I have nearly completed one trip around the sun on my journey with TN. I had my first appt with the neurosurgeon last week. I am blessed to be able to see the infamous Dr Kaufmann here in Winnipeg Canada. I am now on the surgery slate but will have a 6-9 month wait. Is this a normal length of time to wait? His concern is that I have not had it for very long, I have not had a remission and it is not visible on my MRI. He still recommends the surgery and feels confident he can help. Can’t help feeling like I am am being delayed because I am having too much pain with no remission. Thats the pain speaking.
I had pain for 4 years. I did have remissions in the beginning, but the last year was pretty much constant pain. I don't know if I understand the reasoning for needing a remission to justify surgery. If it is TN, it is TN. When I finally got pushy and would not settle for a doctor telling me just to take more and more drugs that my body could not tolerate, I found a neurosurgeon who was willing to do surgery as soon as he diagnosed me. It is a big decision, but the MVD did get rid of the excruciating electric shock pain I had. Recovery was not a piece of cake, but my quality of life has greatly improved in the past 9 months. The biggest lesson I learned through it all is you have to be your own advocate! Do as much research as possible, get educated and then push for what you think is right for you!
I agree that TN is TN regardless of how long you have had it. I will be having surgery so I am not concerned about that but was wondering if the length of time seems reasonable. He does about fifty surgeries a year all across canada so perhaps the wait time is okay.
I guess it just depends on what you are comfortable with and willing to endure. I had two surgical opinions. One doctor wanted me to live with it another year (I was in agony), although he did see a compression on my MRI. The other doctor was ready and felt confident he could help me after the first consultation. It took me a few more months to be ready to go through with surgery. But I'm so glad I did. I'm still not sure I'm answering your question. The decision to have MVD is not necessarily easy. I do wish you all the best!
Maybe you could poke around the Canadian Group here http://www.livingwithtn.org/group/canadianmembers
So us in the USA don't know about your wait times -- but maybe your meds should be upped in the meantime!
Somebody here very recently is/has using your surgeon -- put his last name in search box above!
I hope you get some relief soon - there are things to keep your pain down right now like topical meds you put on your face.... there is a group for that too here!
Thank you KC Dancer for the great heads up for the Canadian group. I had no idea there was a Canadian group. My pain is so strange to me that I am not usre topical creams would help. At times it feels like every tooth is abcessed on my right side, then it feels like I have just chomped hard on my tongue or scaled the roof of my mouth. Often I do feel the pain externally but more often it is inside my mourh.
Hi Patty,
I’m having mvd with Dr. Kaufmann on April 9th.
Here’s a quick history of my TN;
March 2002 diagnosed right side TN1
June 2002 diagnosed left side TN2…bilateral TN
October 2002 start weaning off meds, enter an 8 year remission!!
April 2010 right side TN1 wakes up, get on meds, controlled after several weeks.
April 2012 left side TN2 returns with a vengeance. Start increasing and adding med combos to try and reduce the pain, to no avail…
September 2012 left side becomes completely resistant to all meds.
(Started researching MVDs in August )
By November have consulted 2 neurosurgeons, 1 here in Edmonton, Dr.K in Winnipeg.
End of November dr.K agrees to do surgery 8 month wait. ( he’s very busy, highly recognized neurosurgeon in Canada, top 3 in North America)
By end December I am now experiencing TN1 shocks, on top of TN2.
Progressively gets worse and worse. Pain hovers between 5/10 rarely to mostly 8-10/10
Meds continue to NOT touch the pain, am at my max for 2 out of 3 of my meds. Neuro hesitant to increase anymore.
Contact Dr.K’s office to update on change of pain and intensity.
March 15th, Dr.K’s office calls my surgery is April 9th.
If I had chosen the Neurosurgeon here in Edmonton I could have had mvd here within 2 months, however I went with my intuition and based on Dr.K’s experience, reputation and genuine passion for helping people with TN and other Cranial disorders.
I also spoke to patients who had the mvd with him and got glowing recommendations, on him, his staff and the hospital.
Choosing mvd, is a difficult decision one that requires a lot of research and thought. Had my increase and change if pain happened sooner I may have gone with doc here in edmonton out of desperation.
I’m glad I made the decision and researched while my pain was somewhat controlled.
I asked Dr. K’s assistant if they were bumping someone else to get me in sooner, as that was one of my big worries, we all suffer so much…she reassured me that I was their “worst” case at this time, grrreat!
If you feel you can’t wait that long, and your pain is out of control, email or call their office to discuss options. They’ve been very kind and considerate towards me.
If you would like to chat privately or have other questions, feel free to message me.
((( hugs ))) Mimi
OH -- there is a lidocaine mouthwash that is a prescription that people on here use!
Those seem like crazy restrictions to me. Once we decided I needed mvd my surgeon moved things around on his schedule to get me in ASAP. It seems strange to me to force you to endure 6 months of pain if they already know you need the mvd.