Why so many do not come back after sucessful TN surgeries

*Author's note. This has been a very hard blog post for me to write. Please be patient with me if it seems my thought are wandering.*

I feel I have nothing to lose by being honest here. Someone, who was new here asked why it was most people do not come back after sucessful Tn surgery. They thought it was they were moving on with their lives. Having talked to many I can tell you more than that the answer is found in two words. SURVIVORS GUILT. Speaking for myself, I often feel at a major loss to know what to say when a newly diagnosed person, who is badly frightened posts their first blog here. I have walked in your shoes. The only reason I am alive today is the fact I did not want my kids last memory of me being that I killed myself. If I did not have my boys, I would not have cared and would have taken a leap off the Vista Bridge.

Gosh, it has been a long time since I thought about the day I thought about going to the Vista Bridge and ending it. I need to take a break here. I will do a part two to this blog entry tomorrow.

In the mean time, remember there is a answer out there. I am living proof of that. DO NOT GIVE UP!

"My name is Sarah Hobbs. I AM A TN SURVIVOR"

Fact is you all are TN survivors as well.

Livingstrong,

Sarah

My thoughts and actions are very much like yours.

Even though I still have lingering pain after my MVD I will always love this site as it gave me hope in a very dark time of my life.

I fight through the pain on a daily basis but the point is I fight.

I sometimes think what kind of monster have I become.

I eat painkillers like jelly beans and get happy excited when I see the needle the doctor is going to use for the nerve block.

My kids see all of this unfortunately.

They tell me they hope someday they will see me pill free and I have tried to step off with horrific results.

Last time I tried I asked my doctor to write me a script for 800mg Ibuprofen.

I had taken so much in a 3 day period it had worn the lining off my stomach and created an ulcer.

That healthy step cost me an ambulance ride with the ER physician telling me to get off the ibuprofen and get back on my Oxycontin as it was easier on my stomach.

Apparently ibuprofen is an “NSAID” which if you take too much it will eat a hole in your stomach.

I hope one day there is a cure that makes us all feel better or at least makes our lives a little easier.

I’m glad you’re here with us and have shared your story and past experiences.

All though we all have had really bad days your story shows how you chose to win your fight.

It can be done!

I remember the day I considered ending it and taking a jump from the Vista Bridge. When I would get hit with massive TN attacks, I would not fall to the ground, but I could not walk, and was stuck where I was at the point the attack happened. The day I thought of calling it quits I was downtown standing on a sidewalk when the attack hit. I stood there thinking, I am not longer living, shoot I am not even coming close to existing and if this is all I have to look forward to screw it! A very loud voice went off in my head and shouted, "Sarah what the fuck are you thinking?!? You are in for the fight of your life, but you have to fight this!!!!! "

Little did I know I was going to fight for 3 years to find answers.

Livingstrong,

Sarah

I don’t know how much more of this I can take I’m getting these attacks more frequently the pills barley work and the pain pills make me sick as hell, they don’t work anyway I’m in and out of the er and I’m cranky and not really socializing with the outside world school is getting harder and being in pain doesn’t make it any better! I’m scared…

Thank you for that Sarah. As a newcomer to the sight I truly appreciate your words. I have never thought of suicide since my TN has come and gone over the last 6 years (this last bout has lasted over 1 year and my pain seems to be not so bad (well I guess that's relative). I hope that one day I can be a survivor because right now I just feel like I am maintaining not winning this battle.

Every day I wake up and hope that that day is the day it will be gone and that it will never come back. Yes I realize the improbability of that and the ultimate denial of my TN but it keeps me going. When I am in pain I look at my 2 little girls and really just see the sunshine in my life pray that they never experience this pain.

Jen

I never considered the ‘Vista Bridge’, for that I am grateful.

On January 15, 2007 at about 5:45 p.m., I took a bite of a sandwich…

Medication reaction(s), an MVD that worked for 2 weeks, (2) Radiosurgeries, 1st lasted 2 weeks, the second SRS left a lesion…and that’s just my TN Story!

Fighting the good fight, well, I just don’t fight any longer. I participate in my life.

When I get better, I hope I will be gracious enough to return, as many of us do.

That moment in January 2007, is still in my face; I am Bob Snodgrass, LIVING with TN1, not the other way around.

Many bad moments, does NOT make for me a bad day. Every day IS a good day, some are just better than others.

My attitude of gratitude, I pray to always be able to share.

Life IS good! My very best to ALL! bob

I come and go cause the meds Im on cause me to be pretty vacant. The combo is quite good at keeping the pain away so far until this last cold snap..somehow my ATN knew it was -20 outside and now its doing a reminder breakthrough...but putting these words together takes concentration and thats on the bum too...but I look forward to spring cause then then pain goes(it did last year) and I can emerge from the meds for summer...so I now consider it hibernation...thank god I didnt have much of a life to start with…I feel bad for those who do.

From 15 years of talking to pain patients and their families, I can agree that "survivors guilt" is to some extent involved in many people who disappear from support forums like this one after getting relief from their pain. I suspect that another factor may run even deeper. The levels of pain which TN patients experience are so horrific that they often seem to develop a deep-seated "emotional flinch reflex". They will do anything they can to avoid the pain. Thus people who are successful in obtaining a complete cessation of pain, may avoid even the mention or reminder that the pain can (and does for a substantial number of people) recur. Thus it sometimes seems to me that this pain is "felt" emotionally as if it was a communicable disease. People want to put on a (virtual) face mask to keep it from coming back. So they don't feel drawn to associate with others whose ongoing difficulties remind them of their own former and possible future experience.

We can offer our empathy and concern both to those who feel they must leave, as we do with those who continue to need the support and assistance they receive here. As we do, it may be wise to remind ourselves occasionally that the overall statistics on positive outcomes tend to be noticeably better than we observe in a forum frequented primarily by people who have ongoing pain problems. In medicine, this is sometimes called a "self selection bias."

As one example, there are many papers in the medical literature which demonstrate a 90% probability of significant pain reduction or complete remission for MVD or the RF Rhizotomy procedure, in patients who have Type 1 TN. We won't see numbers that good among a patient population that has the kind of problems we deal with here. Nor should we expect to. But we can and should ask the doctors who treat us, for the specific numbers they have accumulated for comparable patients.

Go in Peace and Power

Red

Richard, you bring up something I have never considered. The “emotional flinch” makes so much sense. I find myself often crying when I read the stories here. I can not help it. I often wonder if I am doing any good here now that I have had a sucessful MVD, but if I can encourage one person to hold on than it is all WORTH IT!