April 05, 2004
Electrode Implants Provide Near Total Relief From Tourette Syndrome

Jeff Matovic, a 33 year old resident of Ohio, has experienced an enormous decrease in the twitches and uncontrollable movements caused by Tourette Syndrome.

CLEVELAND, April 1, 2004: A neurosurgical team at University Hospitals of Cleveland (UHC) has, for the first time in North America, applied a new surgical approach to the treatment of Tourette Syndrome, resulting in the immediate and nearly complete resolution of symptoms for the patient, who has suffered from this neurologic disorder since he was a child.

"We were genuinely amazed at the patient's response," says Robert J. Maciunas, MD, neurosurgeon at UHC and professor at Case Western Reserve University School of Medicine. He has used the technique called Deep Brain Stimulation (DBS) for the treatment of Parkinson's disease and tremor, and was impressed with this patient's dramatic reaction: the disappearance of the jerking motions, muscle tics and grunting associated with his Tourette's. "This technique holds great promise for patients suffering from this movement disorder, which often is diagnosed in childhood or early adolescence and can be completely debilitating."

Jeff Matovic, a Lyndhurst, Ohio, resident who grew up in Bay Village, was six years old when he was diagnosed with Tourette Syndrome, a neurobehavioral disorder characterized by sudden, repetitive muscle movements (motor tics) and vocalizations (vocal tics). Though standard therapy with medication controlled his movements for much of his boyhood, his condition severely worsened with age.

Prior to brain surgery, physicians at University Hospitals Movement Disorders Center mapped out regions of Jeff's brain, through MRI (magnetic resonance imaging) scans and 3-D computer images. Their goal was to locate the safest and most direct route to reach the cells inside the thalamus portion of the brain, involved in controlling Jeff's movements. By placing electrodes around those cells to deliver continuous high-frequency electrical stimulation, control messages are rebalanced throughout the movement centers in the brain. The electrodes are connected from the brain through wires under the skin (beneath the scalp, neck and upper chest) to an implanted battery just beneath the collarbone. In Jeff's case, since both sides of his body were affected by the movement disorder, he has electrodes implanted on both sides of his brain and tiny battery packs implanted on each side of his chest.

The doctors at University Hospitals of Cleveland are careful to point out that not everyone with Tourette Syndrome requires treatment. The first line of treatment is medication, which can be very effective. Surgical treatment is considered a last resort, and it is not clear how effective deep brain stimulation will ultimately prove for patients with this particular disorder.

In the United States, the Food and Drug Administration has approved deep brain stimulation for the treatment of Parkinson's disease, essential tremor and dystonia. "We've seen very positive responses in patients with Parkinson's disease. Studies of the DBS technique show that this stimulation can significantly reduce tremor and other symptoms in about three quarters of appropriately selected patients with Parkinson's." says Brian N. Maddux, MD, PhD, Jeff's neurologist at UHC and assistant professor at Case School of Medicine. "Patients with a different movement disorder called dystonia can take three months to respond to the electrical stimulation. We didn't know how Jeff would respond. Within hours after the stimulator was turned on, we observed the ceaseless movements become completely relaxed and he was able to walk normally. We were awestruck."

Matovic learned about the possibility of a surgical treatment and had to convince doctors to try this technique on his brain.

"They took a lot of convincing. They hadn't really done anything like this before for Tourette syndrome."

Even if only a small percentage of all Tourette sufferers need a surgical treatment the potential number of candidates for this treatment still runs into the thousands.

An estimated 200,000 people in the United States have Tourette, but only a small percentage suffer symptoms as severe as Matovic's.

Matovic shows he has an incredible drive to triumph over his disorder. In spite of his disorder Matovic managed to go to college, graduate, get married, and his wife is expecting a baby. Plus, he took it upon himself to find doctors to give him an experimental therapy involving brain surgery which previously had not been performed in the United States.

Share |      Randall Parker, 2004 April 05 02:36 AM  Brain Disorder Repair


Comments
A.R. Yngve said at April 5, 2004 7:39 AM:

This is great news. Science triumphs again! :)

Does this breakthrough mean that we can cure teenagers from compulsively saying "like, dude, you know" with electrode implants... or stop business executives from obsessive use of "synergy," "customer-focused" and "the bottom line"?
;-)

-A.R. Yngve
http://yngve.bravehost.com

jem said at April 5, 2004 8:27 AM:

Kudos to Matovic as well...sounds like a pretty inspiring guy. To me, he deserves real commendation for pushing the use of deep brain stimulation for this syndrome. Scientific discoveries are great, but to me are just academic exercises unless they can (at some point) provide practical applications.

a. miller said at April 22, 2004 8:10 PM:

my 20 yr old son has suffered with this disease for as long as we can remember and there was nothing we could do to help him. He spends alot of very difficlt time trying to fight the ticks that he cant concentrate on anything else. I told him about what I read about the deep brain stimulation. He wants to know where and when he can try the cure.

Heather said at October 12, 2004 6:14 AM:

I have lived with tourettes syndrome for ever since I can remember. I am 20 years old and currently attending college. I often find it difficult to concentrate in class during lectures. I find it difficult to do just about anything that requires concentration. I'm very interested to learn more about this procedure, and how to go about getting it done. Any information would be a great help.

Tammy Singleton said at October 19, 2004 8:32 PM:

I would love to talk to Jeff about his surgery. My son is 22 years old and was told yesterday by his Dr. in Texas that he is a candidate for this surgery. If you would please email me Jeff if you see this. I,m so happy for you and your wife.

Randall said at November 15, 2004 2:00 PM:

Jeff only those of us with Tourettes can fully understand how awesome this is. I thank God for Doctors like this. It gives us hope. Jeff I have cried many tears over this, and this gives me incredable encouragement. Your a brave man who has started to pave a road of FREEDOM for those of us who suffer. You will have helped thousands with your courage. Thank You my friend.

Maclyn said at January 15, 2005 12:23 PM:

I'm looking for relief for my 15 year old son, who has had tourettes since he was 7 years old. I'd like to find a Dr. here, in Texas, who could let us know about this surgery. We've not had any luck with any of the meds or Dr's we've taken him to.

Terry Colson Jr. said at February 20, 2005 8:54 PM:


Wow what a story.What an amazing story.I've lived my whole life with tourettes aswell.This is definately a medical break throught for all living with this disorder.You'll be rewarded in the end Jeff.If you read this please email me,I would also like to find out about this procedure.

curtis said at March 7, 2005 8:01 AM:

hey Jeff, I have been having a tough time the past couple of weeks with my Tourettes and mainly obsessive thoughts. I would like to try anything just to feel better. A few questions, I am a n avid athlete who enjoys sports, will I still be able to play basketball even if I got this procedure done? Secondly, does this procedure also help the cormorbid effects of Tourettes as ocd or ADD. By the way I am a 34 year old man who is in the military. Your story is a story of greatness and you are to be praised for what you did.

curtis said at March 7, 2005 8:03 AM:

I almost forgot my e-mail address

G K said at March 13, 2005 4:33 PM:

Hi Jeff,

My mother has been talking to neuroscientists in California, Europe and at home. You have inspired me enough to look seriously into further detail about maybe having this procedure done to myself.

Could you please email me and let me know what differences it has made in your life and if it helped with any of the associated disorders of TS.

Thank you, Kerr

Steve said at March 25, 2005 5:17 PM:

I am the second person to have this surgery! It was done at Yale University Hospital, in New Haven CT. It was done in July of 2004. I have aan extremly bad case of TS. If fact it has ruined my entire left side, including but not limited to partial paralyzes.

If you would like to talk to me, or ask questions please do not hestitate to contact me at sblk@localnet.com.

Good luck to all!!

Steve

Tyler Weyrauch said at April 4, 2005 1:08 AM:

I'm 19 years old and have had tourette's and OCD since I was 5, and reading this article is really inspiring. My tics and OCD aren't as bad as it first started, but it's still pretty bad. one of my doctors told me in November of 2003 that this cure could be out in 5 years but she also said it could be sooner too. she's not my doctor anymore and my parents and i were wondering if you have any info if the cure will be available in the future and when. if you do could you please let me know my email address is tylerweyrauch@hotmail.com. thanks,

Tyler

Tamara Moore said at April 8, 2005 7:20 PM:

Jeff,
I remeber watching a show on tv about your surgery. It was really amazing. My son was diagnoised with ADHA at 3 years old. We tried the meds and dealt with many side effects. We changed neds to see if that woulsd help. There were different side effects. About 2 years ago he was Diagnoised with Tourettes Syndrome. He is 10 years old now. We see a lot od stuttering and head jerking. Some days he can hardly get the words put. I think the hardest thing fir his father and I is the way the children at school treat him. In the last year we have dealt with the teachers making comments about putting him on medication. We have chosen not oo, because of past experiences. He also has had 8 surgeries on his feet for Club Feet. It seems he cannot win. I am interested in any info you can provide. I am so glad for you. I would just like to see if we can correct this now for my son.
Thank you,
Tamara

Karry said at May 9, 2005 9:41 PM:

Can I know how is Jeff Matovic, servere TS victim, 1 year after the surgery? My concern is if this surgery produce long lasting positive impact and whether it is with high risk?
I am the co-ordinator of TS care group in Singapore.Looking forward to your reply.

Lynne said at May 15, 2005 11:46 PM:

Karry,
I am so happy to say that I had the pleasure of meeting Jeff Matovic just today in Seattle. He, his lovely wife, and adorable baby will be on Northwest Afternoon (local show) this Wed. They will discuss his progress since the surgery.
Jeff seemed like a healthy, joyful, and very personable man. He and his wife seemed very pleased with the success of the surgery.
They were all going out for the day and requested shopping resources for their excursion. Jeff seemed very happy to hear about the flagship store of REI in Seattle, a mecca for sports enthusiaists for its vast array of clothing and gear. Very exciting when you see where he has come from.
God bless you Jeff, wife, and family.
You could log onto KOMO Channel 4 in Seattle and click on "NW Afternoon" for the show's schedule and news.

Jo Dee said at May 19, 2005 4:44 AM:

I too was wondering how Jeff was doing after the DBS surgery. I have been tacking this for the past year this is the first website I have seen that had an update on his progress. My husband who is now almost 38 has had TS since he was 8 yrs old. It looks like his son from his first marriage may be developing signs of TS as well. We live in Corvallis, Oregon and would love to hear more about DBS and any surgeries of patients in Oregon considering it.. or if there are any Dr's here willing to proceed with doing DBS for TS suffers ( maybe Neurologists @ OHSU). I would also like to here from the previous poster who said he was the second to have the DBS. And How he is doing, too ? Please feel free to Email me jodeeannf@msn.com

Debra Matovic said at July 4, 2005 11:59 AM:

Good Day to Everyone!

My name is Debra Matovic, the wife of Jeff Matovic, the man who underwent Deep Brain Stimulation Surgery for his Tourette's Syndrome. I am happy to report that Jeff is doing well and his tics are still very much under control! He is working full time now and is working with two different authors on two different books about writing about his battle with Tourette's and the surgery that literaly saved his life. He is also looking to become a motivational speaker and has already scheduled talks at a few local schools and colleges in our area.

Jeff is also very much enjoying being a new daddy! Our son is now almost 8 months old and looks more and more each day like his daddy! Christopher was born on November 11, 2004 at University Hospitals of Cleveland, the very same place that gave his daddy this new life. So needless to say Jeff and I are very much indebt and thankful to all the wonderful doctors and nurses there.

Many of you were asking about where you could find more information about Jeff's surgery and how you might qualify for it yourselves. You can go to www.UHHS.com and right on the home page is a link to an article from the hospital and how you can contact them. I know for a fact that they are still receiving requests well into the 100s, if not 1000s, on a weekly basis about the surgery. But I assure you, they answer each and everyone. But I would like everyone to remember that this surgery is still "experimental" in the eyes of the FDA and that a study is currently underway at UH to have it offically approved for regular use in extreme cases of TS.

If anyone would like to contact Jeff or myself with any questions, please feel free to write us at Pyewak1@aol.com (my email address). While we may not be able to answer right away, I promise that all questions will be answered to the best of our ability.

Thank you for all the well wishes everyone and I hope that this surgery is the the beginning to a cure for TS and all movement disorders!

Sincerely,
Debra Matovic

Debra Matovic said at July 4, 2005 12:00 PM:

Good Day to Everyone!

My name is Debra Matovic, the wife of Jeff Matovic, the man who underwent Deep Brain Stimulation Surgery for his Tourette's Syndrome. I am happy to report that Jeff is doing well and his tics are still very much under control! He is working full time now and is working with two different authors on two different books about writing about his battle with Tourette's and the surgery that literaly saved his life. He is also looking to become a motivational speaker and has already scheduled talks at a few local schools and colleges in our area.

Jeff is also very much enjoying being a new daddy! Our son is now almost 8 months old and looks more and more each day like his daddy! Christopher was born on November 11, 2004 at University Hospitals of Cleveland, the very same place that gave his daddy this new life. So needless to say Jeff and I are very much indebt and thankful to all the wonderful doctors and nurses there.

Many of you were asking about where you could find more information about Jeff's surgery and how you might qualify for it yourselves. You can go to www.UHHS.com and right on the home page is a link to an article from the hospital and how you can contact them. I know for a fact that they are still receiving requests well into the 100s, if not 1000s, on a weekly basis about the surgery. But I assure you, they answer each and everyone. But I would like everyone to remember that this surgery is still "experimental" in the eyes of the FDA and that a study is currently underway at UH to have it offically approved for regular use in extreme cases of TS.

If anyone would like to contact Jeff or myself with any questions, please feel free to write us at Pyewak1@aol.com (my email address). While we may not be able to answer right away, I promise that all questions will be answered to the best of our ability.

Thank you for all the well wishes everyone and I hope that this surgery is the the beginning to a cure for TS and all movement disorders!

Sincerely,
Debra Matovic

Jeff Matovic said at July 12, 2005 6:19 PM:

Dear Friends,

I feel so blessed to have all your support as I am still awestruck by the new lease of life I've been given.

Nothing could have been a bigger gift - and a new 8 month old to boot!

If there was one inspiring thought prior to my surgery on February 9th, 2004, it was the hope that although the risks were known and the outcome unsure, I wanted to be able to provide education for the community as a whole - especially those that suffer from TS and certainly their families. Fortunately it hit world wide media which is more than I expected.

* If any of you work for a company that would sponsor me to come and talk to an audience to help educate those with TS or maybe those people that just want to find out more information, I'd welcome the opportunity - Please email any responses on this public speaking engagement to me directly.

If you would like to contact me - BY ALL MEANS, FEEL WELCOME. I'll try to respond as quickly as possible.

We're all family in the same fight and I look not only to help others, but to take this newfound science as far as it can possibly go.

Your friend always,
Jeff Matovic

FELICE WILSON said at July 18, 2005 4:57 PM:

I, too, have been tracking Jeff's progress but didn't know there was a second successful surgery and that this procedure could soon become approved! This is wonderful - giving all with TS such amazing hope for the future. My 12 year old grandson is dealing with TS on a daily basis and it is so discouraging for him and for his family. It is hard to keep his hope for some sort of relief going each day - maybe soon we can tell him about Jeff and about the prospect of help for him. Drugs seem to counteract against each other making most of them ineffective for him. Knowing the wonderful success of Jeff and his family moves me to wonder why more isn't written and publicized about this - please, please tell us that there is hope in the near future for all TS sufferers - this might get them through the bad, bad times.

Felice Wilson

jo-anne and darryl bulman said at July 19, 2005 4:26 AM:

Dear Readers.

It is so good to read this news and progress of Jeffs surgery it gives us all some hope for the future of TS suffers. We have a son with Ts but Scott suffered a traumatic brain injury 4yrs ago from a car accident and this has made his tourettes alot worse. It has caused a real problem with his recovery as it is always interrupting his concentration and slowing his rehab. The hardest problem of all is trying to get people to under stand the Ts Symptoms and not just say it is not just a behavioural from his head injury. I know this would be of great beneifit to Scotts recovery lets hope this procudure becomes more readily available . We live in New Zealand so the internet is a great source of information . If any one out there has suffered a traumatic brain injury that also suffers from TS we would love to hear from you. email bulman.family@xtra.co.nz
Regards Joanne, Darryl and Scott.

Julie said at July 27, 2005 2:34 PM:

I live in San Diego and hoping to undergo this DBS procedure. I am a 56-year-old woman and have had Tourette Syndrome since age 7. I have a professional job and I have raised my 21 year old daughter (who does NOT have Tourette or OCD, etc...(a little ADD maybe).. Hurray for Jeff!

Anyone want to talk about it, please email me.
julie

julie said at July 27, 2005 7:10 PM:

sorry - forgot my email address...
iamgem4u@aol.com

Dustin said at August 8, 2005 10:11 PM:

electrode implants? tell me, would these be the same electrode implants in this photo here? http://www.all-creatures.org/anex/cat-res-02.html

if so could you tell me, why are they being tested on cats? i dont think a cat can suffer from tourette syndrome, how is it a reasonable test subject. and furthermore how do you sleep at night knowing tests like these are being done?

Terry Colson said at August 25, 2005 4:07 AM:

Dustin I think you need to look a little furhter than doctors testing cats.This procedure has been performed for many other movement disorders,and has been proven to work.I think you need to read into it a little bit more and educate yourself with what's already been put out there.

Debra Matovic said at August 29, 2005 1:31 PM:

Dustin,
I recently saw your posting and I have to say that Jeff's implants look NOTHING at all like was is pictured on that site! We are both cat lovers (we have four ourselves) and would never allow anything like this at all to take place on our pets. Deep Brain Stimulation has been around for many years now and has been used on patients with Parkinsons and other movement disorders. Jeff just happened to be the first (in this country) that they used it on successfully. Please do a little more research about my husband's surgery and I am sure that you will come across the pictures of the actual devices that they used.

Sincerely,
Debra Matovic

Joe said at September 20, 2005 8:13 PM:

Hi everyone,

I have had Tourette Syndrome since I was 9 years old, and now I am 35. The TS has become more severe as I have been getting older. I am currently in a study that is taking place in Cleveland with the same medical team that Jeff Matovic had with his surgery. I am not sure how much I am at liberty to say at this point, because the team of doctors are waiting for the FDA to give its approval. All I can say is that I am next in line to get the surgery done. Again it all depends on what the FDA says.
I would just like to thank Jeff for having the guts to just go for the operation. I am so happy that it has worked so well for you. I also wanted to say that shortly after Jeff had his surgery done, the doctors at Yale New Haven Hospital did one also. My Dr. at Yale put me in touch with him so I could talk with him about the details about the surgery. His name is Steve Blackman. He lives in NY. He aked me to give his number to anyone who would like to talk with him. He is an excellent guy with an intersting story. I will leave that up to him. His number is 1- 845-791-6522. He asked that people to call between 6pm and midnight EST time.
If anyone would like to contact me, feel free. Send me an email at springsteen7777@yahoo.com
God Bless, Joe.

FELICE WILSON said at October 19, 2005 5:14 PM:

ON JULY 18TH I FOUND THIS SITE AND POSTED MY FIRST COMMENTS. I'VE BEEN CONTINUALLY MONITORING THE SITE HOPING TO FIND OUT MORE ABOUT THE STUDY AND THE SURGERY AS I HAVE A YOUNG GRANDCHILD WITH TS. IT APPEARS, FROM WHAT I AM READING HERE, THAT MORE SURGERIES WILL TAKE PLACE IN THE NEAR FUTURE AND THAT THIS TREATMENT WILL BECOME RECOGNIZED AND UTILIZED - I ALSO REALIZE THAT PERFORMING THIS ON CHILDREN WILL TAKE LONGER....HOWEVER, I JUST WONDER....WHY DO THESE CHILDREN HAVE TO SUFFER SO LONG BEFORE SOMETHING CAN BE DONE? AND, WITH ALL THE RESEARCH, WHY THERE ISN'T MEDICATIONS AVAILABLE THAT 'ACTUALLY' RELIEVE THE TICS AND VARIOUS OTHER SYMPTOMS? I GUESS I'M JUST AN ANXIOUS GRANDMOTHER THAT LOVES HER GRANDSON ENORMOUSLY AND WISHES EVERYONE WITH TS WELL. THANK YOU FOR GIVING ME AN OUTLET.

Rhonda said at October 25, 2005 9:08 PM:

My son has been heavily persued due to high ASVAB scores by the military. He has wanted to join for two years. Now that he is ready to commit they asked for his medical records. He has TS, adhd, ocd. Has not been medicated for any of it for 5 years. The recruiter just told him that he will now not be able to join due to the TS. My son is crushed and really had his heart set on this. They persued him for two years and now he feels so much is beyond his control. If anyone has any info that may help please email me.

FELICE said at October 26, 2005 8:31 AM:

Rhonda, my heart goes out to your son. Although my Grandson is only 12-1/2 years old - he too has a dream of joining the military since his uncle is in the Reserves and has been to Kuwait and Afghanistan and is waiting to be assigned to Iraq in the very near future. My grandson has even asked if he could go to a military academy to prepare for when he is older. The prospect of being turned down for the military would be devasting for him if this interest continues as it has for so many years. I am so sorry about your son and feel that surely something should be able to be done - especially since it seems that the military needs good, able-bodied men at this time. Hopefully, Felice

Arthur said at November 9, 2005 4:43 AM:

MY OLDER BROTHER, HAS HAD TOURETTE SYNDROME FOR A PERIOD OF 10 YEARS ( FROM 17-18 YEARS ) IN THE BEGINNING THERE WAS A SLIGHT TICKS OF THE NECK TO THE RIGHT SIDE. LATER, AT THE AGE 22-23 WE NOTICED THAT HE STARTED TO HAVE VOCAL TICKS- NOT VERY LOUD AND RARE, WITH TIME THEY BECAME LOUDER AND MORE OFTEN, WHILST MOTOR TICKS OF LEGS AND HEAD STARTED AT THE AGE OF AROUND 24 - 25.

AT THE MOMENT ( HE BECAME 29 IN OCTOBER 2005) HAS VERY SEVERE MOTION ( MOTOR ) TICKS OF HEAD, LEGS, HANDS AND ALL THE BODY MUSCLES THROUGH
ALL BODY EVERY 5 - 10 SECONDS AND VERY LOUD ( SUDDEN SHOUTS ) PROLONGED VOCAL TICKS EVERY 10-12 SECONDS.

AT THE PRESENT TIME HE CAN NOT REMAIN FOR A LONG TIME IN PUBLIC PLACES, AS PEOPLE ARE LOOKING IN CURIOS WAY, ALMOST STARE AT HIM. HE IS NOT ABLE TO TRAVEL ANYWHERE, BECAUSE PEOPLE IN THE HOTELS IN NEXT ROOM START COMPLAINING DUE TO HIS VOCAL TICKS.

ALSO I WANT TO POINT OUT THAT HIS SEVERE MOTOR AND VOCAL TICKS HAVE CAUSED CRACKS IN HIS RIBS ( 3 RIBS ON THE LEFT AND 4 ON THE RIGHT )

I ALSO WANT TO POINT OUT THAT HE HAS VISITED VARIOUS NEUROLOGISTS IN EUROPE, RUSSIA AND GREECE. HAS TRIED NUMBERS OF MEDICINES AND CONTINUES TO TAKE SOME HOWEVER WITHOUT ANY NOTICEABLE RESULTS AND HAS DIFFICULTY FALLING ASLEEP DUE TO THE TICKS AND THEREFORE TAKES NUMBER OF SLEEPING PILLS.

AT SOME POINT HE STARTED TO CALM HIMSELF DOWN WITH ALCOHOL WHICH ACTUALLY AFTER SOME TIME CAUSED HIM A VERY BAD MENTAL AND PHYSICAL STATE AND HE ALSO VISITED A PSYCHOLOGIST. MOST OF TIME HE REMAINS DEPRESSED, AND HAS NO BELIEF THAT HE CAN GET BETTER. HE DRINKS ONE PINT A DAY OF SOME PROTEINS AS HE USED TO WORK OUT.

HE AS ALREADY TRIED NUMEROUS MEDICAMENTS AS MENTIONED ABOVE, IN PARTICULAR: RIVOTRIL, TIAPREDAL, STEDON AND NOW FOR 1.5 MONTHS HE IS TAKING RISPERDAL ALONG WITH SLEEPING PILLS FOR NIGHT TIME, BUT WITH NO RESULTS, AND ACUTALLY SEEMS LIKE HIS CONDITIONING IS GETTING WORSE.

WE'VE BEEN LOOKING INTO DBS BUT ARE UNSURE ABT SAFETY.

PLS SHARE WITH ME YOUR OPINION.

THANK YOU IN ADVANCE FOR YOUR TIME
WAITING YOUR REPLY WITH MUCH HOPE

BEST REGARDS
ARTHUR PETROSIAN – GREECE

Debra Matovic said at November 17, 2005 10:42 AM:

Arthur,
My best advice to you and your brother at this time is to contact University Hospitals of Cleveland at www.uhhs.com. Read the press release there about my husband Jeff and what DBS has done for him. DBS is safe. There is no doubt about it when it is done by the proper doctor. DBS is used on hundreds of patients every year who have various movement disorders, most notably Parkinson's Disease. Please check out the web site that I have recommened and please inform your brother that drinking is not the answer, especially if he wishes to be a DBS candidate later. Tell him to continue to work with his doctors for his condition, that there is hope, there truly is, my husband, Jeff is a shining example of that hope.

Warmest Regards,
Debra Matovic

FELICE said at November 18, 2005 4:50 PM:

DEBRA, I AM JUST CURIOUS - I UNDERSTAND THAT YALE HAS DONE AT LEAST ONE SURGERY BUT I HAVE CONTACTED YALE WITH NO RESPONSE. DO YOU KNOW IF IT WENT WELL? ALSO, DO YOU HAVE ANY IDEA WHEN THIS WILL BE AN 'APPROVED' SURGERY OPEN TO ANY TS SUFFERER? AND, ALTHOUGH I UNDERSTAND THAT YOU AND JEFF ARE NOT PHYSICIANS, I WAS WONDERING - THAT KNOWING WHAT YOU KNOW TODAY ABOUT DBS AND THE FACT THAT YOU FEEL IT REALLY IS QUITE SAFE WHEN DONE BY THE RIGHT DOCTOR IN THE RIGHT FACILITY - DO YOU FEEL THAT CHILDREN IN THEIR TEENS COULD BE GOOD CANDIDATES ENABLING THEM TO BE STRESS-FREE, TIC-FREE , STIGMA-FREE, AND FREE FROM THIS DISABLING CONDITION? WE ALL APPRECIATE AND THANK YOU FOR YOUR INPUT AND CONTINUED MONITORING OF THIS SITE - IT GIVES HOPE WHERE ONCE HOPE DID NOT EXIST.

WITH WARMEST THOUGHTS TO YOU AND JEFF,
FELICE

Emily M. said at November 19, 2005 3:35 PM:

Hi. My name is Emily Messick. I live in Texas, but I am VERY interested in finding out how I can have DBS for my Tourettes. My TS got so bad, I quit school b/c of being made fun of so much. I have tried SEVERAL medications for my TS but nothing is working for me. I am hoping I will get a reply soon with at least a re ferall on someone to talk to.
Thanks,
Emily emilymessick17@wmconnect.com

Debra Matovic said at November 21, 2005 10:25 AM:

Felice,
I wish I could tell you that they have approved DBS for all TS patients. However, as far as I know it is still in the "study" part of the trial at University Hospitals of Cleveland. I too have heard about the one done at Yale, but the only thing that Jeff and I found out was that it was "mostly successful". We do not know who underwent the procedure there or who the doctors were.

As far as your question about doing DBS on teenagers, I have no idea if or even when it would be open up to children and teens. My PERSONAL belief is that due to the contast growth and change in the brain during childhood and the teen years that this type of surgery should only be attempted in extreme cases of TS. But this is my belief only, I am NOT a doctor, NOR am I trying to give any medical advice. Each TS case must be evaluated by a qualified Neurologist who specializes in TS to determine what is best for that patient.

And to you Emily;
I do not know how bad your case is, but I do encourage you to contact University Hospitals of Cleveland (www.uhhs.com) and see if your doctors can be in communication with the doctors there. And this goes for anyone who is seeking further information about DBS, please go to the website and it will show you the right direction in seeking more information about DBS.

Warmest regards to one and all............
Debra

Matthew said at January 5, 2006 11:34 AM:

I had DBS implants for essential tremor on 9/8/05. I could not be more pleased with the results! I know not everyone is a candidate for this surgery, but if you are, do it, you wont regret it!
Matthew in Seattle
diag ET 1995/bi lat DBS 9/8-9/15/05

Moshe melman said at February 12, 2006 4:04 AM:

In Israel on coming May there is going to be a similar operation to one of our member of the Israeli Tourette Assiciation. This is the first time that such an operation is going to be held on Hadassh medical center in Jerusalem. We are in the process of collecting donation for that operation. In Israel unfortunately, this type of operaion is not covered by the Israeli NHS. We wish to our member a great success in this operation.

Moshe Melman

The Tresurer of the Israeli Tourette Association

Randall Parker said at March 15, 2006 5:53 PM:

I just deleted an all caps post. I delete all posts that do not use mixed case.

Please write your post again with mixed case.

Julie Frazier said at March 29, 2006 12:48 PM:

Hi everyone,
This is the first time I've ever actually seen any forum like this on the internet. Finally, hope for those of us who have prayed so long and hard. My son is 11&1/2 and was diagnosed with TS at age 6. He has been on a myriad of meds and therapies for so many years now, I don't even know what to say. I guess, for starters, has anyone who has had DBS done for tics and reaped good results also experienced a lessening of other TS symptoms. I'm talking about for OCD, ADHD, or any of the various comorbid problems. We are seeing a movement disorder specialist at Emory in Atlanta in April, we saw him 2 years ago and he could only change meds(no real help). I'd like to be able to tell him anything and everything we've read. Why do the kids have to suffer so much? What if they could have a chance to live a better life? He is beginning to lose hope and is picked on so terrbly for his tics and OCD's that our community at large has basically shut us out.I think we'll home school next year. Even the parents make fun of him. Please anyone, if you have any personal info that could help- email me at frazier.fam@earthlink.net Thank for listening,Julie

Julie Frazier said at March 29, 2006 12:50 PM:

Hi everyone,
This is the first time I've ever actually seen any forum like this on the internet. Finally, hope for those of us who have prayed so long and hard. My son is 11&1/2 and was diagnosed with TS at age 6. He has been on a myriad of meds and therapies for so many years now, I don't even know what to say. I guess, for starters, has anyone who has had DBS done for tics and reaped good results also experienced a lessening of other TS symptoms. I'm talking about for OCD, ADHD, or any of the various comorbid problems. We are seeing a movement disorder specialist at Emory in Atlanta in April, we saw him 2 years ago and he could only change meds(no real help). I'd like to be able to tell him anything and everything we've read. Why do the kids have to suffer so much? What if they could have a chance to live a better life? He is beginning to lose hope and is picked on so terrbly for his tics and OCD's that our community at large has basically shut us out.I think we'll home school next year. Even the parents make fun of him. Please anyone, if you have any personal info that could help- email me at frazier.fam@earthlink.net Thank for listening,Julie

Debra Matovic said at April 28, 2006 11:20 AM:

I’ve been busting at the seams about this! On Monday, May 1, my husband Jeff and I will be on the Montel Williams show! Check your local listings for channels and time. For those of you who don’t know, Jeff has Tourette’s Syndrome, one of the worst cases in the United States, and a little over 2 years ago he underwent an experimental surgery called Deep Brain Stimulation. Miracle of miracles, it worked! To look at him today you would never know he has TS. So this is the reason why Montel invited us on his show and will now being airing Jeff’s miracle story.

So set your VCRs!

Hope that everyone enjoys the show!
Debra

osman duman said at May 15, 2006 4:16 PM:

bende ameliyat oldum benim tiklerim jeffden daha coktu ve suan cok cok iyiyim ben ankara hacettepe hastanesinde ameliyat oldum ayni yöntemi banada uyguladilar ve doktorlarim benim yuzde seksenbes iyiye gittigini söylediler tedavimin ve ben buna cok cok sevindim doktorlarimin ismi bulent elibol ve h.hakan oruckaptan beni hayata dönderen iki isim ben önce allahima sonrada doktorlarima guvendim ben isvecte dogdum buyudum ama malesef isvec bu ameliyati gerceklestiremedi ve bizde mecbur kaldik ankarayla kontak kurmaya ve doktorlarim hemen gelmemi söylediler bende hemen ilk ucakla ankaraya uctum ve bu ameliyati hemen gerceklestirdiler sekiz ay turkiyede kaldim ameliyattan sonra cunku kontrollerim surdu ve suan isvecteyim tatile hazirlik yapiyorum burdanda jeffe hayatinda basarilar diliyorum.

Mike Winston said at August 23, 2006 4:09 PM:

Hi.My name is Mike Winston.I dont care to say where i am from.Newark Arkansas. I am 42 and I have had T_S since I was a young child.In the last YR.My T_S has become more & more worse.Infact as it stands now ,It is literally taking my breath away from trying to fight the tics and outburst of profanity,and the twisting and jerking.I want to die,But i want to live for family..I cant cant go on much longer.When i say this .I mean I cant breath ,it is non stop. My quite time last maybe 10 seconds.I have been made fun of all my life .I have been in fights all my life .I have been neglected from society all my life.I have been disposed of like trash to a waste basket all my life.Jeff I am so proud that you have accomplished this.I can quote .I can really imagine.Please help me get some kind of help before i die. I dont care who calls me writes me .I just prey i can be told what to do ,where to go, and who to talk to.I will travel to any hospital in the USA. My T-S Is so bad that it has disabled me from using my hands like a normal person. Not that we arent normal .but you know what i mean Jeff. My e_mail is mikewinstonar@aol.com My home number is 1 870 799 3179 Please Jeff call me or write me. I just took some oxygen today.It is not helping please call me or write ..Thank you much ... God Bless Mike winston

Mike Winston said at August 24, 2006 3:45 AM:

Oh Yeah Jeff.I have completely forgotten to mention this to all of you.I have a unique talent with my T_S. When i play a guitar and sing ,I never have a tic outburst,jerk,twitch,or use profanity at all untill i take the guitar and out of my hand . strange huh? well just thought i would share that with you folks..Take care and god bless .If anyone is interested.I have been writing a book for the last 3 yr;s.It is called {My Life with Tourette;s}..If anyone needs to talk please feel free to ask anything ..Jeff you will never be forgoten by me or my family ..Thanks again .May good fortunes come your way .. God Bless

brie k said at October 28, 2007 7:31 PM:

hi my name is brie...i am almost 31 and have severe tourettes.. i was diagnosed when i was 10 and they told me my tics
would get "better" as i got older..well..NO SUCH LUCK! actually my tourettes has worsend to the point i cant work,go back to school or sometimes even leave my home!(no not feeling sorry for myself!) :)

i have been thru more then 50 drs as well as been put on over 160 different medications!nothing is working for my tourettes!i have been kicked out of MANNNNYYY establishments like restaraunts, retail stores etc because they told me i was a behavioral problem, or socially unacceptable! was also told that those places were family orientated and i wasnt part of that "family"!ive had glass bottles thrown at my head from people who were making fun of me as well as beat up 1 time causing broken bones etc...i was pulled over one night for no reason at all by a police officer from my town and he knewww i had TS, and he still told me he thought i was drunk and didnt have TS..so he proceeded to put me in cuffs and place me in the back of his car and told me he was going to search my car for drugs cause my tourettes was really bad that night!(of course the stress of being harrassed by the law made my TS way worse!)as i watched 3 cops and there dogs walk all over my car and inside it,as they FOUND NOTHING AT ALL,i cried and cried! i couldnt stop!i sat there and thought i CAN NOT go out in public ANYMORE!its one thing to be kicked out of somewhere,but to be violated by THE LAW and laughed at by the law as they searched my car for something i never had! i dont even have one bad thing on my record....it made me feel beyond VIOLATED..for the 1st time i asked myself why god is doing this to me!why did i out of 3siblings did i have to end up with this disorder!

now i sit in my parents home because i cant work and support myself physically anymore!my tourettes has been verified to be the worse case to mention up to this date!!!i am in the top 3% of the worse cases ever,and yet i cant find someone to help me get DBS!alls i want is a chance at life to have a quality of life worth living!i wont say i want to be normal cause NO ONE is normal! and like i said i dont feel sorry for myself but i am in a pit of discouragment!some days i dont even have any hope of getting better from my TS..
i have been to the emory hospital down in GA where they do DBS and was told i was the best candidate for this..me and my dad drove all the way down there for my scheduled surgery (dbs) and when we got there no one would see me and i was told that the dr was willing but the hospital said we dont take charity cases!!! they would donate a room.they told me to file insurance, but as we all know, insurance doesnt pay for this as it isnt fda approved and i have exhausted all means to try to get this surgery!
i know its going to be hard to get this done, but can someone please help me find a dr and hospital willing to donate there time! ive already even been through the brain mapping...alls thats left is the surger! please help.....

its amazing to me that the fda is out there approving all these drugs for weight loss, and things like VIAGRA!! but when will they OPEN THERE EARS,MIND AND LOGIC and start seeing theres a disorder called TOURETTES SYNDROME that needs some attention,love,and a simple surgery(DBS) so that not only i but the few out there that have it can live a good life and work along the side of others...maybe i sound stupid right now,and im not bashing anyone overweight!!i love everyone, i am simply very upset with the FDA as well as the tourettes foundation as they wont be a part of this surgery as its "DANGEROUS"...im sorry...BUT ALL SURGERYS ARE DANGEROUS TO A DEGREE!let the people getting the surgery make there own mind up!
the tourettes foundation not only used my name on there site with out my permission but i find it to be KINDA insulting to use my name and a situation i went through and then tell tourettes patients they wont help them get this awesome surgery!!

BY THE WAY DBS IS APPROVED OVERSIEZE AS WELL ITS APPROVED FOR DEPRESSIONNNNNN IN AMERICA! why not tourettes????

can someone please help me....and everyone else...

brie

Mary said at December 26, 2007 1:45 AM:

Brie you`re in my prayers.Did you get the Deep Brain Stimulation?

Joe Harris said at January 5, 2008 2:08 AM:

Hi Brie, I just wrote to you and I am not sure it went through. I have a severe case of tourettes. I had the surgery and I would like to share my experience with you. Please write me back because I can try and put you with the best doctors, and surgeons. I would really like to talk to you first. My email address is springsteen7777@yahoo.com I hope to hear from you soon.

Take care,

Joe

Sandra said at February 8, 2008 6:43 AM:

Montel Williams aired a show that included Brie and her story. I was extremely moved by her incredible spirit and disgusted by the ignorance and cruelty she has to endure from other people. Montel has set up a fund to help raise the funds for Brie's surgery. More details here:

http://montelshow.com/show/detail/5243/

Donation checks can be made to "Brie's Medical Fund" and sent to:

Brie's Medical Fund
P.O. BOX 6755
ASHEVILLE, NORTH CAROLINA
28816

Please do whatever you can to help this inspiring young woman.

teddy said at February 8, 2008 11:12 AM:

Just saw the episode of Montel on my local channel....what ever happened to Brie?

david halstead said at April 18, 2008 7:24 PM:

M son has had two DBS surgeries (two different targets). The first reduced his tics about 50% and the second about 90%.
The remaining tics are still bad enough that it makes it very difficult for him to do things, but he can sit for long periods of time now without ticing at all. This was never possible before the surgeries. He had an exceptionally bad case of TS and could not even walk standing up unless someone was holding his arm because of a strong tic of touching the floor or ground constantly. He is still on 9 medications but has been able to reduce his meds some since the surgery. He definitely is much better than before the surgeries and we are hopeful that he will continue to improve as further stimulator adjustments are made. Our experience has been that it is a slow process (definitely not overnight).

APRIL said at June 24, 2008 11:52 AM:

Brie, I wish there was more about your progress towards the surgery and your life. Watching you on the Montel show inspired me to become more educated with your disease etc..... April

Brie said at November 6, 2008 12:16 PM:

first off,
sandra i thank you sooo much for posting my fund raiser on this site as to help me out!! THANK YOU!the fundraiser is still open and i still await generous gifts from people who are willing to help someone get well,as well help me to lead a half-way "normal" life. as of right now i DO NOT have enough funds to get DBS at this moment..
i have had UHC offer to put me in there study BUT the study is not for quite some time now and its not a guarantee, as no study is..
since my airing on the montel show its been a year now and have had no luck w/ neither the study nor being able to raise enough money to pay a dr. to do the DBS.
UHC has been kind to me on the phone and honest..the study i was suppose to be in was suppose to be last march area of 2008.now they are telling me to keep the fundraiser up because the study may not happen as we all know how the FDA's stand point is on this surgery for tourettes,and if i gather enough funds i am able to just pay them or another university to start my surgery as soon as possible. yes montel made some calls up to OHIO and dr. robert stated that he would gladly not only evaluate me for free as well as put me in the study. i have a dr here where i live who keeps calling up to UHC to speak to them to see how things are going and how fast or slow there running.
the nurses words were, "things are moving along, but they are moving alone at a very slow snails pace". she also has stated to one of my drs. that "brie is on the top of our list because of her already being evaluated at other hospitals as the best candidate for DBS...etc". my funds in the fundraiser sit there for any and all medical concerning the brain surgery and the medical needs from the tourettes and the aftercare from having DBS..
life has not become any simpler or easy for me. once again, i DO NOT FEEL sorry for myself but i do get quite discouraged alot..i need to keep my head up. people still make fun of me and even throw things at me.. recently i was thrown out of a gas station for not only my tourettes shouting out its verbal tics which some are COPRALALIA (the cuss words etc..) and for hitting a banana with a arm tic that i have all the time.i was told i was not welcome in that place anymore because it was a family corp and was told "he didnt care what i have nor what it is but told me to stay away or the cops would be called.. ok so ya, i cried quite a bit cause i prayed and hoped that people couldnt still be that cruel. i know, i know, i was giving myself false hope.

i stay inside as to avoid not only being made fun of and kicked out of places,but i dont want to be hurt physically.. that has happened many times already.. glass bottles thrown at my head,ive been hit, and out of EVERYTHING i think being told im the reason abortion was invented hurt the most.
alls i want in and for my life is to lead a life being able to work,to raise a family,and to go out and have a cup of coffee w/ out being harassed! :/ plz, plz, do NOT THINK i feel bad for myself!God has put me in this position for a reason!and i accept that position.. i just really need my "life" again :)diagnosed at 10 and now im almost 32.. someone wrote me from when i was on the show and said "god,brie has given to so many people the knowledge of her life, please give her peace and quiet in hers now"!
that touched my heart;)
i will stop rambling now,besides someones helping me type too. the fundraiser is still open..i have received many "gifts" but am SOOOOO THANKFUL FOR WHAT GOD and the people who have sent me gifts. something is always better then nothing.. if anyones reading this who has sent to me please know i am in debt to you and hopefully sooner then later you and I will see my life change in a wonderful way:)
thank you everyone, thank you very much..
BY THE WAY, thank you april :):) thank you lots... heres a way to contact me if u want or need to.. its briecookie4u@yahoo.com and a myspace page for not only my fundraiser, but to show knowledge about tourettes syndrome. people have helped me, i want to help in anyway i can to give back to those in need!
THANK YOU AND GOD BLESS~~~~

http://montelshow.com/show/detail/5243/

Donation checks can be made to "Brie's Medical Fund" and sent to:

Brie's Medical Fund
P.O. BOX 6755
ASHEVILLE, NORTH CAROLINA
28816

Mikee said at December 10, 2008 7:51 AM:

Hy Jeff!!

I am Mikee from Hungary.What's your email adress?i would like to speak with you about the operation.I have very strong tourette syndrome...Please contact me.My email adress: k_mikee22@freemail.hu Thanks

Felice said at December 16, 2008 3:54 PM:

I have tried to reach Debra and Jeff Matovic with no success. Does anyone have any information about them? I'm concerned since the last I heard (and that was quite a while ago)was that Jeff was experiencing some medical problems that the doctors were not able to resolve and I hope that his problems did not emanate from his DBS surgery. Thank you....Felice

Maureen said at October 27, 2009 4:07 PM:

I can see that there has been no activity for a while on this subject.
My son has Tourretts. He compensates for his tics in many ways. The more disturbing part to him is ADHD and OCD that goes with it. He is not
a candidate for medication as it worsens his symptoms and he has severe side affects from them as well.
I would like to know if there was any improvment across the board or was it just his tics that improved?
Maureen

Anita said at January 4, 2010 10:20 AM:

So, what happend, Brie? Are you still out there? Any progress on getting DBS?

Anita said at January 4, 2010 12:06 PM:

Where can I find a copy of the Montel show you were featured on? I would like to see it.

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