We are patients living with Trigeminal Neuralgia, here for your support.
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Janet L Ditslear
- Female
- Noblesville, Indiana
- United States
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Janet L Ditslear commented on Kerry's group 'MVD's'
I also have been neglecting this site, I had MVD in August 2010 and I have been wonderful, however, I've noticed some sensation where the original pain began. This is a sensitivity...no shocks or electric jolts. Did anyone…
Janet L Ditslear replied to Mary Miller's discussion 'Neurosurgeon called me today..on a Saturday!'
Mary, please, please call me if you need anything! I really mean it. The gal who walked me through it, I had never met her until after surgery but called her many times! I was so comfortable with my decision until the day before surgery and…
Janet L Ditslear replied to Mary Miller's discussion 'Neurosurgeon called me today..on a Saturday!'
Hi Mary and Stef, I wish I could encourage you both with the surgery. It sounds so much worse than what it really is....I mean, it IS brain surgery but the results can be a miracle with such high success rates. Pray for courage...I feel…
Janet L Ditslear replied to Mary Miller's discussion 'Neurosurgeon called me today..on a Saturday!'
Mary the timing is definitely something that you want to think about. My advice is to make sure you have several weeks to recuperate after the surgery. Moving is stressful enough without worrying about recovery. If you have lots of…
Janet L Ditslear replied to Mary Miller's discussion 'Neurosurgeon called me today..on a Saturday!'
Mary, sorry my writing was sketchy, but I was doing it via my phone, now I am home so I have more to add, mostly that there are so many conflicting reports. From what I understand, if you are in good health, MVD is the very best option with…
Janet L Ditslear replied to Mary Miller's discussion 'Neurosurgeon called me today..on a Saturday!'
Hi Mary, do not have any procedures before mvd, better results with no other procedure done prior. My
MRI didn't show anything either, I had two arteries. I had mvd in august, I could not be happier. I am 44, and a friend if a…
Janet L Ditslear replied to Gary M.'s discussion 'MVD success stories?'
Hi Gary, I had mvd last august and I feel blessed and wonderful! little things that have taken time to work out, nothing big at all...and, I believe that is from having surgery. I started my activities fully about 5 weeks later. Now that…
Janet L Ditslear replied to Mary Miller's discussion 'Constant'
hi mary, yes it does seem to build momentum and sometimes becomes constant. do your research...i had mvd four months ago and my life is back to normal from about one year ago. it's truly glorious! of course it's tn and everyone…
Janet L Ditslear replied to robyn holder's discussion 'Dental work'
i just saw this and i know it's been some time, but the tn isn't a result of dental work. i thought the same thing, but the tn was probably what brought you to the dentist for the root canal. hopefully, since this is from a long time…
Janet L Ditslear replied to Kerri Lipschinski's discussion 'recovering from MVD with young kids' in the group MVD's
Ella, I read your online diary and I found it very encouraging and many of the same little things I have felt. I am still active with this forum because I can never forget this experience although I only had TN pain for a short time. My…
Janet L Ditslear commented on Kerry's group 'MVD's'
Vic, you are doing the right thing. Blessings to you! Will pray for a successful procedure.
Janet L Ditslear replied to Kerri Lipschinski's discussion 'recovering from MVD with young kids' in the group MVD's
hello Kerri, I had MVD on August 25th, 2010 and I have four children, ages 15, 13, 11, and 9. Although mine are older I am happy to help you prepare for kids.
First, I recommend that you have help and give yourself at least two weeks to just…
Janet L Ditslear commented on Lena's blog post 'Extreme Pain'
i would suggest a new opinion by a specialist who specifically treats TN or atypical TN...the cocktail seems to be too much...I didn't have great luck with neurologists, 4 different opinions, 1 incorrect diagnosis...however, after going to a…
Janet L Ditslear updated their profile
Janet L Ditslear left a comment for Amanda Cook
welcome! janet
Profile Information
- What treatments have you undergone (or will undergo)? With what success?
- mvd August 25, 2010 - Dr Payner, Indianapolis
- Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?)
- in 2003 I had two root canals, and finally the tooth extracted only to still have pain. Then it was gone. in 2006, I had electric shocks while eating and it was sometimes many times a day and others a few times. I went to oral surgeon, 2 dentists, and a specialist and then my family doctor who said, "you have trigeminal neuralgia." Oh, what does this mean? he gave me tegretol but I never took it and it went away. This past February, slowly my teeth felt sensitive. I had my gums sealed. Under numbness, I felt the electric shock, and started on Tegretol, couldn't take it, it proceeded and took another drug, proceeded to get worse, then they gave me more drugs, still no relief. I was hospitalized and given even more, Keppra, and was stoned for about 2-3 weeks. About a month after that, I started stablilizing, and then my sodium dropped and ended up in the hospital. On vacation, sodium dropped and couldn't have water for three weeks. Went to neurosurgeon and he told me to go home and wean off of all drugs. I went halfway and started to feel better. Had a great summer with my kids and out of the blue, sodium dropped drastically and finally had to be weaned off of trileptal my dominant medicine. Still on Keppra and Cymbalta. Having surgery tomorrow morning...praying for freedom from pain and from medication.
- Would you like to recommend a doctor, therapist or a hospital?
- Methodist and St Vincent Hospitals, Drs Payner and Cohen.
Comment Wall (5 comments)
- At 4:16pm on August 26, 2010,
Natalie said… - Welcome to the site Janet and I wish you all the best with your MVD.
lots of Love
Nat xx
- At 3:11am on August 25, 2010,
Liz K. said… - Janet,A mission trip in three weeks to a foreign country after MVD is pushing it. But maybe you can rest even while on the trip? I was exhausted after my surgery but I didn't have any pain. That is wonderful to want to go on a mission trip after that. I have always wanted to go on one even one here in the US but I didn't because of health issues. I will pray for you. Please have someone in your family post and tell us how you are doing.
Liz
- At 12:09am on August 25, 2010,
Scott Orn said… - A very warm welcome Janet!
- At 10:11pm on August 24, 2010,
Lee said… - Hi Janet,Welcome to this support group.Everyone here is very supportive and fully understand the pain of tn.Wishing you a complete recovery where you will be pain free after your mvd.Please let us know how you are doing when you feel like getting on the computer after your surgery.
Sabrina
- At 9:49pm on August 24, 2010,
Liz K. said…
- Hi Janet,
You will be in my prayers. I do hope the surgery is successful. Research is very important. I'm not aware of a sodium issue but I know the drugs have so many side effects. Please have someone update us.
Liz
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href="http://americanataxianetworking.ning.com/">Ataxia (U.S.A.)
Atrial Septal Defect
Autism
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
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Synovial Sarcoma
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