Post CK/GK or other radiation treatment...How long ago? What sx? How are you now

[mindyandy]

Hello ev1
I thought I'd ask ev1 that has had radiation done a few questions.....

1. What form of radiaiton did you have done and when? How far out are you now?
2. What sx did you experience afterwards and for how long? Time periods ex: Fatigue at 3 months, tinnitus at 6 months etc.
3. How have your follow up MRI's been? Any swelling or shrinkage and such.
4. How are you feeling today? Any balance issues? Tinnitus? Pressure etc etc.


I'm just curious.

Thank you and happy holidays to everybody

[sgerrard]

Am I correct that ev1 actually means everyone? At first I thought ev1 was a new user.

1. CK, Sep 15, 2007. Do the math = 15 months ago.

2. Exploded head for about 3 weeks, 3.5 months after treatment. Occasional brief ear pressure now. Tinnitus constant, before, during, after, and forever. I don't seem to feel fatigued except when I'm tired.

3.  Six month MRI showed 1-2 mm shrinkage. Next will be at 18 months.

4.  I feel pretty good. Using a hearing aid is not as good as real hearing. Tinnitus is not a problem. Still take the occasional Ibuprofen for ear pressure, nothing major. The AN hasn't entirely disappeared, but it has retired from active duty.

Steve

[Tisha]

Steve,

How was your hearing beforehand.  Also, did you tinnitus get worse?  I have no tinnitus in my AN ear, but do in my hearing aid ear.  It's scary the thought that I would have it in both.

Tisha

[ppearl214]

hey Mindy!   Ok, I'll play!


1. What form of radiaiton did you have done and when? How far out are you now?
* Had Cyberknife.... first week of April, 2006, now just approx 2-3/4 yrs ago.

2. What sx did you experience afterwards and for how long? Time periods ex: Fatigue at 3 months, tinnitus at 6 months etc.
*Too broad a question.  First few months post-CK, some minor headaches, some enhanced ear fullness and pressure, enhanced vertigo.  Lasted approx first 6 mos (give or take).  Already have balance issues due to other medical issues, thus, I cannot answer that part on my own behalf.

3. How have your follow up MRI's been? Any swelling or shrinkage and such.
*Nothing but great news.  Tumor growth stunted. Given that head MRI's have a total margin of error of +/- 2mm, I have stayed within the original AN size of 1 cm (last check had it at 8mm).  MRI shows darkened center.

4. How are you feeling today? Any balance issues? Tinnitus? Pressure etc etc.
*From an AN standpoint, there has been (down the road) some post-radiation swelling that has been nipped by steroids..... not that it is common but I knew, based on my research before treatment, that is could   happen. I guess I was just one of the lucky ones (as always.... I like to be speshal).  All fine now... and last films (taken 2 wks ago), radio-onc is tickled pink that my AN is still deemed a "done deal".

Hope this helps.
Phyl

[sgerrard]

Steve,
How was your hearing beforehand.  Also, did you tinnitus get worse?  I have no tinnitus in my AN ear, but do in my hearing aid ear.  It's scary the thought that I would have it in both.

My hearing was checked 3 months before treatment, then 6 months after. My AN ear dropped 5-10 db more in the low-mid range, with no other changes, and has remained there since. The small additional loss was probably due to the AN rather than the CK treatment, but who can say.

My tinnitus has remained the same throughout, perhaps a little milder now since I have grown so accustomed to it. All in all, a pretty good outcome.

Steve

[gordy]

i had gammas knife july 2007.
next week i get my year and a half mri, balance test and hearing test
felt fine after wards. inly thing was where the bolts were screwed on for head from.
never had ringing just lose of hearing.

[goinbatty]

1. What form of radiaiton did you have done and when? How far out are you now? - had CK in 1/08. 
2. What sx did you experience afterwards and for how long? Time periods ex: Fatigue at 3 months, tinnitus at 6 months etc.
Fatigue for several weeks following and then it recurred several months later.  Nothing a brief nap couldn't resolve.  About a month afterward, my scalp itched on both sides of my head.  Had some thinning of hair but no bald spots (? due to stress).  Back during the summer, I developed brain power surges where it felt like a mild electric shock to my brain lasting less than a second.  That went on multiple times a day for several weeks then stopped.  Recurred several months later but milder and lasted only a few days with nothing since. 
3. How have your follow up MRI's been? Any swelling or shrinkage and such.  - see below
4. How are you feeling today? Any balance issues? Tinnitus? Pressure etc etc. - Feeling fine.  Occacional mild balance issues, increased tinnitus, ear stops up with colds but resolves with Ibuprofen/cold meds.  I think I've had more hearing loss because I'm noticing more problem with direction of sound.  Nothin major though. 
Sandra

[mk]

I somehow missed this thread. Here are my answers:

1. What form of radiaiton did you have done and when? How far out are you now?
I had GK in April 2008 - 8 months ago.

2. What sx did you experience afterwards and for how long? Time periods ex: Fatigue at 3 months, tinnitus at 6 months etc.
I experienced sudden hearing loss, together with tinnitus at around 6 months post-treatment. This had happened before treatment as well. It resolved complely  with steroids.
Other than that I didn't have any new symptoms. To the point that I was beginning to wonder if the procedure had worked at all.

3. How have your follow up MRI's been? Any swelling or shrinkage and such.
6 month MRI showed stable size and darkening at the centre.

4. How are you feeling today? Any balance issues? Tinnitus? Pressure etc etc.
There is no change in my initial presenting symptoms (ie. some facial numbness-metallic taste-dry cornea, very mild tinnitus, 10-15db reduction in hearing). Recently I think I have been noticing an improvement in the metallic taste, but it may just be that I have gotten used to it. Overall I feel pretty good.

Marianna

[Tumbleweed]

1. CK in early July, '08. Now 5.5 months post.

2. For the first day or two following my last treatment, the back and left side of my skull felt numb. Profound, debilitating fatigue for the first 2 weeks, improving to extreme fatigue for the following 2 weeks. After 1 month, my energy began to rebound faster. Energy level normal since the 2-month mark.

Pulsatile tinnitus virtually disappeared immediately after treatment. High-frequency ringing (tinnitus) had improved about 80 to 90% immediately after CK, got a bit worse again at about the 3.5-month mark (but still not as bad as before treatment), and has improved dramatically in the past several days (nearly gone) with the start of my taking a B-vitamin complex supplement high in pantothenic acid (it's still too early to tell if this improvement is coincidental, but see my related link here: http://anausa.org/forum/index.php?topic=8312.0).

Ever since treatment, I have had brief, mild dizzy spells that last about a minute (sometimes two minutes). This isn't vertigo but just a wave of disequilibrium, which always passes.

At about the 3-1/2-month mark, a sensation of fullness in my left ear returned (I hadn't had that for many months before treatment) and my hearing on that side (my AN side) also decreased. My 5-1/2-month audiogram revealed 15 dB further loss in the upper-midrange frequencies (at 2 kHz). I had already had significant hearing loss between 2 and 4 kHz in the years my tumor went undiagnosed. The fullness disappeared after about five days. I also had mild-to-moderate hyperacusis on my AN side for several days at the 4.5-month mark.

3. My followup MRI was at 5 months post-CK. It showed widespread necrosis virtually throughout the tumor except at the periphery.  Since CK, the tumor "grew" 1-2 mm along two of the three axes of measurement, probably as a result of swelling but possibly just due to the MRI's inherent margin of error (i.e., it might've been that large 5 months ago, but the previous MRI might've taken the view at a slightly narrower width of the tumor).

4. Very mild tinnitus and mild, brief attacks of disequilibrium now (the latter averaging about once every day or two). Otherwise, feeling good. The additional hearing loss in my left ear is worrisome, though. Dr. Chang told me it might return over time. Fingers crossed.

Best wishes,
Tumbleweed

[Tumbleweed]

P.S. Oh, and also have constant wonky-headedness. I had that before treatment, though.

TW

[GRACE1]

1. What form of radiaiton did you have done and when? How far out are you now?
I had GK in Dec 2006.  I just had my 2-yr follow-up MRI.

2. What sx did you experience afterwards and for how long? Time periods ex: Fatigue at 3 months, tinnitus at 6 months etc.
I had no effects from the GK.  My hearing (SSD) did finally decrease from 60% loss to 80% loss. 

3. How have your follow up MRI's been? Any swelling or shrinkage and such.
My first MRI post GK showed necrosis.  My second MRI, done recently, showed a reduction in size of 50%. 

4. How are you feeling today? Any balance issues? Tinnitus? Pressure etc etc.
I feel fine.  My balance was off a tiny bit before GK due to arthritis in my knees.  The PA at my appt following my last MRI said I could experience balanace problems  eventually due to my knees and the natural progression of age (I am 58).  She suggested using a balance ball, and I also intend to get a Wii and Wii Fit; I have read so many good comments about them on this site.

Grace

[stoneaxe]

Hello Mindy,

The most frustrating of this whole ordeal I think sometimes was trying to figure out what the right decision is for you. I wish there had been as active a forum 4.5 years ago. My research and discovery would have been so much easier.

1. Proton beam, March of 2004

2. Mine was found because of hearing loss, I was at 75% and having some tinnitus in Nov of 2003. Post-op I had complete hearing loss 1 month out. Tinnitus has increased and is constant (but i don't notice it unless i think about it.) I had minor balance issue just prior to surgery that slowly got worse until at about 6 months out they were pretty serious, unable to drive, etc... I started having bad headaches all of a sudden about 7 months out. I had the bobble head effect frequently. Frequent sharp stabbing pains too.

3. First two years I had MRI's every 6 months, then yearly. It had stopped at 6mm and stayed that way until my 4 year...increased to 11mm. I've had another since then and it is still 11mm.

4. Still complete hearing loss. Tinnitus constant (again, I don't notice, although when I do it can be annoying), My balance I've managed to recover through extreme therapy (see the post in the balance section on standup paddlesurfing) Prior to that I was still having a lot of difficulty. I still have good days and bad days, much more good than bad though, that said...this whole week has been bad....head cold and that always throws a wrench in the works. My headaches are controlled by a low level dosage of topomax, 75mg seems to be enough to keep it at a point I can live with. I don't care for the side effect most of the drugs used(feeling stupid) so I'm trying to keep it at a minimum. I don't typically get the really bad pressure or bobble head feeling anymore but I rarely feel completely normal.

The second most frustrating part of this is second guessing yourself. To this day I still am not completely sure I made the right decision. I have to wonder if given the size of my tumor i wouldn't have been better of watching and waiting. At the time that just didn't seem like an option for me but now I'm not so sure it wasn't the way to go.

Despite all this I have to say life is good. Getting out and living is the important thing regardless of what speedbumps may get put in the way. just have to push harder.