Is the cure worse than the condition?

[stevecms]

Sometimes in life there isnt a choice.When they finally found the an they said without the op i had about 3mths to live.So there was no choice for me.On a positive note the horrible trigeminal pain has gone.I couldnt talk,eat function,a bad time.But i feel i have swapped the pain for some minor problems ie altered taste,ssd,numb heavy head,minor balance problems,lack of confidence,but at the end of it glad to be alive

[Rivergirl]

I have been away for a while but want to thank all of you for your honest feelings about my question, your input is so helpful as eventually almost all of us have to make that decision and it is scary.  It is reassuring that most of you would do it again.  Thank you so much.

[Captain Deb]

For me, my cure was way worse than the condition.  My symptoms were not really troublesome--hearing loss, stuffy feeling ear and some headaches that may or may not have een related to the AN.  They were very manageable with 2 Advil and a little rest.  At 6 months post-op I was bed-ridden with daily horrid migraines, was living on narcotic pain meds, went to the ER at least 6 times because the pain was so bad my husband was afraid I was having a stroke.  This went on for 3 years.  I finally found a specialist who was able to put me on a drug cocktail which at least got me out of bed a bit.

I believe all those drugs really affected my over-all health as now I have an irreversible stomach condition (from over-use of OTC NSAIDs) and osteoporosis, which is affecting my sacroiliac joints, causing me to be in a lot of pain for over a year.  The meds I was on block calcium absorption (no doc told me that I had to take extra calcium) Right now I am trying non-systemic and holistic remedies, like an anti-inflammatory diet, supplements, nerve blocks and Botox, and those last two are pretty pricey, believe me, even with MEDICARE. My previous insurance refused to cover the Botox.

It took 4 years, but I finally won my disability claim.  I totally lost my lucrative art career--I was selling work for $4000- $9000 at 4 different galleries.  They have all dropped me because I cannot produce any new art. I also suffer from depression, making it even harder to work. I cannot do anything physical without triggering a headache. Even taking a walk brings one on.  Before surgery, I used to do things like renting a boat and taking my hubby on a sailing vacation in the Virgin Islands (I used to be a charterboat captain down there), hike the Appalachian Trail, windsurfing, etc.  I was extremely athletic.

Do I regret the surgery? Absolutely.  I wish I had at least W&W for 6 months to a year and then researched more on gammaknife of cyberknife.  I made an emotional decision.  My favorite cousin and best buddy had just been through a malignant brain tumor and I just wanted the thing gone.  I met a man at one of the symposiums who has been in W&W for eleven years and his AN just quit growing and he's doing great.

 I have mixed feelings about flying across country to have it at House in LA.  I know I had among the best surgeons in the world, but the aftercare was difficult in my small town here in North Carolina, and I could not tolerate or afford to fly across the country again to see why I was having such headaches.

So much for the horror story.  We are all different, but it's really a crap shoot.

Capt Deb

[4cm in Pacific Northwest]

 I have mixed feelings about flying across country to have it at House in LA.  I know I had among the best surgeons in the world, but the aftercare was difficult in my small town here in North Carolina, and I could not tolerate or afford to fly across the country again to see why I was having such headaches.

So much for the horror story.  We are all different, but it's really a crap shoot.

BIG ole gianourmous Canadian Mother Bear HUG coming from Oregon being sent to North Carolina... for the Captain

HUGS

DHM

[Larry]

Deb,

Over the years I've got to know a lot of people's aches and pains and issues but when its put into such a concise post, its really upsetting. I do hope you (and a number of us) get some relief down the track. As I have said beofre  "Oh for just one day without a brainwreck".

hugs and stuff


Laz

[Captain Deb]

Sorry, I didn't mean to scare anyone.  It just burns me up when docs want to do surgery on folks with mostly asymptomatic tiny tumors without monitoring their growth for at least a year.  It also seems that people with smaller tumors have a greater risk of post-op headaches. One of these days there will actually be a consensus of opinion about how to treat small--less than 1cm--tumors.  Right now they leave it up to the least informed people--US.

Capt Deb

[yardtick]

Words of wisdom Capt Deb!!! 

Anne Marie

[Jim Scott]

Captain Deb makes a significant point when she posts that she now considers her decision to undergo surgery for a relatively small AN was made on emotion instead of an objective, considered analysis that may well have resulted in doing nothing at all or, most likely, having the tumor addressed with irradiation instead of surgery.  She is correct about some doctors recommending surgery for AN patients that may not need it and could benefit from observation ('watch-and-wait').  I was fortunate to find an AN-experienced neurosurgeon that considers the patients quality of life before he recommends/performs surgery.  Although my AN was far too large (and severely intruding on my brainstem) for anything but surgery, I once recommended my neurosurgeon to a fellow who lived in my state and inquired about him via my posts on these forums. He made an appointment and when the doctor saw his MRI (he had a small AN) he immediately informed him that he wasn't a candidate for surgery but could benefit from radiation.  He quickly made an appointment for the man (getting him in almost instantly) with a radiation oncologist that he had previously worked with and who was located in the same medical center.  The neurosurgeon personally escorted him to the other doctor's office.  The man eventually chose to go elsewhere for treatment but I was impressed with 'my' neurosurgeon's consideration for this fellow AN patient.  It reminded me of why I had such great confidence in him when I underwent my surgery. 

As Deb noted, choosing whether to have surgery, radiation or just observe (via MRI scans) to see if the AN grows remains a bit of a gamble (O.K., she used the more earthy metaphor 'crap shoot').  Acoustic neuromas are definitely a 'challenge' to both patients and doctors.  I commiserate with Deb, knowing (through her posts) the torment she's endured since her AN surgery and the subsequent problems that have emerged to plague her. 

Frankly, as I stated in my original post in this thread, posing the question 'is the cure worse than the condition?' is always going to elicit a wide variety of responses.  Those with good outcomes will answer affirmatively (as I would).  Those with less-than good outcomes, negatively, while those, like Deb, that believe they might have waited will have more complicated answers but from a different perspective - that of someone who now regrets not taking the time to analyze her AN situation with a bit more diligence and make a decision on facts and logic, not emotion.  Something that is often easier said than done.  An unsmiling doctor in a lab coat telling you "you have a brain tumor" can have a numbing effect on a person. 

Captain Deb is a valued member of these forums and has become our 'go-to-gal ' for headache questions.  A position she earned the hardest way possible.  I appreciate that she offers her unique perspective here and hope that it (and the others) enlighten those looking at AN surgery  (or radiation) with more emotion than may be prudent, can benefit.

Jim       

[mk]

To further on the points that Captain Deb and Jim made, I wanted to say that in many countries it is standard practice to put patients with small ANs in W&W and not recommend treatment unless growth is established or symptoms become too troublesome. I remember that Ann (Keeping up) had posted once an article written by Canadian doctors Rutka et al  who are well respected in the field, substantiating this approach.

Marianna

[newmommyLA]

I agree with Capt Deb.  I had a small tumor and got very emotional about getting it out ASAP.  Mine was not causing me any problems and I had just had a baby with my hormones going crazy.  I wish I had waited for at least one MRI to monitor growth before I went under the knife.  I convinced myself that all the percentages quoted were in my favor and I was not even very scared before surgery.  After surgery, I was shocked at all the complications I experienced and I never imagined what life would be like SSD with crazy tinnitus.  I have been trying to be positive about my recovery (only 7 months now), but everyday I feel sadness and regret that my quality of life has been greatly reduced.  I wish I hadn't been so anxious and waited, not a long time, but long enough to see if it was growing and how fast.  I also think sometimes small tumors are harder on the balance recovery and total hearing loss which happened to me during my surgery can be very shocking to your brain.  I think it's easier when people have lost a little over time and it's not so disorienting.

I have a good friend who had surgery because her AN was huge and pressing on her brainstem.  She urged me to wait, but I did not take her advice.  I was very stubborn and honestly believed my recovery was going to be fairly easy.  I wonder still about the 70% chance of saving hearing quote that I was counting on and wish I had not been so over confident without really considering the things that could happen.  I feel like I was cheated out of my baby boy's first year as I have suffered so much dealing with the noise in my head and the noise any baby is going to make.  Not a good combination.  I wish my docs would have recommended I wait a little and enjoy my new boy.

I realize we all have different experiences and I am grateful that I don't suffer some of the other possible side effects and that my facial function is mostly back to normal.  It was really a nightmare for me for at least 3 months, but things are getting better.  I'm just scared to think about living with this noise for the rest of my life.  I'll never lose hope that things will improve and there will be some new relief in the future.  I wish I had known how disabling tinnitus can be and I did a ton of research before my surgery, but never worried much about the noise.  It can change your life.

Maybe we should have a separate thread here in the Post Treatment section about tinnitus?  I never know where to find posts on the topic and where to rant exactly.  I do believe tinnitus is different for those who are SSD.  I've spent a lot of time on ATA support groups and found that the things that soothe other sufferers like the shower and many masking noises only make mine go through the roof.  No doctors seem to understand this either.

I hope we all heal over time and find a way to look back on this experience without regret as it only makes you feel worse.  We all move forward from here.

Here's to continued improvement for all!

Hugs,
Amy

[Kaybo]

Donnalynn says it so well - AMEN, SISTA!!!   

K   

[ombrerose4]

For some of us it means being here on the forum sharing our bad days, or not being here at all. I'd much rather be here to share

[Larry]

i think we are all pretty well aliigned here in that everyone is different. Whilst a for a few of us the cure was worse than the condition, for many others the cure was successful and that is great.

I look forward to the day when AN's are zapped with a laser beam in a very simple procedure 9we can dream can't we?) till then I'm confident that our posts help others in making up their own minds one way or the other


laz

[staypoz]

There are so many calculations that go into the decision!!!  Like Capt Deb, I had a very small tumor, and began having incapacitatiing head pain two weeks after the surgery.  Pre-surgery, I was having moderate tinnitus and balance issues and just wanted the tumor out.   I also was working at a job where they were starting to cut benefits and I was still relatively young when I was diagnosed.  I decided I'd better have the surgery while I still had good insurance and sick leave and would likely have an easier recovery because of my age (so much for that last thought!)  I don't regret the decision I made, but I wish the docs had been more forthcoming about the potential for headaches.  They were probably the last thing the doctors listed among the many potential side effects and what many of us experience is not a headache, it's a HEADACHE.   

staypoz

[Mickey]

When I first new of my AN 3 years ago I was so happy that I found this forum. It gave me the information I needed to help make a good decision. With all the pros and cons of all the treatments I decided to Wait and Watch. I figured with the symptoms I had for so many years anyhow and the size of the AN .12x.06 and my age 59 why take a chance on coming out worse. So here I stand today with every thing still the same as then, so far so good. Actually with the pro active healthy lifestyle I may have even improved a little. Here`s hoping that this option will last forever. Best wishes, Mickey