VNS Unit-What to Expect (vagus nerve stimulator implant surgery )
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- Опубліковано 30 лис 2024
- Hello lovely’s! I hope you are having a great weekend, and I hope you enjoy this video. If you have anymore questions that I did not answer about the VNS, please leave them in the comments below:) thanks, love you lots✨ xoxo
I’ve had mine switched on 3 weeks ago. I say it makes me sound like Cher ‘Do you believe in life after love’.
Thanks for your independent opinion. All the other videos seem to be affiliated and miss out what VNS really feels like.
Great video 👍 Thanks 🙏
If you could turn back time would you do this again?
Thank you for such an honest review. Im 53 and young lady u r much braver than me 😊 God bless you
You are very welcome! I figured others would want to see my realistic experience before having one themselves. Thank you for your kind words, I appreciate your comment. God bless you as well! He is so good🥰
The VNS is a wonderful device for so many people. It has helped my husband immensely! Thanks be to God 🙏 for giving this knowledge to the Drs.
***For anyone worried about the scars, you can put a pin into a Vitamin E gelcap and then put some of the liquid on the scar a few times every day. That will diminish and in some cases completely make the scar disappear. I did that for my husband while he recovered and the scar is gone. It works on old scars too***
Have a blessed day!
Hi, love your video! I've had my VNS for 4 years, it's really helped lessen my seizures! Thank you for describing your voice changes, I have them too. All the best, with your VNS!!!!
Going in to get mine on the 23 rd. I’m hoping to get good results…….a little nervous but think I’m more on the excited and optimistic side of it all. I’m praying that it’s a godsend. Thank you for your video and sharing your experience 😉
That’s great! I’ll be praying for a smooth recovery and amazing outcome! Best of luck to you, fellow VNS friend ❤️
Well howd it go
How're you doing with it?
I had grand mal seizures in the past that after two years of trial and error are well controlled by medicine. I still have auras and migraines often. My neurologist recommended one of these but I’m still on the fence because I don’t know if my condition is affecting me enough to justify it. I didn’t know a lot about it based on the sales pitch my doctor gave me but I found your video very helpful on the reality of it. I hope it is helping you and I wish you the best in getting your seizures under control. Stay strong!
Oh goodness! I’m so glad your seizures are controlled now. It’s great to hear success stories! Glad to have helped:)
@@epilepsyawareness2020I decided to get one implanted in June and I’m glad I did! I lost my voice for an entire month but it came back and I feel better than I have in years! It’s not even turned up all the way. The auto stim feature was going off 200 times per day the first two weeks which was shocking (pun intended) but it’s already down to 160 at four weeks. I didn’t know I was having partial seizures that frequently but I know it’s doing something. I also just have a general sense of well being. It calms me down. Sometimes I just swipe the magnet if someone is stressing me out lol. I’m hoping I can taper off of some of my medicines in the near future. Thank you for the video, it pointed me in that direction. Stay strong!
@@h_j_v I’m so glad it’s working so well for you! It’s so great to hear that the VNS is helping someone so well. I hope it continues to do good, I’m so very happy for you!
My chest and neck still hurt, and I think it was last week when I had 5 seizures in one day, they raised the stimulation and tomorrow I go see the doctor to talk to me about the VNS
You're so sweet and well-spoken! I'm getting mine in a few weeks!!!
Oh my goodness thank you! That’s so sweet of you to say! I hope everything goes well! I’ll send up prayers for you my friend✨
Ur so lucky! Best of luck
@@jokersqueen2199 not really. I was supposed to get one 3 years ago, and I’ve been fighting tooth & nail for it for the past 5 years. It’s been a horrible journey. I’m Actually getting it in 11 days!!! It took a hell of a lot of grit. No luck used.
Thank you for posting this I am having my implantdone on Nov 29. I'm still very nervous about it
Thank you. My daughter got it June 2. Turned on June 17. We are navigating the voice changes as the increase the current and it turns on if her heart rate increases. Your video makes me calm down some. 😃
I’m so glad it calms you down! It really wasn’t as severe as we anticipated, the surgery went well and I have recovered nicely. I got the device a little over a year ago now and you can’t even tell that it turns on in my voice anymore. It sounded really bad at first but now it is much better. Tell your daughter I hope everything has gone smoothly with her and her surgery and that the device is successful :) have a blessed day!
Very nice video !!! good luck Victoria !
Thank you! 🤍🤍🤍
I've had mine for about about a year now and it's set to 1.75mA every 1 minute and the wrist magnet is set to 2mA in hopes to lower the amount of meds I'm on.
Since, I have a very high pain tolerance I don't notice it very much. It does annoy me when I'm talking on the phone and the person asks me if they're speaking to another person haha!
It has made my throat a bit sore-ish and my voice a bit rougher, due to me having to raise and lower how loud I need to speak when talking. Kinda sucks, but overall it has made my life better.
You are so sweet and super smart!! Thank you very much for your review. My brother was offered the option to explore this device and based on your experience I can tell this is not a good fit for him. Again, Thank you so much for sharing and being so honest and detailed about this experience. God bless you and I hope you stay positive and happy
I got mine last year very first time it was turned on I coughed but every time they higher it now Ive never coughed since, The feeling I get is like a muscle is being pulled in my neck and then my voice drops but I adjust to it and a week later can talk normal again, it has been amazing only ever had 1 or 2 seizures since i got it
That’s wonderful! I’m so glad to hear that it’s helped you!
And mine the 17th, but I found out it has malfunctioning has killed 10,000. So, I'm on the fence, scared very much actually!
Mine turned on yesterday and I've had really bad migraines...but hopefully I'll get use to it.
Oh no! I hope that gets better! I got used to mine within about two weeks of it being turned on. Now I don’t even know when it comes on:)
Thank you Victoria. I'll probably get use to it and the benefits outweigh the side effects.
Thank you for sharing sweetie. Have you been able to reduce any of your anti epilepsy medication since getting VNS?
Mine are 4-5 inches too.
Thank you ❤️
Got mine but was way sick and had two seizures on the second day…..I don’t get it turned on till the 9th but I had a question for you. When I experienced the two seizures post implant, they were like no other seizure I’ve ever had. All my limbs went numb and my hands locked together. Then last thing I remember was wondering if I was gonna seize. Did you experience any abnormal activity and was you sick for a while?
I’m glad your operation went well! Good luck with getting it turned on, it really wasn’t as bad as I expected. I did not experience abnormal activity, though I did have an increased amount of seizures the couple days after surgery, but I think that was just from trauma. I was sick for a few days and it was AWFUL. I feel very bad for you, anesthetic sickness is the worst kind. I hope I can be of some help, and I’ll be thinking of you on the ninth. Don’t worry about too much, God will protect you and be there for you. I hope the sickness gets better, and that you don’t have anymore unexplained symptoms. Have a great day!
I had more seizures the first two weeks after my surgery than I normally had before the machine was implanted. After that it calmed down. It freezes my vocal cords up when it cycles on, it makes it sound like I'm about to break out crying... It's definitely changed my voice, but the best thing about it.... is when and if you do have a seizure, immediately run that magnet over the implant, the recovery time is almost instantaneous. Instead of sitting there for 10-60 minutes trying to remember what your name and your address is, and what the heck's going on. Coming out of a seizure is such a deep dark depressing feeling unexplainable to those without epilepsy. The seizure aftermath is terrible and this machine does a great job of rebooting that instantaneously, instead of making you feel horrible for the rest of the day after a seizure.
I’m so glad to hear that your surgery/machine has been a success! I’m so happy for you! Mine has helped recovery greatly as well, though it hasn’t reduced seizures as much as we had hoped. You’re right, there’s no way to explain it to someone who doesn’t have seizures. There’s no feeling like it in the world, I wouldn’t wish it one anyone. Again, congratulations on a successful unit implant! Have a blessed day!
You need to wear that for the photo shoot!
I'm in the process of trying to get it for TRD and, still worried about how its going to be after surgery. Idk if you suffer from depression but, do you feel it helps your mood at all? Is it still painful when the VNS goes off for you? Hope you are doing well and thanks for the video.
Hello! Thank you for commenting. I do not suffer with diagnosed depression; and so I don’t feel that I would have the right answers for you. And I would not want to give you false information. It is still uncomfortable when the device turns on, but it does still have pain at certain times. I do gymnastics and it only hurts when I have strained my neck too much- so I’d say the pain is only related to the location of the device and wires.
I hope that all goes well for you and your surgery. Thoughts and prayers for your journey; you’re amazing! Stay strong-you’ve got this😁
I got the VNS surgery around the same time you did and at the first time my voice didn’t hear any different but that was because it was at the lowest stimulation my doctor said she is going to raise the stimulation every week I don’t know if they told you anything but it true that the magnet does something to your cell phone or like debit cards my doctor said it would for a while I didn’t want to wear the magnet but I did hear the voice change that I was wondering if you did the right thing because I liked to to play football and go to the gym and now my doctor says that I won’t be able to do anything like that anymore
My doctor told me I could go about my life normally after it healed, and I ride dirt bikes every weekend so I think it can handle some pretty rough stuff. Probably just watch out for stuff hitting your neck/chest to make sure the device stays in the right place. Mine has held up through several workouts, crashes and pretty bad stuff. It may depend on what brand you have, but mine is pretty sturdy. The magnet did mess with my Apple Watch for the first little bit, but I moved it to the other hand so that they didn’t touch.
@@epilepsyawareness2020 I have an IPHONE 📱 I didn’t like the way my doctor told me that if my cell phone breaks then to buy a new one but I have pictures that can’t be taken anymore from people that aren’t here anymore and thing’s saved on there not only pictures and when I went back to school the first day after surgery there were some people who didn’t want to get near me because they thought the magnet would effect there cell phone or laptop and I’m getting use to the VNS implant my friend’s says that my voice sounds the same I did have trouble turning it on and off and I was having more seizures lately one day I had 3 and the day after that 2 in one day
@@rigoosornio6011 I’m sorry to hear that it’s not working as planned! Mine has yet to improve anything, but I’m hopeful it may get better.
How has it been going? Has it decreased the seizures at all?
Sadly, for me, it has not. We think it has reduced my recovery time after the seizures, but I have not seen a decrease in seizures since I had the device put in. My battery goes dead in about three years, so they will most likely take the device out then. However, I do have friends that have VNS units that it has worked great for them, so it just depends on the person.
Victoria have you seen a decrease in seizures yet being it’s 3 yrs as of this comment? We don’t know what kind of surgery I’m going to get yet, but VNS is on the table. Thank you if you see this comment 🙏
@@marcusjnewtonz28 hello! I hope whatever surgery you have helps and is a good treatment for you. I have not seen any decrease, but I have six different types of seizures, so that may be a reason why it doesn’t help mine as much.
Prayers for you and lots of love your way!
@@epilepsyawareness2020 Your response is very helpful! Thank you so much. I’m sorry you haven’t seen a decrease but hope things are still well overall. Prayers and best wishes fellow epilepsy friend :)
@@marcusjnewtonz28 yes, thank you so much! You are too kind. Whatever you face, we’re rooting for you!
@@epilepsyawareness2020 Victoria I’m doing an overnight EEG in anticipation of DBS surgery 😬 thank you for those best wishes!!!
@@marcusjnewtonz28 prayers and wishes for EEG!
I wanted to let everyone know you can get mri they have to turn the device to 0 before the procedure is done!
I heard the exact opposite. You can't get a MRI of the head or neck even if it's off.
I’ve gotten an MRI with the device but they turned it off and didn’t get the neck up. I’m not sure if you can or not🤔 if I ever have that experience, I’ll let you know.
do you still have epilepsy attacks?
That is so cool! I thought you still have seizures?
I do. The unit hasn’t stopped them, and it probably never will but we are hoping that it will eventually reduce the amount in having.
Hi did anyone here suffer from dpdr? Dissociation? Being stuck in fight or flight? Feeling disconnected from ur emotions and others?
Does it impact your sleep?
It did for the first few weeks after turning it on; but now I don’t notice it. Thank you for your comment!
@@epilepsyawareness2020 Thanks for your response, that was my main concern!
Was it for depression or epilepsy?
It was for epilepsy, but I have heard that people use it for depression treatment as well.
@@epilepsyawareness2020 I see. And has it worked for you?
@@456123ib sadly, it has not helped the way we thought it would. I am most likely going to have it taken out when the battery dies. That will be in about 2 years.
So sad 😞 I thought I was going to get mine! My insurance company denied the m1000 . Then said I could get the 103 said this to my neurologist, did a appeal then they denied me again saying that the device would cause my heart rate to increase which is a lie! 😔
I’m sorry you can’t get the one you want! Insurance can be very frustrating:(
@@epilepsyawareness2020 things are so bad 😞 they clearly lied ! Everyone knows ! So now we have to reapply again go back through the whole process again 😒
@@jokersqueen2199 aww man! That stinks. I hope you get approved this time!
@@epilepsyawareness2020 everyday my life is controlled by epilepsy! It's sad insurance doesn't care
I am not happy with the vns it was a nightmare
What issues did you have?
Could you elaborate on the issues you encountered. TY
You can now never get a MRI
I understand where your coming from, I recently went to the hospital to get an MRI of my foot and they didn’t have the appropriate coil. We ended up having to go back home and wait on the hospital to send off for the appropriate coil. It is definitely an inconvenience at times. I feel like it has probably reduced my Seizure response time but I have not seen an improvement yet in the number of seizures I am having
@@epilepsyawareness2020 the vns brand I have I can't never get a mri for the rest of my life the wire will burn , but I am not happy with the dr that said I was going to have a great one if I had a mri I would definitely die
I'm discussing this with my neurologist tomorrow, as my epilepsy isn't responding to dogdrugs at all.. Wish me luck
@@Welshweimaraner best of luck! Prayers for your appointment. 🤍
@@epilepsyawareness2020 she cancelled my appointment an hour before it was due to start, I'm going to have to wait months again for a new one. So frustrating.
@@Welshweimaraner oh no! I’m so sorry!