dealing with watching and waiting

[Beth Rosenthal]

I still get nervous that someday my tumor will grow, even though I haven't needed brain surgery in 20 years. I get all of my old symptoms every years before my annual MRI. How do you deal with waiting and watching?

[BrandiS]

beth, check out Montel Williams new book. Not sure of the name of it, but he discusses how he deals with TMN caused by MS.
peace.

[Don Lovett]

Ive been on watch and wait for about 3 years now. I have and do get depressed sometimes, so I try and stay positive. And like Beth, I want to spread the message of hope.

[BrandiS]

Beth, have you ever thought that perhaps the symptoms you get before your annual MRI are just a bad habit??? I know it happens to me every time I have to go for one. I'll get mild headaches and crazy stuff. I think it is just our bodies way of reminding us what we've been through. AS IF WE NEED REMINDERS!

[Beth Rosenthal]

Hi Tracey. Please don't diminish what you're going through. It's very scary and overwhelming whenever you deal with a serious health problem. I started this site so that no one needs to feel isolated and alone. Use the blogs to express yourself. You might feel better.

Tracey Rae Burton said:

im at the point where i get sick and butterflys and cry just thinking of everything lol.. i guess im a sissy lol

[Regina]

This week is 12 years since my surgery & it never fails that I get "symptoms" right before my MRI. It's very anxiety producing, so I have found that I need a lot of support during those weeks leading up to the MRI & I need to surround myself with supportive people.

[Cheri]

Wow thanks Beth I thought it was just me. But reading through all these comments shows that are brains are very complicated things that can do crazy stuff! :) I'm new to this merry go round too. I went kinda nuts right before my last MRI, starting tripping, couldn't add again, headaches...the stuff that sent me to the doctor in the first place after a few months of improvement. Then I fell apart up until I saw the Doctors at Mayo. Amazingly two weeks later I feel better again (not perfect but better). Hopefully by knowing we all do the same thing we can learn and grow together! I hope you never have to hear the bad words you once did again! My thoughts and prayers are with you all!

[Terri Lobato]

I too am on "Watch & Wait" for my tumor. (It is either a Meningioma or a Choroid Plexus Papilloma - they won't know which without a biopsy - so I am told). It sucks. Not knowing if any symptoms I am dealing with are from the little bugger, or from Fibromyalgia or my many Migraines (both of which I also have). Keep being told that it "Shouldn't but could be" because of my tumor, given its small size and pattern of slow-growth. But, it still bugs me to only be able to do follow up MRIs for comparison. I know the "risks outweigh the benefits of surgery" at this point, but I also feel that why do I have to leave it in there, to keep dealing with this? I guess that I am supposed to wait til I start having seizures or hydrocephalus for it to become "serious" enough to warrant surgery?

[Candy Wilson]

I am totally with you, Terri. I am newly diagnosed, and am waiting 6 months is have another scan in December. In the meantime, there are 2 things growing in my head. I, like you, am wondering, what is the limit? Is there any way to get even an inkling of an idea what my future holds? Kinda nerve wracking.

Terri Lobato said:

I too am on "Watch & Wait" for my tumor. (It is either a Meningioma or a Choroid Plexus Papilloma - they won't know which without a biopsy - so I am told). It sucks. Not knowing if any symptoms I am dealing with are from the little bugger, or from Fibromyalgia or my many Migraines (both of which I also have). Keep being told that it "Shouldn't but could be" because of my tumor, given its small size and pattern of slow-growth. But, it still bugs me to only be able to do follow up MRIs for comparison. I know the "risks outweigh the benefits of surgery" at this point, but I also feel that why do I have to leave it in there, to keep dealing with this? I guess that I am supposed to wait til I start having seizures or hydrocephalus for it to become "serious" enough to warrant surgery?

[Susan Goodwin]

I am new to this Beth, So I have not figured out a strategy yet expcept to take refugr in the fact that the tumor I have (DNET) is very very slow growing. I'm about three weeks past my surgery and stilo not feeling myself again though,

[Dellus]

I guess I take a positive attitude and expect the results to be positive. Since I no longer have sysmptoms of growth I am reassured of my outlook. I look forward to the results to reaffirm my wellness and peace. I really don't have control of the outcome anyway. I involve my spouse in the follow-ups - I think it could be lonely doing it alone and harboring anxiety.

[Joy]

I found it of interest that doctors treating prostate issues consider "watch and wait" a treatment option known as, "active surveillance". When we think of it that way {as a sentry guarding well being} rather than "watch and wait"{which to me implies waiting for the boom to fall} it is probably a bit less disconcerting. Hopefully neuro people will give that idea some thought!! I had ns July 2007 and I do better sometimes around mri time then I do at others. I simply accept that this is the nature of the situation. Feelings are just feelings, they come, they go. Accepting rather than judging them allows me to move on. I did an NIH clinical trial based on Jon Kabat-Zinn's work/book "Total Catastrophy Living". He uses a technique known as mindfulness based training and also recommends guided imagry. I have found both to be very helpful. I still rely on valium from time to time to do the actual mri. I am down to needing only 2 1/2 mgs when I do use it. Believe me, I've come a long way... It also helps to be able to "dialogue" with others, like us, who understand. It's okay to admit it's a challenge on this path...and that there are companions on the journey. All the best, Joy

[Sonia Jones]

My daughter, has a Brian Tumor as well adn all your concerns that you have here is exactly what I think at times, she is ona watch and wait and will have her 2nd MRI on Monday Sept, 14th, 2009. she has stated to show seizure activity, the headaches and fatigue are her killers,a dn last week she woke up temoary blind for about 2 mins...her tumor is 4.5 cm x 3.6 cm in size as per her last MRI....what a fraturing time, however it's always good to coem here to share.....

Terri Lobato said:

I too am on "Watch & Wait" for my tumor. (It is either a Meningioma or a Choroid Plexus Papilloma - they won't know which without a biopsy - so I am told). It sucks. Not knowing if any symptoms I am dealing with are from the little bugger, or from Fibromyalgia or my many Migraines (both of which I also have). Keep being told that it "Shouldn't but could be" because of my tumor, given its small size and pattern of slow-growth. But, it still bugs me to only be able to do follow up MRIs for comparison. I know the "risks outweigh the benefits of surgery" at this point, but I also feel that why do I have to leave it in there, to keep dealing with this? I guess that I am supposed to wait til I start having seizures or hydrocephalus for it to become "serious" enough to warrant surgery?