ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Shan1014 on September 11, 2010, 11:30:34 am
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Hello everyone,
I have been checking on the AN issues portion of this forum so much I totally forgot there were other topics! And unfortunately I have discovered the need for radiation information. I just wanted to thank you all for all the good information that I have found here.
I had surgery on the 9th of March and through an MRI done at the end of July, they found the AN was growing back quite fast. The bummer is that it took forever for me to get an appointment about it, then the imaging facility didn't add the contrast pictures to my CD! So some more time came off the clock. Then I met with the Radiation Oncologist who felt the Novalis Tx seemed to be my best option. Anyway.... long story short.... my insurance dragged their feet on approval and I am having a hard time getting appointments in a timely matter.
Here it is Sept. 11 and I have had another MRI yesterday, am scheduled to have a CT scan and Mapping Mask done on the 13th.... then I can schedule Radiation. Sheesh!
I just wanted to let anyone who may want to know - I will be sharing my experience with Stereotactic Radiation with the Novalis Tx on my website if you would like to keep an eye on it:
mymediabandit.com/ (http://mymediabandit.com/)
Thank you & I wish you all well,
Shannon
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Shannon,
Good luck I look forward to reading your journey. Do you know how many treatments you are having?
Rich
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Thank you :) Yes, I forgot to mention that I am having 5 treatments in 5 days.
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I finished my last of 5 Radiation Treatments on the Novalis Tx today. I had a good week of treatment. It was a very easy experience. I just hope it worked. I am going in 6 weeks from for the follow up MRI. Typically they wait 3 months but since mine was growing quite fast for an AN, they cut that in half. I am very anxious to find out how it went. Please feel free to check out my blog on "Radiation" at
mymediabandit.com/ (http://mymediabandit.com/)
Thank you
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Shannon - I liked reading your blog. I am also on the young side for ANs (33 years old) and had a lot of pre-diagnosis symptoms. My AN is 2.9 cms.
Yours was definitely bigger. Did you have increased intracranial pressure? Enlarged ventricles? I felt like at least one doctor was very dismissive of my headaches and full head/whooshing ear feelings upon standing and seemed to think that I would continue to get them after treatment.
I'm waiting for the doctors at Jefferson (Phila) to finish my fsrt plan and just today the facial numbness spread to my tongue. I've been worried that mine is a fast growing AN.
How are you feeling now?
Jean
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Hi, Shannon ~
Like everyone, I'm hoping the radiation you received was successful in arresting the tumor's growth. It usually is. My 'de-bulked' 2.5 cm AN was treated with FSR (26 sessions) and responded by conveniently dying (necrosis). I trust yours will, too. FYI: you have a very interesting blog. Well done.
Jim
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thanks Jim
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Hello,
Just an update. I am 2 weeks post-radiation and will be starting back to work full-time Monday. Not sure if that is the best thing to do but feel as if it may be my only option. I am still a little tired and experiencing enhanced AN effects - double vision, poor balance, and facial numbness. Not to mention the return of AN headaches. I am hoping they will get better soon.
I hope you all are well.
Shannon
mymediabandit.com/ (http://mymediabandit.com/) - click here if you would like to read about my experience.
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This past week was a tough one. I was taken off the steroids for a second time and the headaches really set in. I worked but it was difficult. My hearing is hanging in there although It feels full and plugged. My face and tongue are quite numb and my double vision is strong. My balance and vertigo are also still enhanced. But the constant headaches are the hard part.
I have 5 bald spots on my head. 3 are pretty large and a couple are just dime sized.
I hope there is a turn soon where the swelling goes down.
Hope everyone is well.
Shannon
mymediabandit.com/ (http://mymediabandit.com/) Website where I share my whole experience
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Hi,
I am over 5 weeks post radiation. Doing OK. Really struggling with working while experiencing enhanced AN symptoms, especially headaches. I posedt a thread in another area asking for help with headache pain. Is there something that is working for you? If so, please share with me.
Thank you,
Shannon
mymediabandit.com/ (http://mymediabandit.com/) Radiation Blog
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Hi Everyone,
I come to you with good news today. I had my 6 week MRI/Evaluation yesterday. It hasn't grown for the past 2 months and is showing signs of shrinking. There is even a black spot in the middle (small but it counts!) where the doctor said it has no more blood supply and has died. He also said little by little all the AN symptoms will slowly go away. I can't wait!
I am so excited to get good news for once.
Shannon
mymediabandit.com/ (http://mymediabandit.com/)
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Shannon ~
I'll make this succinct: congratulations!
Jim
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Hello all,
Just a quick update. I am 3 months post-radiation. I had one more quick stint of steroids about 2 weeks ago to make 3 total. My doctor mentioned that often the greatest swelling will occur in the 2-3 month stage after radiation. I know when inflammation is about because my hearing on the left goes out completely and I am not feeling too swell . My doctor puts me on a 5 day stint of full steroids and then a four day taper. It seems to do the trick. I am still amazed that I have been able to retain most of my hearing after having a golfball sized tumor with surgery and radiation in the past year.
So far so good. I continue to have typical AN issues but feel as if I am on the road to recovery. It has been a tough journey and I won't be sad to see 2010 end, but I have also learned a lot along the way. As always, if anyone contemplating radiation with Novalis TX would like to email me with questions, please feel free. Thanks
Shannon
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Hi to anyone reading my journey,
I am just about 4 months post-radiation. Things have been going pretty well until this past week. I think it is both good and bad. Good, because I think my tumor is shrinking. Bad, in that while it is shrinking, it is also moving some nerves around. This past week, I have had several spasms/paralysis on the left side (AN) of my face. Also, lots of twitching on my upper lip and eye lid. When I look in the mirror my eyes are not symmetrical . Nor is both sides of my face. My friends don't agree, but they also said my hair wasn't falling out when I clearly had 5 major bald spots on my head. So, I am not trusting in that. My doctor has scheduled an MRI this week to check things out for sure. I hope it is shrinking but I hope it doesn't take my facial nerve with it!
Other than that things are OK. The fatigue is still sticking around but is workable. I often take naps and lounge around resting on the weekends to prepare for the week. It is getting there. Slowly but surely it is getting there.
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Shannon ~
Thanks for the update but I'm sorry to learn about the facial nerve complications that are giving you some discomfort and angst. I trust that the upcoming MRI will prove the demise of your AN. Please keep us updated. Thanks.
Jim
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Please keep us updated. Best of luck.
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19 week Post Radiation Update.
I have a new MRI from Jan. 28. Don't see doctor until Mar.2 but have spoken over the phone. They still believe it is showing signs of dying but... is very swollen right now.
For the past 3 weeks I have really been struggling with the growth of AN symptoms. I have left work at this point. Every day was such a struggle. I finished my last stint of steroids 2 weeks ago and am now trying to get through this next stage. I have a blog at mymediabandit.com/ (http://mymediabandit.com/) where I go into a little more detail and show the difference in last 2 MRI's if you are interested but here is the list of symptoms I am struggling with now:
Fatigue - I can barely take a shower and change out of PJ's - it just seems like so much work
Numb left side face and tongue - very strong right now
Ears - ringing
Facial Paralysis/spasms - any time I am exerting too much
Nausea
Headaches
Balance/Vertigo issues
Double Vision
Shooting pains on skull - area of surgery/tumor
Hope all are well.
Shannon
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Hello all,
I am now just over 5 months post radiation:
The last month has been a difficult one. This past week I developed horrible headaches, nausea, and constant facial weakness/paralysis. I was put on my 5th short stint of steroids. Those have cleared up most of the headaches and nausea but the Bell's Palsy on the left side is still just as strong. I won't be in to see a Dr. for another week and a half and that is my ENT. Not sure if he will be able to say much about it. It will be another couple weeks before I get into my Neuro. That is frustrating. I have no idea if this is something that is typically temporary and just takes a few weeks to get back to normal or if once the nerve gets bugged, it is done. Any thoughts? I posted that question also in the Facial Issues section.
I have been so fortunate with having limited complications through this whole thing and am concerned that the facial weakness is here to stay. Very bummed.
Shan
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Dear Shan, I've just read your posts and blog and I am so moved. I was diagnosed with a 2.2cm AN four years ago and underwent 6 weeks (5 days a week) of stereotactic fractionated radiation on the Novalis. Like you, my journey has been up and down, up and down and still is four years later. I get new symptoms, worsening symptoms, spontaneous symptoms, and ongoing symptoms - the worse of which are the constant headaches. I take narcotics for pain and don't seem prone to addiction - the meds simply help me function day-to-day. I know taking narcotics is controversial, but I don't buy into the hype as they are my best solution.
About a year after my treatment, I was referred to Dr. Robert Jackler at Stanford University who is an AN expert (he "writes the books about ANs for surgeons"). He was SHOCKED that I was treated with so much radiation. He personally called my doctors to let them know ANs haven't been treated this way since the 1970s. Of course my neuro was totally pissed off - "who does that guy think he is?" and I felt like I was in the middle of a battle. Long story short, I'm at higher risk for all complications and will be for life. The tumor showed necrosis a year after treatment and at three years out the radiologist was concerned that the tumor is enhancing (getting brighter), which can be an indication that it's turned malignant due to the massive doses of radiation. Very few of these tumors turn to cancer, but when they do, the mortality rate is 100%. So, I live with it and have come to trust Dr. Jackler at Stanford who I will be seeing on March 8th. So, the journey continues. I've come to accept that this is my "new normal" and manage my symptoms the best I can. I try to stay in grace as much as possible, but I do slip over to fear and self-pity at times. I wish you the very best as well as all the other AN'ers on this site! Anne
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Dear Shan, I've just read your posts and blog and I am so moved. I was diagnosed with a 2.2cm AN four years ago and underwent 6 weeks (5 days a week) of stereotactic fractionated radiation on the Novalis. Like you, my journey has been up and down, up and down and still is four years later. I get new symptoms, worsening symptoms, spontaneous symptoms, and ongoing symptoms - the worse of which are the constant headaches. I take narcotics for pain and don't seem prone to addiction - the meds simply help me function day-to-day. I know taking narcotics is controversial, but I don't buy into the hype as they are my best solution.
About a year after my treatment, I was referred to Dr. Robert Jackler at Stanford University who is an AN expert (he "writes the books about ANs for surgeons"). He was SHOCKED that I was treated with so much radiation. He personally called my doctors to let them know ANs haven't been treated this way since the 1970s. Of course my neuro was totally pissed off - "who does that guy think he is?" and I felt like I was in the middle of a battle. Long story short, I'm at higher risk for all complications and will be for life. The tumor showed necrosis a year after treatment and at three years out the radiologist was concerned that the tumor is enhancing (getting brighter), which can be an indication that it's turned malignant due to the massive doses of radiation. Very few of these tumors turn to cancer, but when they do, the mortality rate is 100%. So, I live with it and have come to trust Dr. Jackler at Stanford who I will be seeing on March 8th. So, the journey continues. I've come to accept that this is my "new normal" and manage my symptoms the best I can. I try to stay in grace as much as possible, but I do slip over to fear and self-pity at times. I wish you the very best as well as all the other AN'ers on this site! Anne
I hope all is well when you go for your visit in March. Keep us up to date here.
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Thank you for everyone's input. I really appreciate you thoughts and support.
Wow, has this been a hell of a step in treatment. I would take surgery again over these last few months! And that is saying something since I was in ICU for 9 days!
I had a few week where just changing my clothes took too much effort. In Feb., I had weeks where things were changing every hour, the left side of my face totally went into Bell's Palsy, I had so many strong shooting pains on skull, my hearing on the left side went, my double vision was changing constantly. It was crazy! And I couldn't get the attention of either of my Dr.'s. Finally after several calls, one of them put me on decadron and for all the complaints I have about that stuff, it sure helped get me out of whatever dark hole I was in.
Now, the headaches are mostly gone, the skull pain is mostly gone and I actually have some thoughts and ideas. I finally got the attention of my doctors and have had a new MRI and lots of appointments. At one point a few weeks ago, my Neuro felt I should have surgery. But after viewing the new MRI, they decided against it as long as I stay stable. Which I have been for about 3 weeks now.
With one exception.... I have gotten terrible double vision which in turn has affected my balance quite a bit. Doing anything has become taxing because of it.
The dr. said to imagine the black parts that are inside the tumor are like honeycombs that eventually the tumor will collapse on itself. Boy, I sure hope so.
For now, I need to learn to deal with SSD and the Bell's Palsy... I sure hope those come around.
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Hi, Shannon ~
Thanks for the update. I'm sorry that you've had to struggle with various unpleasant problems post-FSR but pleased to read that things are finally improving for you.
As you know, I also underwent debulking surgery followed by (pre-planned) FSR. I had 26 sessions over 5 weeks and received a relatively low amount of radiation, overall. I was blessed to not have any problems and that the remaining tumor showed necrosis within a year of the FSR. In any case, I'm delighted to learn that you're now in the late stage of your FSR recovery with, we hope, the worst behind you and better days ahead! :)
Jim
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Hello all,
I am just a few weeks shy of my 1 year anniversary of have Radiosurgery with the Novalis TX. My tumor was considered large for radiation.
I am anxiously awaiting my next MRI. Last Feb. the you-know-what pretty much hit the fan. Not much has changed symptomatically since then other then I feel better and am not on the couch all day. I am just waiting for this thing to die. If it is.... it is taking it's sweet time. I am still unable to work, applying for long term disability that I hope I won't have to use very long, and trying to get back to the world of the living.
Radiation was tough for me. Not the actual radiation itself.... that part was easy, too easy. It was the swelling of the tumor that got me 4 months later. It probably didn't help that my tumor was larger than most that go through radiosurgery. My prior scans show black spots in the center but no change in size either way. But...I am due for a new one. Hopefully that will have some answers. My tumor is very much attached to my brain stem and therefore, was damaged a bit by radiation.
At this point, I can't say I am a huge fan of radiation for large tumors but... then again...I can't say I like surgery any better either. It has been one long haul and it still isn't clearing.
Be well everyone,
Shannon
Shannon, Removed personal contact info but folks can PM/email you here on the site/forums. Continued wellness wishes to you! Hoping my 5 yrs post-radio wellness helps you with your post-radio journey. Hang tough! Phyl