It's starting again

[ombrerose4]

I am 25 mos post op and returned to work 2 months ago for the first time since surgery after going through many months of facial pain and headaches. The past three days I have started having headaches and facial pain again, along with the painful raw feeling on my AN side of my tongue that was my only original symptom of having an AN. Right now I am ready to cut my tongue off, it hurts so bad. I know there are others on the forum who have this same tongue issue and I just need a small pity party to help me through this rough patch. I am sure the stress of a full time job is at the root of all of this, but I am trying to stay positive. Hopefully the facial pain, which I believe is being triggered by the tongue pain, and these recent headaches are just temporary and not a setback. I forgot how debilitating the pain can be and how easy it is to start loading myself up on Motrin again. Thanks for listening:)

[Jim Scott]

Hi, Lauren ~

I'm sorry to learn about your post-op issues being revived.  I suspect that your return to work and the attendant stress is the cause of the flare-up and I agree with your analysis that the pain will be temporary.  Please know that you'll be in the thoughts and prayers of many as you struggle with this latest challenge.   

Jim

[CHD63]

Lauren .....

Not fair ..... absolutely not fair!  I have no suggestions, but I certainly would not remain in such agony very long before calling my doctor.  It may be from stress, but it may not be either.  The problem is discerning the difference between the two.

Many prayers.

Clarice

[Rivergirl]

I am convinced we all have a burden to carry with these dam AN's either if they are still there or removed.........dam stressful and we all experience such different things, it is amazing what a wide range it affects.  That tongue thing sounds very painful.....so sorry you have to deal with that......I hear you on the headaches....in plain english, they suck.  Hope it is just a temporary thing for you.

[Denise S]

Hi Lauren, I was actually thinking of you when I came on the forum today.  I was wondering if things have lessened up for you since we 'chatted' last right after you returned to work.  Well, this is NOT the news I was looking for     I so agree with Clarice....it is just not fair!!   

Pain is just something that is SO hard to understand (and that includes headaches)!!   Remember to be taking something for your stomach if taking much motrin!   I sure hope it will start to get better soon.   Maybe it was just a 'getting back into a routine'......??    We can hope, right!!??

Do you think the odd fall weather you New Yorkers and us Michiganers have may be impacting the headaches a lot?
I recommend trying some to the injections again (not as time consuming as PT) and might hopefully help..

Thinking of you,
Denise (MI)

[ombrerose4]

Denise,

I actually made an appt for this Monday for Botox and triggerpoint injections. Hopefully that will stop these headaches in their tracks. I am sure that the stress of this full time job and my responsibilities as a RN are adding to my stress level. And I'm sure the weather changes are not helping. My eye on my AN side is also acting up- extremely dry and irritated- I have an eye dr appt next Friday. Hoping for some relief, but I have been using so many different drops and I only get relief for a few minutes.
How are you feeling? I hope you are feeling better. And thanks for the reminder about my stomach, I have not been taking care of it and it's not happy with me

Thanks for your concern:)

[G_Man]

Lauren
    I am sorry to hear that you are having trouble again.  I hope your appointment works out this week.  You are one of the people who give me the ability to be strong in dealing with my AN.  I appreciate your for all you do for us/we New Yorkers. 
Glen

[ombrerose4]

Glen,

Thanks for being one of my listening buddies! Actually you inspire me with all that you have been through.  I am glad I am able to give back to others with putting together these support group meetings. I will let you know how it goes tomorrow with my Botox and trigger point injections. How easily we take for granted those pain free days:)

[cherrypiper]

Well i am coming up on 4 yrs post op in a few weeks. the good news is the intense pain went away for me rather soon, like maybe a year or so.

The bad news is my facial paralysis is pretty well "set in" as my GP calls it. And flare ups of pain do occur for me usually weather or allergy related.

But for dang sure , i'd go see your GP and ask. While my tongue on my AN side is relatively numb as is most of that sides face, the stuff like sinuses etc sure arent.

Hang in there...........

[ombrerose4]

Had my Botox injections today, hope they kick in soon.

[jenklear]

When you speak of tongue pain, can you ellaborate? I have tongue issues too and never really heard this before. I'm curious.

[Denise S]

Hope those injections are kicking in FAST!   

I am doing much better.   I go for a cervical epidural in my upper neck in 2 weeks and hopefully that will help a lot.   I was bummed because my 2nd round of botox didn't work hardly at all, whereas the 1st round was great.   It's just a GAME for some of us LOL

My eye has been really extra dry just the past 2 weeks.  I should start using ointment of gel again at night because I too use a variety of drops and they don't last at all hardly.   I think it is weather, things get drier this time of year for us Michiganders & you New Yorkers 
Keep us posted! 
Denise

[ombrerose4]

Denise,

Glad you are doing better, and wish you luck with your cervical block. I was just referred to a new eye dr. from one of the members of my NY support group. I am going to see him to address dryness and visual acuity issues. I know the dry air does not help, but that's kind of hard now that I am working as a visiting nurse and I am outside quite alot. I don't know what I am going to do when it becomes real cold out (then my eye feels like it's going to crack). Have a healthy, happy Thanksgiving.

[ombrerose4]

jenklear,

My tongue pain was my only sign and symptom when I was first diagnosed with my AN. After surgery, the pain, which feels like someone scraped my tongue with a knife, disappeared for a few months. Since then it comes and goes randomly> many days I have no pain at all, then I will get pain for a few days in a row. It is only on AN side of tongue. I never wake up with the pain, it comes on during the day and by bedtime is often very intense. Then it disappears when I am sleeping. Doctors' explanation is that the nerves involved are misfiring because they are damaged from surgery. No one knows if it is temporary or permanent.

[Denise S]

Denise,

Glad you are doing better, and wish you luck with your cervical block. I was just referred to a new eye dr. from one of the members of my NY support group. I am going to see him to address dryness and visual acuity issues. I know the dry air does not help, but that's kind of hard now that I am working as a visiting nurse and I am outside quite alot. I don't know what I am going to do when it becomes real cold out (then my eye feels like it's going to crack). Have a healthy, happy Thanksgiving.

Ahhh, you'll just have to be wearing goggles when you go out.hahaha You know, to keep the air from getting in and drying the eyes out more!!
Let me know how it goes at your new eye dr. appt.    I was on Restasis for a while, and had a little lump on one eye lid.  Well, after reading about it on here found out that Lori W. had same thing and when she quit those drops it went away.  So, I quit and sure enough.....it went away.   Hmmmm, so never started again and haven't been back to eye dr. 

Hope you TOO have a Happy & Healthy Thanksgiving!!
Denise