I'm having MVD surgery on May 26. Just looking for any advice or tips before I go in.
I live alone, so my mom will be flying out here (seattle) to take care of me the first week.
I'm a teacher, so I will be off work all summer.
What else should I have ready? I read that I will need baby shampoo for my hair...any other suggestions?
I appreciate all advice.
My neuralgia hasn't been classified as T1 or T2 by a doctor. I would consider myself atypical, but am hoping the surgery will relieve some of the pain. It was suggested by doctors, and not myself, so I am trusting them. (maybe a good idea, maybe not?!?!)
Best wishes on your upcoming MVD. I have been through two about a year apart and debating my next step on whether to have a neurostimulator implanted.
Here are somethings I learned while going through my surgeries:
1. Bring a pillow that you love. I found that hospital pillows aren't the best and you will want some comfort.
2. I used baby shampoo and detangler for about 6 weeks following my surgery.
3. Write all your medications out along with what they look like and when you take them for whomever is caring for you. My husband knew I took a lot of pills but it helped him to make sure I was on schedule. After surgery its hard to keep to your regular schedule of meds because you are exhausted.
4. You will most likely want to take baths so you can sit down. I need some help with hair washing and getting dressed because I was so shaky and unsteady after surgery.
5. Be prepared for the worst headache of your life when you wake up. I requested tylenol most of the time to combat the headache and a cold wash cloth on your face.
6. Don't be scared by the A-lines that go into your wrist that monitor your brain activity during surgery. My first surgery they went in easy and the second they had to go in through my groin. I was a little shocked to find the nurse under there checking it when I woke up. Needless to say I was a bit sore from it.
7. Prepare your body right now with good rest and get enough vitamins and vitamin C.
8. You may have some nausea and double vision following the surgery. Keep telling the nurses how you feel so they can get you the right meds to help make you comfortable.
Take it day by day the surgery. Each day will get easier but it is a grueling surgery for your body to go through. Keep your head high and let the doctors do what they do best.
I hope the surgery works and it gives you relief! Best of luck!
Thank you SO much. Just knowing these few small details, I feel a lot more prepared. I am happy my mom made the decision to fly out and take care of me. How long were you at home in bed? I am a teacher and my students' last day is 2 weeks after my surgery, and I was hoping to be there just to say goodbye. Do you think this is a reasonable idea?
I have more questions than advice on your saying, "I'm having MVD surgery on May 26." and "My neuralgia hasn't been classified as T1 or T2 by a doctor. I would consider myself atypical..."
There are two types of Trigeminal Neuralgia: Type I and Type II. Type II is sometimes referred to as Atypical Trigeminal Neuraliga. Most people agree that for Type II sufferers, surgery is not helpful. I am a little nervous going into the surgery, but am willing to take any chance at having it work.
Here's a link that might help you understand further:
I think I’ve recovered from my MVD, it’s the 2ND radiosurgery that causes me “issues”…does that still have a hint of sarcasm?
I am not a doctor. In my humble opinion, you should explore more medication options (I am not a fan of Big Pharma) before surgical intervention, than you have listed in your Profile:
What treatments have you undergone (or will undergo)?
Vicodin, Percocet, Morphine, Tegretol, Gabapentin, Baclofen, B12 injections, ALA, L-Carnitine, Fish Oil, Cranial Sacral Massage, scheduled for MVD in two weeks.
February 1, 2011 to May 26th. It was 9 months, and I had 2ND and 3rd opinions after my adverse reaction to Carbatrol, before I had fingers in my brain.
I hold my Trigeminal closely, and share my experiences honestly. bob
Thanks for your support and advice. Although I am still new, I have been dealing with this disease for years, only now do I know what I am dealing with.
I have seen three neurologists and am determined to try surgery. I am positive that I never want to put my body through what it went through on medication last winter. I was on the verge of giving up, mentally unstable, and physically couldn't make it out of bed. I missed over a month of teaching and completely lost any desire to be alive. The amount of medicine I was on was way to much for a little girl like me. I am totally willing to undergo surgery as a means of avoiding cramming chemicals into my body. I am 29, extremely healthy, and am maybe to opinionated for my own good. At the end of the day, I decided that TN pain was better than what I was experiencing. I am thankful I have doctors who respect my wishes. Surgery was the next option.
I understand that you might think I am acting hastily, but honestly...if surgery works, I can get on with my life. If not, I will have the rest of my life to try cocktails. The pro's and con's list was too uneven for me to continue medicine.
On that note, can we agree to disagree? :) Do you have any tips for my surgery? And tell me, again, in literal terms, what still causes you trouble? I think the meds left a permanent slowness to my brain.
What causes me PAIN is an acute inflammatory demyelinating polyneuropathy of the trigeminal nerve. In my case, perhaps part of the natural aging process, an inherited genetic disorder? I only know it grabs my attention, as it has since January 15, 2007.
When I said to my Neurologist on April 7th, "This isn't funny anymore" - [after all the failed procedures, including the original 7-pad MVD] - his abstract was that in the waiting room, to my left was someone with MS, to my right was some with MD.
New/Added Medications: KEPPRA, CellCept, Leucovorin. Had 5 days of IvIG therapy. Trigeminal Neuralgia - (TN1) - Primary DISTURBANCES OF SULPHUR-BEARING AMINO-ACID METABOLISM...I'll go with this, as I am not a candidate for any further surgical procedures, including deep brain simulators (DBS). I am also tired of Zombie-Ville, and my many adverse reactions to Big Pharma's answers.
Outside of a still numbness and "snare-drum" feel, the MVD was no problem. Just take it slow on the rehab they'll give you at the hospital, as most health insurance providers want you out in 48 hours, I feel a person should be hospitalized at least 53 hours after a craniotomy.
2 years ago I was taking 51 pills each day, I missed 3 of those years. Take care, bob
You are doing exactly as you should be, self advocating and knowing your limits. Willing to try different things and take risks you feel confident with are worth it. I am going to be praying and keeping my fingers crossed for you. I like your way of thinking, you are so young and no you are missed and respected by your students and co-workers. Your age alone will help you heal fast from a surgery that is quite risky and may increase your pain, however not being on zombie medication and taking that risk is your choice. It may not change a thing but you may feel even better off knowing this after the fact because then you have tried all you could at the time. The gabapentin and lyrica changed me and I wasn't able to drive or hold a convesation and am raising a small family. As long as you are aware of the risks and have confidence in your doctors and keep your positive energy you will accept the outcome and carry on. I can tell that you are willing to do that and respect you for it.
Please don't let any of "our members" scare you off, especially being told "excuse me Missy", not very supportive or appropriate, however I think he means well . . . you handled it so perfect and I really appriciate your insite and comments. A very smart, strong girl who believes in herself :)
i was honestly looking for suggestions on how to prepare for my surgery. that's all.
if i wanted to be criticized, i would have asked for advice on my decision.
i'm in charge of my body and my life. not my doctor, or my TN. or anyone else, for that matter.
and to the pharmacist who rolled her eyes at me yesterday when she realized how many pain pills she was giving me....i'd like to stick her face in an electrical socket while stabbing needles into her gums. then she can roll her eyes.
Note for Jessy: your advice on how to prepare for MVD is really very good. I've been talking with chronic face pain patients for about 17 years, and I don't think I've seen better. I might add one more explicit point, if I may: since Miss Tammie could be pretty unsteady on her feet for a few days, she might want to consider making advance arrangements to be visited by a professional nurse or care giver for a few days post-op/post-return to home. Such a pro can also answer questions of family, in addition to your own...
Referencing your Profile and lending honest comments from my personal experiences of Living with/TN, and Living with/Permanent Disabilities due to TREATMENTS for/TN, well, as my friend Tracy says, "however I think he means well".
Having been there twice, Jessy gives loving support and wonderful tips. My MVD was no problem. Most health insurance providers want you out in 48 hours, I feel a person should be hospitalized at least 53 hours after a craniotomy;) - That is funny, to me!
Another friend of mine, Knows Pain! I couldn't let that reference pass, or this most recent article.
I think you made a good decision to have your mom stay with you for a bit after the surgery. It will be a great ease for you in helping and mom's always seem to make you feel better! I think you are doing great advocating for yourself and it sounds like you made the best decision for the MVD. There is nothing that will give you a definite on whether its right or wrong. It is truly are personal decision and you won't know how the turn out will be until you have it. You will only know when you got to the end of the line with medications and the heart break that comes with trigeminal neuralgia. I know after two MVD's and having trigeminal neuralgia and a cross between genticulate and glossopharyngeal that you want to try what ever you can! Personally, I was given the chose of cutting the nerve or having the neurostimulator implanted and I can't come to a decision yet after only being 6 months out of my last MVD. I am currently 9 weeks pregnant and this has become the biggest fight for daily survival. After this child I am going to explore the options for the neurostimulator.
I was in bed for about week to a week and a half. I was taking short walks while I was home to just get outside and be mobile. I think you will be fine to go and say goodbye to your students 2 weeks after, just keep in mind you will be pooped once you get back. You will probably want a nap after wards but it will be good to be out for a little while.
I also thought of one more thing. Check with your health insurance about being assigned a caregiver. I am blessed with really good insurance so I don't know if it will be an options. The caregiver was in contact with me and my family members before and immediately after the surgery. They were able to answer any questions we had after we left the hospital as to what is normal and what isn't.
I hope it relives your pain! You don’t need any special shampoo just a good nurse (mom) to talk care of you for at least a week. I went back to work after 3 weeks. The first week is really the worst. I was in the hospital for 4 days, could not eat much and was very dizzy for a few of those days. Plus the pain in your head it’s pretty intense. But compared to what you’ve been through it’s worth it. I hope.
I know we all heal differently, and I have had several surgeries, including reconstructive surgery on both of my knees, and did really well with the anesthesia...however. this is different.
My mother is coming out the day before my surgery (Wednesday) I will go in Thursday. She is planning on staying until the following Wednesday. Is that enough time? I have friends and co-workers who will be able to care for me after she leaves...but there is nothing like having my mom here. What do you think?
Sorry I have so many questions. I'm a Type A, a planner, and I tend to always ask too many questions. Thanks again :)
I wish your mom could have a couple more days with you but you sound like a pretty independent woman. I had the luxury of a boyfriend (with a control issue) to take care of everything for... well he still takes care of everything. Good thing I'm a little scattered. It's all out of love and my pain. Still after a week I really wanted to move around a little bit. Made a little food, took little walks around the house & neighborhood, NO Driving till about 3 weeks so you'll need to plan to have your friends run an errond or two for you after mom leaves. Oh an No stairs we made a bed downstairs with a comfy futon (oxymoron?) the first week.
If you tolerate anesthesia you will be okay. Everyone does heal differently, I had a screw loosen on the plate so with everystep there was a tick, tick, tick for a little while. If it doesn't drive you crazy you'll be fine.
Lots and lots of great pillows so you can sleep reclined in bed a little and an ice bag, if you can remember before you leave the hospital ask then for one there cause they have velcro and strings you can tie and are really good. I'm from Canada and I used it on the plane and at home the first couple weeks after a crainiotomy and it really helped. No stairs is a really good plan. Im glad your mom will be there.
Tammie, I just went to a pain mgt specialist this week who had me get an MRI of the brain specifically the brain stem so he could view the 5th cranial nerve. He wanted to review the images with me & the surgeon who does 25 MVD each year to see if I was a good candidate for MVD surgery. I had my consultation and I met with the neurosurgeon who briefly explained the surgery. He does the keyhole MVD which is a dime size opening in the brain behind the ear. This is the less invasive type of MVD than the usually surgery which is a 1" opening and mosre invasive. If your neuro doesn't know which type of TN you have and you have ATN than the surgery may not be successful. I would ask the surgeon some more questions prior to the surgery or cancel it and get a 2nd opinion before getting surgery. I don't want to alarm you, but I think taking a conservative approach with a few opinions is a wise practice. All surgeons want to operate. How long have you have you had your symptoms and what medications are you using now. The fact that your neuralgia hasn't been classified as TN or ATN is a concern. Hang in there, we are here to support you and I will keep you in prayer. Surgery is a big step.
I'm really sorry to say this, but I am getting a little tired of feeling like people are telling me what to do.
I trust my doctors. I am having surgery in two days. And I would greatly appreciate if you would either support me or leave me alone.
Most Importantly, I do not want to go into surgery scared, or feeling as though I am making the wrong decision.
I am 29 years old. I have a long life ahead of me and like I said before, my TN isn't classified because I experience both types of pain. It's not because my doctors don't know better.
Maybe I should spend my time elsewhere. This isn't my idea of support.
P.S. I have had symptoms for 2 years. I have seen 3 neurologists and the chief of neurosurgery. The neurologist and I decided to speak with a surgeon. My doctor wasn't born yesterday, he has heard of the "less invasive" procedure and that is what I will be having Thursday. I am fully aware that the surgery may not be successful, and I will choose over and over again to have it done. I'm not impressed with a surgeon who does 25 MVD's a year. What an awful way to judge a surgeon. I'm a second grade teacher and can not work another year in pain. So yes, I will have the surgery. I'm sure anything else you need to know can be found on my page or within the threads of this post.