Brief PTT FUS update

[Trixiedee]

It’s been almost 2 months since my procedure. For over a third of my life I have had trouble walking due to dystonia twisting my left leg onwards like a stroke victim or someone with cerebral palsy. Also my ankle twisted inwards and I walked on the outside of my foot. Before that I walked everywhere. Yesterday I walked for ages rather than get a bus - up steep hills which would have previously exhibited me. I am so overjoyed to have this ability that most people take for granted back after 20 years of being denied it.

[Farooqji]

Congrats and hope for further improvements

[laglag]

I'm so happy for you!!

[John_morris71]

Very happy for you. Nice and wonderful gift for the holidays !!

[jimcaster]

Congratulations! You, Lena, and Marc give me great hope. I hope your successes will inspire the medical community to make PTT much more readily available.

[Kia17]

Many congratulations.

[ConnieD]

So happy for you, do you find it helps with anxiety as I think my anxiety in large part is due to dealing with my symptoms. Thank you

[Trixiedee in reply to ConnieD]

I had terrible anxiety from Sinemet and dyskinesia. That has disappeared. It’s hard not to be anxious in these times but the irrational anxiety is no more.

[ConnieD in reply to Trixiedee]

Thank you, that’s great to hear!

[MBAnderson]

Such a wonderful story for such a deserving person. It will last for 20 more years. Has your hair grown back yet? It reminds me how rare it is for healthy people, myself included, to really appreciate their health.

[Trixiedee in reply to MBAnderson]

My hair is almost an inch long. I’m not liking the short hair in winter but I have some nice hats! I hope you’re doing well too.

[ParlePark]

Wonderful!

[Skydome]

You must be feeling amazing right now. Thank you for bringing us such heartening news. Every successful FUS PTT re-enforces the hope for the rest of us.

Trixiedee your PD is not tremor-dominant, is that right? And you were responsive to Sinemet earlier on?

[Trixiedee in reply to Skydome]

No I have never had a tremor and Sinemet worked for a few years but caused dyskinesia in the first year. Probably because I was diagnosed so late.

[Drummer67]

Congratulations !! I am so happy for you on your great outcome. I look forward to your updates. Happy holidays

[Ashley6606]

Congratulations and best wishes for a complete recovery

[JANVAN]

Fantastic, !!! Did you have "bowel movement" problems and how are they now ??

[Lale]

So happy for you. Merry Christmas 😘💩

[Zella23]

Such wonderful news. Thrilled to hear you feeling so much better. What an amazing outcome. Thank you for updating us, I look forward to hearing more.

[Ballerina335]

I'm so happy for you.

[MarionP]

Really great news. Wonderful stuff good for you. It's like being let out of prison.

[Trixiedee in reply to MarionP]

Yes although I still feel better imprisoned by covid and lockdown.

[MarionP in reply to Trixiedee]

Yes but that's a prison of a very short sentence.

[Larrydds]

Great news, congratulations

[ion_ion]

Hi Trixiedee,

I'm curios if you had the side effects Lena has now like sleeping and eating more than normal. And if yes , then for how long?

[Trixiedee in reply to ion_ion]

Yes I slept more for a month which is to be expected after brain surgery and I have more of an appetite than before. I was really hungry for about a week afterwards.

[NRyan]

So happy for you!!

[Parkygal]

Hi Tricia , I had the procedure done mid November but have had mixed results. The treated side is great but the other (the side I use the most) is worse than before plus I have bad balance problems and no energy. Has anyone else experienced this? I know it’s early days yet.Parkygal

[lenamm in reply to Parkygal]

Did you have PTT at Sonimodul or a different target at a different center? Usually PTT is not done on those with balance issues is why I ask.

[Skydome in reply to lenamm]

Hi Lena, brilliant news from you, too, thank you! Could you explain what are considered balance issues that may be disqualifying for PTT, or how you were tested for your balance at Sonimodul?

[lenamm in reply to Skydome]

Generally if you have issues with falling over you will not qualify - it is checked for in the neuro exam. My balance issues were from dystonia only

[Skydome in reply to Skydome]

Many thanks, Lena!

[ion_ion in reply to Parkygal]

Balance issues appeared after the surgery or you had them before? Repeating Lena question, did you have it at Sonimodul in Switzerland?

[Trixiedee in reply to ion_ion]

My balance wasn’t great the week after FUS but felt like I was getting used to a new body after 20 years of malfunctioning. I fell over occasionally before but my health friends fell over as often as me. Maybe because I don’t drink alcohol!

[Parkie- in reply to Parkygal]

I'm sure you have discussed this with dr jeanmonod. What is he saying? Did he say that the worsening on untreated side is transient?

[dwell in reply to Parkygal]

How are you now Parkygal? Are things getting better? I hope so

[Wonky-Bride]

So happy for you Trixidee

[hindle1245]

I don’t want to seem like a dummy but what dose ptt-fus stand for and do you live in the states thanks pjhindle

[Trixiedee in reply to hindle1245]

Focused Ultrasound of the. Palliido thalamic tract. Only available in Switzerland.

[delboy381 in reply to Trixiedee]

Does PTT treat rigidity and bradykinesia? Does it stop progression? Thank you.

[Trixiedee in reply to delboy381]

Yes. I didn’t have a Tremor. It supposedly stops progression too.

[delboy381 in reply to Trixiedee]

Thank you.

[JMSL in reply to Trixiedee]

I'm in USA so it sounds like this procedure isn't an option for me yet. I would love to see a video of how you were walking before you had the procedure, or maybe I can send a video of my walk to see if it's like yours was! Your description sure sounds like me, but the movement disorder specialists that I've seen seem to think my "twisty" walk (my description) is a form of dyskinesia but I have not been convinced of that. And after reading your post, I'm even less convinced! I'm very happy for you & the positive outcome!

[lenamm in reply to JMSL]

I've traveled to Switzerland twice from Seattle to have bilateral surgery. My walk was like CP from dystonic dyskinesia - I could not walk presurgery 1 on meds more than about 50 feet. My dystonic walk is completely gone - I know walk like a normal person. Dystonic dyskinesia is 100% gone.

[Trixiedee in reply to JMSL]

My walking was quite twisty when I had dyskinesia too. I have a video of my walking that I can send you. But basically I looked like I had cerebral palsy.

[Skydome in reply to Trixiedee]

Hi Trixiedee, do you still experience on/off’s?

[Trixiedee in reply to Skydome]

Occasionally but nowhere near as extreme as before

[JMSL in reply to Trixiedee]

I would love to see your walking video to compare to my twist!

[Trixiedee in reply to JMSL]

I’ve looked at the video of me walking and I was ‘off’ so wasn’t twisting.

[PalmSprings]

I am so happy to hear of your improvements. I wish for many more good days ahead for you.

[Despe]

So very happy for you, you really moved me describing the wonders of your PTT surgery results. May God bless you! Best wishes for a Very Merry Christmas.

[Cbgs]

I’m so happy for you I apologize if this has already been covered or inappropriate ....

How much did it cost ?

Does health insurance cover any of it ?

Thnk u for ur update & time !!!

[Trixiedee in reply to Cbgs]

I’m in the UK so we don’t have health insurance here. It cost 35k Swiss francs. I think you can have a different form of FUS in the US for tremor or dyskinesia which is FDA approved.

[Cbgs]

Ahhhhh ok Thank you so much!

[Markbit]

So glad for your outcome. 20 days and counting. Can't wait!

[Trixiedee in reply to Markbit]

I almost postponed until January as I thought covid restrictions were too big an obstacle but my neurologist assured me they’d be much worse in January and he was right!

[Markbit in reply to Trixiedee]

You are right. I hope covid let me fly into Switzerland. Just got scared with the sudden borders close because of the new strain. And hoping to do not get infected before i reach to the procedure!

[Trixiedee in reply to Markbit]

I hope all goes well for you.

[Markbit in reply to Trixiedee]

Thank you so much!

[Smittybear7]

Just read your story. I'm so glad you had positive results. Best wishes for the future. God bless you

[Davor1]

Dear Trixiedee, your last post is from 11 months ago, how are you today?

[Trixiedee in reply to Davor1]

I'm still much better although I sprained the ankle that had dystonia a few months ago and it's still really weak. Almost 20 years of dystonia has left my ligaments and tendons overstretched.