I have to go back tomorrow 10 days after placement of peripheral nerve stimulator. I don’t have FMLA because I haven’t worked enough hours this year to qualify. The hospital said I would still have a job for 6 months but, I would loose the specific position I previously had. I have worked in the pediatric intensive care unit for 12 years…it just kills me to think of Loosing that! I had taken a leave of absence for year in 2010, when I had the MVD, then went back part time. I am scared to death of working with pain. I have done it so many times and it is mentally and physically exhausting, not to mention my memory is terrible because of all the meds. The stimulator is still very new and I don’t have good pain control from it. My face is super sensitive and the battery site and where the big wire goes down my neck is so sore. I am a fighter if anyone has seen some of my posts. I fought pain and trained and ran the 5mile race to save face in July. I just don’t know if I can continue to fight pain everyday and work…so where would that put me? Feel like I’m holding on to my livelihood by a thread!!
I feel your pain. I left my job in the medical field because of the pain and the side effects of the meds. I unfortunately almost made a mistake that could have cost a patient's life because I was so out of it from pain. That was the last day I went to work. It's been 7 years. But I can't wait to be able to go back. I wish you the best with all my heart. I truly know how you feel.
I believe in you Lisa. It is good for me to hear this. I have pleurisy right now and...your words are inspiring to me. I hope all goes well when you get back to work. :)
May I ask what pain meds you are both on? I just started meds for TN and am taking 1200 mg/day. For now it is working unless I am in a remissive state. How would I know? I am afraid to go off the gabapentin to see! I have been pain free for a week come tomorrow morning, when I experienced my last shock/etc. last Sat. Morning. Thinking my new meds kicked in afer 10 days of increasing dose, first time I have ever needed meds in my life and I am 53, Just giving in to taking meds was depressing for me. I teach and know what you are saying. I had such a hard time the first 10 days of school with this pain coming whenever it wanted. I was afraid to talk or smile, etc. to bring on pain. What would i do in the middle of teaching a class? conferencing with my kids?? Met with principal and school nurse, and now we have a plan. Could you tell me more obout when your TN started and how it progressed? So sad for your job situation. I know what you mean. I will say a prayer for all my TN fellow friends and friends I haven't met! God Bless!
Hi Janice…I was diagnosed in 2007 with TN 2 I have a underlying.g pressure, burning, gnawing pain and then electrical pains on top of that. I have been on just about every med I think…increasing and increasing til it is max dose and the pain gets unbearable then add another or switch to another. I had an unsuccessful MVD in 2010…it was mentally the hardest thing I have gone through…thinking I was going to have pain relief and it never came. An artery and a vein were found to be compressing the nerve. Since then I have tried multiple types of nerve blocks that haven’t lasted. We decided my only other option was a peripheral nerve stimulator or a cortex nerve stimulator. I just couldn’t go through another big brain surgery so I went with a pns, placed about a year ago. It worked wonderful for v1 but, I had absolutely no coverage in v2 so I have had to continue to take meds. I was in the best time I have had since diagnosis when I noticed the battery was actually wearing a hole through the skin maybe due to the movement from running. Anyway, the tissue became black and nectrotic and a bad infection set in. It started leaking pus…so not good. The whole system was removed the end of July and I was on iv antibiotics for 2 weeks then oral antibiotics to clear the infection. The pns was replaced Sept.10…so now the nerve is very agitated!! I have been off since the removal in July. It’s been a daily fight for me…I’m exhausted!!
Lisa26 said:
I currently take trileptal 1800mg, baclofen 40mg, amytripyline 20mg, and cymbalta 60mg.Hi Janice..I was diagnosed in 2007 with TN 2 I have a underlying pressure, burning, gnawing pain and then electrical pains on top of that. I have been on just about every med I think..increasing and increasing til it is max dose and the pain gets unbearable then add another or switch to another. I had an unsuccessful MVD in 2010..it was mentally the hardest thing I have gone through..thinking I was going to have pain relief and it never came. An artery and a vein were found to be compressing the nerve. Since then I have tried multiple types of nerve blocks that haven't lasted. We decided my only other option was a peripheral nerve stimulator or a cortex nerve stimulator. I just couldn't go through another big brain surgery so I went with a pns, placed about a year ago. It worked wonderful for v1 but, I had absolutely no coverage in v2 so I have had to continue to take meds. I was in the best time I have had since diagnosis when I noticed the battery was actually wearing a hole through the skin maybe due to the movement from running. Anyway, the tissue became black and nectrotic and a bad infection set in. It started leaking pus..so not good. The whole system was removed the end of July and I was on iv antibiotics for 2 weeks then oral antibiotics to clear the infection. The pns was replaced Sept.10..so now the nerve is very agitated!! I have been off since the removal in July. It's been a daily fight for me..I'm exhausted!!
Positive thoughts as you head back to work Lisa!
Take it one moment at a time and do your best, that’s all you can do.
(((hugs))
Lisa,
You can do this. Already you have overcome so much. I know it is scary at work and worrying when or if the pain is going to hit you. Take your time don’t stress and ask for help when needed. If you need to find a way to relax at work. I’ll take a five minutes and stop everything mediate and work thru pain most of the time (although this week was more difficult and well that’s another story). Just take it one minute at a time. Try not to get worked up about the thought of pain at work. I know it is a tiresome battle to fight thru the pain. My point is you CAN do this, you have been inspiration to so many of us with your training for the run. We’re all rooting for you.
Lisa26 said:
Hi Janice..I was diagnosed in 2007 with TN 2 I have a underlying.g pressure, burning, gnawing pain and then electrical pains on top of that. I have been on just about every med I think..increasing and increasing til it is max dose and the pain gets unbearable then add another or switch to another. I had an unsuccessful MVD in 2010..it was mentally the hardest thing I have gone through..thinking I was going to have pain relief and it never came. An artery and a vein were found to be compressing the nerve. Since then I have tried multiple types of nerve blocks that haven't lasted. We decided my only other option was a peripheral nerve stimulator or a cortex nerve stimulator. I just couldn't go through another big brain surgery so I went with a pns, placed about a year ago. It worked wonderful for v1 but, I had absolutely no coverage in v2 so I have had to continue to take meds. I was in the best time I have had since diagnosis when I noticed the battery was actually wearing a hole through the skin maybe due to the movement from running. Anyway, the tissue became black and nectrotic and a bad infection set in. It started leaking pus..so not good. The whole system was removed the end of July and I was on iv antibiotics for 2 weeks then oral antibiotics to clear the infection. The pns was replaced Sept.10..so now the nerve is very agitated!! I have been off since the removal in July. It's been a daily fight for me..I'm exhausted!!
We are all thinking of you and hoping that the stimulator brings you some great relief very soon.
Damn Lisa you are tough. I don't even feel worthy of giving you advice on how to deal with pain at work, you've been through so much more. Whatever capacity you can function at in your job, it sounds like you need to be there and they need you too. I am cheering for you for being so brave and not giving up.
Awe, You all are so awesome!! Colleen your post made me cry. Sometimes I don’t feel tough but, I am a fighter!! I try not to let myself have more than one down day…I do give myself one every once in awhile. I guess I am still grieving about all of this sometimes. I think the wheel of emotions turn for me. I MADE IT THROUGH MY FIRST SHIFT!! there were so many supportive friends there, it was awesome!! They wouldn’t let me lift at all!! Thank God!! I work again tonight. I am exhausted and in pain but, I just didn’t look at the clock…I was really busy and that helped. I took a few “bathroom” breaks and got myself together. I hope it gets easier!! Again thank you all for your support!! There isn’t anyone else who understands my pain better!!
YOU are awesome Lisa!!!!
Awe…thanks Min!! U are too!!
Lisa, I wrote you a response a few days ago, then when I was finished I hit something on my computer and deleted it! Uggh! So I didn't retype it all! Hoping your return to work is going well, and most of all your relief from the pain! I wish I could get to know you and all the people on here who have suffered from this disease. It is such a crazy thing and so unheard of by people. I am thankful today that my meds are working well, very little breakthrough pain on 1200 mg of gabapentin. But still thinking surgery to get the job done before I retire in less than 2 years! So want to hear everyone's story. Are you on any group on fb? I recently joined one. Just want to gain any info as well to help me choose a great doctor to do the surgery, and most recent surgeries. Hoping they become less invasive! God Bless you each and every day! Janice