ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kma on March 11, 2009, 10:24:41 am
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Hi. I had surgery on February 6, 2009 and It's just over one month from my surgery. I'm not feeling good and I have questions that my doctor can't seem to answer. Maybe there are no good answers but I'm very frustrated and am have a real hard time not being constantly sad and worried. I'm hoping maybe one of you can give me an opinion or maybe help me see the light at the end of the tunnel. So here I go with my questions and I'm sorry it seems like way too many questions ~ but here goes...
I can't hear out of my right ear or I should say, the only the only thing I hear is really loud buzzing (static, humming...not really sure how to describe it). After I'm in a room with lots of noise, it's even louder. I asked the doctor how long before we knew if my hearing would come back and the only answer was ~ could be weeks ~ could be months.
When I go from standing to sitting or sitting to standing I get a major head rush. It also happens if I try to bend down. Is this normal ~ should I expect that it will go away?
I hearmy heart beat in my left ear. I can usually ignore it except when I exert myself it gets very loud. Is that normal?
Looking to left is hard to do and it does not feel good. I think it's because of the muscles they cut on my right side.....too tight!! It makes me a little dizzy. Normal?
My head feels like I have a bag of sand in it. Very heavy and awkward. Can't really explain it but it's kind of disorienting. My head hurts when I walk to hard or if it's jolted at all or if it shakes or if I'm on a bumpy road. Is this normal? Does it go away?
My face hurts when I open my mouth (not funny) ~ my lower jaw hurts. Not sure if it's muscles or sinus'. Normal?
I just feel so frustrated and I don't know what's normal and what's not and I'm really having a hard time imagining that I'll ever feel normal again. Any words of wisdom out there would really be helpful to me. Thanks.
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Hello. One month after surgery is not long at all and yes it is normal for what you are experiencing now. It will improve in time and some sooner than others. Some will even take possibly several months to feel better completely. We all vary in how we feel afterwards and some have more weird feelings than others. The hearing may not come back at all. You will get used to some noises you hear and some settle down once there is less swelling. The jaw pain will improve in time. That can take a while also. I have had more than one AN suregery due to being NF2 and only had that with one of the surgeries butmakes it hard to eat.
Were you told to be careful not to strain or bend over much or do any heavy lifting post op?
Also make sure you are drinking enough fluids. It is no fun to feel so off and why am I not all normal since it has been a month. The emotional feelings are a worry too and if you don't feel better in time may need to talk to someone as depression can be a possibilty post op also. Ask any questions to us anytime. We have all been thru it.
Keep being up and active and do what walking you can even if is not easy. That wil help things too. Cheryl R
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Cheryl ~
Thank you for your comments and for your positive words. It really helps to hear from someone that's gone through it. I started out as a happy/positive person and find myself being negative and getting upset with my doctors. Maybe it's just my evil twin. : ) Thanks again Cheryl. I will keep trying!!
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Hello kma,
I am not a surgery postie having gone the radiation route instead. I do understand your frustration though and can only encourage you to go to the "post surgical procedure" section of this forum. Many, many good people have posted their stories there and I am sure you'll find some very good info there. I'll be very surprised if you don't hear from many of our "senior members" replying to your post. I have read many of their responces and you'll find that like Cheryl, they are very knowledgeable. Hang in there, help is bound to be on the way!
Good luck,
Richard
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kma,
Probably not what you want to hear, but...normal. Sorry!
I had all of those things going on too after my surgery. I will tell you that it's all gotten better - so there is a light at the end of the tunnel for you. It's just hard to say how long your tunnel will be compared to other tunnels.
It took a few months for the "noise" in my deaf ear to calm down. The first time I tried to run or walk fast, it felt like my brain was rattling around loose in my head - that got better. The muscles on the side of my neck felt like they shrunk in the wash for a few months - but you have to remember, they had to go through them to get to your AN, so they need time to heal too -I found a warm heating pad and some gentle stretching helped. This could also be explaining the pain in your jaw area. I found that just regular tylenol would help on the days it really bothered me.
I agree with Cheryl that staying hydrated is very important. Dehydration could cause the dizziness when you change position - from sitting to standing...etc.
It is frustrating, but go easy on yourself - it's only been a month. You can ask your doctor for a referral to PT to help with your dizziness and also to show you how to make your neck feel normal again. And I've found the best therapy is walking. Sounds simple, but it really works.
Keep your (sore) chin up! ;)
Lori
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You guys are all great and are making a really lousy couple of days much better. For once, my tears are happy or relief or hopeful ~ rather than just my "poor me" tears. I'm on my way to dig out my heating pad now. I wish "thank you" sounded bigger. ~kma
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making a "thank you" sound bigger is no worries.. as we may not "hear" it anyway ;) :)
Hi kma and welcome... and yes, as you can see... normal for many that have gone the same route. Take time to peruse the forums as there may be info there of help. Go to the forum home page... then, top left, try a "search" option on any question you may have..... I believe many threads will be the end results with the same type of conversations.... again, "normal" issues you may be enduring.
Hang in there and again, welcome.
Phyl
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Kma ~
Welcome! You've already receive excellent responses so I'll be atypically brief and comment that all of your symptoms are fairly familiar and so, normal. They'll subside, but exactly when is impossible to know, just that they will. I trust that the light at the end of the tunnel just got a bit brighter. :)
Jim
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Jim, Phyl, Lori, Richard and Cheryl~ I think I have to try having a life. It seems like I've been sitting here waiting for the big moment when "miracle" I feel normal again. Maybe I just have to bite my lip and get on with some sort of living. I have about 2 weeks before I have to go back to work and maybe if I give it a shot ~ I can convince myself that it's doable ~ livable....something. I'm just so overwhelmed by the kindness you guys have all shown me. I started out really sad today and you have all helped me deal with another day!! It's 5pm here (Michigan) and I think it's a good time for a walk. Thanks.
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kma~
I am so glad that you found this site - I had told your hubby about it. I really think that it will help to see what other people have say and what that others have gone through this too. You won't find a better, more caring and helpful group of people than here!
K
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Jim, Phyl, Lori, Richard and Cheryl~ I think I have to try having a life. It seems like I've been sitting here waiting for the big moment when "miracle" I feel normal again. Maybe I just have to bite my lip and get on with some sort of living. I have about 2 weeks before I have to go back to work and maybe if I give it a shot ~ I can convince myself that it's doable ~ livable....something. I'm just so overwhelmed by the kindness you guys have all shown me. I started out really sad today and you have all helped me deal with another day!! It's 5pm here (Michigan) and I think it's a good time for a walk. Thanks.
kma... for me... and only for me... one thing I have learned over time... many here know I have multiple ailments with which I deal on a daily basis.. and the key for me (and only me) is this... try to "embrace" my new "Normal" as this is who and how I will be moving forward.. and instead of trying to fix it at all costs, when some of it cannot be fixed, I've learned to "embrace" what I have and what I have been blessed with and take each day as it comes...... :)
Hang in there... you can do it.
Phyl
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Here's to you Phyl!!
Love ya!
K ;D
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KMA, the feeling you are experiencing sounds normal. Keep in mind, you have had brain surgery and lots of stuff is in your head and it needs to settle down and that takes time. Tightness, hearing issues, wierd sounds in your ears, tingling sensation in your face, strange taste buds, balance issues, fullness in your head, all of that seems to be par for the course. Rest, rest and rest. Your body will tell you when it is time to do more things. In the meantime, let your body recover. I learned from even the simpliest surgeries that your body still needs to recover. Walking is good when you are ready to do that. I started walking and that helped my body recover faster, in my opinion. However, I had someone walk with me for a few weeks until I was ready to exercise on my own. After about 3 months I was back to my normal exercise routine. Stay strong and REST!
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KMA -
Baby steps! Start out with taking a little walk, maybe a trip to the store if you feel up to it (go when it's not crowded!), get back into a hobby you might have (unless that hobby is skydiving or something - I'd wait a little while on that. :D).
I think it's to be expected to feel like you have no life right after brain surgery. It's your body trying to tell you to take it easy and gradually get back into things. Just think back to before you knew anything about AN's - if your friend had told you he/she had just had brain surgery a month ago, you'd probably expect them to take it easy for a while - so it's okay to do that for yourself too.
You'll get your life back - and like Phyl said, it may be a little different than it was before, but different doesn't have to be a bad thing!
Hope you enjoyed your walk!
Lori
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OKay, I'll jump on the "normal" bandwagon. I, too, experienced just about all of which you described. If it's any consolation, I'm 10 months post-surgery and most of that has gone away. The tinnitus (ringing in ear) still gets louder when I'm in a noisy place or strain (e.g. stretching because I'm tired) but I take it all in stride and know that it's just part of my "new normal". Getting back into a more normal (pre-surgery) routine will help you adjust quicker. Take it easy and listen very well to your body; it will let you know (usually by throwing you back down to the mat) when it's too much. Admittedly, I didn't want to do anything but sleep and watch tv for about 6 weeks.
If it helps, my blog with the story of my diagnosis up until about a month or so ago is listed in my signature below. Perhaps you might take some comfort and relate to much of what is there.
Welcome to the forum!
Regards,
Brian
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I think I have to try having a life.
Yup. No matter what, there is life after AN. Take it easy and slow, you'll find the way. Welcome to the forum!
Steve
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Hi kma,
Sorry I'm a little late in coming to this thread. You've already gotten tons of great advice so, I'll just say that yes, everything you are feeling is normal and will get better with time. As Lori said, baby steps and patience are the key. My doc and many others had advised not bending over for a few weeks after surgery and also set weight lifting limitations for a few weeks. Keeping you head above your heart for a couple of weeks may help the sensations you get when bending over and standing quickly Walking is great exercise and one of the simplest things to do -- it's also good for helping you feel better overall.
Wishing you a speedy recovery,
Wendy
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Hi Kma:
Welcome to the forum. You have come to the right place for support. I am only 3 weeks out of surgery so I can not share as much. I can say that there are wonderful folks on this forum and many have already offered great suport and advise. I do know that you do need rest and to listen to your body. I get frustrated sometimes because I want desperately to feel and do what I did pre-surgery. I have to realize trhat I just had major surgery and in time I will get better. You will get better. Try to stay positive. I wish you well.
Sonja
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kma,
As most have said, everything that you describe is normal post-op stuff. I had most all of your symptoms. It will settle down, and most things will get better slowly. Try to ride the wave of recovery; acceptance and patience are the key. At almost 8 months out, I am feeling great. I still have some symptoms but they serve to remind me of just how lucky I was to be diagnosed and treated by great doctors. You will get better and life will get back to almost normal, although you will have a new perspective.
Be well,
Marci
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"Lots of Questions" .....You have come to the right place for answers,comfort and acceptance. The "poster's" here have given me such and more.....after 4+ years after CK. For me...acceptance of my circumstances.....doesn't mean giving in to it. However, it encourages me to move in a forward direction, trying new ways to cope. I recently found the referral to using the heating pad.....what a lifesaver. After "suffering" with trigeminal pain....it has proved to be a powerful weapon against the usual evening onset of pain/tightness in face and neck areas. All of your mentioned issues have besieged me at times.....I have learned to accomodate them as best I can....listening to my body...adjusting routine/expectations to suit what ever is going on at the time. This seems to relieve the stress when my expectations/performance for the day are reduced. Sometimes this means saying no when I really want it to be yes....lying down....when I want to be out walking...cooking etc. I believe that there are no hard and fast rules for success....challenges are going to come....and go.....some more difficult than others......but we can as participants on this site....offer comfort, new and innovative ideas of coping, understanding....and a positive flow of information to each other in the hope of securing a better future. Keep coming back.....it works!!!!!! Judy
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Thanks everybody. Today I'm shooting for a better day. I think the rain really makes things worse.
Pooter~ Your message made me laugh....I've called my sister Pooter since were kids. : )
I keep feeling like after one month, I would feel alot better. I see lots of posts where people feel great after only 2 or 3 weeks. But you're all right ~ I guess everyone is different and my old body is just being stubborn!
I think you are all fantastic and will try to be as positive as all of you.
Cold day here in Michigan ~ but I'll be out there walking as soon as my husband gets home. brrr.
Cheryl~ I'm about 1 hour from Lansing (south). Mackinac is beautiful.....I love it there!! Thank you for the message.
Kay~ Thanks for pointing me to this website. It's huge!! I'm grateful.
Off to drink more water and do something good (not sure what that is yet) : )
xo to all of you. kma (kathy)
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Hi Kathy,
Late chiming in here. You are really doing great. I thing 6-8 weeks should be the normal recovery period, no matter how you feel post op because like everyone said you had BRAIN surgery, and you gotta give your body time to heal properly inside.
What kind of work do you do?
Will you be able to go back part time at first if you work full time?
People see us as normal, but they don't hear the sounds in our head or feel the wooziness/dizziness that we sometimes get.
You have to keep reminding people-Hey, I'm still me but I'm feeling different and gotta listen to my body.
Make sense?
Cheers,
Maureen
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kma~
glad today is going to be a better day!! wish i could think of a good indoor activity to keep you moving...got plants? water them with a glass of water each - that way you're not lifting too much and you have to walk back & forth to fill it up!! Not very exciting, I know!
K ;D
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Whoa, Kaybo, you wild woman! You really know how to have fun! :D
Lori
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Kathy,
See, I told you so. This group is just simply fabulous. One thing I have adopted as my own personal daily mantra helps keep me going. I advocate the following to all AN members: Adapt! Improvise! Overcome! OK, I "borrowed" that from a Marine Recon platoon but it helps keep me focussed. There are things beyond my control any more so it is up to me to adapt or improvise in order to overcome whatever it is that is in my way or that I have to deal with. Your posts have a much better "sound" to them now. Please keep us posted on your progress and please send some of that rain down here to the Texas coast. We are so very, very dry this year. Glad you are here with us!!
Richard
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what you described sounds very similar to what i am experiencing at this time, my surgery was Feb 11, of this year so im like 5 weeks out. I found out what was causing the pulsating heartbeat sound and the pressure in my head along with other issues, was that i have a blood clot in one of my veins, they say it can happen as a result of surgery and for those with bigger tumors it may have even developed before the tumor was taken out becuase of compromised blood flow. I am on a diuretic and baby asprin, but they arent doing me that much good, I went and got another CT scan today and they are going to start working on some plans on what else they can put me on and do for me, the pulsatile tinnitus can be very debilitating and somedays when its worse, it literally makes me crazy and i cant stop crying...I feel for you and hope they will find what specifically is causing your symptoms. Good luck:)!
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Hi, Kathy -
I'm chiming in late, but wanted to say that you've gotten some excellent advice.
Baby steps and patience are the "norms" at this stage of your recovery.
As time goes on you'll see that things generally get better.
Welcome to the forum ;D
Jan