New to Board - At the end of my rope!

[CindyS]

Hi everyone! My name is Cindy and this is my first time posting to this board.  I am literally sitting here in tears as i type.  My AN surgery was Jan 2008.  Surgery went well but was hospitalized in Feb for 10 more days due to fluid leak.  After that I was sent home to "heal and get back to normal".  Normal???  What is normal after AN?  I am a 42 year old mother of 2 girls (ages 14 & 19) but I feel soooo much older now.  I have chronic pain in the back of my head along the incision sight. At its worst, it moves all over my head, down my neck and into my face. To touch my right ear, it feels like a raw open sore. The Dr. says its nerve pain and to give it a year. the only medicine that I can take and still function half way as a human being is Goody's powder. (I live in NC and it's a southern thing ) I currently take 3 to 4 a day.  I feel like such a whimp and a total loser when it comes to my husband and girls.  Evidently AN is much more serious than was explained to us.  I was basically told I had a "lesion" that affected my hearing that needed to be removed. (Only after researching the internet did I realize that AN is an actual brain tumor!!!)  Not that big of a deal, would probably lose my hearing and maybe have facial nerve damage. Thank goodness it did not affect the facial nerve.  I do have total hearing loss in my right ear.  Everyone says "oh you were so forunate"  and while I agree, they do not understand the constant pain I am in 24/7.  What I would give for 1 minute of my life BEFORE surgery! I know its been 5 months and people just expect me to be back to normal.  They just don't get it.  Will I ever be normal??? Oh and I ONLY loss my hearing??  Yeah I have one good ear and speaking one on one to someone is fine but put me in a crowd and I literally go insane!!!! I know this is going to take time but I dont think my family understands and I feel like a total failure - especially as a mom - I just can't do the things I use to do.  Just cleaning the house brings on tremendous pain.  I never feel "good".  My outlook was very positive the first couple of months but I can honestly say I'm going down fast.  Everyone just thinks "oh she's better" .  I know my family gets tired of hearing "my head hurts" so I mostly try to keep it to myself.  But I am human.  I guess my main question is:  Will life ever be "normal" again?? And secondly how did you handle the family thing??  Any advice would be greatly appreciated!!

[leapyrtwins]

Hi, Cindy -

I am SO glad you found this board.  You've come to a great place for support - there are a lot of people here who can understand what you are going through.

First and foremost, do NOT feel like you are a failure, a wimp, or a loser.  You had an acoustic neuroma and you had brain surgery - while neither of these "events" is the end of the world, they aren't minor things and it takes a while to get back on your feet.  Please cut yourself some slack 

The pain you are having sounds horrendous - I'm sorry you have to go through this.  One of our fellow forumites, Capt. Deb, recently had a nerve block that sounds like it's working wonders for her.  Here is the link to her post  http://anausa.org/forum/index.php?topic=6709.msg67021#msg67021  Perhaps you could ask your doctor if a nerve block would work for you.  It's worth a try.

Also, as far as the SSD (single-sided deafness) goes - there are options to help you hear better - specifically the Transear and the BAHA.  They won't make you hear like you used to, but they are good alternatives.  There are many posts on this forum about both these options - just use the search function to find them.  I personally have a BAHA and have found it very helpful.  If you want to ask me anything, please don't hesitate.  If you'd rather not ask in the "open forum", you can PM me.  I'm not shy and will tell you just about anything you want to know 

You ask if life will ever be "normal" again.  Most of us find that life is normal, but sometimes it's a new "normal".  By that I mean life might not be exactly what it was before your treatment, but it's definitely worth living. 

Please know that you are more than welcome to come here and vent, offer advice, share your experience, ask questions, etc.  We are all here for you and will support you in any way that we can.

I'm sure that very soon lots of others will reply to this post. 

Please don't get discouraged; keep the faith.

Jan

[Larry]

Cindy,

I empathise with you, like Deb, I have had chronic headaches since my surgery almost 6 years ago. I have seen a raft of specialists, pain clinics etc and the best relief i get is through a drug called neurontin. Its a nerve pain suppressant.

For the most part, my headaches are low level but a few times a week they are quite nasty.

A number of posties have had rotten headaches and have got better - everyone is different.

Options are a plenty - you have pain clinics, various drugs such as anti inflamatories bought over the counter to drugs like neurontin. Read the posts in the headache thread and you'll pick up a theme of options that you can proceed with.

help is available so don't despair even though you are in extreme pain - make sure your family reads some of our posts and they will understand that others experience this and that family support is vital - Sorry, wasn't saying that you don't have family support, just re-inforcing it's importance.

Laz

[Janet]

Hi Cindy,

I know what you are going through because I've been there. It is hard to imagine how severe the pain can be and how exhausting it is.  I felt so alone until I discovered this forum, despite a large supportive family. I remember sobbing when I first read a post that described the head pain I was suffering.

It sounds like you have nerve entrapment which causes severe pain. A nerve block by can help determine which nerve is entraped. The good news is that the nerves that cause this pain are outside your skull and an easy fix by someone that knows what they are doing. The bad news is there doesn't seem to be many doctors who have an expertise in peripheral nerve surgery.

After 4 years of pain like you described, various medications, Botox injections, treatment and lots of research, I decided to have surgery for a cure rather than daily temporary treatment. It worked. Dr Ducic of Georgetown University is the only doctor I found who could give me a diagnosis and offer a solution. I flew from Seattle to DC. It was worth it. It is outpatient and no big deal.

At the very least, go to a headache neurologist or a pain clinic. Captain Deb lives in your region and can help direct you.

Hang in there. This can be fixed.
Janet

[Omaschwannoma]

The feelings of "going insane" when out in a crowd, mall, grocery story or wide open space were the same for me (probably most here).  This is due to sensory overload.  There is so much for your eyes to take in and for the brain to process all of what you see when in these environments.  Good news is you will get a handle on moments like these, it takes more time for your healing, five months is still early.  Cleaning house causes us to "look down" alot and this will stretch neck muscles, the constant head motion involving neck and occipital muscles we put them through by looking down, up, head turning, looking up, unconcious tightening of jaw and tongue muscles, etc. puts a strain on nerves.  You are also challenging your eyes that have alot to do with balance and then you get sensory overload bringing on headache, pinched nerves due to tight muscles, etc.  It MIGHT help to be more concious of these muscle groups throughout the day so you can self massage them into relaxation, or just take five or more minutes to sit and close your eyes (shutting down the sensory overload) bringing on relaxation to the head and neck muscles (propping my head on pillow when I sat facilitated neck relaxation).  I spent a good part of my healing days with eyes closed here and there so I could function (not with the same energy as the "old" me) with less strain.  I also remember running my fingers up and down alongside the incision, cross-fiber frictioning on the incision and occiput area to keep down the scar tissue as much as possible helping also to keep those muscles as relaxed as possible.  Self massaging my scalp helped too, along with meds, I took over-the-counter to assist in times of "big" pain. 

I wonder if you got the ANA package?  This will help in educating your husband, family members into all that we go through, plus sometimes it's just hard to find the "right" words to explain.  Please know you will improve, now perhaps not back to the way you used to be, but you will keep moving forward from where you are today, tomorrow and the next.  Just need to rest for short periods of time more than you did before.  AND, to heck with what other people think of you, time to put your arms around yourself for comfort because others cannot possibly know all you are going through, showing up here every now and then helps too. 

[sabuck]

Cindy,

I too think that the surgeon downplayed the true effects of the AN surgery for me. The reason that I think he did is because you do eventually get better. We all feel and understand your frustration. I was getting so fed up with the severe headaches day in and day out. I went to bed with a headache and woke up with one. For me this when on for about four months. I can't imagine those type of headaches for 6 years. For a few days post-op I had double vision, couldn't stand or walk and couldn't eat without spewing.

It has been 7 months now for me since surgery and I am just now feeling like my old self again. Of course minus one side of hearing. There are options out there for regaining some stereo-like hearing again though. Life does get better. Hang in there through this tough recovery period! There are some awesome folks here to help!  Big group hugs for you and what you are feeling now.

[leapyrtwins]

cindy & sabuck -

my surgeon didn't downplay anything.  He insisted on telling me every little thing that could possibly go wrong with both surgery and radiation.  He scared the living hell out of me!  Seems he deals with lots of patients who went to someone else and have side-effects they weren't told about.  He believes in full disclosure and said he didn't want me coming back to him and saying "you didn't tell me . . ."

In hindsight, I'm very grateful for his honesty.  I went into surgery with my eyes wide open (so to speak  )

Jan

[Jim Scott]

Hi, Cindy:

I'm very sorry to learn about your post-op pain and the obvious lack of complete honesty on the part of your doctor regarding the possible negative effects of your AN surgery.  Your surgeon was clearly remiss in downplaying what you had (an Acoustic Neuroma...a brain tumor) and what the possible ramifications of surgery might entail.  SSD is very, very common following surgery.     

One of the first things you have to come to terms with is the fact that because you have head pain 5 months post-op and are having a hard time dealing with it does not make you a 'wimp' or in any way a 'loser'.  That is just wrong - and you must stop doing that.  You're a vulnerable human being who suffered a relatively rare medical problem - an Acoustic Neuroma - and had the necessary, complicated surgery but now has severe pain post-op.  That is certainly not your fault and calling yourself names for hurting and not being able to hide your pain doesn't help at all.  That your family and friends think you should be 'over it' by now is irrelevant.  They don't have to live with your pain on a daily basis.  It's a shame they can't understand this but it is not uncommon.  No one wants to be ill and folks tend to shy away from those who are, especially when you 'look fine'.  My wife has numerous physical maladies that are invisible (spinal abnormalities, Fibromyalgia, Crohn's disease, etc) and has lots of pain but she only tells me about it when it's especially bad.  Her friends are sympathetic but everyone seems to have their own problems  i.e. "Pain, you think you have pain?  Lemme tell ya about MY pain!" 

While I understand your frustration, I think the best thing you can do is seek some kind of real relief, even a nerve block, if necessary.  Neurontin works well for my wife, but every situation is unique and you really need to consult a Pain Management doctor to seriously address this problem that is clearly affecting your life in a negative way.  I urge you to do so, as soon as possible.

Meanwhile, feel free to post here, hopefully not in tears, and to use this forum and it's knowledgeable membership as much as you need to find a solution to this ongoing problem. 

My prayers are with you, Cindy.  Try to be strong - and I sincerely wish you happier days.

Jim

[lori67]

Cindy ,

I'm sure your family does not view you as a failure at all.  I know it's hard to not feel like you did before.  Most of the time people have surgery when they already feel lousy and then they feel better after.  In my case, and probably yours, I felt great as I went into surgery and felt like road kill afterwards.  It does get depressing.  But, it does get better.  Unfortunately, it takes time - some people more than others.

I found it was so easy to look at all the things I couldn't do immediately after my surgery and then I'd wind up feeling really bad.  Instead I try to look at how much I can do now that I couldn't do in the weeks and months immediately following my surgery.  It used to be an all-day affair for me to walk to the mailbox - now - no problem.  I am able to drive, use the treadmill, play with my little ones - all things that were next to impossible immediately post-op.  I know that 5 months after my surgery, I was nowhere near where I am today at 16 months.  Please don't beat yourself up over what you can't do right now -  you've been through brain surgery!!  Yes, we are all thankful that AN's aren't worse than they are, but that doesn't mean you just wake up after surgery and feel like a million bucks right away.  I've often said that the brain surgery was the easy part.  It's dealing with the things that need to be fixed or adjusted to afterwards that's the hard part.

If you haven't gotten the information that the ANA has to offer, I think you should.  Then you'd have something to show your family and friends that really explains what you might be going through.  Doctors can't explain it very well most of the time either, since I'd venture to say, most of them haven't had brain surgery!

I've heard that some people have had very good luck with neurontin for their headaches, so it might be worth asking your doctor about it.  I am fortunate that I don't have the dreaded headaches.  And I am a relocated Yankee (in Nashville now), so I know what Goody's powder is!   

You've got a lot of support here, so don't be a stranger.  I hope things are looking up for you soon!
Lori

[Omaschwannoma]

Found this one regarding pain.  Hope it helps to know that maybe this is where our post pain is coming from.

http://news.yahoo.com/s/nm/20080623/hl_nm/anesthesia_pain_dc&printer=1;_ylt=AvyhPvPo4B8El9unxwaQIqsR.3QA

[sgerrard]

Hi Cindy,

Welcome to the forum. I can't help you with headaches, but there are lots of people here who can; you have met some of them already.

Besides that, I think you need to join us for moral support, to help restore your sanity. We know what you are going through, and we have lots of extra rope to offer.

Steve

[Captain Deb]

Hey Cindy,

I live in NC and will PM you my phone # just as soon as I finish typing this so you can call me.  I have totally been through all of what you are going through (minus the teenagers) and have some good recommendations for you in regards to where to get started on your journey to get your life back!.

 I also thought, "well, hey, bip, bap, boop, scoop this sucker out and git on with it." NOT! I was totally waylaid with these wicked headaches, but have made my way back to a reasonably normal life in spite of them. Different, but reasonably normal.

You have come to a very good place for the best help from the best people--the road has been paved a little bit for you.  Time to take charge of your own healthcare via the vast access to information that we all have at our fingertips!!

Hugs,

Capt Deb

[sabuck]

Cpt. Deb,

I was wondering if you could tell me what piratitude might be? It sounds like something that might suit me.  I read your thread about the new drubg that you are trying. I hope that the headaches stay in check. I know that they can be nasty! Best wishes. I might want my nickname changed from 'Bucko' to 'Buccaneer'. Maybe I should find out what piratitude is first? 

[Captain Deb]

Google has 14,100 sites with answers fer ye! Gotta get the spelling right, tho.  It has 3 t's! My own person definition has alot to do with what you gotta have to get through the day with one o' these infernal headaches!

Capt Deb

[leapyrtwins]

I live in NC and will PM you my phone # just as soon as I finish typing this so you can call me.  I have totally been through all of what you are going through (minus the teenagers) and have some good recommendations for you in regards to where to get started on your journey to get your life back!.

Cindy -

I just knew that Captain Deb would be able to help you.

Many thanks, Captain! 

Jan