ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: cin605 on May 26, 2009, 01:35:30 pm
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I have been doing physical therapy/vestub rehab massage chiropractic all of these hoping to see some improvement in my balance &
pain n head neck shoulders I am seeing neaurologist...everything i can think of....am i going to feel this way forever?
I have one yr. postop visits coming the 15th w/ ENT,neaurosugeon,MRI,hearing any good ideas or questions i should be asking when i go back to dartmouth?
I think i need a list.
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I wish I had answers. I did not have surgery, so I can't fully understand. I can share that its been approx 1 yr post-op. I have heard many on the forums talk about how sometimes, it does take a bit of time to feel better. I can't sugar coat and say things will get better. I or we have no guarantee of that. I can offer hugz. I can offer a shoulder. I can offer friendship. I wish I could cure what ails you but I can't. But, know this... I am SO cheering you on, sending wellness vibes that things start to get better sooner than later. I am cheering you on and hoping on the 15th, you get answers you seek.
Please hang in there. I AM cheering you on (although I look crappy in a cheerleading outfit!) and hoping things improve soon.
Hugglez!
Phyl
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How often do you do your balance exericses and what kinds of things are you doing?
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i am the same age as you, i didnt see a difference till about 2 years post op esp with the turning of the head without losing my balance, when you are out walking , turn your head from side to side slowly , i think my neigbours think i am being nosy looking in all the houses lol, also the standing on one leg is a good exercise.
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...when you are out walking , turn your head from side to side slowly , i think my neigbours think i am being nosy looking in all the houses lol, also the standing on one leg is a good exercise.
Ah, the "wonky head" strut! :D I know it well and also do the same thing when I walk the dog. It certainly does help! :)
Phyl
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I am doing the exercises dailey,Therapy weekly.Excersises i do are turning head back n forth while focusing on objest on the wall
then doing it walking.turning my head up n down side to side.closing eyes standing in place & marching.Walking dailey.
bending streching.Just normal stuff vacume,dishes laundry dinner keeping up on the bathroom cleaning ect.
I am having a hard time dealing w/ public places...sensory overload.
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Cin........I too am having great difficulty with balance issues....It's really hard to force yourself to do stuff but I do it. It seems there are too many issues to deal with. Yesterday was a good day but I pushed it a bit to far. Today I am slower than slow but trying to figure out how to pick myself up and go again. I want to make some jam for my kids and grandkids.....berries are plentiful here in California....so now is the time to do it. I am just struggling to get the motivation going.........Soooooo sorry you are struggling with this aggravating issue too.
Judy
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I hope you don't mind me asking your age and what kind of physical condition you are in. A little over a year and a half ago I was bouncing off walls, occasionally falling down, often couldn't drive. Then I found standup paddleboarding. I'm not saying this is for you. But I was doing all those same exercises. Tell me...do some of those things really sound like exercises to you? I'm 51 years old and I was well overweight, I've lost about 55 lbs, and I'm much closer to "normal" than I thought I would ever see again.
Depending on your age and condition I suggest you find yourself something you can be passionate about that challenges your balance to the max (with little danger of injury) and do it constantly. I went from falling every couple of minutes in flat water to surfing in overhead high waves. My normal workouts now are going out in rough, choppy weather, the choppier the better. The best part of it all. It not only gave me my old life back....it made it better. I'm having so much fun I feel like a kid.
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The best part of it all. It not only gave me my old life back....it made it better. I'm having so much fun I feel like a kid.
Cin605,
I hope you keep motivated to continue the exercises or whatever else you can do, to get closer to normal balance, etc.
I have not had any treatments yet, but get constant inspiration from reading Bob's paddleboard experiences and how it changed his life.
My thoughts and prayers are with you for your return doc. visit.
Keep posting, keep asking questions!
Sincerely,
Sue
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Stoneaxe-I am 43 in good physical condition.115lbs.5ft...i have always been very active as i owned my cleaning bussines for 10 years.
The cleaning i did required carrying a vac up 5 flights on both ends of many buildings(restored mills)&vacuming down.
I walk dailey.I am looking intgo a stair master to get more exersise.Paddleboarding sounds a little scarey to me since i have always been afraid of drowning(maybe due to siblings dunking me as a child)i also despise cold water.
Thank You all for your hugs &support.
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I can identify with the sensory overload you are experiencing. Sometimes in the middle of shopping (which I actually never did enjoy that much :o) I will have a sudden attack of "I cannot stand the sensory overload, gotta get out of here!" All of the loud noise, bright lights, close quarters, etc. seem to build up. I never had this happen pre-AN surgery.
I am so glad I am retired from teaching. Cafeteria duty now would be a nightmare for me!
Clarice
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Clarice........I too have sensory "dysfunction".....can't....don't want to be....in competition with all of the elements. I have to leave with the overload.......to find relief. I have actually left my "would be" purchases in the basket or counter to get out of it.
Judy
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I used to love shopping both grocery & just browsing now i am in & out asap.When the feeling hits there is deep sense of urgency to get out of the store & home away from everybody & everything.My balance goes bazerk & i turn really pale white my mom can just look at me & say we need to get you home.Are you o.k. to walk by your self??& then than just magnifies it becouse i get upset that i can not function at a normal pace.So now i grocery shop every 2 weeks & i am considering buying meat packs.
Then the liitle guy on my other shoulder says go to the store the more you force yourself to do it the more you get used to the feeling.I am torn!
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I am doing the exercises dailey,Therapy weekly.Excersises i do are turning head back n forth while focusing on objest on the wall
then doing it walking.turning my head up n down side to side.closing eyes standing in place & marching.Walking dailey.
bending streching.Just normal stuff vacume,dishes laundry dinner keeping up on the bathroom cleaning ect.
I am having a hard time dealing w/ public places...sensory overload.
Try these from time to time (in order of difficulty). When you feel really comfortable with one (and it make take several weeks) then move on to the next one.
1. Stand heel to toe for 30 seconds then switch feet. (multiple times)
2. Walk heel to toe
3. Walk backwards heel to toe
4. Stand heel to toe looking side to side
5. Walk heel to toe looking side to side (This one is a killer) I've been doing this for months and still can't master it. But I know that's a good thing because it's stressing me.
Also, I have found that focusing on an object while looking side to side sometimes really helps me a lot (but not always). I do it every chance I get. Sometimes in the shower, a lot of time while at work when I'm slow, etc... The more I do it the more it helps me. I have seen tangible improvement in the last couple of months in that area.
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Thanks for input will try these exercises.
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Cin....I have tried vestibular training (no avail) Next week going to pain management (physical therapist) clinic to see if there is something new to try. With weather system moving through.......tinnitus, balance, fatigue, headpressure increase etc. everything is difficult. 4 years out now with increase in symptoms?????? FRUSTRATED to say the least. Had MRI on Saturday for upcoming visit to Stanford. I wish I could just get to a place where I can function, even if slow, but able. My motivation is very low....tears come easy.....I want to do sooooooo much and just can't pull it together physically and mentally. Everything seems to be larger than life and overwhelming to attempt. I know this darn weather system is partially to blame.......BUT want to be more active and motivated. I really do have a blessed life........just want to enjoy it more.
Judy
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Sorry to hear your in the same boat Judy..hang in we are w/ you!
I just got back from primary i have a lymphnode infection on left side same side that was swollen for 3 months after surgery..he told me it was the same thing when i went to him after surgery...I think its just another issue that is going to be ongoing.
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Oh, Oh, Oh, how I can relate. . . .and wish I didn't. That whole sensory overload thing is something I thought was just happening to ME. I guess I'm in good company though. My neurosurgeon told me family that the faster they got me out into social situations the better I would recover. Boy what a mistake. It just kind of freaks me out sometimes. It's better than it was so hopefully it will resolve itself soon. Hang in there and know that while there isn't always a lot we can do for each other just knowing you are all out there and understand me is worth more than words can say.
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Oh boy.....I hear you! Just the knowing I'm not nuts. It seems like the only ones that get it are here! I am in tears,having anxiety, balance and headache issues AGAIN today. I feel awful. Storm front moving through again today....barometric pressure must be at it again. I get lymph fluid buildup that my massuese releases. The last time she was here she worked really hard on me and my sinuses let go like a flood. I couldn't believe how much. I have taken 1/2 Valium and 1 Vicodin and waiting for relief to come soon. I have misplaced my 3 carat diamond earings that I removed and wear all the time for my MRI on Saturday and am mystified where I would have put them as rings and solitaire pendant were right where I put them but no earings. They are very precious gifts from my guy and I am so upset with my "stupid mode"All the other stuff seems doable but when I do something like this I think I'm losing my mind. They are insured but it doesn't change my responsibility to put them away properly. All things considered I feel so off center and just want to find some answers to my behavior. My 17 yearold grand daughter is coming this afternoon and she is so wonderful and patient with "Nanny".....God bless her....she does get it and is most helpful and calming for me. She is very protective of me and sooooo helpful. I have always been so competent and reliable and now feel so stupid and unable to function responsibly. How could all of this be related? Does anyone else have these feelings?
Judy
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Hi Judy..Again i am going through the same....i thought i lost my emerald necklace & looked high n low....couple days go by there it is plain site right in the basket i knew i put it in...its like i will look for something & look right at it when iam looking for it & it doesn't register that that is what i am looking for...i did the same w/ my glasses.
Thank God you have your grand daughter to help you & support you.
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Cin..........Why do you think this happens? I recall taking them off, carefully putting the backs on them and placing them SOMEWHERE! I know they are in this house BUT where? Not any of the usual places.
Starting to feel better with meds kicking in......only slept 4-5 hours intermitently. Good sleep seems to be an issue these days and most necessary for coping skills to work. Fear of something.....don't know what....is my emotional state.
Judy
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I have also lost my diamond earrings (not nearly as large as yours but still special to me). I have looked for weeks but still have not found them. They were a gift from my dear hubby. I would feel horrible if they don't turn up soon.
It's all so strange. Some days I feel almost normal and then other days I feel like I'm in a fog and can't function at all. And does anyone have these weird feelings in their head like your brain is shifting or something. I feel like there is some kind of movement in my head and it hurts but not like a headache. I've tried to explain it to others but they just look at me like I'm crazy. Sometimes wonder if i am. But I've notice when this happens is when I have to most problems with cognitive functions. Anyone else have this?
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Yes......you have company...me....Judy! This dilema has gone on for several days now and I am just stuck on it for some reason. I am having bouts of vertigo etc. then tears and anxiety follow. I pull myself back together then it returns. I have gone outside and sat in the garden, called a friend, made some soup for lunch but nothing seems to help. I am just lost it feels like. I have arranged for a massage this afternoon in the hope it will help....she is soooo good and a dear friend as well. Perhaps the company wll help also.
I do hope you find your precious earings soon.......it makes one feel so bad to be so irresponsible. He has noticed I am not wearing them but I can't bear to tell him.
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Oh my ...to much coincidence.....i went to bed at 12am woke up 3am up til 6 sept enough to have nightmare betwen 6-7 back awake.very tired today...heavy headed.....tinitus loud...vision off,just tried to nap didn't sleep but rested.
I have tried 4 different meds for depression all the side effects were worst then the depression its self.
We will get through this rough long road .i feel as i am much stronger person..sometimes..then others week & incopetent.
missed my therapy sesion today didn't write it down forgot all about it.
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I'mmmmmmmmmm back!!!!!!! 5:00am.....not much REAL sleep.....headache...tinnitus...balance?....anxiety...nausea...and dreams (strange) soooo tired...I took something for sleep/anxiety too.....didn't help! Tears are plentiful...frustrated....BUT my massuese/friend found my earings where I had looked 1/2 dozen times when she came for massage yesterday. She is also my housekeeper and knows where EVERYTHING goes!!!! Thank God! Massage really helped for a while then it all came back....grand daughter was most comforting as always...my guy called from business trip and was encouraging.....grandson came with a big bear hug.....what more could one want? I have such a blessed life in so many ways and yet I cry out of despair....frustration and just plain feeling like (you know!) I am sooooo tired.....I think I could pull out of this if nausea and balance improved. If I could just move about and change my direction and focus I could manage the rest.....I have before....not this time. This is the worst stretch of this I have ever faced with no resolution.....laying down helps some....but it still persists......in the 4 years I have never been this bad....I don't think. I just feel lost to it all.
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I'm so sorry you are going through a bad patch, but I am glad there are so many on the forum who can reach out to you because they are going through the same thing. I will be lifting you up in prayer for comfort and relief. You are right to think about your blessings-friends, family, and your newly found earrings! I hope all of them can help to take your mind off of the negative stuff to some extent. Hang in there!
Priscilla
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I am so glad you found your earrings..it just drives me crazy to lose stuff.
I am taking promethazine for nausea as needed it also has something in it that helps w/ clogged feeeling i only take it as needed
it also is supposed to calm your nerves so to speak.Maybe you can ask your primary care physician about it.
Today i have the muscle spasms in neck n head goin on YAY!
I did sleep last night thanks to a lorazepam n 1/2 darvecette before bed.Slept from 11pm to 4:30 am .Stiil woke up w/ head pain.
Its all a big pain in the REAR if you ask me! ;D
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Cin.....I have diazapam and Vicodin would that work? They are pretty much the same I think. I am very cautious with meds and use only when needed. I am getting very little sleep...11/12 until 4/5 with intermittent wake ups...dreams...pain etc. Coping skills nil when tired. I do really well when I am rested as far as attitude....excercise...interaction.........the fatigue is dibilitating........No energy isn't good.
Thanks for your response...
Judy in California
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I can not take vicodin so i am not sure.....vicodin makes me really feel more crappy than i feel to begin w/.It makes my heart race & keeps me awake.
I think darvecette is a step down from it.
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I took diasapam and Tylenol PM last night.....did better. Woke up a few times but went back rather quickly. I still am tired and anxious (nausea) about circumstances.....weather front passing through so perhaps that's contributing to pressure in my head. I feel tense in neck and shoulders. I am trying relaxation techniques to help. I am just at my end with all of this.......need an attitude adjustment badly.
Judy
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Glad to hear you slept a little better last night. I think the storms do have make a difference. We have had a low front passing through all week and it's really giving me bad headaches. Plus it's allergy season. Whenever I sneeze or cough I also get headaches. Does that happen to you or anyone else? Sneezing, coughing, lifting heavy objects or doing anything that causes head pressure gives me horrible headaches still and I'm 6 months out.
It sure is hard to stay upbeat all the time. I find i need to stay active in things that are not AN related to take my mind off of it and to give me something else to focus on. It would be easy to start feeling bad all the time. But that wouldn't do me or anyone else any good. Hang in there, and find something to look forward to. It really helps.
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Thanks..........Yes, I do have pressurized feelings when lifting,bending over etc. I think storm has something to do with my problems. I agree that trying to focus on AN unrelated things help. I am just so fatigued it is difficult but go low and slow and do achieve some things which is positive. Love to cook, play in house,keep order going.......even clean out a drawer or two. I keep trying to focus on pleasantries not negatives. Can't tackle intensive chores.....to much energy invloved it seems. I know I am depressed so only attempt menial tasks yet feel productive.
Judy
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You have the right idea. I need to remember to not over-do it. When I have a good day I get so excited about being productive that I really pay the next day. I'm trying to stay focused on packing for a short trip this weekend. I'm having a hard time because my mind keeps wondering and thinking about my upcoming Tarsorraphy surgery. My husband just doesn't get it. He thinks it's just a quicky out patient procedure, which it is, but has no idea how the idea of it all is affecting me. I feel like a "problem child". He was a little short with me when I asked him if he could take that day off. I know he has a lot of pressure at work but he acted like I was being a baby for wanting him there. He later apologized but it's still bothering me. I hate feeling weak and needy. I hate having to ask people to drive me places etc. I can drive most of the time but on bad days there's just no way and no one seems to understand that I can do things on one day and then not do them on another. I wonder if they think I'm just being whiny and needy and want attention or something, which I do not. I just can't do things on some days. No one gets this. So glad I found you guys. I feel like, no I KNOW, you are the only ones that understand. Not sure how I got off on that tangent, sorry. I"m pretty positive most days but somedays are harder than others.
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It is somewhat comforting to know that others are facing the same issues of frustration, fatigue, feeling down, etc. Underneath I know I really am the only one who can change my attitude ..... but sometimes I just wish I could blame someone else for this happening to me. It's almost as if I am blaming myself for not taking care of myself and letting my body grow an AN ...... my rational mind knows this is not true!
As "epodjn" said I am slowly learning that I cannot do the burst of activity I used to be able to do or I will pay for it the next day ...... both physically and emotionally. Figuring out the pace is what has been difficult, because the aftermath of an AN is so unpredictable.
I am determined not to let this take over my life so it is a constant struggle to look at all of the positives I have and work on avoiding the negatives! :-[
Clarice
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It is somewhat comforting to know that others are facing the same issues of frustration, fatigue, feeling down, etc. Underneath I know I really am the only one who can change my attitude ..... but sometimes I just wish I could blame someone else for this happening to me. It's almost as if I am blaming myself for not taking care of myself and letting my body grow an AN ...... my rational mind knows this is not true!
As "epodjn" said I am slowly learning that I cannot do the burst of activity I used to be able to do or I will pay for it the next day ...... both physically and emotionally. Figuring out the pace is what has been difficult, because the aftermath of an AN is so unpredictable.
I am determined not to let this take over my life so it is a constant struggle to look at all of the positives I have and work on avoiding the negatives! :-[
Clarice
Clarice,
Honestly, I couldn't agree with you more....
Phyl
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Clarice......You've got the right idea....Try not to overdo after a good day. I just recently figured that out. I do the same thing....I think wow here I go.....gonna get stuff done today! Next day.....Not good. My son came by for coffee this am and found me teary eyed and depressed sooooo he proceeded to play therapist....."Why are you depressed" You need to be up and at it. Okay...."How do you suggest I do that? He does not get it that I can't.........want to badly but CAN'T.....Mom has always been a positive force in his life....we are also business partners.....doesn't help things at all. He wants the active, participating Mom right in there....."Power Mom" that's me. No I'm not and admitingly so.....don't want to hear it is his deal. He is a wonderful, caring son but in denial about Mom's issues now. I really think my 2 sons are in denial about my situation. I am a widow of 14 years and been a participant in all things until now. I don't say much because of this and rely on this network of fabulous friends and mentors that have experience behind the words. Thank God!!!! I had CK 4 years ago and for the first 6 months was great then.......stuff started to change......Mom changed...uh oh......It's very hard on family and friends that don't see behind the scenes and the changes that aren't visable......thought processes,spelling,vision,deaf on left side, facial numbness, lack off rest etc. Hang in there....doing what is best for you.....listen to your self and body.
Judy
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As an AN patient, I cannot help but feel compassion for anyone experiencing the post-operative problems some AN patients are forced to deal with. Physical problems that, although not always terribly debilitating, are often emotionally debilitating and negatively affect family members and friends, most of whom simply cannot understand something they haven't experienced. We know that fatigue, headaches and similar pain aren't visible so "you look fine" becomes, not the compliment it's meant to be - but more like a hurtful insult. Friends and family, even loving spouses, can't understand why this is so.
While more surgery, drugs and physical therapy are all part of the AN healing process, attitude is a critical factor and one often glossed over by some physicians or dismissed as irrelevant by others. I disagree. I don't believe that pain and discomfort can be eliminated by simply 'thinking positive thoughts' - that would be naive. However, I do believe that they can be managed more effectively by refusing to succumb to bitterness, self-pity or, worst of all, submission. Of course, we're all 'entitled' to a little self-pity once in awhile. That makes us human. However, staying too long at the 'Poor Me Hotel 'can lead to a loss of will, self respect and the optimism needed to keep fighting to regain normalcy. The operative phrase is "it won't always be this way'...and it won't.
Although God blessed me with a good surgical/radiation outcome, I've watched my wife, whom I love, endure very painful neck and spine problems, several major surgeries - most only partly successful, Fibromyalgia, Crohn's disease and numerous lesser but annoying health issues, including a Morton's neuroma (surgically removed) and a gall bladder attack (and subsequent surgical removal of the offending organ) a few years ago. She lives with pain every day. She takes Neurontin and other non-narcotic pain medications, including high-dose (800mg) Ibuprofen on a regular basis. They help, but as often is the case, do not totally alleviate her pain. She long ago decided that she only had one life to live and she was determined not to live it as a partial invalid, house-bound and miserable. She is very active. She spent yesterday at an Indian casino about 80 miles from our house, with our adult son (he drove), playing Bingo and penny slots. She had a great time and didn't get back until after 2 a.m. She won $100. :) Today, she's exhausted and has spent most of the day sitting; talking on the phone, at the computer, watching TV and reading. She canceled a regular Friday morning coffee-date with her sister-in-law. She'll probably go to bed early tonight and be much more sprightly, tomorrow. However, she pushed past any discomfort she felt yesterday and was determined to enjoy herself, which she did. The endorphins released probably helped her stave off her pain. In any case, she did this through determination and a will to live a normal life, despite her deficits.
I mimicked that attitude while recovering from my AN surgery and I'm sure it hastened my return to normalcy. Besides, she needed me to do things she can't do. My adult son doesn't live with us, works long hours and isn't available most of the time, although he's willing to help when he can. So, I was grimly determined to 'get my life back' post-op, and I did. Of course, having few complications was a major factor and I fully realize that those enduring late post-op problems have a much, much harder time of it - and I don't diminish their struggle for a moment. I simply offer my thoughts on how to best cope with the struggle.
The Lovely and Gracious Tina is my right arm in our church benevolence ministry, which I head, as a Deacon. She was and remains a good mother to our son and all I could want or hope for in a wife. She rarely complains and is an inspiration to me. Although she hasn't endured an acoustic neuroma, she has her own set of physical problems she deals with every day. She does so with an equanimity I doubt I could maintain. Because most of her medical problems are internal, she often gets the "you look fine" routine and has learned to smile and say "thank you" when this occurs. When asked how she's feeling (her friends know of her physical problems) she invariably responds: "I'm fine, thanks!"
So, we take it One Day At A Time and fight for our normalcy however we can, always remembering that 'it won't always be this way'.
Jim
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Thanks Jim.....the response "I'm fine...thank you" is a very good one. You are not only giving it to someone else.....you are giving it to yourself. You are giving yourself an affirmation......yes I am fine.... This too shall pass........
Judy
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Judy,
Can you tell me more about your lymphnodes filling n draining?Is it the ones in your neck n throat? ???
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Cin........Yes. From up behind my earlobes, down my neck,out along my collarbone even under jawbone. Massage helps to drain it away. I can feel tightness in my throat...lots of sinus drainage in back of my throat that often gags me.
You too?
Judy
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Yes me to....I ihave had the swollen glands for about 3 weeks,i just got done a five day antibiotic it didn't hep i am now on a different one.I have been taking benedryl & tried claritan,hot compresses,naprosyn .
I am going to try & schedule a massage today.
I go back to Dartmouth on Monday to meet w/ ENT nuerosurgeon & get follow up MRI.
I will try to bide time till then.I know even if i call local ENT(EAr,nose,throat) they wil not have an appoinment till at least a week out.
My lymphnodes?are swollen on left side like you said from below earlobes to middle of throat you can see there is some sort of sac filling up.