AN combined with Chronic Fatigue Syndrome - Recuperation Concerns

[addictedtohorses]

I have had chronic fatigue/immune deficiency syndrome (CFIDS) for several years now to the point that I am unable to work.  I was recently diagnosed with a 10mmx6mm AN.  I am having surgery to remove it on January 11, 2007.  I already have trouble getting through the day with the fatigue, and am having trouble imagining how my body will deal with the trauma of this surgery on top of everything else.  I was wondering if anyone else had experienced having CFIDS prior to their surgery and how they felt it affected their recovery. 

[Sam Rush]

Your AN is relatively small. How old are you and where are u having the surgery?.  Your chronic fatigue will get worse aftr any surgery, or physical stress, but probably not significantly so for any extended period of time. You will do fine, good luck.

[nancyann]

hi addictedtohorses (so's my best friend),

 Well, I gotta tell ya, for me the fatigue is unbelievable.  I'm 5 months post op, love to travel, etc.  After work, I'm ready to collapse!!!
With your fatigue dx. already, prepare for a very comfortable chair/sofa for awhile.    I'd also stay away from crowds before/after surgery to decrease
risk of viruses, etc.

Like Sam said, your an is small in size, so please take some time & think about your options.
Personally, at that size, I'd do radiosurgery, maybe look into those sights.
(I had retrosigmoid on a 2cm an 6/06)

[ppearl214]

Hi addictedtohorses and welcome.

I am a long-time sufferer of Fibromyalgia, as well as have an AN the same size as your's.  There is a brochure I stumbled on re: brain tumors and fatigue (pre and post treatment) which really outlines what is occuring and how to combat it.  Here is a link to the link of the brochure.  I believe it will be enlightening for you, help answer some questions and note remedies to help the cause... they have helped me.

http://anausa.org/forum/index.php?topic=1969.0
(Please see Stein78's post - 2nd one down - with stein78 "CLICK ME FOR THE ARTICLE")

 
Best wishes,
Phyl

[addictedtohorses]

I have the brochure printing out.  It looks good.  My surgery will be in Wichita, Kansas at Saint Francis Via Christi Hospital with Dr. Gorecki and Dr. Kryzer.  They told me the sooner the better.  I am already having balance problems - the drunken walk and some hearing loss - even though my tumor is so small.  I am 45.  The tumor also grew 1mm in 6 months, and even though we haven't done another MRI we know it has continued to grow as my symptoms are getting worse.  Thanks for your suggestions. 

[nannettesea]

Dear Addicted,
Have you considered radiation therapy?  Your tumor is really small.  After having gone through the surgery with a not-so-good outcome, and having much fatigue in general, prior to surgery, the surgery really knocked me out.

Just my opinion,
Nan

[addictedtohorses]

We talked about all the options several times with both the neurologist and the ear doctor.  They were both adamant that because of how young I was that surgery was the best option for the long term because it is less likely to grow back or to become cancerous as it can with other options. 

[ppearl214]

We talked about all the options several times with both the neurologist and the ear doctor.  They were both adamant that because of how young I was that surgery was the best option for the long term because it is less likely to grow back or to become cancerous as it can with other options. 

Hi addicted.

I'm a bit confused by this last post.  Please know that radio-"surgery" options do not have a high cancer rate as it's is a different kind of radiation used (not disposable, such as radiation used on cancer patients).  I have all of my hearing intact and minimal side affects.  I know some dr's that are not versed on certain medical protocols may say certain things and certainly, scare tactics are used as well.... so please do your research carefully. Having microsurgery is fine and many opt that direction, but please research your AN treatment specialists carefully, research your options carefully and know that whatever you decide is what is best for you at the time of your treatment.

I know many here with successful microsurgery. I know many here (myself included) with successful radio-surgery.  AN's have a low percentage of regrowths, but they do occur, regardless of what treatment option is chosen.

Please keep these things in mind as you do your research.

Thanks.
Phyl

[Jim Scott]

Bruce:

Thanks for your comments.  Informative, as always.

I read the report by Dr. Sheehan regarding the success of radiation treatment on small (under 3cm) AN's.  Although I don't pretend to be in his league, medically speaking, I do tend to agree with his conclusions - and the single (positive) response that was offered.  Had I had the option of radiation-only treatment, I'm pretty certain I would have taken that route, rather than microsurgery.  I say this as person who had a very good outcome from microsurgery.

Actually, my neurosurgeon follows a slightly different path for large tumors, such as I had (4.5 cm).  He resects as much of the tumor as he can - using nerve monitoring to avoid nerve damage - and then, attacks whatever remains with fractionalized radiation treatments.  He works with a radiation oncologist to determine the exact path, duration and intensity of the radiation.  I completed my 26-day radiation treatment regimen on October 16th - and had no ill effects.  I'll have a 'fresh' MRI in a few days (12/1) to be used as a baseline for future MRI observations.   Both my neurosurgeon and radiation oncolgist are extremely enthusiastic about this treatment (microsurgery/radiation), claim it has an almost-100% success rate (no tumor re-growth) and believe that I will be another success story.  Based on the apparent loss of almost all my previous AN symptoms so far, I can happily agree with their assessment. 

In any case, while there are many approaches to AN treatment, it appears that radiation is a very viable treatment for under-3cm  tumors.  With the information now available regarding radiation treatment for AN tumors, I would assume that any potential microsurgery patient with a 'small' AN would explore and seriously consider the radiation approach.  I would.


Jim[/color]