Well Barb had the surgery this morning. Dr. came in and told the family that he was sorry. But he could not do the MVD. After he got into the skull, he found nothing wrong. said she is just going to have to live with the pain. Don't they run any test before they do these procedures? We think you have TN, but the surgeries did not help, we are sorry. Two procedures in three weeks. She can barely talk, can only eat soft food, lucky to open her mouth a quarter inch.
Mark, I’m not familiar with Barb’s history, but in my experience…
The neurosurgeon usually looks for signs of compression prior to MVD, if none are seen ( which can happen) he/she would discuss this with you prior to performing the surgery, so that you would be aware that there are no guarantees. Often compressions are only found once the NS is inside and viewing the trigeminal nerve , sometimes no compressions are found at all.
This doesn’t mean Barb doesn’t have TN.
There are a few suggested and known causes for TN but a lot is unknown…in fact persons without TN who upon death had an autopsy were found to HAVE compressions and NO TN.
All this being said, I think pain control and healing are priority one…and then another opinion from an experienced Neuro or neurosurgeon might be in order on what can be done next to improve Barbs ability to function and pain management.
Any doctor who says “she is just going to have to live with the pain” is NOT a good doctor, and doesn’t really know much about TN pain.
I’m sorry for your experiences to date, I hope with time, much research and a good doctor to support and help guide you, Barbs pain will be more manageable.
Sending you positive thoughts & prayers, Mimi
PS, check out our ‘recommend a doctor’ page, there might be some suggestions for your area.
No test, just glycerol injection 3 weeks ago, MVD yesterday. No MRI, or anything prior to procedures. Just dentist, saying I think you have TN, go see your neurologist. Neurologist sent her to see her Neurosurgeon. Neurosurgeon tried the two procedures.
I am wondering what we do now. Neurosurgeon will be in later this morning. What should we ask? Besides how is she suppose to live like this now.
Btw Barb can not get an MRI do to VNS implant. Put in by the same neurosurgeon.
Dr. Was in to see Barb. Less than 24 hours from surgery and they are sending her home. Direct from NCC. Neurosurgeon is going to refer her back to her neurologist to attemp to manage pain control . This is so frustrating. I can only imagine how my wife feels.
http://www.livingwithtn.org/page/find-a-doctor-for-chronic-facial-pain
All doctors listed in the above mentioned link are LwTN member referred.
Mark, I think it’s imperative to first allow Barb to heal from these two procedures, is she on any anticonvulsant medication? Of course I’m not a doctor but I highly advise you contact a qualified neurologist ASAP to get Barb’ s pain under control , tell them it’s a pain crisis.
When Barb is up to it have her read through our MVD group ( you can find this group under the groups tab above) many of us have written about our experiences while healing from MVD. This way she’ll have a good understanding of what to expect.
Microwaveable heating pads, ice packs, lidocaine creams and mouthwashes are all tools some of us use to get through the horrendous pain…
I’m so sorry for the added stress and lack of support from your neurosurgeon, this just shouldn’t happen.
I can’t stress enough how important it is to have a neuro who has experience with TN, there are options/procedures but you need to really read and research. Many people here drive or fly to different states/provinces to see specialists.
Something you may need to consider, take good care of one another…hope I’ve been able to help in some way…
Please keep us updated…
Mimi
Barb has had this pain now for over 18 months. Face pain it a lot worse since the MVD. Going to she her neurologist Monday. We just don't where to turn..
Barb has epilepsy since she was 18. She is allergic to most seizure medications used to treat TN. She has a VNS implant for her epilepsy. I am wondering since there still remains a broken lead from her first VNS. If it was possible for that lead to be shorting some how causing this pain.