post surgery longterm effects

[mrmel]

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

[Jim Scott]

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

[mrmel]

Thanks Jim! I appreciate the reply, and be well
                        Mel

[CHD63]

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

[mandy721]

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

[Kaybo]

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   

[moe]

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
Though that could be the age factor too.

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.

[mandy721]

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.

[mrmel]

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

[Kaybo]

Mel~
I think that Mandy was wondering which TYPE of surgical approach was used in your surgery...

K   

[Brewers7]

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.

[mrmel]

Mel~
I think that Mandy was wondering which TYPE of surgical approach was used in your surgery...

K   

  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.

[leapyrtwins]

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

[mandy721]

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

[leapyrtwins]

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