Veteran AN patient needs support

[margaret44]

Hello.  I am new here.  I had AN surgery in June of 1997.  I have never been the same since that time.  I get constant headaches and the fatigue is still overwhelming at times.  My facial nerve is still not all there and my left eye is always dry.  I also cannot hear at all in my left ear and my right ear is VERY sensitive.  I am bummed tonight.  Any love out there?  LOL.  I am just wishing so much that I never had the surgery...  But then again, I would be dead if I had not had surgery.  Despite my dull mood tonight, I am forever grateful.

[Mei Mei]

I am sorry to hear you are so sad, but glad you found us.  Surely you must be able to find some help for your Post Operative headaches in all this time.   We have an Eye Forum for your Dry eye problems too.  Please Private Message us and let us know how we can help you .   Where do you live?   Did you get the referrals to follow up after your surgery?

Thank you for writing....

Mei  Mei

[kma]

The sneezes and coughing are the worst!  Ugh.  My headaches are worse than ever and with all the crazy weather changes....I think it just makes the pressure in my head all the more intense.  I am scheduled for Botox injections on August 3rd.  My worry is that they won't find the right spot and it will have been a waste of time....and money.  My doctor doesn't seem to interested in my concerns.
I love how easily they say that it's just "one of those things" that come with the surgery and that it may or may not be a forever thing.  Easy for them to say ~ doesn't cause them any pain!  Thank goodness for my prescription Alleve and my Tylenol.  ~Kathy

[Lizard]

Hi out there, sending you some love : )  Margaret welcome to the forum.  Do some searches on headaches and see what you come up with.  I'm 21 months post-op and I'm not going to lie its been a tough time, but I've been able to get some great information from searching and speaking to some other "headachers" out there, especially Capt Deb, who is the resident headache expert.  Before I found the forum I was a mess literally brain wreck pain every single day.  Here are a few things I've learned from my experience:
Be your own advocate.

Find a Dr that is involved in your care, and you will see many before you find the right one.

There is a treatment or treatments out there that will help you, its just a matter of which one.  Our AN's were all different, our experiences were all different and so our care needs to be tailored to our various deficits.

Attitude is everything. 

I don't think anyone should have to go 13 years with daily headaches and I wasn't willing to go 13 months, so I took my care into my own hands and began bringing my Dr research and information from the forum that worked for other people.  We've tried many options, but the one thing that worked for me was an occipital nerve block administered by an anesthesiologist...but that may not work for you, or Kathy the Botox may not work this time, but if you go for a second round the may get the right spots?  It also takes time to see the affects and the treatments compound on eachother to create greater relief over time.

Hang in there and please PM or Email me if you want to bounce anything off of me.
Take care,
Liz

[Jim Scott]

Hi, and welcome, Margaret ~

I'm dismayed to read that you've been suffering with post-op headaches as well as fatigue, some facial nerve deficits and unilateral dry eye for 13 years.  No wonder you're a bit despondent.  Who wouldn't be?  I wonder what you've done to find relief for at least some of these post-op complications.  I'm not a headache sufferer but my wife has quite a few pain issues due to multiple spinal surgeries and Fibromyalgia.   She takes several (non-narcotic) medications and is monitored by a Physiatrist (pain management physician).  While all of your pain issues may not be easily eradicated, I'm sure even a 50% reduction in your headaches would be seen as a blessing.  Unfortunately, I cannot offer you any slam-dunk solutions here.  Just my understanding, hope and prayers that you can seek and find some level of relief for your pain.  Meanwhile, try to stay strong and know that (a) you're not alone and, (b) we care about you.  Think of the folks posting here as family.  Our 'door' is always open (24/7) and you'll always be welcome. 

Jim    

[ombrerose4]

Hi Margaret,
Sorry to hear agout your 13 years with post op headaches. I am 10 months post op with chronic headaches. Every time I get rid of them in one location they pop up in another. After having Botox injections in my facial and temporal  muscles, those headaches have been 85% better. Unfortunately, my back of neck headaches are excruciating, they travel from my neck up to top of my head. If I don't catch them in time they refer pain to my face, like right now. I agree it can be very discouraging, but thank goodness for this wonderful forum. The people, information and the caring you get here can make a real difference in being able to cope with the pain. On Thursday I will be getting Botox in my neck muscles and back of my head. I hope they will be as successful as the facial injections. If not I will be checking out nerve blocks. I wish you luck and perseverance in finding a headache free world. I hope we will all be pain free very soon.

[Jenn K]

Hello, I have also have headaches, post-op for the last 2 years. I mentioned it to both the otolaragnist(sp) and my occuplasics (sp) drs. No answers! Nothing is working for me. Someone thought maybe the lack of oxygen. I thought that was a good idea, because since the surgery, my left nostril seems collapsed/crushed and hard to breathe. The 8th of Nov. I see a neuro-optomologist. I hope they have answers.

Thanks,
Stormy1102

[Lizard]

Stormy, Please let us know what the Dr's say.  As a fellow headache sufferer its always good to see what techniques others are trying.
Good luck to you,
Liz

[Mei Mei]

Yes, Margaret and Stormy, please keep us updated on what your doctors say.  We work as a team.
My surgeons didn't have anything to offer me so I went searching on my own for a solution.   Still haven't found one, but don't want to continue these train wrecks for years.
I've tried several drugs and none of them worked.   My neurologist on my visit last week called a pain doctor and he got me squeezed into the schedule for the Operating Room to do the nerve block under sedation.   My last three blocks didn't work.   My doctor said if this works it would be an indication to have the scar neuroma surgery with Dr. Ducic.   We'll see.

Hope you're feeling better.

Mei Mei

[Captain Deb]

So many surgeons out there have no training in pain management.  It is not their specialty.  The tough thing is that there are about 15 different causes of post-AN surgery headaches and no way of knowing which of these factors are causing your particular headache pattern.  In the past 8 years I've seen a neurologist and a headache specialist and am now moving on to a doc who specializes in pain management.  Will probably end up with some sort of nerve ablation/rhizotomy in my neck or occipital area since that is where my pain seems to originate.  Meds have been of little use to me--I've had much better luck with nerve blocks and Botox.

Capt Deb

[Lizard]

Capt,
Well put, I also have tried a variety of treatments and medications and have found the nerve blocks to be the most successful.  I am now looking into scar revision, I have an appointment with a plastic surgeon next week.  I will update when I know more.
There's always a treatment out there its just trial and error until we find something that works for our individual pain 
Liz

[Mei Mei]

I agree.   They should have some training in pain management as that must be part of their followup.   I am scheduled on Nov 23 for a nerve block to be done in the OR and the doctor said if that works, it would be an indication for seeing Dr. Ducic at Georgetown for the scarring.

Mei Mei

[Kathleen_Mc]

Margaret: I know exactly how you feel.
My 20th anniversary  just pasted the other day.
I continue to have head pain daily, just to remind me the scars are  there, nothing major, and then about 3-4 times a month I get a major headaches that will last for a few days. The only thing that has helped this over the years is to go to bed and stay there until it's gone......can't do that as a full time nurse and Mom so I walk around with these massive headaches. I've been tried on several things to no avail......with the exception of taking narcotic medications and when I take them I can't function so that's out!
I continue to have dry eye.....sick of drops and goop!
My face is not as bad as it was....after a few "plastic repairs" but it's still not the same and I hate to look at pictures taken of me!
I have developed ringing in my good ear, believed  to be sympathy for the bad ear......can't get to sleep often 'cause of the noise! (an the continued worry that maybe they missed something on the MRI they did to make sure it wasn't another AN in the good ear).
My teeth on the AN side are suffering from the inner cheek being against them all the time, the teeth on the non AN side are wearing from only chewing on that side (if I chew on the AN side I choke) and also from grinding my teeth......go figure I get anxious and grind my teeth in my sleep.
Then there's the chemical depression/anxiety I got from having had "brain surgery" mixed with PTSD over the whole thing (I was very ill, not sure I would live to get off the OR table, awake while on life support, you know all that fun stuff).
And still I carry on, raising two kids in 50/50 custody with their father and working full time as a nurse!
Oh yeah did I forget having a regrowth! Wonderful!
Just my rant and yeah.....I HEAR YA GIRL!
Kathleen

[Mei Mei]

My heart goes out to both of you.   It's a horrific ordeal to go through and I'm so sorry you had your life change so drastically.   I feel the same way and I'm only 10 months out.  Life will never be the same.  It's a life altering event.  With all there is in medical science, there seems little they are doing to help or prevent all this from happening in the first place once you get the diagnosis.   I, too grind my teeth day and night as much as I try to stop it when I realize I'm doing it;  when I don't pay attention, it starts again and my tongue sticks to the roof of my mouth.   The whole body gets tensed up and I wish I could relax somewhat but there's no escaping it.

I wish I could make it better for all of us.   Please continue to write as we are here for each other and understand.

Mei Mei

[Brendalu]

Lots of love, Margaret and positive thoughts and prayers.  Vent away and we will be here to listen.

Also sending cyber hugs,
Brenda