Swelling from Radiation - Feedback Appreciated

[Blue Moon]

Hello Team,

This website and forum is amazing, and I plan on supporting it and posting more in the near future since this is my first post.

In the meantime, I've been having some issues the past 45 days and was hoping to get feedback and thoughts from anyone that has had the same or similar experiences.

I'm 35 years old and had Gamma Knife radiation about 7 months ago, 2.5cm left side, have been healthy and active since I was little. My acoustic neuroma has swelled, 6 month MRI showed it being about 2.8cm, and the past 1 1/2 months haven't been fun.

My two symptoms prior to radiation were numbness in my left face and feeling half-drunk a majority of the time. The past 1 1/2 months the numbness has increased, I now feel full-drunk all the time, extreme fatigue, and minimal appetite. My doctor prescribed me steroids for a few weeks which I have already taken but they only helped some for about the first 24 hours.

I'm mostly concerned about the extreme fatigue, and some about feeling drunk all the time. For the past 1 1/2 months I've been sleeping 13-16 hours a day (the steroids I took were supposed to amp you up/give you much more energy, among help reduce swelling/inflammation and appetite from my understanding). I don't want to sleep that much but I get extremely exhausted doing the simplest things (walking a few blocks, meeting a friend for lunch, doing the dishes, etc.), just have no energy. I haven't been able to work the past 45 days (it's been that bad) and my body/brain is pretty much forcing me to sleep often.

My doctor mentioned swelling usually occurs in 10%-12% of patients similar to my situation, it usually takes 3 weeks to 4 months for the swelling to go down, and in 95% of patients the swelling does go down.

I would love to hear from anyone that has experienced something similar and to find out how long this lasted for them, or any other thoughts and feedback people can share. I'm optimistic about the 95% chance of the swelling to go down but I can't say it's been fun the past 1 1/2 months. It seems like I just need to ride out the storm but currently it's a bit scary if I'm being honest, and I look forward to hearing from people in this great community!

On a side note, the first 5 1/2 months after radiation went very well for the most part, and once I get over this rough patch I plan on sharing "my story" on this site/forum to try and help others. Thank you in advance for any knowledge you can share!

[kkc]

I am replying since I did have AN swelling after GK, although my symptoms were not the same as your symptoms.  My swelling occurred at 4 months post GK.  (Up until that time, my only major symptom was slightly worsening hearing.  My balance is not perfect but it didn't get worse.)   I did have a rather sudden onset of partial facial paralysis, and so an MRI was done at 4 months (rather than the planned 6 months).  I don't remember the exact numbers now, but I started out with a 2.2 cm AN and it definitely got bigger.  My dr. said swelling was to be expected and that I was having a "robust" response to GK.  I tried steroids -- they did nothing to improve the facial paralysis.

I had the next MRI at 12 months after GK, and the AN was about 1.5 cm.  A year after that it was even smaller.   Unfortunately I am still dealing with partial facial paralysis and I think my hearing is slowly getting worse.  My next appt and MRI are in a few months. 

I know this isn't much help, but I did have documented swelling after GK.  I'm sorry you're struggling & I wish you much improvement. None of this is any fun.

Kay

[kestes]

I wish I could help, I just had GK on Nov 2 for a 14mm.  My balance, tinnitus and hearing were terrible right after GK but they calmed down until last week my hearing got crackly again and my word recognition is more noticeable when I get words mixed up.  I think the losing hearing is part of the process.  My balance was wobbly before GK and it still is.  when I say balance at night I have to be careful walking in complete dark, when backing up my car and looking side to side - whew that makes me dizzy, really any quick side to side movements make me off balance, even when walking I stare straight ahead.  I had fatigue before GK and still have it after. I had some slight eye twitching a week or so after GK that lasted a week or two but have not experienced it since then.   I have to lay down for an hour or two every day after work.  I am an avid hiker and hiked 25 miles through Southern Utah about 5 weeks after GK and really didn't experience fatigue.  Makes absolutely no sense, unless hiking is peaceful and quiet and serene, and not computers, phones and people and traffic which are all required for work. 

I am at the 10 week mark and realize a lot of side affects are delayed and some start happening around 4-5 months. 

I also started Vestibular Therapy a few weeks after GK, just to try and get me some exercises to practice and work on in hopes that maybe I can prevent some side affects. 

I wish you the best and hope some of this can be resolved for you!!!

[Blue Moon]

Kay and Kestes,

Kay, thank you for sharing your experience, any information is very helpful! I hope more people will chime in to share their feedback. It's great to hear your AN has shrank so much, that is encouraging, and I really hope your partial facial paralysis gets better.... and soon!! My hearing is good in my right ear (good ear) and the day before radiation when I had a hearing test my left ear (bad ear) was only like one notch worse than my good ear (like 90% compared to good ear). My 6 month hearing test showed my bad ear only like 5% worse since radiation (so like 85%), so I feel lucky that my hearing is good so far. I think my doctor said going into radiation that their was a 50% chance I would lose all hearing in my left ear and a 50% chance I would lose some hearing over time. Before radiation I did not have ringing in the ear, but about 1 month after radiation the ringing started. It doesn't bother me much, took a few week getting use to it, but I only really notice it at night when I go to sleep and it's quiet. Doctor mentioned he thinks the ringing will go away at some point in the somewhat near future.

Kestes, thank you for the response and for sharing your situation. Before radiation and 5 1/2 months after, I did not have many of your symptoms or issues but the past 1 1/2 months I definitely can relate a lot more to your situation. Regarding your hike, about 3 weeks after radiation I felt basically 100% normal (as in I had no symptoms and felt like I did say 5 years ago) but that only lasted a week. I think radiation is just a shock to the system, so there will be some more significant ups and downs for awhile until our brain and body can adjust, and the radiation can settle in. From everything I've read over the past 8 months, it seems the first year can be fairly rocky, the second year a little rocky, the third year even less rocky, and after the third year it often gets much smoother with minimal issues or new issues for the most part. My doctor mentioned before and after radiation that it often can take up to 3 years for the radiation to do its thing, so different things can happen during that time (good and bad). The first 5 1/2 months went so well, I think I started getting ahead of myself with relief and excitement with this process, but then the darn thing started to swell and has caused several new fun problems to deal with the past 1 1/2 months :/ I hope things get better for you and that you have minimal future side effects!

[v357139]

Blue,
I did not have radiosurgery so I have no experience.  But generally my understanding is that the swelling means the tumor reacted to the radiation, which is a good thing.  Hang in there with the symptoms.  When is your  next mri?
Rich