Essential Tremor (ET) & Deep Brain Stimulation (DBS) Surgery

[guit3rg0d]

Last year, I noticed that when my thumb was in a certain position, it shakes. I thought it was strange but I played it off and thought maybe I was drinking too much caffeine or I was stressed or something. Unfortunately that wasn't the case. In the course of a year, the tremors spread everywhere. Literally. Now I have it in my back, abs, chest, hands, legs and arms. I'm noticing it in my neck as well just recently... I'm 17 years old and will be going to college this year.

This sucks.

[ClusterHeadSurvivor]

I am having DBS for Cluster Headaches. Thanks for posting this video. I appreciate it. My surgery is Feb 23,2012 here in Canada.

[anarkiatv]

anybody knows the cost??

[SARboy1303]

Thank you for posting this video. I just found out that I have ET and have had of for at least a year. I'm looking for info on treatments and your video helped make DBS a little less scary.

[shanti100123]

awww i So resonate with u i too have ET sense i was a baby so it was in my arms hands and moved into legs and at age 24 or so went to neck head and Voice is not medicated. i have so many health issues DBS is not available for me and ill tell u i was a mess before meds But now i have a ball and chain of meds and with out them i go thru with draws and it makes me feel so trapped But im always re centering my self i have my whole life im sure u understand how we do our best to hide our ET ty shanti

[EternallyRound]

Thanks for the vid. I tried meds but they made me feel like I was moving in deep water, so quit. I found for me that high fiber diet & good night sleep help some. Good luck!

[jlh2283]

Hello! I have it on my right side and head bobbing... I can't stand life. I get light headed, headaches, my body feels weak... Curious if you can tell us more about your experience with surgery like healing time, days in the hospital, etc. Did the doctor recommend it? I can't live at all and only maybe on a good day have 4 hours of off the couch time daily which usually results in headaches letting me know its back to lying down again. Anyone else have this problems? Thanks!

[GorillazFAN06]

I've got it in my head and I'm only 18. Life = Ruined.

[tntitan2011]

I will be undergoing DBS surgery in Sept 2011 for Bilateral Essential tremors. I know it may sound wierd but I am actually looking forward to having this done so I can have my quality of life back. Unless you suffer from these things ( in which you do ) you can't imagine how frustrating they can be. I look forward to updating you when mine is completed.

[sjbpub]

I had double implant surgery (DBS) way back in 2004,I was the first in my state to be a double implant (DBS) for essential tremors.no issues or complications since, I get adjustments maybe once a year now . Essential Tremors showed up when I was 22, tried the different drugs availabe and finally had enough and I did the research and found my surgeon.

Be careful and choose the right surgeon,do the research and don't be afraid to interview him and his qualifications.

[datzfast]

i have ET, i have started having terrible tremors in the other arm never affected befor and only during orgasm. anybody else had this?

[sickgir1]

@astout76: yes, chiropractic neurology is fantastic, too. NUCCA also does not use a thrust, or any "popping" or "cracking", and is very gentle. good luck every one!

[Ilovemyhorsenick1]

Thank you for this video - I just found out I have ET, am 62 and I shared your video with my family to help me and them to understand ET. You have such a way of explaining and making it as light hearted as possible, I have used humor when I had cancer - doesnt cure but makes it bearable. So that is what I plan to do with ET. I am on meds right now experimenting on which works. Thanks again...

[sickgir1]

give NUCCA a shot. correction of primary disaffrentation and elimination of asymmetrical dural tension and compression can do wonders! you probably won't need the toxic drugs or dangerous surgery.

[astout76]

@sickgir1 hi sickgirl1, people can also find more info from any "chiropractic neurologist". any info can be helpful and some people are intimidated by the "thrust" of a chiropractic adjustment, where chiropractic neurologist's usually use tuning fork and kinesthetic movements to facilitate the adjustment.

[AAABeatbox]

How much did the surgery cost? I am really curious as to know what the range of price for this surgery is. Thank you.

[azthundercloud]

I had the DBS surgury in April of 2010. my tremors came out after i opened my head on an aircraft canopy.  the drugs worked for awhile. but the end of the line was the DBS. i must say it was an excellent choice. i can excercise now, got to restaurants. I am loving life!!

[JGarry74]

how has life been so far w/ the stimulators in your body?? have u had alot of complications since the surgery?? complications?? just wondering about updates since u have had it awhile ago cause i'm thinking of having this surgery but cant find any updated videos of patients who have had the surgery.

[Laniemarie427]

Thank you for the video(s)! My 62 yr. old mother was just dx today with ET. My maternal grandmother used to shake a little bit (plus had Alzheimer's) & my grandfather had Parkinson's. So it is concerning that my mom could end up with Parkinson's too? I first noticed my mom's head shaking a little bit a couple of years ago when dealing with a stressful situation. I didn't say anything, because I guess I thought her nerves were just shaken. I'll probably post again later on. Thanks!

[AAABeatbox]

Question. Have you ever considered simply a gluten-free diet? A naturopath recommnended it to me and all symptoms were relieved within 3 weeks. I went back to eating bread again only to bring back my symptoms to show my doctor but I've been back on the diet for two weeks now anda gain... feeling much better!

[SoyySauceeBoii]

how much is usually the surgery itself for tremor? not including MRI scan, etc.

[MisfitClasses]

have you tried taking magnesium phosphate? it reduces my ET significantly. (note: it's not a placebo effect, through many trials I know.)

[ckerrk12]

thank u for making this vid im a jr high kid that is made fun of cause of et now i dont fell so alone

[2handsipper]

Drugs were ineffective for me. To many side effects. I went forward with the surgery Feb 2010. My mapping process concerns me. Any body side effects were undesirable. You mentioned your head twitching. Do you have access to your own programmer?

[trakat77]

@2handsipper Hello! I apologize for the delayed response. I agree re: side effects with the meds. If you just had the DBS surgery in February, it can take a little while to adjust to the programmng and get it "just right". My head twitched when a lead in the brain failed. I had to have corrective DBS surgery at that point. So far, no other twitching in my head. The programming is all done at my neurologist's office. I can only turn it off and on. :( Let me know how you're adjusting. Take care.

[prldvtec]

I have ET and it's sad to know that there's no complete cure for it....

Maybe we could ask for help from ETs from the other galaxy....

[trakat77]

@prldvtec I hear ya'. :o) Who knows?...maybe one day! I have every hope & confidence that they will find a cure for ET. Until then, it's a blessing that it can at least be managed and that we can continue with our lives in a productive way. When you're dealing with something like this, it's always better to stay focused on those things that you have to be grateful for...including the fact that this is not a degenerative disease. At least we have that. ;o)

[rawritsblair1]

my dad has this. along with many other conditions.

[trakat77]

@rawritsblair1 I'm sorry to hear that. More difficult than having the disorder is having a relative who suffers from it and/or other medical ailments. My best to you and your dad. xo

[luken5]

Its nice to have a forum for shakey peeps. At least we know how to make a Martini and we should all get together and play Jenga somtime.

[trakat77]

@luken5 LOL! Too funny. Martinis and Jenga...the perfect E.T. party. :o)

[TheAbidkhan]

HI I SAW YOUR VIDEO I NEED ADVICE ... I HAVE HAND TREMOR IS THERE ANY THING I CAN USE TO STOP IT

[BARON62]

Lady, thanks for your Video, i think this help me to do something about my ET, i was too easy to understand you, you are very funny and beautifull woman. I´m a little scare about DBS, so i think i will try Medicine before. Thanks again and kisses.

[trakat77]

@BARON62 I'm so glad that you found the video helpful. Thanks so much for your nice comments and I hope that you find the medication to help in controlling your tremor. If the time comes that you need the DBS surgery, don't be afraid. It's really not that bad. :) I wish you all the best.

[DJDubz1977]

Hi there!

I am having tremors/uncontrolable muscle flaring, unsteady gait, and dizzy. I went for my MRI tonight. Just browsing around brain videos. Yours was great. Thankyou

[trakat77]

@DJDubz1977 Did you find out the results of your MRI? Essential Tremor is usually more of a wavy motion, while Parkinsons is more erratic and fast shaking. Although I have ET, the movement mimics that of Parkinsons (except that i'm in motion while those with Parkinsons must be at rest). My brother had and aneurysm which affected his vision and caused dizziness. Sounds like it could be a few things. Let me know when you find out. I'd love to hear. God bless. xo

[DJDubz1977]

@trakat77 Yes maam. I have a tumor between my brain and my audiological nerves. So I have to go back for another MRI focused on that area. They area also going to do an MRI of my spine to be on the safe side.

I was diagnosed with a condition called NeuroFibromatosis at birth. And up until now I really didnt have any problems. But now everything is hitting me at once

[trakat77]

@DJDubz1977 I'm so sorry you're going through this. You've been hit with a lot. Just try to stay focused on the positive things in life to keep your spirits up. Getting outdoors and taking a long walk wth my dog often helps me clear my mind and relax. Just don't let all the stess get to you. You'll be just fine. :) You're in my prayers and please keep me posted on new developments. Big Hugs, xo Tracy

[annieg1977]

Wow you have been through a lot. Sending you lots of prayer and big hugs! xoxo

[trakat77]

@annieg1977 Thank you from the bottom of my heart for your kind words. As much as I've gone though and continue to go through, I know that there is always someone out there dealing with much more, so I can only be grateful. Faith, Gratitude, Strenghth and Hope...and, of course, Love...will see you through anything. xoxo

[lightprotn]

Hi Tracy,

I want to thank you for your video. I am just learning about Familial Tremors or Essential Tremors today. A new friend (who has this condition) wanted me to research this condition and your video was very educational. You are very sweet andI enjoyed listening to you speak about it. Thank you for your post.

Chris (Chattanooga Tennessee)

[trakat77]

@lightprotn Hi,Crhis. Sorry for the delay in responding, but your email reallly touched me. I remember being at the early stages of figuring out what I had, and upon hearing that there is no cure, contemplating my life thereafter.  I might make a follow up video to share even more info because it seems that many viewers want to learn about ET. Given the prevalence of the disorder in our communitities, it really shouldn't be a surprise. Feel free 2 send my a direct msg to discuss further

[Dragonsgirl1]

Hi Tracey, i had my first programming session a few weeks ago and the results wonderful. I have 100% in my left hand and about 96% in my right. I was somewhat disappointed because in high stress or social situations I notice that the tremor comes back. Hopefully they can tweak my settings and fix that. It's those situations when I need it the most. Do you ever have this happen to you? Don't get me wrong, I'm so much better now. The thing is, I really want to get a job and Im worried it won't

[trakat77]

@Dragonsgirl1 Well, as a recruiting exec with Essential Tremor, I guess I'm the person to speak with. :o) The tremor can be exaggerated by nerves and general chaos (ie. rushing to get your makeup on in the morning). For those times when your'e uncomfortable and your hands shake, just rest them under the table on your lap or place them on your resume. The biggest hurdle can be speech, but that doesn't seem to be an issue for you. You'll do just fine. Just arrive early, slow down & breathe.:o) xo

[lauriecrovo]

Hi Tracy. I'm being worked up for DBS. My biggest thing is HAIR! Did you have to shave your hair (it looks really nice in the video)? Where did you have your surgery? I'm going to Stanford. Thank you for this video. I'm not quite so scared anymore.

[trakat77]

@lauriecrovo They won't shave your hair...BUT if you have long hair, have them use a no-pull hair band (no rubber bands!) to tie your hair back--I brought one. Also, ask them to keep as much of your hair out of the bandaging as possible. The dried blood creates a tangled nightmare! You'll need heavy duty conditioner afterwards. I had my surgery at Hoag Hospital with a leading surgeon. Don't be afraid, hun. They'll make you comfortable & you will love the results. Plz stay in touch! xo

[Dragonsgirl1]

Thanks so much. I will definitely let you know how it went.

[Dragonsgirl1]

Hi my name Marti and i had DBS surgery three weeks ago. I have both sides going into one box. I notices how nicely your hair has grown back. My chest healed up right away but my head is taking it's time. So you have any tips? I also have essential tremor from birth though. I've been disabled since 2005. I'm going this surgery will change that. I get programmed on the 16th. Can't wait!

[trakat77]

@Dragonsgirl1 Hi, Marti! I had my last brain surgery 3 years ago, so it's had a lot of time to heal. There are definitely still bald areas where the hair won't grow, but I can generally disguise it & it does improve with time. I'm so excited for you to get programmed & see the amazing results! Be patient with it, as it take several attempts to get it just right. They can impact your speech & balance a bit, but before long you'll barely notice it. Plz stay in touch & let me know how it goes! xoxo

[shellbelle8899]

thank you so much for sharing this. I had honestly never know about this before and I'm glad you are raising awareness and I pray this video helps others.

[trakat77]

@shellbelle8899 It means a lot that I was able to spread awareness on this issue. I'm really hoping for a cure one day. Still, I''m happy person who rolls with the punches and accepts God's plan for no matter what that may be. I wake up evey day with a grateful heart and it would be so nice to pass that same feeling along to others who may be struggling. Attitude, Strength & Faith are everything.

[bobbysgeel]

I am praying 4 u Hunny. Don't 4get 2 let me know how u r...I'm a worrier lol And don't u worry about that shaking...just tell ppl it's the latest dance craze! Wear pretty undies...those gowns spell DISASTER. LOL.LOVE,TER

[luken5]

There are a lot of us out here. I have it pretty much in both hands and legs. I play guitar and like to be the life of the party but lately its been getting in the way. I tried mysoline, propanol and alcohol. The only cool thing about having ET is I never get a complaint in bed. My next step is Deep brain stimulation. Thanks for the video.

[trakat77]

@luken5 LOL! I love that you can similarly keep a sense of humor despite having ET. Seriously, the experience of living with this is a freakin' nightmare, so you have to find a way to laugh about it. I'm glad you're considering DBS surgery. You won't believe the difference it makes. It's a bit uncomfortable to be awake during the surgery, but you'll be so drugged up you'll be more fascinated than anything. :o) I'd be happy to talk with you more if I can ever share more info. Stay positive. =) xo

[dararat27]

Your video kicked butt. My mom who is 72 has ET. She's already paralyzed on one side due to a stroke. Now her 'good' side has the tremors. It's a bad, sad situation right now. I sure could use some tips/support on what's helped you on a daily basis. Is there anything I can do, govt wise, to help on this issue?

[trakat77]

@dararat27 Thank you SO much for watching and for sharing your story. I'm very sorry to hear about your mother. I just can't imagine. I'll send you a friend invite and we can chat offline, as I would love to share some tips and help if I can. It's wonderful that you want to act on your mom's behalf to further the cause of research on ET. It is desperately needed. We'll talk soon. xo

[bobbysgeel]

Hi Sugar...how r u? So is surgery on the 22nd or the 29th? Was hoping 2 give u a peptalk b4 u go. Its been my experience that there's ALwAYS a handsome doc / nurse / anethesiologist SOMEWHERE 2 be found! So look 4 him,k? Also...watch those hospital gowns...they're treacherous! Wear nice undies too! Lol so I hope I've been some help! Much love & God bless u & keep u safe! Huggaroos,Ter

[trakat77]

@bobbysgeel Surgery is the 29th and I am so excited! Seriously! I will be so happy to have the tremor back under control. No fun. :o) I will definitely keep an eye out for that handsome doc, but I'm thinking I would get shut down...no makeup, likely drooling under anesthesia, and shaking limbs on top of everything. Sooooo SEXY! ;) Thanks for all the love and well wishes, honey. It really means the world to me.

[BlackLabLover9]

Aww hunnie, thank you for opening up and sharing your experience with us. You are just a wonderful person and so inspiring! I love your sense of humor about it and I think you are amazing! MUAH!

[trakat77]

@BlackLabLover9 I'm so overwhelmed by all the support everyone has given me. Truly, it's all of you guys who inspire me. I surround myself with caring, kind, loving and genuine people and can only feel positive and optimistic as a result. I do think that happiness is contageous. :o) Sooo thanks to you and everyone else for spreading the happy. =D...That includes lil' Petee Pan. Animals always warm my heart and make me smile, so give him a big bear hug for me. <3 Lots of love, Tracy

[timidas]

wow your very brave and a lovely happy outlook which i think is so important living with essential tremor.

[trakat77]

@timidas I wanted to commend you on making a video about ET, as well. None of us are proud of it and we know that there are others always worse off, but it's just far too prevalent to have so little known about the disorder and such a lack of funding toward research. Noone should have to live like this. Still, I am a happy person and put everything in perspective. I take nothing for granted & am grateful for life and it's many blessings. I believe God has a plan for me, and that keeps me going.

[aussietiger29]

I love your personality and outlook on life Tracy! Very happy and easy-going! I've never hear of ET or DBS before your video - thankyou for sharing with us!! Karlee xx

[trakat77]

@aussietiger29 Thank you, Karlee. I really appreciate it. It's amazing how prevalent it is and yet how few people know it or acknowledge it. Even on YouTube there's limited info. I just really hope for more research to find a cure. Others have it worse than me and it can be debilitating. Again, I appreciate you watching to learn more about it.

[trakat77]

@thelmalou475 The reality is that we all have various challenges & obstacles in life to overcome. I've actually had many additional medical issues in my lifetime...from having my legs rotated (another video for another day) to removal of an eye tumor and random surgeries in between...around 27 and counting. The sun rises each day and I'm grateful for that. I love your humor and positive outlook, as well. I'm so glad to have met you, Sandy. Much love & big hugs, Tracy

[bobbysgeel]

I just had a feeling I could really relate 2 u right away...now I know why. I am disabled & the best way 4 me 2 get thru the rough stuff is laughter. It helps sooo much. It's good 4 me & helps those around me. Keep being the inspiration that u are! How brave 2 share this with us...I applaud ur courage! You are in my prayers Hun. Much love, Ter

[trakat77]

@bobbysgeel Thank YOU for sharing. I couldn't agree with you more. I think that we are in many ways the lucky ones because we have learned to find and appreciate humor in life. I take nothing for granted and it sounds like you have the same outlook. Most importantly, you have an amazing heart and that's such a gift to others. What we may lack in some areas, hopefully we can make up for in others. =) You are so sweet and kind, and I greatly appreciate your friendship. :o) xo Tracy

[MrKongsMom]

Thank you so much for sharing this... I personally love videos like this. I love learning more about the people that I spend so much time watching :) You are incredibly strong and brave and I admire you! Stay strong!

[trakat77]

@MrKongsMom I enjoy these kinds of videos, too...just to learn more about others and their life experiences. Thank you for watching & being so kind to comment. xoxo

[pink0BSESSION]

Don't apologize at all! I think its wonderful that you made this video to raise awareness! I, personally, have never heard of this condition. You are so brave. I don't know if I could ever opt for brain surgery! You have an AMAZING outlook on this as well. You can laugh with yourself instead of feeling so down about it. You show that its something you can live with and live a normal life with! Beautiful video! You're truly an inspiration!! xox

[trakat77]

@pink0BSESSION What a nice comment...I so appreciate it. It's a condition that not many people know about, so if i can help raise awareness to promote more research toward finding a cure, then at least I've done something. Meanwhile, there are just too many blessings in life to be grateful for. :o)

[MsPinkCrown]

you are very brave Tracy. :) awesome and beautiful video! You are an inspiration to me :)

[trakat77]

@MsPinkCrown Awwwww. Thank you so much. That really does mean a lot to me. Lots of love, Tracy =)

[trakat77]

@MsPinkCrown That is very sweet. Thank you. You've made me smile. <3

[dmitrigarcia]

Wow, your incredible Tracy. This was such a personal video. Guess this is more important than our silly reunion at BCHS. Let me know how it goes, I'll be praying for you.

[trakat77]

@dmitrigarcia Reunions aren't silly and I definitely wish I could make it, but yes...this is kind of a pressing matter I have to take care of. :o) Fortunately, I'm not redoing the actual brain surgery portion, so this should be a breeze. =) Thanks again for the kind comment. xo

[lirpagall]

No need for apologies this was a great video for you to post, it is part of who you are and what you have been through. Thank you for sharing!!! Again like I have said before I think you are Amazing!!! You are very inspirational and upbeat!!! Love ya girlie!!! ~~~HUGS~~~ April

[trakat77]

@lirpagall You are so unbelievably sweet, April. Thank you so much. Big Hugs coming back at ya'! xo Tracy