post surgery longterm effects

[MNTim]

Mel,

Sorry to hear of your experience.  Hopefully information like yours will enable people diagnosed with an AN in the future to receive better post treatment care.  I think you are correct in that timing could be a factor.  I think also the rarity of this type of tumor leads to a lack of understanding.  Case in point, look at the variety of replies to each posting on this forum.

I had my first procedure a year and a half ago.  Even that recently I feel the post treatment care was lacking.  After my second procedure I was well versed enough to discuss therapy with the neurosurgeon and staff.  However, other than the basics like physical therapy they couldn't provide much assistance.  As with any major illness the person affected is going to suffer psychological damage.  I saw two psychological therapists before I found one who was connected enough to medical issues to provide assistance.  I am dealing with facial paralysis, minor balance issues, left sided deafness, vision issues, psych issues (life change that I didn't want), etc.  That is why I think this organization is so valuable.  It took me a long time to catch on but this is all we have.  Unless someone has been there they don't really understand what we deal with daily.  I am glad you found this site because I know how much it has helped me interacting with people who "have been there".

Tim

[lauralynn]

Hello Mel,

I'm sorry that you are having issues so long after your surgery.  I had a 4 cm AN removed by translab (14 hour surgery) 2 years ago.  I too am suffering with post op issues, which my neurosurgeon said I may have these issues for the rest of my life or for many years due to the size of my tumor and the length of the surgery.  I have chronic fatigue syndrome, facial paralysis/facial nerve pain, headaches, gold weight implant in left upper eyelid, total hearing loss on left side, balance issues, very loud tinnitus and depression.  My doctor has tried several medications to help with the pain, fatigue and depression.  I hate taking medicine but my quality of life has really gone downhill and at this point I'm willing to try anything.  I am no where near as strong as I used to be and I will keep looking for help and answers so I can be the person I need to be and most importantly to be the mom I need to be.  I am meeting with my pcp this week and pouring my heart out to her because I need help.  I've had my thyroid checked and all sorts of blood work which all came back fine.  As others have said, no one can understand what we go through daily (as AN survivors).  We may look ok on the outside but we are suffering on the inside.  I will be praying for you Mel as I do for everyone on this site.  Keep in touch.

God Bless,

Laura Lynn

[mrmel]

Hello Mel,

I'm sorry that you are having issues so long after your surgery.  I had a 4 cm AN removed by translab (14 hour surgery) 2 years ago.  I too am suffering with post op issues, which my neurosurgeon said I may have these issues for the rest of my life or for many years due to the size of my tumor and the length of the surgery.  I have chronic fatigue syndrome, facial paralysis/facial nerve pain, headaches, gold weight implant in left upper eyelid, total hearing loss on left side, balance issues, very loud tinnitus and depression.  My doctor has tried several medications to help with the pain, fatigue and depression.  I hate taking medicine but my quality of life has really gone downhill and at this point I'm willing to try anything.  I am no where near as strong as I used to be and I will keep looking for help and answers so I can be the person I need to be and most importantly to be the mom I need to be.  I am meeting with my pcp this week and pouring my heart out to her because I need help.  I've had my thyroid checked and all sorts of blood work which all came back fine.  As others have said, no one can understand what we go through daily (as AN survivors).  We may look ok on the outside but we are suffering on the inside.  I will be praying for you Mel as I do for everyone on this site.  Keep in touch. 
God Bless,

Laura Lynn

Hi Laura
 Thank you for the reply. You will get through this. I am glad you had the gamma knife, I missed that by about a year, I had radical surgery. Your description of your symptoms are identical to mine and I find it very interesting, same side, your tumor larger than mine. About 2 years post op I had my gold weight removed and the eye surgeon put a microscopic silicone plug in one of my tear ducts, so my left eye could build up some moisture. That worked well and I have had no more eye issues. I also have chronic fatigue syndrome, I found a psychiatrist well versed in our surgery and he put me on a low dose of dextroamphetamine [speed] and it helped a lot. It also got my brain and memory working better. I lost my hearing total on the left side. After another 6 months to a year you will no longer notice that. I struggled for about 2.5 years. As long as you can accept that you are going to be ok and not have to have that surgery again, you will move on, but you will have to save up energy and do some things different. I know how frustrating it is, we want to be back how we were! Il lost my marriage and kids, and I have been alone for 8 years now,and have devoted all my spare time to my kids,so I do not miss out on the best years of their life. I feel your pain. You are not crazy and all you can do is make the most of every day, hug your kids and keep going, do the possible and let the impossible go! Keep in touch. God Bless you!
                                     Mel

[mrmel]

Hello Mel,

I'm sorry that you are having issues so long after your surgery.  I had a 4 cm AN removed by translab (14 hour surgery) 2 years ago.  I too am suffering with post op issues, which my neurosurgeon said I may have these issues for the rest of my life or for many years due to the size of my tumor and the length of the surgery.  I have chronic fatigue syndrome, facial paralysis/facial nerve pain, headaches, gold weight implant in left upper eyelid, total hearing loss on left side, balance issues, very loud tinnitus and depression.  My doctor has tried several medications to help with the pain, fatigue and depression.  I hate taking medicine but my quality of life has really gone downhill and at this point I'm willing to try anything.  I am no where near as strong as I used to be and I will keep looking for help and answers so I can be the person I need to be and most importantly to be the mom I need to be.  I am meeting with my pcp this week and pouring my heart out to her because I need help.  I've had my thyroid checked and all sorts of blood work which all came back fine.  As others have said, no one can understand what we go through daily (as AN survivors).  We may look ok on the outside but we are suffering on the inside.  I will be praying for you Mel as I do for everyone on this site.  Keep in touch.

God Bless,

Laura Lynn

 

Laura, also I wanted to mention that there are some really good physical therapy centers now that have new technology for vestibular rehabilitation,and they did not have that 14 years ago when I had mine. i went this summer and I was having balance issues for the first time since my surgery, you know after I recovered and learned to walk again etc. The new technology is  excellent and really works. Your brain will retrain your good ear to completely take over. Stay in touch and keep going.
                                  mel

[lauralynn]

Hello Mel,

Thank you for your encouragement and advice.  I saw my primary physician yesterday and she advised me to see a pain management specialist...did you do that at all?  She also gave me a vitamin B shot and we are going to do that once a week for a month and see if that may help with my energy.  I pray it does because the things I used to enjoy...I try to keep enjoying them but it's like it doesn't matter if I do them anymore.  I just feel so tired that sleeping is high on my priority list.  I too am enjoying my children...they definately keep me going.  Thanks again Mel for everything and I will keep in touch.

God Bless,

Laura Lynn

[mrmel]

Hi Laura
 I never tried pain management, I did not have much pain after 10 weeks or so other than some general aching around the surgery site. Many people do though. I have heard about vitamin b shots for energy. I think with people like us that have gone through this many others do not realize the effect that it has on our entire system, even the doctor, spouses, family members employers etc. It is a forever life changing experience unfortunately. I think the best we can do is hope for more research in the psychological and fatigue areas of this and possible treatment in the future. We can all benefit from that at anytime that it might come available. In the meantime keep resting as you need to, but also try to live as normal a life as you can, and make adjustments where you need to so you can live a normal as possible life! As long as you know that there is nothing else wrong with you and that the way you feel is a result of the acoustic neuroma, you should be able to take some comfort in that and find a way to deal with the negative effects in a way that will allow you to keep going. I would definately keep my ears and eyes open for new research and keep asking questions on here. This site should give hope as we are realizing many of us are having the same issues, and that says we are not crazy or imagining it. Keep going and stay in touch.
                                                Best Wishes
                                          Mel