We are patients living with Trigeminal Neuralgia, here for your support.
Connie's Page
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- Please indicate your membership type
- Patient, patient
- What type of facial pain do you have?
- Type I
- What treatments have you undergone (or will undergo)? With what success?
- MVD in May 2009
- 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 2001 I woke up with sharp jabbing pains in the lower left jaw line. I went to my family dentist who couldn't find anything wrong thru xrays. Then on to an endodonist and still nothing wrong. I ended up going to my doctor who referred me to a neurologist and was diagnosed with TN. I had two MRI's over the eight years that showed no compression but then it did rule out MS and brain tumors. Over the years, I would have times of remission and then relaspe back to pain again. The main med was Tegretol with increasing doses over eight years. I was on 1200 Tegretol, 40 Baclofen and 400 Lyrica when my Tegretol levels became too high. The pain was beginning to come around more frequent and meds didn't seem to be working as well. I ended up having an MVD in May 2009. I had two artery compressions and two veins interferring with the nerve. I have now been pain free for 2 years. I feel I have my life back again.
- Would you like to recommend a doctor, therapist or a hospital?
- Dr. Mitesh Shah, Neurosurgeon Indiana University HospitaL
Connie's Blog
Trigeminal Shingles
I had an MVD 9 months ago for trigimenal neuralgia. I haven't felt the nerve pain since I woke up in ICU after surgery. I feel completely back to normal and am very gratefull. Two weeks ago I developed trimeninal shingles. I was told by the doctor it could be extremely painfull. Fortunately, it didn't turn out to be real painfull and I am already getting over it. Has anyone had these shingles that have TN? If so did they seem to come back or was it just one time.
Connie
Posted on March 1, 2010 at 1:03pm — 4 Comments
Comment Wall (3 comments)
- At 7:02pm on January 19, 2011, Diane Linston gave Connie a gift…
- At 12:08pm on January 19, 2011,
Diane Linston said…
Hi Connie, thank you so much for reaching out to me. I love to here success story. Just want to ask have you been to the dentist since your surgery? We are not really sure if going to the dentisit hit a nerve? I don't think that was the case for me.
Iam taking it easy, thanks for telling me about bending down, I have dropped a few items and went to picked them up but I knee down not lean over.
When did you go back to work after the surgery? I work a 9-5 in a call center which can be very stressful at time, But I am not schedule to go back to work Until March 7. I am a also Fashion Designer, So I have not schedule any show until June, They said it take 6months - a Year to be fully recover.
I really consider my self very blessed I only had TN for 6 month, I was like you on every meds imaginable, As of Jan 22 I will be medication Fee (Praise God). That is only becasue I was being weng off. (Kepper) The med was not working and in Dec the attacks became worsen, I actuall went to Pittsburgh Pa to have surgery there, My Dr here I think she only knew to just give me med after med, I had to find a way to help my self. I pray to God for all who is suffering with this monster. I know a lot of people are missed disnoges.I never through 2nd about having the surgery, not one time. I heard so many people say they are scared to have the surgery, I would be more scared to countine to have TN. The after the surgery was pretty ruff I came out with a horrable headache, which is now gone I have a little dizzness from time to time but I am sure that will go away.
I will pray for you to countine to be pain free, and thank you again for reaching out, I will wait for your replay.. Diane
- At 11:55pm on March 2, 2010,
Julie said… - Hi Connie,
Hope you are feeling better. I saw the comment that you left for Diana regarding the MVD procedure you had. My doctor suggested I have it done as well since my Gamma Knifer procedure in 11/09 didn't take. I've been researching the procedure, & am grateful for your posting.
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Atrial Septal Defect
Autism
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
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Synovial Sarcoma
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