Should I expect high probability of side-effects from CK?

[dalemccl]

I plan to have Cyberknife for my 19mm acoustic neuroma.  I'm meeting with a radiation oncologist in a couple weeks to discuss it.   I'm not concerned with further hearing loss from treatment because I have already lost 90% in the AN ear.  My only other symptom is very mild tinnitus in the AN ear.   While discussing options with my Neurotologist, I decided to have CK rather than further "watch and wait" because when he told me about the Cyberknife option, it seemed ideal because of its non-invasive nature.  He did not mention any side effects and I didn't think to ask if there are any. 

However, from reading this forum, and other sources, I see many first-hand patient accounts of problems after treatment that were not present before treatment.  Some are very short term, such as fatigue in the first week or two.  Other side effects are longer term.  These longer term symptoms seem to occur at various times during the first two years, are usually not permanent, and vary among individuals as far as which side effects occur, their severity, and duration.  Is that a fair summary?

Is it accurate to say that I should therefore expect to have a pretty high probability of experiencing some side effects of yet-to-be determined nature and severity?  Or is it a case of most people don't have any significant side effects from CK for AN, but the patients who do have some problems are the ones who tend to post their experiences in forums. (Perhaps the ones who don't have any problems don't look for AN forums or post in them?)  I'm just wondering what to expect.  Thanks.

[Blw]

I don't think so. Some people will attribute side effects to radiation that are unrelated, others are exceptionally rare. A common side effect is the reappearence of symptoms within the first year, perhaps two, such as balance loss. This is most likely due to swelling of the tumor which presses on other nerves, as it undergoes damage, and is quite normal. Hearing is probably going to go for sure. You also are monitored yearly by MRI, I'm not enthusiastic about gadolinium (the contrast), but some doctirs will extend it to every two years. There might be some short term effects from the head frame if you have Gk. The pin holes can cause some pain. However, compared to surgery, the side effects are almost non existent.  In the whole scheme of things and compared to major brain surgery for tumor removal, side effects are essentially nil for radiation. Remember, on this site you are more likely to encounter people who had problems. The vast majority of radiation (>90%) cases (tumor size and location not withstanding) never experience anything unexpected, and undergo tumor control (no further treatment). In my opinion, the best thing to do is read a lot so you are familiar with everything that is going to or could happen to you so that you are not surprised. This site is great for that.

[dalemccl]

Thanks, Blw. Based on what you said, it sounds like I can reasonably expect a good chance that I will have minimal and easily tolerated side effects from the Cyberknife treatment, but also should not be surprised if some significant side effects occur during the first 2 years, as has been the case for many who post here.

This forum and the cyberkife.com patient forum are great sources of information. 

[rupert]

You can also reasonably expect that the treatment will be successful.  Sometimes an often forgotten stat.  Side effects of any significance are rare.  I would bet that 99% of people that have CK or GK never even post on these forums,  so post are skewed towards problems sometimes.   People do tend to be here looking for help because they are having problems but,  that is the benefit of a resource such as this.  I had GK back in 2010 and never had any side effects.  No swelling, no increased tinnitus, no headaches.   Good luck to you.

[JLR]

Hello. I had CK in 2010.  It was 3 days in a row. Each session about 45 min.  Absolutely ZERO side effects. Was on a steroid before during and after the radiation to counter act any swelling.  However, about 5 years later the AN started to grow. I had surgery this past November. Good luck to you. Joan

[lilith]

Hi,

I personally experienced an increase in side-effects from before to after radiation, mainly more wonky-head (months 4-6) and noticeable hearing-loss (inmmediate after radiation) that never improved.

I also experienced new side-effects that I did not have before radio: balance issues, dizziness, double-vision when I turned my head quickly, nausea and tinnitus. All of these from months 4.5 to 6 after radio.

Now, almost 9 months after radio: My balance issues are noticeable only when dancing, swimming, turning my body or head quickly. No more dizziness, no more double-vision but some nistagmus detected by doctors, tinnitus goes and comes, wonky head only when I carry heavy things or when my streess climbs.

In conclusion, I have a difficult period (between 4.5 and 6 months postradio) but now my body behaves almost normal.

Honestly, for me it helped a lot to know that other people on this forum had experienced some side-effects because I did not worry too much as I believed that my situation was 'normal', somehow expected. My doctors said that I had to run to see them if I had vomits and severe headaches, which I did not have. My doctor said that hydrocephaleus can happen during the first year post-radio, mainly between months 6-9, the incidence is low (around 1-3%) but it is there.

Hope this helps.

Lilith

[dalemccl]

rupert, JLR:
Thanks for the encouraging reports of your lack of post-treatment side-effects.

lilith:
I'm glad your side-effects have lessened as you approach 9 months post-treatment.   Hopefully the remaining symptoms will continue to improve.

[fargo]

I had Gamma Knife at Mayo on December 8. Will have follow up MRI in June. No significant side effects. The only thing I noticed was some increase tinnitus. This is hard to gauge and could be that I notice because I am paying more attention to potential side effects. Has not impacted any activities. I also did not experience much swelling. I strongly recommend keeping head wrap on even after leave hospital and doing extensive icing. May be coincidental,but worked for me. I had been on wait and watch for 4 years. I know wish I would have had the Gamma Knife earlier. Hopefully, I will still think this after my 6 month follow up MRI.

[CattAN]

Since Blw brought up gandolinium, and my six months MRI is coming up, I came across these symptoms for toxicity.  If one year follow-up is acceptable, should this be considered?  Here are the symptoms:
Symptoms

Some of the symptoms experienced fall outside normal descriptive terms for medical symptoms making it hard for patients to communicate to their doctors just what they are experiencing.  For those symptoms, we will provide additional descriptive details as appropriate.

In rough order of frequency as reported in our Survey of the Chronic Effects of Retained Gadolinium from Contrast MRIs,
◾Pain – aching; burning, tingling, and/or prickling pain (paresthesia); deep bone pain.  Typically in extremities or joints, and sometimes in the location where the MRI occurred, like the head.
◾Dermal changes – like tight skin, lesions, hyperpigmentation.  Most often in extremities.
◾Muscle issues – twitching – small, local, rapid contractions and weakness
◾Ocular problems – worsening vision,  dry eyes, bloodshot eyes
◾Cognitive symptoms
◾Ear, nose and throat – tinnitus, swallowing, and voice problems
◾Low body temperature
◾Hair loss
◾Itchy skin
◾Balance problems
◾Swelling of extremities (edema)

There is one symptom experienced by many that transcends several of the symptoms listed above.  It is a sense of an electrified, vibrating, twitching feeling typically just under the skin that is sometimes localized and at other times a more overall feeling.  Sometimes it feels like something is crawling around under the skin.  This is a particularly alarming feeling when first experienced as it is unlike anything that the person has ever experienced and it is very difficult to explain to doctors.

[Blw]

I think the biggest concern is kidney damage. After two years, I will probably request my scans every two instead of one year. If it reoccurs, I will probably know pretty fast.

[Citiview]

It does beg the question of how many MRIs should we have in our lifetime. At my age I could feasibly have 30-40 years of MRIs?
That's just not going to happen.

[ANSydney]

Rather than cutting out MRI scans, consider having some scans without Gadolinium Contrast Agent. The best MRI scan for AN is a T1 weighted with Gadolinium Contrast Agent. From what I understand this not only clearly defines the tumor but also shows signs of necrosis, etc. A T2 weighted scan without contrast agent will still be able to determine size.

I'm still looking into this and will know details once I've more fully researched this. I've already had my first MRI (with contrast) and I'll be having my second on Saturday (with contrast). I will talk to my neurologist about having subsequent MRI scans without contrast. If researching, look into the keywords"fast spin echo".

In summary, keep having the MRI scans with contrast agent, but after the first couple consider switching to without contrast agent.

[kejac]

I'm gonna chime in on the gadolinium also. I recently had an MRI on my shoulder and the contrast made my throat close up, I started to wheeze. I also broke out in a small itchy rash around the injection site. The medical staff gave me a 25mg Benadryl and after 30 minutes I was ok.
I have my 3 year scan next week, in preparation I am to take 3 pills of prednisone, 50mg each, to be taken at different times and a 25mg Benadryl. I've been injected a few times with no allergic reaction but, this last time was different.
Should be interesting.

[caryawilson]

Good point ANSydney.  You can definitely see the tumor without contrast.  However, it happens to be a glowing white ball with contrast, so contrast makes the observation more obvious.  It's a slightly darker image on the T2.  However, after a couple MRIs, I would think you can skip the contrast.  Personally, I'm not affected by the contrast, but after reading the forum, I guess I'll ask my Doctor on my 9 month visit.

As for symptoms after GK.  As noted by the others, it really depends on the nerves that are affected by the tumor dying, which normally involves some swelling of the tumor.  For example, double vision is often due to the tumor pressing on the abducens nerve (nerve VI ).   The reason facial weakness is so common is the facial nerve (nerve VII) is side by side the Vestibulocochlear (nerve VIII) in the auditory canal.  Since an AN grows out of the vestibulocochlear nerve, the facial nerve is normally impacted before the other nerves.  The more common symptoms, hearing, balance, tinnitus, vertigo, can be attributed to the vestibulocochlear nerve.

[Citiview]

Kejac
The reaction you are describing is anaphylaxis. Any time your throat closes up it's considered life threatening. Subsequent reactions could be worse.

It's stressful enough for some to just go into the MRI machine, but to think about that issue!