ANA Discussion Forum
General Category => AN Issues => Topic started by: mrmel on March 30, 2011, 03:11:40 pm
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I had a left sided acoustic neuroma 2.5 cm 14 years ago. I was 39 years old then. Since the surgery which was 13.5 hours long, I have never regained my usual energy, I have been depressed, have anxiety and post traumatic stress like symptoms. Intellectually I am not the same. I seen every doctor imaginable and they never find anything physical wrong. Recently i saw a brief article on the web that said a part of the brain called the locus coruleus which is in the brain stem can get damaged during AN surgery and cause these symptoms. I was wondering if anyone else out there has had a similar problem and if so what treatment or tests might have helped? i would love to hear some true stories.
sincerely,
Mel
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Hi, Mel ~
Welcome to the ANA discussion forums. I'm sorry you're having these problems. I haven't had quite the same post-op experience but I have definitely lost some stamina/energy. However, at 68, I have to attribute some of that to aging. How much, I can't say. I know that quite a few of our post-op members have had similar complaints so I'm sure you'll receive some interesting responses that may be more helpful than I can be on this issue.
Jim
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Thanks Jim! I appreciate the reply, and be well
Mel
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Hi Mel and welcome to this forum .....
Like Jim, I definitely have less stamina and energy than I did pre-AN removal ...... and like Jim, do not know how much I can blame on the AN vs. normal aging. However, in my case, I feel so much of my energy is now directed at maintaining my balance and holding my vision. Therefore, perhaps my energy is just redirected, not actually less.
Sorry you are having these continuing issues. I assume you have tried anti-depressants and/or regimens designed for PTS patients. If not, it would be worth exploring.
Thoughts and prayers. Clarice
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Hi Mel,
I'm sorry to hear you've had a rough go of it. You're not alone. We are the same age. I had my AN (3.1cm) excised in 2009. Since then, I have experienced ALL of the symptoms you mention--depression, , erratic emotions, uncontrollable anger, fatigue, diminished reasoning and memory...and along with that, daily headaches, continued loss of balance, facial numbness and weakness, loss of taste and smell, right-sided deafness, tinnitus, reduced dexterity on my right side, my right eye won't close...just to name a few. One of my doctors also suggested that the AN surgery (for which I am thankful, by the way), might have inadvertently impacted another part of my brain...through blood vessel compression or other means. Let's form a club! I know what you're going through.
Ken
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I, personally, can tell a BIG difference in my energy level from before (I was 25 and I had surgery 15 years ago) but people always think that I do a lot. I guess I just an Energizer bunny before! However, over time, I have learned to accomodate and work my schedule out so that I usually can do OK...it is VERY rare when (besides at night) I'm just too spent to do anything. I had a lot of brain stem involvement and even had a "surgery induced stroke" - there are certain things that I know have been affected (short term memory, recall) but as far as anxiety or depression, no. Definitely have the fatigue, though. I'm sure they have, but have they checked your thyroid?
K ;D
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Hi Mel,
I too had significant brain stem involvement, 11 hour surgery, 4.5 years ago.
Since then I can definitely say I've lost my "joi de vie" so to speak, but I continue to make it a priority to do fun stuff. I have noticed increase anxiety and depression, which I am taking meds for.
My tinnitus is what drags me down the most. Balance/equilibrium are OK, just a little off at times. And the memory thing. You bet ya :o
Though that could be the age factor too. :P
So you are NOT alone. Don't be afraid to go the pill route with a psychiatrist if you haven't already. Sounds like you could benefit.
As I say, keep truckn.....
Maureen
p.s. All my blood tests are normal. Thyroid, etc.
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Mel,
Further to what my husband wrote, after going back to work he struggled with fatigue and had problems doing his job, which required lots of multi-tasking, meetings and dealing with people.
He stuck it out for a number of months and then went out on leave. During that time, his neurosurgeon, who has been very supportive, suggested that he have a neuropsychological evaluation. This was a two day process at the Neurological Institute at the Columbia University Medical Center. The diagnosis was frontal lobe syndrome, which effects the executive functions ( for example word retrieval, multi-tasking, planing, time management, anger control ) After hearing the results of the neuropsych evaluation, the pieces started falling into place. SInce then he has been seeing a neuropsychiatrist and rehabilitation psychologist who both specialize in treating patients who have suffered brain trauma.
What type of surgery did you have? Ken had retrosigmoid and with the brainstem exposed and moved about the possibility of some sort of brain trauma isn't impossible. Our neurosurgeon told us that the brain doesn't know where the trauma is coming from - surgery, a fall or gunshot and the issues that you and others are dealing with are clearly related to a change in neurological functioning.
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Mel,
Further to what my husband wrote, after going back to work he struggled with fatigue and had problems doing his job, which required lots of multi-tasking, meetings and dealing with people.
He stuck it out for a number of months and then went out on leave. During that time, his neurosurgeon, who has been very supportive, suggested that he have a neuropsychological evaluation. This was a two day process at the Neurological Institute at the Columbia University Medical Center. The diagnosis was frontal lobe syndrome, which effects the executive functions ( for example word retrieval, multi-tasking, planing, time management, anger control ) After hearing the results of the neuropsych evaluation, the pieces started falling into place. SInce then he has been seeing a neuropsychiatrist and rehabilitation psychologist who both specialize in treating patients who have suffered brain trauma.
What type of surgery did you have? Ken had retrosigmoid and with the brainstem exposed and moved about the possibility of some sort of brain trauma isn't impossible. Our neurosurgeon told us that the brain doesn't know where the trauma is coming from - surgery, a fall or gunshot and the issues that you and others are dealing with are clearly related to a change in neurological functioning.
I had a left sided acoustic neuroma, 2.5 cm a 13.5 hour surgery 14 years ago and as I initially wrote i have not been the same. The tumor was compressing my brain stem. I have suggested a neurospychological study, it is difficult to get a doctor to listen or order one. My surgeons say they never heard of these post surgery symptoms, only balance temporary, and eye and facial nerve problems. I think they are behind in their research.
Mel
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Mel~
I think that Mandy was wondering which TYPE of surgical approach was used in your surgery...
K ;D
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I am 2.5 years post op and had significant brain stem involvement as well has various other complications. I had the neurophych evaluation about 5 months post op. I had "executive functioning" issues at that time and I still notice word retrieval problems. Also, I am not the multitasker that I once was. Although I went through serious depression, things have improved dramatically.
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Mel~
I think that Mandy was wondering which TYPE of surgical approach was used in your surgery...
K ;D
Thanks for pointing that out. It was a left sided translabrynth approach radical surgery. I sincerely believe that the medical world is not up on the psychological effects that linger years after this surgery. For example this past summer which was 13.5 years post op for me, I was having serious balance issues for the first time since my surgery.I was sent to a balance center and they did a lot of testing and physical therapy. Their feeling was that I was never properly rehabilitated initially. My ENT surgeon admitted that in 1997 they did not have the technology that is available today to assist with balance rehab. I am certain as time goes by they will discover more and more issues with psychological and cognitive issues.
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I had my retrosigmoid almost 4 years ago at the age of 45 1/2.
I have noticed absolutely no change in my energy level or stamina and most days I'm the person I was prior to my surgery. I say "most days" because on occasion I have balance issues (very slight) that seem to be related to stress and fatigue.
I'm SSD as a result of my surgery, but my BAHA helps that immensely.
Not to be harsh, but I'd imagine that aging has a lot to do with your cognitive issues. I know that brain-wise, I'm not the same person at almost 50 that I was at 45 1/2 - and I doubt that having AN surgery is the cause of that.
Jan
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I had my retrosigmoid almost 4 years ago at the age of 45 1/2.
I have noticed absolutely no change in my energy level or stamina and most days I'm the person I was prior to my surgery. I say "most days" because on occasion I have balance issues (very slight) that seem to be related to stress and fatigue.
I'm SSD as a result of my surgery, but my BAHA helps that immensely.
Not to be harsh, but I'd imagine that aging has a lot to do with your cognitive issues. I know that brain-wise, I'm not the same person at almost 50 that I was at 45 1/2 - and I doubt that having AN surgery is the cause of that.
Jan
Jan, you have the outcome that everyone hopes for, but not all AN patients have. My husband, Mel and many others who post here have had very different experiences. To me your reply to the original post was insensitive.
Miranda
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Mandy -
I'm sorry you find my response insensitive, but to think I'd be the same person (with or without AN surgery) that I was at 45 1/2 when I'm 59 1/2 would be unrealistic.
You say that I had the outcome that everyone hopes for, but I beg to differ. I don't think everyone hopes to be SSD, and while I don't experience serious long-term effects of my surgery, I had my share early on.
Am I lucky? Absolutely. Everyone of us here, whether we have "big" issues or not, is lucky. I was lucky I was diagnosed with an AN, rather than a million other (terminal or highly debilitating) things I could have been diagnosed with. I thank God each and every day that my brain tumor wasn't a death sentence and that I can still function and parent my two children the way I did prior to my diagnosis and surgery.
I realize that lots of AN patients struggle more than I ever have, or ever did. I'm not ignoring that fact, nor am I disputing it.
Jan
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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
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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
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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
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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
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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
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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