[lenamm in reply to jimcaster]

Thanks!

[Parkie- in reply to jimcaster]

Jim, you are so right.

[gaga1958 in reply to lenamm]

hi,

Just curious, is there not a hospital in the usa to get this treatment, since you are from the states? it sounds like FUS has been great for you but how did you come to decide on FUS over DBS? Does insurance cover this even in another country? Sorry if i missed it and you already answered these questions. thx

[Hidden in reply to gaga1958]

Lena had the PTT procedure. There's only one clinic in the world (i think?) doing the FUS guided PTT, and its this one:

sonimodul.ch/

Going rate is 34k swiss francs (call it 37,500 USD) for each side of the brain. Never heard of an insurer covering it. I understand that its free for Swiss nationals.

[lenamm in reply to gaga1958]

Exactly what ChrisWF said below. For me DBS was not a good option for many reasons, my MDS didn't even think I would qualify for DBS as my symptoms were so unusual and I had only been on drugs about two years. My primary doc, Dr. Laurie Mischley, recommended PTT.

[Fed1000]

Thanks for sharing. What does it mean that your PD is easy? How much levodopa are you taking? Why are you considering FUS if your health is better than three years ago? Sorry for the questions. Thank you very much.

[ion_ion in reply to Fed1000]

Easy PD I meant the symptoms are reduced only to RH moderate tremor; I'm taking 3 or 4 x a day 100/25 c/l but is not helping too much. I'm considering FUS to get rid of the tremor which amplifies when stressed. I'm still working and the tremor and the sensitivity to stress are giving me hard times; if I'm fully relaxed than the tremor is low amplitude like in the videos I sent to dr. Jeanmonod. HDT removed all the other symptoms I had 3 years ago.

[ParlePark in reply to ion_ion]

My symptoms are very similar to yours. Tremor increases substantially whenever I experience stress.

I recently started c/ l 1 1/2 every 5 hours. Mornings work great. Afternoon none. Primarily tremor, but sleep and anxiety as well. Still considered stage 1 by MDS. My tremor can be substantial. My back doc just said that can be fixed. Meaning FUS or DBS. Asked myself same questions you did. A

[1LittleWillow]

I know this question doesn't exactly belong with this thread, but since it relates to FUS, I'm going to ask it anyway:

If I eventually have FUS and am fortunate enough to have an optimal outcome, would I be able to play the piano and guitar again (at all... even if not as well as pre-PD)?

[lenamm in reply to 1LittleWillow]

Everyone's results are a little different but from my experience the answer would be yes.

[1LittleWillow in reply to lenamm]

Thanks for the reply. I know results are different for each person, but it's nice to think that maybe at some point I would be able to play again... at least a little. 😊

[lenamm in reply to 1LittleWillow]

I had absolutely lost all ability to type with my left hand but post PTT that returned. So I imagine it would be the same with instruments.

[1LittleWillow in reply to lenamm]

My left side is also my affected side, and I've also lost the ability to type with my left hand. It's quite frustrating.

[lenamm in reply to 1LittleWillow]

Now my right side is worse but I'm having surgery on side two December 9th so quite hopeful!

[Ley0 in reply to 1LittleWillow]

I have exactly the same thing. It feels like my brain and hand aren’t communicating to each other.

[Grumpy77 in reply to lenamm]

Are you left handed?

What of slowness... are you faster on your left side (only) post FUS?

[lenamm in reply to Grumpy77]

I'm right handed, my left side is faster now. My left side was pretty nonfunctional before surgery.

[MBAnderson]

I suspect how each of us describe the severity of our symptoms might not be how others see us or understand precisely what we're saying, so I think it comes down to how we FEEL about the level of interference (with our quality of life caused by our symptoms.)

One person may appear to have or describe what sounds like minimal symptoms, but feel they are an enormous interference while others may have more severe symptoms, yet feel the interference is manageable.

We all have a different tolerance threshold.

IMHO, if you believe/expect PTT will provide the relief you seek and you feel that's what you want, then that makes it a well grounded, legitimate basis for the decision.

[Godiv]

Thank you for sharing this info, ion!