NeuroTalk Support Groups - MVD-post surgery daily diary

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - MVD-post surgery daily diary (https://www.neurotalk.org/trigeminal-neuralgia/2052-mvd-post-surgery-daily-diary.html)

I'm not sure you will get this since none of my posts have showed up but thank you, you have given me courage to go ahead with my mvd. Mark:)

Hi Ella, I am also Canadian. Just DX with petrosal vein compression of the CN5, and awaiting MVD.

Doctors have not yet referred to TN, only using the phrase spasms.

I have spasms both right-&-left side of my face.

Question: Are there any local support groups in Canada...?

Thx
michatki

hi ella- I am soooo happy for you, i ma new to this and your story gives hope and is aspiring!!! Thnak you!!!!!

T.N groups in a few different countries

Michatki ,
I hope this helps you and others that are "long distance"--

American Pain Foundation: Trigeminal Neuralgia
http://www.painfoundation.org/page.a...045.htm&menu=1

Trigeminal Neuralgia Association
http://www.tna-support.org/

Trigeminal Neuralgia Association Australia Inc.
http://www.tnaaustralia.org.au/

Trigeminal Neuralgia Association of Canada
http://www.tnac.org/

Trigeminal Neuralgia Association UK patient support
http://www.tna.org.uk/

these are from the list of useful websites thread which has many more links and helpful info for lots of us here s the link to that thread

http://neurotalk.psychcentral.com/thread169.html

.... I will see if I can get Ella to check in ...
PEACE
BMW

Well, BMW summoned me on Facebook. Sorry for not being around much. Often people from these boards and the BrainTalk communities will contact me through email if they have any questions or comments about my MVD diary. I answer all my emails. My address is ellacjn@hotmail.com.

There is a huge support community on Facebook as well. Both sufferers and family members from all over the world, post support and ideas. When we are going through a rough patch, ultimately we are alone in our pain. Since there is no outward sign like bruising or blood we look perfectly fine. Only a fellow sufferer truly knows the desperation of this relentless affliction and although they can't help your pain, they can hold your cyber hand from anywhere in the world. I would be happy to be "friends" on Facebook with any TN sufferer and introduce you to the other members. Here is my link, just let me know you are from here. http://www.facebook.com/ellabc
It's a great place to go when you are hurting in the middle of night all alone. Because of time zone differences, you are never alone in cyberspace.

Michatki,
I'm sorry for your suffering. You did not mention where in Canada you reside. I know there is a group meeting in the Toronto area on the last Sunday of each month. Here is the email address of the person who sends out notices about those meetings. Jan@catna.ca. If you are in the GTA, contact her for further info. I have never attended one of these meetings so I cannot comment on how they work or how big they are.

At www.tnac.org you can click on "support" in the nav bar on the left side and it will give you the links to all the support groups in the difference provinces.

As for me, my TN has been behaving. Since that weird blip in June, it has been quiet. Going through perimenopause, I find a definite correlation between my TN and hormone surges. Although I do not get shocks anymore, sometimes, before my [irregular] period, I can experience a sensitivity that feels like it is about to be a shock, but it does not come. Sometimes it comes in the form of a premonition. I know that sounds strange, but I actually get a premonition, just before one of these sensitivities. A subtle reminder that this monster is lurking in my head somewhere and keeping me in check, so I never get to forget or take it for granted.

Since my MVD in 2005, I have been able to get on with my life. I work full time, I am still writing my advice column and now have embarked on writing a novel.

I know most people posting in these threads have failed MVD's, because the ones who have successful ones, can't wait to put this chapter behind them and never enter anything which reminds them of their suffering. This is why I posted this thread in the first place, so others can see there is hope. The numbers don't lie. For Classic TN the success rates are in the high 90th percentile. As for ATN, I think each case has to be looked at individually to assess the success rate. But the fact still remains, in the hands of an experienced surgeon, you may have a good chance of beating this thing. The surgery sounds far worse than it actually is. Recovery time is a lot shorter than going for plastic surgery which people do all the time these days. :wink:

I lost 13 years of my life being afraid of MVD surgery and living on high doses of Tegretol and pain. If I had only polished up my crystal ball, I would have not lost those years. Doctors always said, "If the meds work, stay on the meds", so I lived in a Tegretol fog for all those years.

Please feel free to contact me on Facebook or by email. I will do my best to answer any questions about the surgery or just talk and offer some friendly support. :Dancing-Chilli:

Ella

PS Thanks Tina for reminding me to come back.:Thank you:

July 22, 2011
6 year anniversary of my MVD

Well today is July 28th. My MVD anniversary came and went and I didn't remember. That's huge!! Maybe the emotional hold is loosening it's firm grip?

This year has been quieter. Very few shocks and even those were so mild the average person wouldn't even realize it was TN.

Because of this diary I kept while I was recovering, I have people writing me all the time, from all around the globe (ellacjn@hotmail.com).

TN forums are a great place for support, but let's face it, most people with successful MVD's have no reason to stick around. They want out and never want to look back. Who could blame them? What that leaves is an unbalanced view of MVD success rates.

I urge anyone who is thinking about taking the MVD route, to look further than this or any other forum. Look at statistics, speak to neurosurgeons, read textbooks. It's serious and it's scary, but for the right candidates it may give you back the life you've lost.

Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about.

Tomorrow is my birthday, and I can't think of a better gift than the life Dr. Michael Tymianski of Toronto, gave me six years ago. :D

July 22, 2012
7 year anniversary of my MVD

This year has been very typical for me. Very few shocks. Still had my usual small flair in April, but nothing that required meds.

This is the first year I am in peri-menopause and guess what girls, without that monthly rise and drop in hormones, the difference is extremely noticeable. Far fewer problems. Now all I have to be concerned with is the weather and atmospheric pressure.

For all of you that are going through MVD this year. Good luck. I know what a hard decision it is to make, but once you make it you are on to a new beginning to an old life.

I still know that I have TN. I always will. The memories and thoughts are never going to go away. You can't suffer so intensely and so long and just wake up and forget it existed.

Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about. :D

Quote:

Originally Posted by ella138 (Post 15663)

By posting this diary here, I hope it will continue to help as many people in this forum as it did in the old one.

MVD July 22/2005
Days 1,2 & 3
I go in and they do a cat scan and put these little electro tapes on my head in different spots..something about lining things up in the surgery. I speak to the anesthesiologist and he puts in an IV and makes me good and stoned. So far it's nice. I wake up in recovery with a small pressure bandage behind my ear covering the wound. They start grilling me on my name, the date, where I am etc. In the meantime the dr went out to speak to my husband and sister and told them there were 2 arteries on my trigeminal nerve and he put in several teflon pads to separate them from the nerve. As I wake up they put me in a step down unit which is like an ICU. I was no nauseous or dizzy at all. Maybe because the anesthesiologist gave me gravol in the anesthesic cocktail. The dr forgot to order pain meds for me and I really really needed them. Finally he called and they gave me morphine. It didnt really take away the pain but it took the edge off. The pain subsided within a few hours and I cut down the morphine. After 24 hrs they put me in my own room and I chose to cut down the morphine to tylenol #3 (codine). I stayed on that only through the next night and then went on 2 extra strength tylenol every 4 hours. My lower lip and half my tounge are numb and I have had 2 TN twinges since the surgery. They told me that was normal and it would take time for the nerve to heal as I have had TN for 13 years and they manipulated the nerve. It's interesting that the numb spot is exactly where the trigger point was. So I've cut down my tegretol form 1200mg to 800mg and will cut out a further 200mg every week until it's gone (hopefully). Sometimes I think I'm about to have a twinge but it doesnt happen. I never vomited as I read many others have. I was not dizzy except for the medications they had me on. I'm reletively pain free from the surgery except for a bit of soreness. Now I will keep my fingers crossed and hope that this surgery worked. It was a ***** to make the decision to finally have it and I went through **** up until the day of surgery but it was not that bad...so far. Obviously it has only been 3 days so I'm sure much can still happen but I'll take 1 day at a time and I'll keep you posted on my progress. Tomorrow I will try to wash my hair. They took the dressing off before I left the hospital.

Day 4 after MVD surgery.
I woke up and my eyes were swollen shut. I freaked when I looked in the mirror. I went to my family Doc this morning and she said that when ever someone has surgery and is intubated (as I was) they have to keep your eyeballs from drying out so they put gel, pads and tape over your eyes to keep them shut. It seems I had an allergic reaction to one of those products. I look like one of those people who you see on TV after they come out of face lift surgery!. Anyway the doc said cold compresses and antihistamine meds for 3 days or so and it will be gone. As far as the rest goes, I had a shower and washed my hair today. No problem there. No twinges so far today, not even a headache. I finally went to the bathroom (#2) today after 5 days. It was like giving birth. Enough said. As a matter of fact I'm rather bored. I guess that's a good thing. I'll keep you all posted as the days go on so anyone else thinking of having an MVD will know what to expect.

hi there,
your story will benefit hundreds of people considering this option as it has me. i had full on tn for 2 years about 10 years ago. never left the house and became a recluse except for dr's and hospital appt's. 4 months ago it has resurfaced, at about half its original intensity. i cannot go through this again if it gets up to full speed. i'm 43 and care for my parents one of which has dementia. STRESS STRESS.
i just hope that your results with mvd are typical results and not something out of the ordinary.
thanks again and take care
trevor

Quote:

Originally Posted by barkeep291 (Post 906789)

Trevor, I as told that my results are typical for someone with classic TN. As long as the surgery is done by an experienced TN neurosurgeon and as long as the TN you have is Classic and not Atypical, your results should be very similar. The actual stats are in the book Striking Back. The are something like 95% success for MVD under the conditions I mentioned above.

Quote:

Originally Posted by michatki (Post 736512)

Have you contacted the TNA support group in Florida?? They go by the Facial Pain Asociation now,,but they usually keep postings on every group they know about,,,can't hurt....
I had an MVD an although for me it did not work I am still very Pro having them if you are the right candidate,, sounds like they think they see something so you probably are.
Although I have a high tolerance for pain,,the first night was bad but I was up and walking the next day and have had back surgeries that hurt more,,,you'll be fine
Keep us posted on your journey,, we are with you