ANA Discussion Forum
Archive => Archives => Topic started by: pejavar on September 26, 2005, 01:43:10 pm
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Hi all,
How many of you went through a depression phase , asking questions to yourself "Will I ever be ok ?,
Post AN life is hard than I imagined , I cant smile because of bell's palsy, I have SSD because of surgery ,
I always walk as if I am drunk ( because of the balancing issues ) , My eye is much more sensitive than I think
At the end of Day how do i convince myself that I should keep my Chin up..No matter in crying ..I should move on
in life ...."
I keep wondering ... do others think the same or is just me ....
Pejavar
5.5cm AN - Right side
Removed Dec 14th, 2004
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL
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When I first found out I had a brain mass, I thought I was done for. Not having the MRI report I had no idea what kind of tumor I had and my general practice doctor had no idea either, all I knew was I had a tumor. Driving to pick up my MRI report, all I could think about was how long I had left to spend with my four year old son. I was a bit relieved when I read the MRI report and it said it was most likely a schwannoma, I knew those were benign 99% of the time. But I still really had no idea what the future held in store as far as what treatments I would be a candidate for, etc. But knowing it most likely wasn't a death sentence made me feel alot better. I didn't care if I was bound to a wheelchair and had to be fed through a tube for the rest of my life, as long as I could at least see my boy. I still don't, although luckily that's not a likely scenario with these tumors.
It's hard not to get down and think why did it happen to us, 1 out of 100,000 people, and we beat the odds. Where is that luck at the casino? But the thing to remember is, it's not nearly as bad as some have it. You're alive, and able to be there for loved ones. And try to remain hopeful of new technologies that are emerging all the time, who knows, next month they could have a breakthrough in nerve repair, it is something they are working on so it's not set in stone that you will have these problems the rest of your life.
AxoGen has licensed several patent-pending technologies from the University of Florida. AxoGen’s product development team plans for three product lines that combine the state-of-the-art recovery and processing technology from the allograft-tissue industry with the biochemical mechanism of axon growth and regeneration. This unique technological synergy makes possible the introduction of nerve repair products that improve the outcome of primary nerve repair and are substantially superior to artificial nerve grafts and the nerve-autograft procedures that are the current state-of-the-art techniques for peripheral nerve repair. AxoGen products will offer an integrated approach to peripheral nerve regeneration and will quickly expand and develop the solutions available to patients who suffer peripheral nerve injuries.
http://www.axogeninc.com/about.asp?page_id=4
There is hope on the horizon! ;D
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Dear Pejavar
Any one of the losses that you mention would be devastating.  It's hard to reconcile the person you were before (and what you were able to do, with who you are now and (what you may, or may not be able to do).  It touches every area of your life and how you view yourself.
I am inspired by you and others like you.  I see your losses and it saddens me.  But I also see a person of strength and uncommon courage.  All of the things that you were  before, are still there now. You are still you!!!  Your value remains.  Because of the complicated AN journey and lessons that you've learned you have much to offer to others.  Your compassion, for you understand difficult times, be it the fear of serious illness, physical losses, emotional losses and loss of perceived value as a person. Inspite of everything, you are here , you're alive.  You are and will remain a positive example for others to follow. You are a work in progress. ÂÂ
Remember, that's it's ok to cry, that we need to acknowledge  and count the losses, be allowed to grieve and to be angry before we can accept and move on.  It's hard work, working thru these steps, but it's a necessary part of the journey.
Pejavar, Never under estimate your value, or if it's worth the struggle.  You are leading by example..
Hugs
Raydean and Chet ÂÂ
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I have found myself in a bit of a funk lately. I think it just took a while for everything that I went through to sink in. Sure I am VERY fortunate to only have to deal with SSD, everything else is pretty much back to normal. I was at a wedding a few weeks ago, normally I am a very social person, always talking up a storm or telling stories. My wife asked me what was wrong because I was so quiet. I told her that I gave up on trying to listen to conversation. There was so much background noise that it was a struggle to hear what everyone was saying. It was a big downer for me... I don't think I have had closer to this whole ordeal, not sure if I ever will. I am typically an emotional guy, but since surgery I have never cried about what I have been through. I am always trying to be strong and positive, telling everyone I am doing great. Sure it's true, I am doing awesome, but everything kinda sucks at the same time... Ok, I'll stop rambling, not sure I have helped any, but you are not alone.
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Pejavar, I am really glad you posted this topic. It seems the hardest thing to do is admit the sadness that I believe most of us feel. I am always afraid to let my wall down and let others know that I am hurting or scared or mad. I want everyone to see me as strong and positive. I have been wondering if there was anywhere I could turn for support with my grief issues. I worry about talking about this part for fear that it will scare our members that still have to face the surgery or radiation and the after affects.
For myself, I wish I had been better prepared for the reality of my life after surgery. I was really angry for a while that I did'nt know it would be really hard at times. I miss the me that was here before my tumor.
Am I grateful to be alive?...absolutely yes...am I going to stay stuck in the negative?...absolutely not...but I am going to allow myself a little time each week to be sad, mad, scared, and angry. Each day I see slow improvement and I can look around me and see others that have harder crosses to bear but, I will honor the truth about my "full" range of emotions in an attempt to heal completely. I just wish I could find someone...anyone... that will listen and understand that depression is also a part of the journey we are all forced to take without telling me to be grateful. Somehow that statement adds guilt and shame to all the other things I feel. So I for one will tell you its okay to feel what you feel and add a gentle reminder that grieving what is lost is normal and that walking through your true feelings will eventually bring you to the happier other side. My heart and prayers are with all of you. Sherry
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Hi:
I agree, although we do try to keep upbeat and positive, there is a very big loss. You not only lose your hearing but you lose a lot in the way of communication.It can be depressing. Because I was also going through a divorce I have been in counseling and am glad I decided to listen to my counselor and stay with for a while.I still have bouts of sadness. It's difficult not being a part of things any more. People talk to each other like they always have and you feel left out. Many times I end up copying notes from another teacher during teacher meetings because I am so lost. I am still finding it hard to advocate for myself. But we ARE concidered "hearing impaired" and we do have our right to communication just like everyone else. I hope I haven't been too negative, but you're right Wind6, this part no one understands until you're the one going through it. luv2teachsped ;)
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Hi,
I think this is a great topic. Only here would others be able to understand. I have had times of depression. I can completely understand the "having to stay strong" for others. They want to know that you are still the same person and haven't changed. I even have people asking me if my hearing will come back, and they are nurses! Some times I think it would have been better to have skipped the surgery. I was fine before with only minimal hearing loss.
It's only been 3 weeks since my surgery so I'm hoping things will improve.
Jean
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My surgery was almost 16 months ago and I still struggle with this. My facial paralysis is still hanging on, I have SSD, and I'm just not the person I was before the surgery.
You are not alone. How do I deal? One day at a time and some days are worse than others.
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Hi Guys; Just today I discussed this with my psycologist, and we came to this. Unfortunately, no one really prepares us for how our life does change. We all know it will get better, could always be worse, but still hard to deal with.My doctor said I would learn to compensate for the loss of hearing as well as the balance, which I probaly will learn. But things will never be the same. I too am glad some one brought this up. Although I've think I've done pretty well with all this(only since 5/18/05), I still have my moments.Unless you've actually experianced it, you don't know what it is like. Thanks for everyone's posts! :Dluv2teachsped
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I so agree with you all that this is a great topic. I think a very much needed place where everyone knows exactly how each other feels. For me this has helped me more than I can possibly tell you all. I sit here and read and cry for you all and for me. I believe we are all getting better each day but wow how great it feels to be understood.
Jean...a special hug to you. I see how hard you are trying and please know that you inspire others. I for one am very glad you didnt skip surgery.
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Its been 9 months my surgery , I'm depressed most of the time cause I still can't walk right, I still have bells palsy, half of my mouth is stll numb, I can' use the right side of my body very well, I could go on and on and on! The doctor saiid he didn't cut the nerve but it was streched and would take lots of time .....Sorry to be such a downer ... :-\
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Does anybody take antidepressants? My family doctor suggested it but I don't want to try them. I too take it one day at a time. I had a 3.5 cm AN removed Dec.2003 and have facial paralysis , dry and numb eye and face ( which bothers me most) I'm thankful to be alive but just want to feel good again. It's better than a year ago but I still miss the old me. Any suggestions for fighting depression? I'm a 54 year old grandma , wife and mother. Karen. Also I would like to talk to the guy who had his facial nerve grafted with the tongue nerve about a year and half a go. I found him on this website, but can't remember his name.
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Karen: Yes!,Yes!,Yes! I am taking Elavil plus going to counseling and it helps a great deal. I know there are AN support groups in some areas, too bad there weren't more. I agree that time does heal. As with most chronic conditions, there will probaly always be"those times", but its how we learn to deal with them that will get us through. I have had Fibromyalgia , arthritis and many back surgeries for the past 15 years and always had those periods of depression. Now that I've had my AN, whose cares about the others? ;D I take one day at a time, and find what "picks me up". I know things could always be worse.Thank goodness for everyone here!luv2teach :D
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Hey all
I remember reading webpages and being terrified pre-surgery. My surgeon told me to ignore the horror stories, as they were misleading so I tried. But now I know the truth. The truth is what people say here. So maybe we should speak out a bit more.
Depression is a very real problem for AN sufferers post-surgery. Raydean, wind6 and luv2 are all right - and inspirational. I look around the AN sites and am humbled at the strength and heroism of my fellow sufferers. If only I could learn to look at myself in those terms!
Imagine telling someone that tomorrow they will awake with severely impaired hearing, facial, balance and endless other problems. Their head will hurt, a lot, constantly. Sweet dreams now. They'd never go to sleep! And yet we do it day after day after day. What a bunch of bloody heroes!! Be proud of you. It may go largely unnoticed and unappreciated but remember this, inside: you truely are a marvel.
Keep going, and don't be hard on yourself.
Best wishes
;)
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Finially a little truth. I havent't had surgery yet and am fighting with the ins. co to be allowed to go to House for my surgery. I am depressed now because I have lost all lhearing in my left AN ear and also have AIED which causes fluctuating hearing in my right ear. I have recently changed local Dr. They quote twice as long in surgery and just fluff off my fear of all that could go wrong. I have had to put many things on hold for the past 6 mo. The balance issues have drastically changed my life.
The new doctor said with a smile on his face that if I had facial problems they would only last 6 to 12 mo. If it still there, there is surgery to make me look more normal. Also if I lost all heaing I could get an implant. Guess he is going to pay for it because my insurance won't and I am sorry the piggy bank doesn't come close. Maybe it is time to step up and start pushing for better treatment and the recognition that this surgery should only be done by the best. Also some pre-op counceling might go a long way. Seems like just any doctor thinks he is capable of doing this surgery and results be hanged. Do I sound bitter? You bet I am.
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I agree with what everyone has said, but there are some things we can do. I feel sicker and more depressed on all antidepressants I have tried - including the SSRI's. But I now take three 5 Hydroxy Tryptophen (75mg) and Activated B3 and find that I can now sleep through the night and do not feel depressed. The Tryptophan is difficult to get in Australia and expensive but I have no side effects and for me it certainly relieves the depression.
I think there is a lack of understanding about chronic illness in our society - and this makes the depression worse but i find that if I feel in control of some of my life it makes it easier.
I hope this helps a little, and thank you all for this network,
Bluestar
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Today is my one year anniversary from Radiosurgery, and 8 months since becoming very ill from it. At first I felt so grateful and blessed because it was only an AN and not a cancerous tumor, I went into this so completely uneducated, I am not blaming anyone but myself, I am so angry that I didn't research this, I don't use the computer except to enter the books and didn't realize there was tons of info out there.
The depression has been so horrible, it is like a black hole that totally consumes you. There is a rage that makes me want to scream and a sadness that I can't explain. Some days or even weeks I feel like I'm coming out of it and then wham it hits again.
I am a totally different person since this, I used to be independant, travel on my own. I loved to work out and felt pretty fit and healthy. I am afraid to travel on my own because the movement can make me sick in an instant, I am slowly starting to work out but it is on cardio machines where I can hang on. I am trying and have never foiught so hard in my life.
I hope this isn't to much info, I just needed to say this, and everyone who has been through this understands.
Take care, Deb
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Debora, I hear ya, and understand completely. As if the physical aspects of AN aren't hard enough the emotional turmoil is a real bummer! But it sounds like you are a fighter and are moving in the right direction.
I used to be pretty fit too. I ran my first half-marathon a year before being diagnosed. I haven't run my second yet - I can't even run the length of my garden. But I spoke to a pain specialist today who reckons I can start pushing that bit harder. Easier said than done with a job and family. But I think its time to take a leaf out of your book and get my gym membership renewed. I used to fall off the rowing machine before my surgery so it could be real fun! :-[
Keep us posted on how you are doing.
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I am on Wellbutrin for depression and lorazepam for anxiety. Both meds are low dose and seem to help quite a bit but the biggest help for how I have been feeling lately was finding you all to listen and understand me. For that I will be eternally grateful.
I agree with Sandy that some pre-op counseling as well as post-op counseling would be really helpful. The only support group in my area is a "Brain Injury Support Group" that meets once per week at one of our hospitals. I'm not sure if I would fit there but I am giving it some thought.
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I had a 4 cm AN tumor removed by RS method in 12/00. Brain swelling caused me to need further surgery to remove a part of my cerebellum to make room for the swelling and they put a temporary shunt in. I spent 6 weeks in the hospital and rehab and 6 months outpatient rehab (physical, occupational, speech, and cognitive). I had to stop my teaching career (7th grade science teacher) but I had young children so I felt OK. I had a seizure a week after the first surgery so I had to take neurontin for 6 months. When I was weened off of that I started with depression. I thought something was serious when I started to have thoughts of death being a better option. I told a trusted doctor about this and started Lexapro. It helps tremendously. Twice since then I felt I could ween myself off. Twice thos feelings of death came back. I am staying on it forever because it keeps depression away for me. I also have been in weekly therapy for 4 years and just "graduated" to every other week. Between therapy and medicine, I have accepted the new me. I sometimes think I could teach again but those thoughts don't come as often anymore. I now work 12 hours a week as a lab assistant and need SSD. Sometimes a few hours at work incapacitates me, but I will have the next day off. Life is different but good. But-YES-I needed alot of help accepting all this. It is so reassuring to hear that all of you had depression problems, too.
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How can anyone not be depressed, This is a life changing experience. Life dose go on but a lot changes. I can't carry my grandchild for fear of stumbeling. I look like I'm drunk or had to much to drink when I walk to the mail box (And I'm not a drinker) I can't hear my cell phone most of the time, So it's now on viberate. If I fall asleep with my good ear on the pillow I don't hear the phone or the door bell. I was at a meeting the other night and someone was talking to me but I did not realize it because they were to my left and a row behind me. She thought I was ignoring her and tapped me on the shoulder and said "Hay you, I'm talking to you. are you deaf and stupid." My friend told her about my turmor & surgery but still, it's a hard thing to deal with. I haven't asked the doctor for anything yet because I don't like to take medication, but fear I might need to for this.
LynnDee
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I had so much to say, then I sit at this keyboard and can't think of most of it. Frying2knights I found that working out on the EFX machine is a challenge if you go at a pretty good pace and close your eyes. I can do it for probable 30 seconds or so and then have to open them, I feel as if the world is spinning out of control. I just finished and am not feeling to good, but you know I have found that if I keep going it does improve most of the time. How is the rower? We need to always challange ourselves, I am so determined to FIGHT, I believe it's what has gotten me this far. Everybody hang in there, you are not alone and no matter what symptoms you have you have all of us on this site to listen to you, and to maybe give you some answers and definately support.
Take care Deb
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Hang in there. Your depression is certainly understandable. I'm seeking counseling and am on anti-depressants, and my condition isn't nearly as severe as yours. I try to find the positives, that I'm alive, the tumor is out, healing takes time, etc. But if you can, get some professional help, try to find someone with experience treating people with illlnesses.
Wishing you well,
Nan
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Debra: have you ever had councelling for this depression, beyond that of talking to your g.p.? I saw a psychiatrist for a very brief period and found this very helpful...his diagnosis was post traumatic stress disorder and after a few visits I felt much better, I too have been on and off antidepressants over the years, when life is good and I feel well I am able to wean off them for a while but I haven't been off them for a few years (essentially since I found out about the regrowth I have been really down, now that it's out I plan to wean off them and see how it goes.) Kathleen
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I'm a 29 y/o M from Michigan that had my 3.5cm AN surgically removed last October. There is still some risidual tumor and my next MRI (June 1) will determine if it's growing and if I'll need a stage 2 surgey. Since my last surgery, especially over the last few months, I've been feeling pretty depressed. I'm a pretty quiet guy anyway, so I doubt it's visible to most, but I'm just not feeling great. My confidence has really taken a hit. Everytime I speak with someone I feel like they're staring at my eye (dry eye) or my scar. My voice is also a bit weaker (noticable to me) and I often have to stop mid sentence to swallow. I also have minor balance issues still and I'm battling not being able to do everything I use to do. The left side of my face is not droopy, but is still numb, so everytime I eat and have to use a napkin after each bite to make sure there is no food hanging off my lip! Anyone in a similar situation? I don't like to bug people with my issues, but I don't really know how to get over it. I constantly tell myself to "suck it up," but I'm still feeling pretty down. I don't know why this is, but being that it started post surgery, I'm wondering if this is common or if I'm just screwed up?
Thanks,
Scott
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3.5cm AN partially removed
at Providence Hospital in Southfield, MI
Dr. Pieper & Dr. LaRouere
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Scott,
You sound a lot like me. I'm older though. 42 and had a 3.5 cm tumor completely removed on September 6. I also feel like people are staring at my dry eye. My husband tells me it's not as noticeable as I think. Still feels that way to me.
I can really understand the napkin when eating. If I don't do that I can have food hanging from my mouth and not even know it. I ate out in public this week with strangers at my table and it went okay. Of course, since they were on my deaf side I couldn't have heard them even if they did talk about me. I also find talking difficult because of facial paralysis. So I talk less.
I go back to teaching in another week. I'm a bit afraid of that. I'd like to spend the next year hiding at home, but I know I can't do that. Hopefully my third graders will be understanding.
I do also get depressed sometimes. It seems to come on like waves sometimes and I have to fight to overcome it. I think that is a function of having major surgery.
The hard part of this is finding other people that truly understand what we have gone through. This board is a real help.
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Scott,
Did your doctors discuss doing radiousrgery on the residual tumor instead of a second surgery. Most experienced AN docs I know will do a "debulking" procedure and treat the remaining tumor with radiation. I'm not sure why you would need ( or want) to go through another surgery
Mark
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Scott: I was 23 when I had my tumor removed and had significant change in the way I looked, I never was terribly confident in the way I looked and the two things I liked about myself were taken from me at the same time, my smile and my hair (perfect teeth thanks to braces and it was long). I fell into a great depression and became very self conscious. After a period of time I went to my family doctor and started antidepressants figuring a chemical lift would help, and it did because after brain surgery the chemicals in people's brain gets mixed up and in some causes a chemical depression and this is the case with me. After another period of time I went to a psychiatrist (not a councellor because they are expensive and here in Canada a psychiatrist is covered by o.h.i.p so it didn't cost me anything). I only saw him briefly and felt much better, during my last appointment I finally asked him what diagnosis he had "given me" (mostly out of being curious being that I am a psych. nurse) and I figured "agitated depression" turns out the diagnoses he came to was Post Traumatic Stress Disorder, a significant life threatening illness such as we have can cause this and if you read up on it you'll see common is depression, anxiety, sleeplessness and self esteem issues. Talk to your doctor, nobody need suffer depression anymore, there is simple and painless resolutions in this day and age. And know many of us in the a.n. boat have had the same experience.
Kathleen
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Thanks for your messages everyone. I actually go back in December for my next MRI and to discuss what we'll do next, but both of my Dr's have mentioned that Radiosurgery, in their opinion, is out of the question because my tumor is so close to the brainstem. I guess I don't know much about it. At this point I'm just so fed up and frustrated that it's almost like "just do the surgery and let me get on with my life." I hate living in limbo like I've had to since my first surgery. Maybe you can help me based on your experiences ... I'm starting a list of questions for those appointments. When I last met with my neurosurgeon in June his comment was that the risidual tumor is not shrinking and being pretty young, it will almost surely grow again, so be prepared on my next appointment to schedule the next surgery. Any suggestions as to what I should ask there?
Thanks again!
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Ok, here's what I would want to know. Do your doctors actually perform radiosurgery? If they don't actually perform it themselves, I would want to seek an opinion from a doctor who does in regards to whether it is possible. If they do perform it, then they should be qualified to say whether its possible or not in your case.
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Scott,
Personally, it sounds to me like you've got a surgery happy doc who doesn't really understand the other options at all. Maybe someone else can enlighten me but I struggle to understand docs who make the comment that the AN was too close to the brainstem. AN's vitually always start somewhere in the internal auditory canal and then expand into the cerebellpontine angle. Unless the AN is large or starts in an odd place further down the 8th cranial I don't see how it's too close to the brain stem for radiosurgery. In my opinion, in most situations it's a misinformed comment by a surgeon which borders on being a scare tactic. In your situation as you've described it, you are dealing with a small residual tumor which I would really question the surgeon's ability if it's still a brainstem concern to him. Obviously, you have to do what you're comfortable with, but I would take your MRI's to someone who actually does and understands radiosurgery.
Good luck
Mark
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Thanks Mark, I may just do that. I started out with a 3.5cmAN which had actually burrowed itself in to my brainstem, and now it's around 8-10mm sitting just off the brainstem. My neurosurgeon does seem a little surgery happy, but my otologist has always seemed to have my best interest in mind, so I'll make sure I have a heart-to-heart with him before making any decisions. Obviously, I know how much surgery sucks, but what is radiation like? Probably another thread all together, but it is a lot better (easier) than surgery, or just less invasive?
By the way, If anyone is interested in reading about my experience, I have it available by email. It's about 10-12 pages, but It recounts my experience pretty well. If you're interested, just email me at sryan@villagegreen.com and I'll send it on to you.
Thanks again everyone,
Scott
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Just to add another opinion about radiosurgery. We were STRONGLY urged by our original NS and our recent ENT to talk to someone who did both surgery and radio surgery.
We saw a total of 5 surgeons (4 NS and 1 ENT). Two of the 4 NS also performed radiosurgery and they both ruled it out because of the size of my husband’s tumor and it is compressing the brain. One suggested using it only if they weren’t able to get the entire thing. HOUSE dismissed it because they were confident they would get the entire tumor.
But having talked to someone who did both we feel much better about not choosing radiosurgery as an option. Our ENT – who will be one of the doctors to perform the surgery said he felt radio-surgery will truly change the way they treat AN’s in the future – but for now it’s not the answer for everyone.
As one of our doctors told us – you could probably find someone to treat you with radio surgery – but that doesn’t mean that is the right answer. So – again – be careful and get as many opinions as you can. Maybe you'll find it is the right answer for you.
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Scott,
Obviously, everyone can have a good or bad outcome and experience from either surgery or radiosurgery. However, in general, after having both monitored this board as well as talked with many AN patients over the past 4 years there is absolutely no doubt in my mind as to which treatment is easier to go through. In my case, I had zero effects from the actual treatment followed by some relatively minor vertigo episodes during the first 2-3 months. There are others who have varying degrees of transient nausea and feeling tired but overall that is less common. Personally, I don't think there is any comparison to the physical trauma to the body that surgery produces. There are a variety of issues that are consistently debated in terms of what decision people ultimately make in terms of treatment, but there is little disagreement which is less physically impactful. I would add that I'm speaking as someone who had CK. If you go with GK, you do have to have the frame screwed into your head which I understand isn't very pleasant.
Mark
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Hi all! I am so happy that I found this forum. I appreciate everyone's honesty. I am just recently diagnosised. I am very scared, depressed, anxious, and have lots of other feeling too. It is all so confusing. One thing I found that really bothers me when people ask your about your tumor and you tell them it is benign - they seem to think it is no big deal???? I don't understand this? You mention the possible treatments and they think since it can be "treated" that life will be good and you shouldn't worry. Very frustrating. Anyone else get this from family and friends? It makes me want to exclude them from everything and pretend everything is fine.
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Hang in there, Suzanne. I know, I was elated when they found it and told me it was benign and treatable...then I did the research and was terrified. I, too, was anxious, depressed and suffered terrible dizziness/imbalance to boot, which made it harder to advocate for myself with docs, etc.
Though I agree, it didn't help when people said "thank God it's not cancer." No, that is something to be grateful for, but treatments are frightening.
As many before me have said, BE SURE you see the best docs possible who are all very experienced with either surgery or radiation. The House Ear Clinic in LA will review your tests for free and give an opinion. I didn't go there, couldn't afford it, but have still been communicating with their docs post-surgery.
If necessary, get help for your depression, meds or counseling. I am doing that.
Nan
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One thing I found that really bothers me when people ask your about your tumor and you tell them it is benign - they seem to think it is no big deal???? I don't understand this? You mention the possible treatments and they think since it can be "treated" that life will be good and you shouldn't worry. Very frustrating. Anyone else get this from family and friends? It makes me want to exclude them from everything and pretend everything is fine.
I guess everybody's different, but in my case it was me who played everything off as no big deal. My family and friends were all very concerned, even after I assured them it was a benign thing. It frustrated me when people would ask how I was doing, because I didn't want to be treated differently in any way at all. It seems to have worked because my life is back to normal and people rarely ask about it anymore, and I couldn't be happier. The only time I discuss it is on these boards, but my main aim is to help others get their lives as close to "back to normal" as I have. I guess that's easy for me to say, because I didn't have any nerve symptoms, only an earache which is gone thanks to CyberKnife, and as long as I'm in the majority of radiosurgery patients whose tumor is killed and shrinks, then my life was only impacted positively by this, because I have a new appreciation for living after being told I had a brain mass, not knowing if it was cancer and if I had just been sentenced to an early death. I haven't had any problems with depression, but I can't say I wouldn't if I had the problems others on this board have experienced.
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Suzanne: if you are finding people are dismissing your tumor as nothing because it is "not cancer" my suggestion is to just tell them you have a brain tumor and leave it at that, if they ask "is it cancer" don't go into it just say it will be biopsied when it's taken out.....it's really none of thier business anyway. Another option is if they say something to the effect "or is that all begnin" comment "yup it's not cancer do you want it?" Sounds a little rude but I think people who think brain tumor that aren't cancer are no big deal need a big slap in the head. Kathleen
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Is there any relationship between brain surgery and serotonin levels? I wonder if there has been any studies or research done on this. It seems that your serotonin levels (dopamine, norepenephrine, etc.) are in such a fine balance, the surgery (and the extended period of anesthetic) could affect this. With all of the bleeding and swelling and motion in your head, it wouldn't surprise me if this does affect it. You have to keep all of your brain Sarah's happy - Sarah Tonin, Sarah Bellum...
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Very cute about the Sarahs :) I completely agree--suffered from depression BEFORE the surgery and God knows what happened after the influx of chemicals, anasthesia, etc. Even now wonder how the drugs are affecting my brain, but not willing to be without anti-depressants.
Nan
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Recovery tough, alot tougher than I thought it would be! I am trying to keep a postive attitude but it gets harder everyday to remain sane.
Big picture- there is a lesson in this. Somewhere down the road, my experience will enable me to help someone, I don't know who or how yet.
Small picture- I'm alive, I don't have cancer, I don't have radiation because my tumor is gone.
Yeah, the imbalance - dry eye - facial paralysis - deafness SUCKS, no doubt about it!
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After having been turned down by my ins co. to go out of network for surgery I decided to wait and watch. Had 6 mo. MRI :-( it got biggerand became cystic. I never expected that kind of growth. It seems like nothing fits the norm for me. Diag. with Autoimmune Inner Ear Disease that is trying to eat up the hearing in my other ear. I have an appt. with radiation oncologist to see about GK or CK. Then I hear about bad outcomes from that.
A lot of my depression is trying to find a treatment I can live with (no pun intended). Through this I have also developed high blood pressure and a few other little things. I am treated rudely at work. I finally called my PCP and told her nurse that people around me may be in danger if they didn't do something for me quickly. Xanex as needed has been a God send to me. Yes, I know it is habit forming. However, I am not the addictive type and use it only when things get too rough. I was waking up at night with panic attacks. My PCP has been a lot more understanding through this whole thing then the neurotologist's have been.