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thank goodness, please help!

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lori78:
I am so happy to have found this forum~  I'm 28, live in Richmond, VA, and was diagnosed w a large 3.5 cystic AN in 10/06.  Sincew then I've had two 15 hr operations and Gamma Knife.  I'll know my tumor status after a scan in October.
My last surg was 1/28 w radiation on March 15th.  A ccouple of issues I still have :  balance problems, I can't feel the left side of my face and it doesn'r create moisture (tears), fatigue, deaf in the lefy, shooting mouth pain, but what is bothering me the MOST is extreme depression and anxiety.  I wake up some mornings in a panic and slept away most of April.  Everyone, including my doc, seems to think I should be 'back to normal', I am a therapist and tried every support group, meds etc. I could find, and they help only a little.  I also had ICU PSychosis and some residual paranoia from that (less trusting, more guarded).  IF any of you can respond to the psych piece of this, what has helped, etc. I'd really appreciate it.  Thanks so much for reading.  This is such a long haul for all of us, and I admire many of you and your courage/strength!

tony:
I am sure there are others who feel the same way
- check out the search function for "Post Op Depression"
might shine a light on for you
- its actually rather more common than most medical folk
seem to understand
- also check out the current "need to vent" thread you may find some common ground
with the contributors
Best Regards
Tony

Captain Deb:
Lori,
For many of us, getting back to "normal" is a pipe dream and we have had to adjust to a "new normal" which takes time.
I had a relatively small tumor and chose surgery over radiation for some unknown reason, and ended up with daily brainwreck headaches which kept me in bed for almost 3 years.  They seemed to ease off a bit at year 3 and I also found a wonderful doc who has helped me greatly. I have total hearing loss in the lefty, but no eye or facial issues and still deal with anxiety and depression on a regular basis, but believe me , it does get better over time.

 Posting regularly and talking on the phone with a few folks from this forum has helped a great deal.  Keep communicating with us and you will see some of your anxiety and depression start to slip away slowly. Meds and counseling help too--alot of us have been that route as well.

A little Pirattitude helps, too!

Capt Deb 8)

Windsong:
HI Lori....

Well, it sounds like you have been pro-active in searching for various helps for the emotional side of all you have gone through, even to meds. And I am struck by the fact that in total you had 30 hours of surgery plus the Gamma experience on top along with even episodes of psychosis and rresidual paranoia in ICU etc.... i see, too, that you are only 1 1/2 years out from the start of all that so I end up thinking your docs that seem to think you should be back to normal are maybe being a bit naive here as we all know that not everyone fits into a nice, tidy, post op recovery schedule graph type thing.....

When I think about the typical six weeks time frame mentioned for recovery for almost all ops (generally speaking) ,  I have to smile. For instance, i was told six weeks after an appendix op... uh huh, my incision was an inch wide, pencil thin, almost invisible soon after, I  was young, the gangrene got cleaned up even with the endoscopic procedure, I was fine in 3 weeks;  an op that sliced across my stomach was also said to be six weeks recovery but i was plagued by fatigue, post op meds and it turned out to be more like six months (This op was about 2-3 hrs whereas the first was like 20 minutes lol);  an op to set a broken leg etc. took more than a year to recover from and still left residual complications affecting me still  and some leftover psych stuff from the entire experience......ptss for one....

When I think of someone having two ops in the head plus radiation, I am not surprised at all to hear that a year and a half later some might still have residual things that crop up. After all your head has been "assaulted" chemically with the anaesthetic, physically by drilling and cutting etc. the whole shebang.......it really surprises me that more isn't said about the emotional/ mental states of procedures like this....

When you go to sites that explain how the brain works all sorts of areas in the head factor into the emotional side of things. To me its a no brainer that we may have swinging moods etc.....from a medical point of view and even biochemically in ways that are not all that well understood.... and it doesn't suprise me that various meds may not really help all that much sometimes....
I had 25 days of fsr and i was suprised to see how "giddy" i got towards the end....like being high but not having taken anything to do that....so the reverse doesn't surprise me either....

I lost most of April too, was getting quite down, and i knew that my answer wasn't anti depressives because all i really needed was answers to my symptoms then (the physical ones) and a way of eliminating them.... that alone would bring me out of the dumps...

You mentioned support groups and meds. I am wondering if you have tried anything like the qi gong, the tai chi, relaxation classes,, meditation, diet, all that sort of stuff? Done't get me wrong... I am not saying this miraculously takes away your problems... I am suggesting that they can help.... you are a therapist as you said so i am sure you are well aware of the role this plays... it's interesting that even in heart patients it's known that a balance in all areas helps promote healing and well being and reverses physical symptoms too. The best recovery happens in patients who have these things in balance:
1. spiritual ( believing in something greater than themselves).. developing inner peace, being in touch with own self etc.
2. emotional ( having a support system...isolation is not good)
3. Physical ( things like meds, diet, exercise, and so on)
4. Mental ( attitude) losing anger, cynicism, hostility, becoming open (all sorts of things..)

Wishing you all the best. Sometimes simply getting recognition that there is a connection between ones "head" symptoms and one's treatment (ops in your case) and knowing that brain treatments can affect moods, helps......

Good luck and all the best,
Windsong

Pembo:
Lori, I had lots of ups and downs in the past three years. I'd be happy to talk, please feel free to pm me.

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