ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: BlueSky on June 10, 2012, 10:02:21 pm
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This is more of a question for the people who have been dealing with the diagnosis of AN for a while, do you feel like you went through the stages of grief after diagnosis? Since I was only diagnosed a few weeks ago I would like what to expect when it comes to the emotions I will be facing. I know it is an individual process but I would think there are some common experiences.
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When I first received my official dx, I was mad and wanted to run away. I felt like getting in the car and driving over the mountains, but I have a family and knew they would wonder what happened to me. Instead, I went to the pool and swam about 100 laps. I felt better after that. I attributed my behavior to a fight or flight response. I have come to accept what life has dealt me, and I am at peace. I am counting my blessings and realizing there are so many people much worse than me. I particularily think of ones who have receieved a dx of glioblastoma.
I still work out regularily. Getting my heart rate up and sweating is great therapy for me.
Hope this helps. My prayers will be with you as you come to terms with your dx.
Jan
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The diagnosis alone deserves to be grieved. It can bring shock, denial, sadness, anger, bargaining, and acceptance in any order and we can go in and out of those feelings multiple times. Not everyone needs to feel all the stages of the process. Each stage of our journey can take us into a grief process. If there are longtime aftereffects, we can re-experience grief periodically as waves that peak and flow. Grief is normal and as long as it is not stuck, we will be able to feel our feelings with support and go on with our lives with more compassion for others and ourselves as witnessed on this discussion list.
By the way, I've been a psychotherapist for 35 years which doesn't make me an expert with coping with AN.
Warmly,
Karen F.
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My first AN was found in 2011 and not as much info on here like now. I was scared my life was over with getting to work (as a nurse,no less) I decided on surgery but not for 3 months later past harvest time due to my husbands grain elevator job. I was a basket case. A good cry about every day. Luckily did get some info eventually but still not sure how I would be. I was so grateful that I did do well and up walking right away on my own. Didn't realize I had balance issues till home and doing the outside walking. I had days of tears still but kind of as a relief mode. I was back to work in 2 months. I did have facial paralysis which took a few months but improved. Little was I to know that in time another tumor was found on my other side and I had NF2. Many here will say how the hard part can be later post op when one looks fine and normal and you do not feel that. Friends and family do not realize and understand how you feel. The recovery time varies with each person and one can wonder if they ever will normal again. For most it can be a new normal but one can adjust,again that varies with each of us. Each of us has a different personality and that plays a part in it al. I wish you well in your own AN journey! Cheryl R
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Bluesky,
Are you w & w or will you be having other treatment? How large is your an? You have received some wise input. I suspect that your emotional health may be affected, to some extent, by your treatment plan. For example, I suspect that those who are w & w may face somewhat different obstacles than those who opt for surgery. I had surgery, and I would agree that there were definite stages of grief. They were troublesome but not, however, insurmountable. Susan
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Dear Bluesky,
I am just now recovering from GK, 3 days in and I can honestly say that in 2004, I had a major shock to my system in the discovery that I had an AN particularly because I couldn't believe I was having another brain event! After my surgery was over, you can imagine my shock to discover that it had regrown in 2011. After these 2 events, I went through all of Kubler-Ross's stages of grief most definitely!
I am pleased to say it does get easier, fear not, your solution is coming......Just have to grin and bear it and of course come back often and discuss it as often as you'd like. Hang in there for now! I'll pray for you!
Mike
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Karen F. said it perfectly for me. Thank you, Karen!
On the first diagnosis 4 years ago, I was in total shock and disbelief. After I calmed down I began to read and ask questions everywhere I could find. That was therapeutic for me. I'm not sure I ever went through angry or denial phases, but certainly in and out of deep sadness. As Karen said "grief is normal ....." Maybe that is why I continue to remain active on this forum .....
And as Cheryl said, one of the hard parts is dealing with looking normal (for many of us), but not always feeling normal ..... at least not as we were pre-AN.
Much also depends upon any post-treatment after effects we may be experiencing, as to the feeling of grief.
Just my thoughts .....
Clarice
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Dear Bluesky,
I didn't think grief would be an emotion involving a AN. For me, I would say I didn't give it much thought, I had three other surgeries in my life totally unrelated, and so I thought now it's my head's turn. I rushed right into surgery without even coming to this site and learning more even though my surgeon had given me this site's address. It wasn't until 4 months after my operation that I came to this site to find out why I wasn't getting better. I'm 20 months post op and I do battle everyday. I regret not giving CK a better look, but that is hindsight now. You must be wondering where I am going with this. Well, I got very angry because the world I knew stopped being normal, and as others have posted here, you can look fine, but no one understands what's going on in the head. The anger went away when I struggled to go to work and I would walk pass this man who appeared to have had polio at birth. He was almost crippled and he struggled to get to his job. I realized I had it better then him, and I should be thankful for what I have. I also ignored my faith at that time. If you are a person of faith, I would recommend you turn to God for strength and encouragement. I would also suggest you turn to your family for your support, they can be very helpful. The people on this site are truly wonderful people who come here with different struggles, but they all come to the realization that it's worse to wade in ones emotion, it's much healthier to look forward and try to make tomorrow a better day.
God Bless.
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Well said Chances3,
Ditto to that! Godspeed, Bluesky! Godspeed!
Mike
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I believe our reaction to the AN diagnosis is situational and will be affected by our attitude.
I was a healthy, active 63 at the time of my AN diagnosis with no history of medical problems. Frankly, I took my good health for granted because it had always been the norm for me. When, at my wife's urging, I finally saw the doctor, had my MRI and received the news that I had a large (4.5 cm) acoustic neuroma pressing hard on my brain stem and that had to be removed, ASAP, I was quite surprised and a bit scared, but not consumed with fear or in any kind of grief. Being an impatient type that likes being in control, I just wanted to get the darn thing out and get back to my rather pleasant life (I had just retired). I quickly realized that my having control over this situation was not going to be in the cards as I gave myself over to the numerous pre-op tests and the knowledge that I was effectively helpless to do anything but put myself in the hands of my very capable neurosurgeon and pray. A lot.
Long story short: the AN debulking surgery went splendidly with no complications. The subsequent, pre-planned FSR treatments (26) were uneventful. MRI scans showed tumor necrosis and the beginnings of shrinkage. I felt great and life was back to normal. I prayed some more, this time with thanks.
Through the whole process, I never grieved. I felt fortunate to still have good health at my age with none of the usual maladies common to sexagenarians. I viewed my AN experience as something that was 'fixable' and that I just wanted to get through and be done with. My recovery was relatively rapid (yes, I pushed it, luckily with no adverse consequences). I may have felt a bit annoyed that I had this rare growth on my acoustic nerve sheathing but I never grieved, even though it cost me my hearing in my left ear, a loss I have to deal with every day but after all this time, has become part of my 'new normal'. I freely admit that had I suffered post-op facial or other issues or had to deal with other non-AN health problems I might not have been quite as sanguine. However, my situation is what it is and as with every AN patient, unique to me. I do recommend staying as positive as one can when faced with this kind of medical problem. I did and I'm sure it was a major factor in how I handled it. That said, we all have to cope with life's problems as best we can, based on our individual situation and personality. I don't believe grieving would have been appropriate in my case but it may be for others. I do not presume to tell other AN patients how they should react to their diagnosis. Frankly, like many, I was somewhat relieved that the tumor wasn't malignant and that, alone, gave me a basis for optimism. I encourage other AN patients to look forward, as I did, and do your best to take control of the situation. Of course we cannot control every aspect of the medical situation but we certainly can control our attitude toward what we have to deal with and that attitude can be a hindrance - or a big help. The good part is that we, the individual, get to decide. I suggest that we try to choose wisely.
Jim
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Honestly, I am grieving the loss of my hearing. Listening to music in stereo was one of my passions in life. I lost my most of my hearing over a relatively short period of time, and after surgery, what little is left will be gone. I'm finding social situations difficult.
I wish I did not have to have this surgery that is scheduled for July 3rd. But, in my mind, the other alternatives are less desirable. There is no perfect solution. It is what it is. When I'm sad, I let myself feel it for a bit, and then I find something else to do.
All that said, there are people who have it far worse than I do, and I am determined to make the best of the life I've been given.
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Hi Bluesky,
Your choice of member name in itself indicates to me that you are a "cup half full" type of person! When this all started for me 10 months ago, I woke up one morning to find most of my hearing and balance on the right side had disappeared overnight. It was scary. As I trekked the diagnosis/treatment trail I also noticed I was grieving my losses big time. I realized what was going on pretty quick and scheduled some appointments with a therapist to talk it all out. I also did alot of AN research and sought second opinions from ENT/neuro surgeons and radiation tx specialists. For me it was empowering to gain as much knowledge as possible about my condition and tx options. I spent alot of time in my workshop working on various art projects ( I do concrete sculptures, birdbaths, etc) while playing my favorite music during which time I allowed myself to feel whatever I wanted to - tears often streamed down my face as I sanded and polished my current pieces. I also walked, prayed and sang alot with my dog! : ) I must have looked a tad eccentric wobbling through our neighborhood trying to work through the vertigo, figure out what sounds were and where they were coming from while singing out loud to my dog, but who cares, eh?
It really helped though. As I watched spring arrive this year, I noticed a certain mock cherry tree blooming during our daily walks. The tree trunk had forked at the base into two separate trunks; the main fork was deadwood while the smaller fork was alive with bright pink blossoms. The tree seemed to be the perfect example of what I was feeling at the time - like I had lost half of myself. In my grief, I saw myself as the deadwood fork. One day it occurred to me that I was mistaken. I was like the blossoming trunk - surviving to bloom again in spite of what had happened to the other trunk. On that day I realized that I would be just fine, no matter what the future held for me with AN. After that I committed myself to getting as ready as I could, physically, emotionally and spiritually for my up coming surgery. Today I am 3 weeks post-surgery and doing better every day. My dog and I are back on our daily walks and although I still am working out what to do with sounds/stimuli and am still a bit wobbly while my left vestibular nerve learns the ropes, I feel good about myself. I did what I could with what I could control and turned the rest over to God. Hope this helps in some small way. I'll send positive energy your way daily! Hang in there, Bluesky!!!
Peace,
Diane
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Diane, thanks for sharing your process. Lovely and hope filled.
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Diane .....
What beautiful imagery!! We can all learn a lesson from you on how to deal with our grieving!! Thank you so much for sharing that.
Clarice
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I agree with Clarice! Beautiful, Diane!
Liz
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Diane,
I had tears streaming down my face as I read your post. That was beautiful!
Upstate
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Initially I was scared - mainly because I had no idea what an AN was, or if having one was fatal. Once I educated myself, with the help of my doctor (I hadn't found the ANA or the Forum yet), I was no longer scared.
The only time I experienced grief - and it was more like depression - was in the first weeks of recovery when I was trying to cope with being SSD.
Once I decided on the BAHA implant and my insurance company agreed to pay for it, it was like a huge black cloud that was over my head lifted.
Since then, I've been nothing by greatful that I had an AN - as opposed to a lot of other worse things I could have been gifted with.
Jan
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Thanks Diane,
It makes the battle worth fighting after reading your post.
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Hey Bluesky,
How r u doing?
Peace,
Diane
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I am doing OK. Right now I have just been gathering information. The AN is small 6mm, but this weekend I got my first symptom, tinnitus in my AN ear with some hearing loss. I'm on steroids so hopefully it will kick it out of it but this has pushed me toward getting this thing resolved. It's easy to ignore when it's not doing something.
I have been doing ok on the emotional side of things. I have had family members with serious illnesses and definitely gone through the stages of grief. This time, maybe I'm more numb to it since I've had to deal with the family issues before, or maybe it's different because it's actually me and I feel like I am more in control of the situation?
Just trying to stay positive and make the best decisions I can. :)
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Mornin' Bluesky,
Yeah, when it's about ourselves, our mind seems to protect us a little extra, I think.
My AN was not huge, it was the size of a "jellybean," doc said, but it filled my entire inner ear canal so symptoms were severe.
I am glad I dealt with it ASAP as I feel wonderful now. I posted in the post-surgical category if you want to know more about my process.
I also have been dealing with grief and loss regarding two dear friends recent deaths (physical, anyway) due to cancer. My one friend's celebration of life service is today - in fact I need to start getting dressed.
What part of the world do you live in?
Anyway, thanks for the update. Keep in touch - I "somehow" feel called to check in with you and nope, I'm not a stalker! :)
Peace,
Diane
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Colorado! We've got some major fires going on right now, I'm not in a fire area but it sure is bad out here right now. I saw a few drops of rain today, hoping for some more.
Thanks for checking in,
Sky
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Yikes! Ya'll do have major fire problems for sure. I've spent some time out your way and loved nature's offerings - mostly the Aspen area. Overall, I've spent tons of time rambling out west - worked a few years in Yellowstone Park, then 20 years on the west coast: 10 in L.A., 10 in Portland, Oregon. When I visited Mesa Verde it was after the fire there - it takes many years for forested areas to recover, eh? I'm in Michigan, lots of forest. lakes and rivers. No fires except political ones right now. :)
Anyway, be well. When you decide to take action on your AN, do yourself a big favor and get second opinions. I would also go with the top ENT/neurosurgeon available to you - no rookies! Sending good energy your way.
Peace,
Diane
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Guys,
How about when it happening to someone else? Do you go through all the stages at once or is there a stage where you can slow it down some before you get to acceptance? I had a call today from a dear friend of mine who is going through end stage brain cancer, the call came from nowhere, I certainly wasn't expecting it! It came like a gut punch and knocked the wind out of me. Acceptance of circumstances is right around the corner for me. For her it was the final call, for me, it was learning to deal with loss again.
When it happens to a close friend it hurts as well.
Please everybody pray for my friend Phyllis R. tonight (NO RELATION to anyone here!) that she land safely at God's doorstep soon!
Mike
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Hey there,
I have to say I was sooo relieved to finally have a diagnosis! I had symptoms on and off for 30 years and had been misdiagnosed with something else. So to finally know what it was gave me more relief than you can imagine. Honestly, the first time I read one of the articles on the site about how the balance and other problems that affect us could effect memory and fatigue, I burst into tears. It explained so much! I wasn't crazy. For years I had wondered if I was depressed because of the fatigue I was experiencing. And, my family has a significant problem with Alzheimers. So I thought that I was just going down that route early and honestly didn't take care of my health very well because of it--why bother?. I actually feel now as if I have been given a new lease on life.
Now I wonder about my mother who passed away in 2010. She had Alzheimers when she passed but had begun experiencing "symptoms" more than 20 yers previously. She had balance issues, hearing issues, was diagnosed with Menieres, but never had an MRI. For those 20 years she had fatigue and memory issues but would test negative for Alzheimers. So now I wonder if she also had an AN
One thing I have yet to deal with is the hearing loss. I am only 2 weeks post surgery so still dealing with the mechanics of day to day recovery. But I am a musician and obviously hearing has been a very important part of my life. My family is on the look out for signs of depression as I come to grips with the fact that I no longer have stereo hearing. Sounds silly to worry about when you get to live but it is a huge loss. I already can tell that a car stereo sounds like a 70's transistor radio and it does seem to me that some sounds are at a different pitch to me. So honestly, I do anticipate some grieving over the hearing loss at some point down the road. But the actual diagnosis of AN did not result in a grieving process for me, only relief in knowing what I had been dealing with for so long.
Take care,
Meg
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Hi Meg. After experiencing the progression of symptoms for so many years, it makes sense that relief was more present than grief! Thanks for sharing your story.
Karen
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I was diagnosed with my AN July 3, 2007...3 weeks before my wedding. I went through denial right up until the day of my surgery, November 16, 2007. I had a fast growing tumor (the size of a large grape) pushing on my 7th and 8th cranial nerves and surgery was the only option. I knew I was going to loose my hearing in my left ear and they were going to have to sever my balance nerve. I did not respond well to the surgery (or I didn't have the "outcome" the Dr told me). I had to learn to re-walk, and my sensitivity to noise in my right ear is severe. I have tremendous issues with balance still (I have had one surgery on my wrist and need another on the other wrist and on my knee from continuous falling), despite a year of vestibular therapy. There are other day to day issues I still need to deal with. Lets just say I am at the stage of anger. I am angry because I don't feel I have the support of my spouse because he doesn't understand that even after this long, I'm not better, and that it frustrates me too, I'm angry that I can't take my kids to places like the movies, or see their dance recitals, or go to school functions that are inside because the noise give me migraines or makes me puke. I can't drive long distances because my vision gets blurry. I can't take my 3 yr old to Disneyland and take her on the rids that have black lighting because the lighting makes me sick (or my older one on the roller coaster which I love). I can't even go into an indoor mall for to long because the echoing makes me sick. I am angry at all I have lost and continue to loose out on. It has been almost 5 years and I am still angry. Not "why me" but more "why didn't you tell me?" I knew about the hearing loss but everything else...I had no clue. And I'm angry that my Dr. calls this success.
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Crazyjster ~
Of course I'm very sorry to learn of your multiple issues following AN surgery over five years ago. Your anger, disappointment and frustration are certainly understandable. I would feel pretty much the same way in your shoes. I think we all would. Your anger at not being told what could happen post-op is perfectly rational. Most doctors do give their patients the 'worst case scenario' but my neurosurgeon assured me that, although he couldn't offer me a guarantee none of the negative stuff would happen, that he would do everything in his power to make sure it didn't. That was why he 'de-bulked' my large AN (4.5 cm) instead of trying to completely remove it and risk damaging facial nerves (my greatest concern). His hand-picked surgery team was top notch with one person brought in from out-of-state for his expertise. My neurosurgeon had 30 years experience removing acoustic neuroma and admitted that he didn't always get the desired outcome (translation: the patient had post-op issues as you have) but that the surgery procedures had come a long way and he stayed on top of them. I should mention that he was then in his late sixties (now retired). The upshot to this is that the doctor's skill can have a great effect on the outcome and, as frustrating as it seems, a neurosurgeon is judged on whether the tumor was safely removed, not on the patient's post-op problems. Not that it is any comfort to you but I suspect this is why your doctor considers your case a success. The tumor was removed and that was his 'job'. In his opinion, 'mission accomplished'.
I won't presume to tell anyone how they should feel in this vexing situation but I will suggest seeking remedies for your disequilibrium issues, which, if surmounted, might lessen or possibly eliminate some of the other problems you're experiencing. As for your spouse, I suggest he read the posts on this forum to come to grips with the unfortunate ramifications AN surgery can sometimes have on patients and the struggles they have to deal with long after the surgery and hospital discharge. Due to the location of the AN, surgery can trigger a host of issues, as it has in your case and they are not always treatable or resolve quickly (although some do). Recovery, as my doctor explained before the operation, is measured in months, not days or weeks, as with most other surgeries. I was blessed with an excellent surgical outcome and relatively rapid recovery but a quick perusal of these forums, where I've been contributing since 2006, will demonstrate that isn't the case for every AN surgical patient. That fact is one reason these forums were created and continue to exist. They are here to help us support each other and to offer suggestions and, most importantly, support. As AN patients ourselves, we 'get it' and we want to offer our help in whatever form is useful to you. Please feel free to avail yourself of that help or simply post a rant, as you feel necessary. We do that, too from time to time and it can be somewhat cathartic. Meanwhile, thanks for joining and posting - and may you have better days ahead. :)
Jim
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I was diagnosed with my AN July 3, 2007...3 weeks before my wedding. I went through denial right up until the day of my surgery, November 16, 2007. I had a fast growing tumor (the size of a large grape) pushing on my 7th and 8th cranial nerves and surgery was the only option. I knew I was going to loose my hearing in my left ear and they were going to have to sever my balance nerve. I did not respond well to the surgery (or I didn't have the "outcome" the Dr told me). I had to learn to re-walk, and my sensitivity to noise in my right ear is severe. I have tremendous issues with balance still (I have had one surgery on my wrist and need another on the other wrist and on my knee from continuous falling), despite a year of vestibular therapy. There are other day to day issues I still need to deal with. Lets just say I am at the stage of anger. I am angry because I don't feel I have the support of my spouse because he doesn't understand that even after this long, I'm not better, and that it frustrates me too, I'm angry that I can't take my kids to places like the movies, or see their dance recitals, or go to school functions that are inside because the noise give me migraines or makes me puke. I can't drive long distances because my vision gets blurry. I can't take my 3 yr old to Disneyland and take her on the rids that have black lighting because the lighting makes me sick (or my older one on the roller coaster which I love). I can't even go into an indoor mall for to long because the echoing makes me sick. I am angry at all I have lost and continue to loose out on. It has been almost 5 years and I am still angry. Not "why me" but more "why didn't you tell me?" I knew about the hearing loss but everything else...I had no clue. And I'm angry that my Dr. calls this success.
Crazyjster,
I'm sorry to hear of your post-op problems. You have been through a lot. I had surgery a couple of months ago and am wondering how full of a recovery I will have.
It sounds like you have balance issues and hyperacusis. Would it be too disorienting to wear an ear plug when you go into situations that trigger the headache and nausea? It does sound like you are missing out on things that are very important to you. What do your doctors say about your balance, given that the other side of the brain is supposed to compensate? Have they checked you for balance issues that are unrelated to your AN surgery? I have been wondering why some people do better than others and whether that might have something to do with a pre-existing balance disorder on the other side of the brain, that was previously masked by good balance function on the AN side. Do the docs even think to check for that?
I hope you find some relief. I will be thinking of you. Please stay in touch.
Liz
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You sure are grieving a lot of losses. I join Liz in hoping you find some relief.
With caring,
Karen
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Thanks Jim, Liz and Karen...Karen I noticed you were at House too...I had Schwartz assist and House do my surgery but House has been my primary. He just cleared me in Dec which I thought was odd but I was also being followed by Dr's closer to home. So no more trips to downtown LA as of Dec 2011 but still get MRI's every 6 mo's by my local neurologist.
I don't know who suggested ear plugs but I have tried them with no luck...only noise cancelling headphones which is ok for flying but I have 2 small children so pointless (or a blessing if I want to ignore them...but so far I have only traveled with them alone and not had that luxury) .
As for my balance, I have petit mal seizures but they are not in the same part of the brain that deals with balance. The only thing I can think of is hormonal changes after pregnancy may have wacked me out again and ruined whatever I had learned in PT. I know some psychology but not that type (I was clinical not rat (aka brain behavior) psychology but maybe I should have paid more attention-LOL).
That is one of the things that makes me so mad about my husband. I will say I had brain surgery...he will correct me. Um they shaved my head and drilled into my skull severing nerves removing a tumor pushing against my brain. That to me constitutes brain surgery. I do not know what else to call it.
I would love to not be this angry depressed person and be at peace with my life but I don't know where to begin. I have a 1 and 3 yr old who whave to grow up with a mom who has days where I can't function or I'm fine. The being deaf...in one ear, I'm trying to explain that to my 3 yr old when she wants to tell "secrets" and I have made her noise sensitive because I can't be around loud noise. I guess I don't know how to get past anger and to be at peace.
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Hi crazyjster .....
First of all, let me say that I am so sorry you have had such an unpleasant experience since your AN removal. Secondly, I do hope you will seek professional counseling, if you have not already done so.
It sounds like you have a whole bunch of issues to deal with besides having had an AN. Having two toddlers is enough to wear out a healthy person. Having a husband who is less than supportive certainly has to compound the problem.
I'm sure your intellectual side knows that stress and fatigue can make all physical symptoms worse. You not only need support for your physical issues, but your emotional issues as well ..... and they do go hand in hand.
I do hope your husband never has to have a skull-based surgery or he might have to eat his words about your surgery not being brain surgery! If he will look at it, show him the ANA's definition of an acoustic neuroma: http://www.anausa.org/index.php/overview/what-is-acoustic-neuroma Yes, technically it is not a tumor that invades the lobes of the brain. However, it can certainly displace the brain as it grows and during surgical removal, the brain is traumatized through swelling and/or manipulation. In my mind, that alone qualifies it as brain surgery!
With your seizure activity adding to your issues, you need to see a neurologist and/or a clinical psychologist to get all of the help you need to resolve your ongoing anger. It seems like you must have some other underlying physical issues if they are still ordering MRIs for every six months still at five years post-op ..... that is a bit unusual unless they are watching something specifically.
Many thoughts and prayers and do let us know how you are doing.
Clarice
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Hi Crazyjster,,
I am so sorry to hear about the issues you are still experiencing,, this is a very hard journey for so many of us,, some more than others of course,, but hard still the same.. you have two young children which makes this all the more difficult,, (my boys are grown) but I can only imagine the fatigue you are dealing with also..
It is surprising to me that you have just been released from the Drs at House as it was my understanding from most posts here that release or requirement to return to them was much sooner.. that is one reason I did not go cross country to them .. was Dr House concerned at all with your continued balance issue which really seems to be your most troublesome issue?? (aside from the anger which is due in part to that and MOST understandable ).. If you have been seeing him until last Dec. he must have known.. maybe some additional vestibular therapy would help post pregnancy..
I also have seizures unrelated to my AN,, supposedly,, although my first seizure is what led to an MRI and diagnosis of the AN!! Can your neurologist refer you to someone for some counseling or be of any help in suggesting therapies for continuing balance issues..?? I guess you are on some med. for the seizures??...
I know you probably don't have a lot of time for reading, however; a former AN patient has written a wonderful book about his journey, but also with wonderful resources and suggestions for new and Posties that I found a wonderful read and helpful in understanding what others are going through. He is David Douglas Shannon and the book is "Hell in the Head".. I got it off Amazon.com for $14.95... he actually lives in the LA area and is an actor.. he had facial paralysis, , as I have,, and had a hard time dealing with his "aftermath".. as you said,, he did not have the outcome he was hoping for either.. and he was most angry also about the "why wasn't I told what all could happen"... it is a very good book which I read in two sittings,, and I don't even routinely read books.....................PM me if you would like more info on it.........
I am sorry about your situation,, I can also understand about your husband.. mine is VERY supportive, but doesn't like to "think" about me being in pain or having to deal with "hard" stuff,, so he tries to sugar coat things and "lets just move on with things" attitude,, which is fine and I try most of the time to have that "all will be fine " attitude,,, but I am the one still dealing with a smile no longer there, an eye with an weight in the lid that doesn't close well, a face that does not "respond" like other people expect when I talk to them, deaf on one side,, etc. etc. etc.............so I feel your pain as they say... my balance though is not as bad as yours and I am able to take my granddaughter to the movies occasionnally without "puking"...I do use earplug in good ear for most anything with loud noise,, to protect the hearing I do have,,, even when using a hair dryer,, which most people probably don't think about,,,
Please come on here to vent and get support,, we care and understand your "issues",, I would hope that you could find someone professional or spiritual to talk to also to vent some anger,, (I too majored in psychology, ,,, a "while" ago,, but it is not much help to me either.. :P.. we are here though and I wish you well ... let me know if I can help anyway,,, Jane
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I only have a moment to post, but I want to say this:
AN surgery requires breaching the dura, i.e. the lining of the brain. It can lead to a brain fluid leak. How can this not be brain surgery?
Liz
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I join the others in adding my support and caring about all you are experiencing. How difficult it must be to have little ones while having all these physical things happening. It makes sense that you are grieving all these changes. As you know, sometimes our grief and stress can trigger a medical depression that can be treated by therapy and/or medication. You deserve support and a therapist may be able to offer that to you in a way that your family members and friends can't. It is difficult to process grief without support. Thank goodness for this list!!!
Karen
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Crazyjster,
Girl, I get it! You are in my prayers. Perhaps a "hands-on" experience might help your spouse to get it - give him an earplug, spin him around many times while standing on an unsteady surface, e.g., a big pillow, turn on a strob light, add loud, disorienting sound and turn him loose! It can't hurt and maybe it will help him get it. I find it frustrating because AN is an invisible illness to those dwelling outside of our collective skins. I refuse to explain what's going on every 5 minutes to infinite individuals whom I do not even know. I can't do lots of things I used to do so I am focusing on thoroughly enjoying the things I like and can do still. Also advise a therapist - individual and/or couples. I did it and it was most helpful. My spouse is sensitive to my needs but we are creatures of habit - it takes time and patience to retrain ourselves, e.g., remembering to stand/sit on my hearing side to talk to me, etc.
I am so sorry, friend, truly. If I can help, just "holler." God is with you.
Peace,
Diane
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Thank you Diane. I'm about 3 months post-op and struggling lately with Balance/Fatigue/ and Depression. Your comments blessed me.
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I am newly diagnosed, too. I am also very familiar with the stages of grief and I feel every one of the. Right now is anger, I'm 28... this shouldn't be happening to me