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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
Raeanne,
I hope that the steroids work for you!! My husband is considering Sterotactic Radiosurgery. Can you tell me how big your tumor was? Where did you have the proceedure done? We are in the investigative stages of looking at SR. We are hoping that it will be a good option for him because his tumors are really small (under 3mm each) but are cautious because of the chance of swelling.
Lynda
Hi Lynda,
The tumor on the brainstem is 1.5 cm. I had the procedure done at Stanford with Dr. Adler. He did tell me that he had wanted my primary care provider to refer me much sooner, as he likes to deal with tumors that are much smaller--the smaller the better. So if your husband's are small, it is so much better and the chances of swelling are then minimal.
Even though I've had the swelling, I still think the procedure was a success and we are hopeful that all adverse symptoms will subside within 4 to 5 months. The tumor has of course stopped growing, but it can take years for it to shrink. I think this is better than open surgery because I already have scar tissue in the area from a prior surgery in 1997.
Good luck to you and your husband.
Raeanne
My first five cyberknife surgeries went so well that I frequently compared the experience to going to the dentist. I was back at work each time within a day or so. I thought stereotactic radiosurgery was an absolute godsend. Following my sixth stereo treatment I got a headache, as you describe, from swelling. My doctor prescribed the corticosteroid 'decadron' and the swelling was controlled. Each time I tried to stop taking the steroid, the headaches returned. I became dependent on the medication and was on it for a whopping sixteen months! I developed adrenal insufficiency (because the supply of the steroid was more than replaced by the pills). Adrenal insufficiency is one form of kidney failure. I was hospitalized and given other medications. The side effects from taking decadron can also be devastating.
A caveat. Current guidelines say that the cyberknife is a bad choice if the hemangioblastoma that is being targeted is larger than six millimeters (I may be off on that, it's been a few years). The larger the tumor, the more radiation is used to cook it. The sixth stereo that I describe was for a tumor that was close to that maximum size. Even so, I still believe that stereotactic radiosurgery is a wonderful thing for small tumors.
It is so very important to manage your condition through MRIs every six months to a year. This is the only way I know to be sure tumors are caught when they are small. It is also true that the accounting has to be meticulous. When you have cyberknife surgery you have to identify the tumor or tumors that have been treated and when so that there is no confusion down the road. I must confess that I rely on my neurosurgeon to keep track.
Another observation, following my unpleasantness with the sixth procedure, I experienced a significant loss of hearing in my right ear, along with tinnitus. This condition persists and is attributed to radiation damage. Consequently, I'd guess that not only the size of the tumor to be treated is important, but it's location as well.
Don't let me put you off from the cyberknife, especially since they went to frameless surgery. Just be aware that it can have complications.
Thanks for the information, Dave. Yes, it is very important that lesions are treated when they are small. Unfortunately, my tumor had already grown and I did get the dreaded swelling.
I don't think it was a mistake, however. Some people with tumors larger than mine in the same area did not suffer the same swelling that I did. The procedure was a choice that I made with my doctors who I consider expert in the field.
So, these symptoms are very uncomfortable--nausea, dizzness and severe numbness and tingling in both feet, legs and the groin, which I'm told is probably temporary. I just have to wait this out.
Raeanne
I am also considering cyberknife surgery for a small brain tumor. Is there evidence that the SRS is effective? Someone mentioned that the NIH no longer recommends this treatment - does anyone know if that is true?
Has anyone had the procedure done at Johns Hopkins? Are there other places that people can recommend with experience in SRS?
What are the side effects from the brain swelling, and how long have they lasted for you?
Thanks - just trying to make an informed decision!
Beth
Beth,
My husband & I did call NIH & yes they are no longer performing SRS (or he said recommending - my husband talked to him so I'm not sure on the drs exact words.) The dr said that it's because the nature of the tumors are to form & then stop growing and sometimes to grow again at a later time. He said that if they began to grow, they would do conventional surgery.
However, I still think that if the tumors are small, I'd rather my husband have the SRS. His tumors are pretty deep in the cerebellum and in order to remove the tumors with a conventional surgery, they would have to go thru (and destroy) healthy tissue.
I would also like to know where anyone else has had experience w/ SRS as well as what the side effects of the brain swelling are.
Lynda
The team at NIH has done a great deal of work studying the "natural history" of hemangioblastomas of the brain. They have watched them sit there for years -- maybe even decades -- without growing. Then one of them will decide to grow. It may get appreciably bigger and then stop growing again, and sit at that plateau for another several years.
They look at the results from stereotactic radiation and think, did this tumor stop growing because of the SRS treatment? or did it stop growing because it was going to stop growing anyway?
They are also a group of outstanding surgeons who are very good at working with hemangioblastomas, so on balance, they prefer surgery.
That is not the position of all teams, and there does seem to be a role for SRS, but you do have to respect its limitations and be careful. As Raeanne has described, it's not the "piece of cake" that it is sometimes billed as being. It is serious surgery and there is a lengthy healing cycle to be gone through, so it is critically important to plan the journey well. Once you embark, there is no way to get off and do differently, you have to ride it on through. So PLAN, PLAN, PLAN. Go through the list of questions in the Handbook with your doctor, and get all the answers you need to feel confident that you are doing the right thing -- for you, and for this tumor, this size, in this position, right now. The answer will be very specific to the tumor in question
Best wishes,
Joyce
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
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 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.
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.
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
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?
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
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 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
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
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!
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
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.
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