ANA Discussion Forum
Archive => Archives => Topic started by: shoegirl on March 07, 2006, 11:32:02 pm
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Hi,
I was wondering if anyone could share with me any symptoms you have had post radiation that were related to your tumor swelling? I've had a lot of really intense migraines lately. I had them in the past but the frequency has slowed down a bit in recent years. So I am not sure if this is related to CK or just migraines as usual. My thought is perhaps the AN is swelling?
Any thoughts would be appreciated!
Thanks! Suz
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Originally I didn't have any symptoms at all...(GK in Nov of 2003), until the summer of 2005 (July), when my ear glogged and I was on a steroid. Since then my tinnitus has been louder in that ear. The clogging fealing went away...
Gary
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Hi Suz and Gary,
Researching GK and CK now. Was told that I should not be surprised that if after treatment, after a few months, the clogged feeling, tinnitus, headaches, etc were actually a "good" sign of the tumor doing it's thing of swelling. Suggestion? Maybe check with your dr's to see if Decatron (or such) are needed now to help in case the nerve/tumor is swelling and prepping to "implode"?
Just a thought.
Phyl
(will monitor this thread carefully as I have a feeling I may need to reference it).
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Thanks for your responses, I am going for my first post CK MRI (3 months) in a few days and then of course will meet with the dr. It will be interesting to see if my hunch is correct.
What is Decatron? A steriod?
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I was given Decadron for post op swelling. It is a steroid. Chemo (cancer) patients also get Decadron.
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Hi Shoegirl,
Boppie is certainly correct re: Decadron. I have been told this past week that it's a steroid used to help reduce swelling, typically prescribed in 4 mg/dose, 3 times a day (give or take) for approx first 2 weeks after radio-surgery. I've heard to keep a few on hand for down the road as well as the "necrosis" begins and the tumor/nerve swelling occurs.
Mark, hoping you can add to this. I know I'm forgetting something (old age, ya know?)
Phyllis
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Shoegirl,
Phyl is right that decadron is probably the most common steroid given to address any post treatment nerve inflammation or swelling. I certainly can't speak to how various radiosurgical centers elect to prescribe them, but my experence with them was very minimal and only based on symptoms. At the end of my first of 3 treatments I was given one decadron and one anti-nausea pill, the second and third day I was given the decadron, but declined the anti-nausea since I wasn't having any issues. I didn't have anything prescribed after the three days of treatment at all until I had my one vertigo episode about 6 weeks later which only lasted for a couple of hours. I picked up a prescription for two weeks and used them for 2-3 days, didn't like them and stopped with no further issues. So my sense is that they are only offered if there are actually symptoms from the treatment that the doctor feels they would be helpful to address.
Mark
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Hi All,
Well, we shall see what is going on in a few days, Monday is my first post CK MRI. Looking forward to seeing if anything has happened. Not getting my hopes up though. 3 months is very early to see results. I am curious what the dr. will say about the headaches. Don't really want to take a steriod but will if it is necessary.
Will keep you posted on the results of the MRI.
Thanks for your responses!
Suz
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Hey Suz,
wanted to see how yesterday's appt went? All ok?
Phyl
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Phyl,
I just had my MRI yesterday. Piece of cake! Tomorrow is my followup with my dr. I am trying not to be anxious. I am very curious though to see if anything will be different.
Did I read on the CK site that you are going ahead with CK at BI? If so, congratulations - the decision process is so hard! It is a relief to have that part of it over and focus on what is ahead. At least it was for me. I felt so peaceful once I had made my decision, less anxious. I think researching, analyzing, finding the right doctor, the shock of having an brain tumor, etc is sooooo stressful. Finally be able to make a decision about something made me feel like I had a little control over what was going to happen next. At the beginning I felt like everything was out of control, lost, and scared. Now I am able to take things a step at a time and hope for the best.
If you are going ahead with CK when will you be able to do it?
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Hi Suz,
Thrilled to hear about yesterday and dying to know what the dr tells you at your appt. Please keep me/us posted as I'm on your heels in treatment and following your progress.
Yep, booked for CK. Beth Isreal, week of April 3. They wanted to do the treatments next week but due to work (I know, I know), I had to postpone by 2 weeks (didn't think a 2-week delay would be significant at this point).
So, April 3 I rock and roll.. and as for you, please let me know what the dr says about your MRI. will be curious to see if the tumor sweling has begun from the CK or if it's turning darker or spots yet (necrosis?). Sending you hugs for a great appt!
Phyl
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Phyl,
Thanks for the hugs! Good luck with the CK! If you have any questions let me know - would be happy to answer them. I read your post on CKsupport to the dr about going up and down the stairs, if you need to have someone stay with you, etc.
I couldn't drive after my CK, only cuz I took ativan - wasn't sure how I would feel about the mask. So you may want to have someone drive you to your treatments. Also, I had nausea (spelling) and was dizzy afterwards too. So ask for some nausea meds incase you need them. I waited until the last day to ask for the meds. And I wasn't able to drive for a fews days afterward until the dizziness wore off. Everyone is different but just thougt I'd share. Oh - and don't bother with your hair or makeup for your mask fitting and treatments. It is a lost cause! And find some good music to listen too during your treatments.
I'll keep you posted on what doc says tomorrow.ÂÂ
Thanks! Suz
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Thanks Suz, back atcha! :) Will keep you posted and think I'm pretty well armed for the treatments. I appreciate the help offer and got my dad and best friend, Kate, to help me out. As long as the dog doesn't drag me down the stairs, I think I'll be ok.
I have ativan as well but haven't had to take it in a LONG time. Got my 10mg valium as a back up as well. Will see how I do the first day with the mask (sans hair and makeup). They did tell me they are planning on giving me 4mg Decadron and will confirm everything at next Tuesday's Planning meeting. Have a few more questions for them as to the dose amt of the treatments and such, so should be interesting. Planning on bringing some good music (my Yanni for relaxation and some U2 to get the team rocking) and ready to just get this overwith. I am so so ready to move on, ya know? :)
Let me know how tomorrow goes! Got a few guardian angels around my apt, so will whisk one towards you for good news tomorrow! :)
Phyl
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I feel like I've been eavesdropping on some old friends, but your thread is very interesting to me. I am considering GK or CK for my 2.1 x 2.5 cm AN. I have ruled out surgery, because the trauma of it physically and mentally seems too much to handle when there are non-invasive options available.
I have talked to a number of docs and not one has mentioned any steroids. I've read about it on a couple of websites and now in your thread. I have hardly been sick a day in my life, the only meds I take are nexium for some pesky acid reflux and zomig for migraines. No past surgeries, hospitalizations, etc. Since my dad died 13 years ago, I have dreaded any potential contact I might have to have with the medical community. And now here I am with an AN. No local docs that I am comfortable with and I feel so out of touch (I'm in the vast wasteland of Montana, great for the outdoors, bad for AN's).
We are willing to go anywhere for treatment, Boston is as far as Phoenix as far as LA as far as anywhere else. It's all plane trip.
What have been the side effects of your steroids, if any? I'm hearing more and more about dizziness and vertigo, not permanent, right?
Do you feel that your CK treatments (as far as you know to this point) was a better alternative to surgery? Would you do it again if you had the chance to change your decision? Why did you choose CK over GK? Are you close to your treatment center of did you have to travel to get there? If you travelled, how was the trip home?
Thanks and best wishes to all
Sherry
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Sherry,
I wouldn't change my decision, I am so happy with my outcome so far. If I would have went the surgery route, I would be deaf in my left ear. Could have had facial issues and who knows what else. I still have the same level of hearing as I did pre-CK, same balance, no dizziness, and overall feel great! Everyone has different thoughts on what is right for them, and for me the decision was about quality of life. I have 2 small children and surgery would have been hard on all of us. I didn't want to miss out on this time with them. Stastically I had a better chance of life being the same with CK. I choose CK over GK because of the staged treatment instead of one large dose, some feels this has advantages. I didn't like the idea of the headframe with GK. And I felt CK had a better overall program so to speak. Having said all of this I am not against GK and would definitely choose it over surgery. I am not against surgery, everyone has to do what is right for them. Just wasn't the answer for me.
I went to Barrow's Institute here in Phoenix. I do live here but they are world class. They have an Acoustic Neuroma Center, you can check it out on their website. Maggie Varland is the contact and she can help you get scheduled for a consultation and answer any questions you may have. I really liked the doctors there. They have a team approach - so you meet with the Neuro-Ent, Neurosurgeon, and Radiation Oncologist seperately. They all get together and discuss your case and make individual recommendations. I really liked that. They also have CK, GK, and some other forms of radiation there - so you have choices. Two other drs (different hospital) I saw pushed their machine on me and weren't able to answer questions about other forms of radiation. So I found Barrow's to be very well versed on all the different treatments available. Dr. Kresl is the Radiation Oncologist who did my CK and he is wonderful. I felt immediately at ease with him and his staff. Really liked my Neuro-ENT and Neurosurgeon too. As far as the trip home, I didn't have to go very far. I was a little dizzy - so my husband drove me home and after a few days the dizziness was gone.
Stanford is great too. I have heard many wonderful things about their program and Dr. Chang and Dr. Adler. They have a great website too. I know a couple of people who were treated there and said it was great. I probably would have went to Stanford if I had not gone to Barrow's.
Check out the cyberknife support group if you haven't already been there. The doctors will answer any questions you have and you may find a few familiar faces there too. www.cyberknifesupport.org
Oh and last but not least, I haven't had to use any steriod so far. I think typically doctors will prescribe them incase of swelling. The only meds I took during my procedure was some Ativan (to help me relax, but probably didn't need it) and some anti-nausea meds.
Hope all this helps!
Best Wishes! Suzanne
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Sherry,
I know what you mean about living in a wasteland. I live in Oklahoma and surgery was not an option for me here. The doctors do not have enough experience. I chose CK with Dr. Medbery in OKC. I would not change this decision. I found the Cyberknife patient support msg. board to be a great help.
I was scheduled for Trans. Lab. at HEI in L.A. canceled and opted for CK.
I had 3 doses. On the first day I went out to eat and shoe shopping with my daughter. 2nd day more shoe shopping and out to eat. Third day treated my self to an afternoon at the local casino with a friend. Took a week off to pamper myself and cleaned house and painted my bedroom. I did have about two hours of a upset tummy one evening.
I lost a couple of small patches of hair. Nothing much different. Balance bad before treatment and not worse now, just a little different. I go for my three month MRI the first week in April. Didn't have hearing before and don't have it now. I would make the same choice again in a heart beat. I know no treatment for AN is perfect, this however seems like the lesser of a lot of evils. You may be in a wasteland, but you are not alone. I was a basket case before treatment. Just ask Suzanne (aka shoegirl). I ask her about a zillion questions. She is a few weeks ahead of me in this journey.
Sandy
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Suzanne, this thread is helping me MUCH more than you know! and I thank everyone here for sharing all that you have shared thus far. I have to admit my nerves are starting in with only 2 weeks (give or take) to go and I have my planning meeting with BI next Tuesday. You all are helping me to be realisitic in any expecations I may have, you all are sharing great info with me to help me advise my family and friends that will help be with me during that time with any potential outcomes that they should keep an eye open... and most of all, you all are giving me hope in knowing I made the best decision for me and my stoopid AN.ÂÂ
As my Japanese counterparts would say... *"domo arigato gozaimasu tomadachis"
*thanks you very much my friends
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Phyl,
Oh my gosh, you are so sweet! I am happy to share. If I hadn't read other members posts on radiation I could be telling a different story. You are going to do just fine with the CK. Just relax, listen to your Yanni - and before you know it your done. Have you scheduled your mask fitting? Be sure to make sure you feel comfortable with your mask - I was told they can make some very slight adjustment pre-treatment. The idea of course is to make sure it keeps your head in place, but I think they can adjust the area around the chin and throat if it is uncomfortable around your neck. I didn't find it confining but then of course I took some ativan - so I was very relaxed and sleepy and a happy girl!
The best decisions are the ones that bring you peace, and I hope you are finding some of that now in the middle of feeling anxious. You are going to do great! :-*
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just catching up on this thread now *waves hi to Sherry!*
Suz, hope you are doing ok since our last chat! :)
Did have my decadron extended since I got zapped. Am definately having the "full" feeling but only now 4 days post last treatment. Starting the "taper" and hoping that the "balloon in head" feeling will ease. I know to keep an eye for symptoms down the road as well and will have a few decadron available here, if need be. All in all, thrilled with my choice of treatment, no 2nd questioning it and now, just waiting for it to do the trick.
FYI, will have a scan (I think CT, not MRI) on May 8. They want to do a one-month post treatment check/follow up on edema at that point. I gotta say, Beth Israel is going by the true book of protocols (ok, I helped bend them a bit) with my treatment.
FYI, Kennestone Hospital in Atlanta also just got their CK unit!
xoxo to you all!
Phyl