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Has anybody else experienced complications from cyberknife brain surgery? I had the procedure done in August of last year and unfortunately, I've become ill from radiation induced swelling of the tissue surrounding the tumor. My doctor is hopeful that with the steroids I've been prescribed, I should be through this in 4 to 5 months. I sure hope so because I'd rather not have to resort to open surgery. Your thoughts would be welcomed.
Raeanne
Tinnitus Anxiety Surgery Brain tumors Pain Confusion Decadron Hemangioblastoma
NIH just informed my mom last week that surgery was out of the question for the tumor on her brain stem. The doctor said the the tumor was to wrapped around the brain stem. He said we should check with an invention radiologist for possible radiation treatment in our area -- Oklahoma City. He also mentioned chemo therapy. Time is getting to be an issue. Any thoughts out there?
HI there, how did it go back in May with your CK? Sorry its been crazy in my life for the past few months through the first quarter of the school year.... I am doing pretty well although not seeing any marked improvement yet (after 7 months) but still am trying to stay optomistic. Have not had an MRI done again yet, we are waiting till after the first of the year.
Hi LRaye,
Please keep me (us) posted as to your progress. Cyberknife is just something I have found out about on the internet. I am from Ontario Canada and just contacted the only hospital in Canada that has this machine and it is in Montreal. I also contacted a Dr. in the States because my Vagal Schwannoma (10th crandial nerve) is 5.6 cm X 4 cm so the Dr.'s in Ontario told me there is nothing they can do to help me and not a surgeon in the world perform a successful outcome.
Keep your chin up... you are a positive person! :)
Rhonda Edwards
Hey there. I have to say that the procedure was faster than I thought. I had 3 sessions, and was told they would be an hour to an hour and a half each day. They actually were right around 45 minutes and listening to my favorite music made the time fly. The mask they make to form around you is rigid and they clip it to the table to keep you from moving. It took me a minute to breath through the initial anxiety of being clipped in with a mask, but after the first few minutes, I was fine. I just laid there in amazement that I was not feeling anything but that I was "killing" this thing with every second that passed. I have not had any major side effects. I was extremely tired following the treatments, but went back to work after being treated in the mornings, and then basically went right to bed when I got home from work. They told me I MIGHT have some minor hair loss, but I have not noticed that at all. My right eye did water for about a week straight over Easter, and I have had just a few minor "twinges" of pain, I wouldn't even call them headaches. I have not noted any improvement in my vision at this time but it has only been about 6-7 weeks. I went for my follow-up consultation at radiology and asked if sometimes the symptoms get worse before they get better, and the answer was "yes they could". So I am just now waiting until I have my eye exam in a couple of weeks, and my first post-treatment imaging in July to see what, if any, changes have taken place. I wish you luck!
Again, please do not compare results of using SRS on a hemangioblastoma (a vascular tumor) and an oligoastrocytoma 2 (a different cell type).
These two tumor types respond differently to the application of radiation, so their responses are not comparable.
Perhaps someone who has had SRS for a VHL hemangioblastoma could share their experience?
Best wishes,
Joyce
Hi LRaye,
I am dealing with a similar situation like yours and planning to have cyberknife within a week or two.
I would like to know how you are doing and did you have any side effects during or after the sessions
Oligoastrocytoma 2 is of course a different kind of tumor than the hemangioblastomas we deal with in VHL. The discussions here are focused on hemangioblastomas, because they respond differently to the application of radiation.
For a discussion of oligoastrocytoma 2 and stereotactic radiation, T.H.E. Brain Tumor site will be more specific to your needs.
All best wishes,
Joyce
Hi LRaye,
MRI, PET and MRS found the dreaded tumor is back, oligoastrocytoma 2. I too lost some vision since surgery in 2005, which has noticably been getting worse. Neurosurgeon today, recommends me going the cyberknife route of treatment, going so far as even saying it's very possible my vision may be restored. Due to location, he feels surgery would damage my vision even more. I'm anxious about walking off that table, and having more deficits, or as I read, it may take weeks before I actually notice changes. Those will be LONG weeks! I just signed up today, looking for answers. I also am a member of T.H.E. brain tumor site. They also have a wealth of information.
What you describe is certainly a very tricky situation. There are too many variables for us to give a sensible recommendation here. If you would like to send your films to one of the experts in another country who might have more experience with VHL tumors than is currently in India, we would be happy to assist.
There is a US doctor coming to Mumbai April 10 to speak to a group of doctors about VHL. Send a message to ranjana@vhl.org if you would like to meet with him during his trip to India. She is working with a growing group of doctors studying VHL in India.
Best wishes,
Joyce
I just had my first CyberKnife treatment yesterday at St. Louis University Hospital. I have a 4 x 2.5 x 2.7 skull based meningioma that is encasing my internal carotid artery, optical nerve and cranial nerves 3 4 5 and 6. I have been dealing with vision changes/loss in my right eye since right before Thanksgiving. Through months of MRIs and CT scans, PET scans and more they found this "monster" in my head. Traditional surgery have had more risks than benefits and I would have more deficits coming out than I went in with. The most uncomfortable thing through the CK procedure is the form that I lay on is very rigid and digs into the back of my neck, the mask is a bit restraining but once I got "in my zone" I could deal. It will be a few months before we know the effectiveness of the radiation, but I feel very confident that it was the right choice for me. The size of my tumor was never really an issue. I think the size only matters in relation to the location. GOOD LUCK TO ALL!
hi raschi,
thank you for this valuable information. i really was not aware that there could be such a varied response to radiation, and that no two individuals will have the same response. given that, do we have enough data on the results of cyberknife to say it is safe to use on the hemangioblastomas of VHL? i understand that the NIH here in the U.S. no longer recommends cyberknife for VHL brain tumors. my surgeon told me my poor response is rare, but i wonder how many casea of radiation injury there are, and what we could have done differently to have avoided this injury.
i have not given up hope of improvement and i am getting better, but the progress is extremely slow. it is true that all is not within our hands, but i do think that a dramatic decline after cyberknife is an indication of complete failure in treatment. regards, raeanne
Hi Raenee,
First of all, don't lose hope. I'm sure with time your symptoms are going to reduce. All these effects of radiation depend on dose, duration and location as mentioned by you. Besides, each one's body is different and no two person's outcome can be compared. How your body is going to respond in a similar situation is a very important variable. Making an informed choice is important but then not everything is in your hands.
My best wishes,
Rashi
raschi,
i read that radiation injury can be linked to dose and volume of the treatment. in my case, there must have been error somewhere for the results to have come out so badly. my neurosurgeon successfully treated my cousin, who he said had an even larger tumor in the same location. he told me this before i got sick--now he says the injury is because of the location, which contradicts what he said earlier. do you have any theory of what went wrong? thank you, raeanne
Hi Mily,
2 things are very important here. One is that the brain being placed in a enclosed space that of skull, can't accomodate too many extra things and starts producing symptoms. So you can't wait for too long. Secondly, as per my knowledge, your tumor size is big enough and warrants a surgical removal. It won't go away with non-invasive means. The only thing in favour for you here is that if its a meningioma, its a benign tumor but that does not mean that you can wait for very long. But you can plan your surgery and please get it done before it creates more problems and you land up in an emergency. There are very good neuro-surgeons in India and they would do their best to excise your tumor. Are you a patient of VHL? Have you ever been operated before?
Cheers,
Rashi
thanks for your responses. in retrospect, i should have used more caution when agreeing to cyberknife. as the months progressed i became worse. i am now bedridden, have a tracheostomy because i could not swallow, cannot eat or drink and have a g.i. tube for feeding. i had no symptoms before the cyberknife, so i donot understand why this happened. my surgeon did an about face and now tells me my symptoms are permanent with only a 30 to 70 percent of improvement over the next 2 years.. he also said that my complications are considered extremely rare. well i did read in a past vhl newsletter that the same thing happened to another vhl patient, but i have not heard of any other cases.
i think there ought to be more warnings and disclosures when it comes to cyberknife--now the dr. says treatment went awray because of size , location and previous surgery in the area--all of which they already knew. after all of this, i do not recommend cyberknife for hemangioblastomas, which always swell. perhaps he failed to calculate the effect of swelling in the area because there was probably no room to accommodate the swelling. has anyone heard of this?
Thanks shawn for your kind reply. i am also of the same opinion as yours that if gamma cannt do it then probably cyberknife wont be able to do either. but i read somewhere that cyberknife has more precision and can do larger tumor as compared to gamma. So just trying to check the facts.
mily
hi rashi,
thanks for your reply. I am based in delhi and have consulted the heads of neuro-deptt of AIMS, apollo, MAX in Delhi and Hinduja in Mumbai. They all had advised me immediate surgery last year. but i chose not to go for that and keep a watch on my meningioma as its a slow growing thing and i didnt have much of problems due to this. All of them said one more thing that due to the location of my tumor( which is stradling my main artery supplying blood to my brain and left optic nerve and chiasm) they wont be able to remove it 100% even with surgery. Its a big one in size 4.4cmx3.1cm. unfortunately meningiomas return , always, again, even if they are 100% removed. So i prefered to wait ... like living near a volcano... and keeping a watch on it by getting an MRI done every 6 months. i dont know if my decision is wise or not, but, By the grace of God, its not changed much in size so far and i am happily waiting for science to come out with some new and better technology to remove it non-surgically. I came across this news tht Accuracy has launched cyberknife in apollo , chennai, recently . so thought will check the options again,if anything is possible in this for me or not.
Hi Mily,
I'm a doctor from India and can relate to your problems as I have had 2 brain surgeries myself.would like to know slightly in more detail about your illness. Where are you placed? Whom have you consulted? You can send me a personal mail if you wish to.
Mily,
I don't think that there is a major difference in "cyberknife" vs. "gamma knife." I believe it is just the name of the machine and slightly different applications. The "gamma knife" is the first style of laser machine used for this type of surgery. With gamma a "halo" is fastened to your head to hold it still so the laser precision is accurate and it's accuracy is checked a certain number of times per second. The cyber knife's "halo" is different and the accuracy is checked at different intervals than the gamma. So,my best guess would be if your doctor is saying that gamma won't work due to the size of the tumor then I don't think cyber knife is an option as well. It is best to follow the info that Joyce provided and if the doctor that you are seeing isn't an expert on VHL or that type of tumor then I would contact one for the sake of having a second opinion. I hope that everything works out for you.
Best of luck,
Shawn
hi
does anyone here know the maximum size of tumor that can be safely treated using cyberknife? I have a meningioma of about 4.5cmx2.5cmx3.2cm size. and they say its too big to be treated with gamma knife. I am looking for some non-surgical / non-invasive option, if any, available. pls help and inform me if anyone knows about it. In india we have only gamma knife so far, no cyberknife yet.
mily
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