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thalamotomy


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#1 Discovery

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Posted 09 January 2017 - 03:27 PM

Is there anybody on the Forum who has had thalamotomy treatment or participatied in clinical trails?

D
First symptom noticed was right arm bent at elbow - February 2014
Right arm and leg tremor, no arm swing - June 2014
Diagnosed with ET by GP - July 2014
Diagnosed with PD by 2 Neurologist - October 2014
Diagnosed with Early Parkinson by MDS - April 2015

Meds
1 mg of Azilect per day (Monotherapy)

Daily exercise is my true medicine
Jogging/Power walking-Beach and Pavement ,Free weights/equipment, Boxing, Whole Body Vibration Machine,Yoga

#2 stump

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Posted 09 January 2017 - 10:52 PM

Given that it mostly was replaced by DBS (what, 15 years ago?) I'm guessing not many on here have had that procedure.  Just curious why you are asking?


Official Dx 9/30/2015 (Age 38)

Current Medications:

C/L 25/100 - 1.5 tabs 3x per day

Trialing Rytary 95 in place of C/L.  3 caps morning and night, 2 mid-day.

Azilect 1mg - 1 per day


#3 Discovery

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Posted 10 January 2017 - 05:44 AM

Stump, good morning!

I ask because I am on a list in BC, Canada to be approached on any Parkinson's Clinical Trail. Doesn't mean really much other then when something comes up I'm notified. It also doesn't mean I quialfy nor that I would accept to participate.

I attached the info letter below

I have to believe that this is something newer then what was done 15 years go.

D


Focused Ultrasound is a non-invasive treatment for movement disorders. MR-guided focused ultrasound (MRgFUS) has been developed as a new tool to target the areas in the brain believed to be causing the movement disorder, but without the need for an operation. This involves focusing ultrasound waves from a specially designed helmet that under MRI guidance can exactly focus the waves on to discrete target in the brain and ablate them. Since the MRgFUS is currently under research investigations, patients who are invited to participate in the study will be followed closely pre and post treatment.
We have just initiated a clinical trial that involves focused ultrasound and movement disorders (which can include essential tremor and Parkinson’s tremor patients also). This trial is running at Toronto Western Hospital in Toronto, Ontario Canada and we are currently recruiting patients. I have listed referral process below. You should note that since this is a research study, there are many visits required for patients to attend:

1 Clinic Visit
3-4 visits before the treatment
Treatment day + 1 overnight stay (patients from out of province usually arrive the night before)
After treatment at 1week, 1 month, 3 months, 6 months & 12 months from treatment date.
We do not cover any travel and accommodations costs.
For patients to begin the process of potentially participating in the trials, we will need to review the referral notes and subsequently meet the patient in a clinic to determine eligibility. If you would like to be seen by our functional neurosurgery team (Dr. Lozano and his neurosurgery fellows and Dr. Fasano – Neurologist), please have your treating physician send the referral as noted below. Referrals should be addressed to Dr. Andres Lozano at Toronto Western Hospital.:
1. A referral (along with pertinent tremor/medical movement disorder history, medications including movement disorder medications, movement disorder diagnosis and any major medical conditions, etc.)- is required from the patient's Neurologist or Family Physician to ATTEN: Dr. Andres Lozano - FOCUSED ULTRASOUND (FUS) referral, Toronto Western Hospital. Please note that referrals that are sent without this information listed above are harder to process and may not be reviewed. Also please ensure that the referral is address to the attention of Dr. Lozano on the front cover as the fax is shared with 10 other doctors.
Fax to: xxxxxxxxxx
Once the referral has been submitted, please check with me to see if we have received it, sometimes faxes are not received for various reasons.
2. A Clinic appointment to see Dr. Andres Lozano - we review all referrals and then schedule the patients who meet criteria for a FUS treatment (based on protocol requirements). During this clinic the patients are seen by Dr. Lozano, and his neurosurgery team, a neurologist and myself. All the Physicians assess the patient to ensure tremor/or other condition and further to verify whether FUS is the right surgical option.

3. If patient is eligible and is interested in participating in the trial, they will move forward with me (in a separate visit) for Consenting and Screening.

Please contact me if you have any further questions.

Thank you,


Maheleth Llinas, Bsc.
Clinical Research Coordinator II

Division of Neurosurgery
Toronto Western Hospital
399 Bathurst Street, WW 4
Toronto, Ontario M5T 2S8

Edited by Discovery, 10 January 2017 - 05:47 AM.

First symptom noticed was right arm bent at elbow - February 2014
Right arm and leg tremor, no arm swing - June 2014
Diagnosed with ET by GP - July 2014
Diagnosed with PD by 2 Neurologist - October 2014
Diagnosed with Early Parkinson by MDS - April 2015

Meds
1 mg of Azilect per day (Monotherapy)

Daily exercise is my true medicine
Jogging/Power walking-Beach and Pavement ,Free weights/equipment, Boxing, Whole Body Vibration Machine,Yoga

#4 PatriotM

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Posted 10 January 2017 - 11:30 AM

Discovery,

 

Thanks for posting this topic.  I'm very interested in MRI guided focused ultrasound.  I've read some good reports about it.


Diagnosed 9/2013

Not taking any PD meds (stopped taking Mirapex due to fatigue)

Using exercise to battle PD

Walk minimum of 12,000 steps a day which improves rigidity,balance, etc (everything but tremor)


#5 Discovery

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Posted 10 January 2017 - 12:04 PM

Patriot, I too have read good things about it..

I posted last May to Dr Okun in regards to it and he wasn't excited but rather guarded.

See below.

D


Dr. Okun,

Below I have attached some info on a new clinical trail that is taking place in Ontario, Canada.

Both Toronto Western Hospital and Sunnybrook Health Centre are offering this trail to Parkinson's patients.

I have applied to both.

Have you read anything on this treatment and if so what is your opinion?

Thank you
Discovery


INSIGHTEC’s neurosurgery solution, Exablate Neuro, provides a non-invasive, image-guided personalized thalamotomy for movement disorders and pain, treated through an intact skull. This treatment uses no ionizing radiation. The treatment offers a continuous MRI thermal feedback to guide treatment. Sub-therapeutic dosing of ultrasound allows for refinement of targeting based on patient-specific intraoperative physiology prior to final treatment. This revolutionary non-invasive treatment offers a life changing treatment to patients with essential tremor, tremor dominant Parkinson’s Disease and neuropathic pain.

Exablate uses MR guided Focused Ultrasound to perform a “non-invasive” thalamotomy to relieve medication refractory tremor in patients with Essential Tremor or tremor dominant Parkinsons Disease. The effect of MRgFUS is based on tissue destruction within the Vim nucleus of the thalamus which enables a highly accurate and controlled thermal effect.

Ultrasound energy is delivered across the skull, without an incision or craniotomy, heating the targeted tissue above the protein denaturation threshold at temperatures near 60°C. Prior to the delivery of high temperatures, destructive sonication delivery of lower energy focused ultrasound allows for proper anatomic localization, as well as physiologic evaluation of symptom relief and/or any unwanted side effects. This process allows for adjustments before making a permanent lesion. Treatment effects are immediate and the several hour treatment is generally well tolerated with mild sedatives.


LocationUniversity of Florida
Posted 22 May 2016 - 08:21 PM

You should just be aware that this is a treatment that is applied to only one side of the brain and that it makes an irreversible lesion. Also, it usually is focused on the thalamus and the best targets for PD are GPi and STN. There are select cases where this therapy has advantages but I would caution to read closer and not pay attention to the advertising. Find out if it is appropriate for your case.
First symptom noticed was right arm bent at elbow - February 2014
Right arm and leg tremor, no arm swing - June 2014
Diagnosed with ET by GP - July 2014
Diagnosed with PD by 2 Neurologist - October 2014
Diagnosed with Early Parkinson by MDS - April 2015

Meds
1 mg of Azilect per day (Monotherapy)

Daily exercise is my true medicine
Jogging/Power walking-Beach and Pavement ,Free weights/equipment, Boxing, Whole Body Vibration Machine,Yoga

#6 Quietstill

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Posted 15 January 2017 - 07:57 AM

Cool!  Not the trial, but the news they are looking into this.  There are quite a few PwP for whom DBS is not advised.  Did they mention what are the parameters of the clinical trial population they were looking at?  I wonder if it fits some of the guidelines for No DBS.






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