Just venting!

[skamper]

Just frustrated today and need to vent!  I knew everyone here would be understanding and listen.
Another day of work missed due to a headache!  I just seem to keep getting them more and more often.  I'm 6 months post op and I thought I would be doing so much better.
I called the ENT's office today, didn't know where to start.  They took all my info on where my headaches are and what they are like.  They will probably call me back tomorrow and let me know what I should be doing.  I hope they have some answers or at least some suggestions.
I just can't take them, some days they are so bad, I just want to curl up in a ball and cry.  I feel like I'm just not there for my family anymore.  I have more bad days then good days.
I'm just hoping my work understands all of this is part of my recovery and that I don't get punished or fired for missing work.  I've had so many doctors appts and then having to miss work for headaches is starting to really get old.  As anyone else had this problem with work?  Should I get a doctors note for the headaches?
Okay, I just needed to vent a little.  Hopefully will be at work tomorrow, not doing to bad tonight, slept most of the day.
Susan

[yardtick]

Susan,

You just described what my life was for 19 months after my surgery.  What I am about to say is my opinion and you can take it with a grain of salt but read my words carefully.  I understand being afraid of being penalized at work, it happened to me.  I can honestly tell you work is the very least of your issues at the moment.  You need to get your headaches under control.  You need to be the squeaky wheel that gets the grease and insist that the ENT or your family doctor listens to you.  These headaches are very real and very debilitating.  There are many different types of medications that will help with the pain and everyone responds differently to medication, so it may be a slow process finding one that will work for you.

You are on an emotional down ward spiral because of the pain.  Sometimes something has to give, if working and taking care of your family is too much at this point in time while dealing with headaches you need to consider going off on sick leave.  I have been off on disability since April 2008.  I came home from work on a Friday evening, with a massive headache, facial pain and in such a state, I curled up on the couch with my back to my family crying like a baby.  I thought I was handling everything so well but I was deceiving myself.  It took my son Nicholas who was 19 at the time to finally get through to me that I needed help with the pain and I needed to go off of work.  He was crying  along with me while he held me in his arms.  His father had tried countless times to comfort me and support me but it took my son's anguish over me to do something.  I was blaming my lack of coping skills on the prednisone that I was taking for a nasty sinus infection.  Nicholas pointed out my behavior had been "Loopy" for a very long time and he and his three brothers were afraid I might be on a verge of a breakdown.

I made the decision to see my family doctor the Monday and to really tell him what was happening to me.  He put me off first on stress, and as time has gone on and with many medical reports and different doctors I am considered completely disabled.  I started taking anti-depressants which have helped my thinking and has pain relieving properties.  I now take Lyrica and it has helped considerably and I have medication for break through pain.  I still have days that I struggle terribly but I do not have the stress of going to work.  My family needed me but I was too distraught to realise this and to realise I needed them just as much.   I am coping much better now.

I hope my experiences have helped you in some way.  You have to be very proactive with this for you and remember work is the least of your worries until your pain is under control.

Anne Marie

[james e]

Sorry to hear you are not doing well. Which type of surgery did you have? You might see a neurologist about your pain rather than your AN doc. My wife is a drug rep and all she does is work with neurologist in pain clinics regarding headaches. There are some wonderful drugs and non drug treatments for headaches. Call today and get your life back. Your AN doc does ears...neurologist do pain! Call right now!

[Brendalu]

Susan,

I totally agree with what Anne Marie has said, I was and sometimes still am in the same boat.  It took several doctors and lots of "squeaking" and it has been five years since my surgery.  Don't try to go it alone and don't feel like you are weak or that you can handle it.  Work is the least of your worries, believe me.  Good luck and keep us posted.
Hugs,
Brenda

[skamper]

I knew I could count on you guys to help me.  I know my husband worries about me and gets tired of the whining sometimes.  I just needed to vent.  I did get to work today and made it through the day.  Tomorrow may be another story.  The head pain has already come back with a vengence!
Thanks Anne Marie, I do believe in what you are saying and what you have done.  Right now it's a matter of financial issues if I were to try and take the time off or go on disability.  We have a new house my husband designed for us and I can't imagine taking all this away from my family and having to sell it.  It was our dream house and we love our neighbors too 
The ENT's office called back and said these headaches are very normal.  I had the retrosigmoid surgery in April for those that don't know.  Dr. Moore said to continue with my motrin/advil and tylenol.  They said if these meds don't help the pain then he will want to see me.  I have my screw put in on the 27th which is the first time he's back in the office.  Do I try and make an appointment with my neurosurgeon that did the surgery or is a neurologist a totally different doc?  I'm kinda new at this.  I did feel better knowing that the Dr didn't seem concerned, that was my worry, that something was now wrong.  They made it sound like it's a healing process with the titanium plate and all that is in there.  That's where it hurts the most, over the incision site and up the back of my head.
I will continue to ask questions and see what I can find out.  Please let me know about the neuro doc's,  I'm confused.
Thanks all for listening and giving me support.
Love to all,
Susan

[mandy721]

Susan,
I am sorry to hear that you are having such horrible headaches. My husband, who had retrosigmoid in Aug 2009, wakes up with a headache everyday and begins  the day with an analgesic cocktail.  Ken learned that  headaches are one of the complications of the retrosigmoid approach when researching after he was diagnosed.  This was one of the possible complications that he was most concerned about and  he ended up with the headaches.  Some days are horrible, others are bearable.  I think that there are a number of people here on the board who suffer from headaches as a result of retrosigmoid.  Ken is now 15 months out and there hasn't been any improvement with the frequency or severity of the headaches.  He  has discussed this with both  the neurosurgeon and neurotologist;  the neurosurgeon takes the lead in dealing with the headaches. To be honest, the doctor saying that  headaches are part of the healing process  seems a bit disingeneous.  Headaches are a complication of this surgery.  I hope the doctors are able to help and that the headaches go away, but if  they persist,  ask for a referral to a pain management specialist.   

[james e]

A neuro surgeon's primary concern during your surgery was the removal of the tumor from your brain...he/she is a brain guy. A neurologist is not a brain surgeon...he/she is a nerve guy. I am not a doctor, but my experience is as follows...if my plumbing is leaking, call a plumber, not an electrician. Don't let my parrot fly your plane...he can fly, but get a real pilot who has some training in the field. Don't get your dentist to to cut your hair. Don't let a brain surgeon deal with your headaches, call a neurologist. There are lots of neurologist that deal with pain, some specialize in headaches, not just the type of headaches you get from stress or just a bad day, or loud noisy kids. My wife was feeling great last night because one of the doctors she calls on was bragging about one of his staff uses the drug she sells, and was not missing work any more. It is actually an old drug, but has a new delivery system that works in 10 minutes, not 2 hours, and people can stay at work. This drug is not for you, but there are great pain blockers out there. Don't call the plumber, call a neurologist! There might be a solution to your problems if you see a PAIN SPECIALIST!

[Syl]

I, too, suffer from post-surgical headaches. I used to wake up almost daily with headaches. then I went to a neurologist who prescribed Pamelor (nortrytilenen). The drugs made me very tired & I was dragging myself around all the time, but it did help. The headaches are less frequent & not as intense. After almost a year of taking Pamelor I stopped taking it at the risk that the intensity & frequency of the pain would return. But that didn't happen. I still have some bad days where the entire day is spent nursing my headache. Sometimes I still have entire bad weeks with more headaches than usual. This week is one of those.

Overall, there has been improvement. Even at almost 2.5 yrs post-op I continue to notice improvements. My body is getting stronger. I can do more physical activities without getting headaches. I havent' missed a day of work in about 6 months. I was missing many days at work every few weeks.

I still keep my heating pad handy. I used to use it every day when I got a headache. It works wonders.
I still ice my neck every night before bed. The ice pack goes on for 5 min, then off for 5 mins. I do this for an hour. It relaxes the neck & that's very helpful. However, it doesn't help when I have a headache. The cold makes it worse.

Good luck

Syl

[GramaSuby]

Hi Susan, first, thank you for your last post on 'Update on Gramasuby' You are always a comfort Second, so sorry to hear of the headaches & how bad they are I'm still having them post-op 20 days. They happen instantly & are like a sudden explosion. 
I can only tell you that I emphasize & wish it weren't so. You are in my thoughts & prayers though.  Sue

[jazzfunkanne]

I hope you didnt return to work too soon what is your job, i never returned to work i knew it would be stressful and i would be off every other week i didnt think it was worth it, plus i had kids too think about, we cant do it all x

[Lizard]

I'm so sorry you are suffering from headaches, I feel your pain.  I don't want to go into my story, but I was right there with you for 17 months after my surgery.  I moved from Dr to Dr until I found one who was a neurologist who specializes in headaches.  We did lots of experiments with medications, but have found things that help control the pain.  To be honest, I was having a hard time coping and was severely depressed, but thanks to this forum and the advice I've received here I finally have some relief and am functioning at 90% ish.  I still have some breakthrough headaches, but they are being managed.  Just know there is hope and medications that can help you, its just a matter of finding the right doctor.  Hang in there, stay strong and remember that we are here for you.
Feel free to PM me if you would like more details on my treatment and whatnot, head pain is the pits, but it doesn't have to control your life!

Take care,
Liz

Oh and one other thing, be your own advocate, if the Dr you first see doesn't take you seriously go elsewhere...don't wait until the next appointment to see if its better than the last, kick em to the curb and find another practice.  This is the biggest lesson I've learned with regards to headache treatment!

[skamper]

Thanks everyone for your help.

I took the advice of calling the neurosurgeon.  I got a call back yesterday, he wants to do an MRI again.  Since my last one was in July with no headaches or any pain, he needs to look again.  I'm somewhat scared now.  Why an MRI so soon?  What would he be looking for and why didn't they just want to see me first?  I know I'm probably reading too much into this, I just really hate the MRI's.  I take drugs just to get through them and to have to do it again, kinds sucks!

I had another horrible bout with pain last night.  It hit me like a ton of bricks, started at 8:30 right after getting home from dinner.  I know I had a busy week and never got in a nap, that really shouldn't make my head hurt that bad.  I tried heat for about an hour, nothing.  At about 10:00 I switched to ice and took a pain med and finally just fell asleep.  I couldn't move my head any directions, every movement I made it got worse.  They hurt so bad, I just want to curl up in a ball and just cry.

Does anyone know what they might be looking for with this MRI?  Again, I'm only 6 months post op and the pain started about a month ago.  Hurts mostly over the actually surgical site and down my neck.  Sometimes shooting pain across the forehead when it gets to the maxium pain level.

Thanks everyone, on the bright side, I get my screw in on Wed.  I can't wait.
Susan

[Jim Scott]

Susan ~

I agree with Donnalynn that your doctor is just being cautious and ordering the MRI for exploratory purposes in an effort to rule out possible sources for your pain.  Although re-growth is always the '800 pound gorilla in the middle of the room' (translation: our biggest fear, but one that we avoid talking about) I doubt your pain is directly due to re-growth - but only the MRI can prove that, as I trust it will.

Jim

[skamper]

Thanks Jim and Donnalynn, I'm just always a little curious when it comes to ordering another MRI so close to the last one.  I just wish a simple doctors appt would have been good enough.  I'm sure he's just being cautious like you both said.
Today hasn't been too bad, an occiasional head pounding here and there, nothing too major.
Here's to hoping that keeps up that way.
I will keep you posted about my MRI and what the doc says.
Thanks,
Susan

[cecile k]

Hi Susan:

I wouldn't worry too much about the doc ordering an MRI....this situation also happened to me and everything was 'normal' whatever normal is with pounding out of control headaches! Headaches were very much a part of my life for years but the severity of them certainly became less which each passing year (I'm now nearly nine years post op). What helped me the most was seeing a physiotherapist that specialized in headaches. She was fantastic and worked with maneuvering my head in various positions to try and relieve the pain, and giving me specific exercises to do.  I was able to reduce the amount of medication I was taking. Having said that, though, my head has never felt great but I cope. I do not work outside the home but am plenty busy at home (we have five boys) with baking bread, gardening, laundry, volunteering etc. I would not be able to hold a job outside the home because it would be too stressful for my head. I need to rest or lie down fairly often.

When did your headaches start? I also had the retrosigmoid approach and headaches started approximately three weeks after surgery....I find it very strange that I had no headache issues whatsoever the two weeks in hospital and first week at home. It was the headaches that really wore me down and slowed the recovery a lot.