ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Echo on January 27, 2014, 12:23:35 pm
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Just wondering if those who have had swelling post Gamma can tell me what they experienced and what I should be watching for. I'm 4.5 months post Gamma and overall I think I'm doing pretty good. My vestibular issues have been worse for the past week. My wobble is almost constant and I have been feeling light headed and tipsy pretty much 24/7. I had an exceptionally rough weekend with things visually jumping around when I was out grocery shopping and then trying to walk outside in some fairly heavy blowing snow. I am not experiencing any severe headaches, which I'm thinking is a good thing.
I'm honestly not sure if my increase in symptoms is from the changes in barometric pressure and the extremely high winds we've been having combined with some pretty nasty weather, or if my AN is starting to swell - or it could be a combination of both. I also don't want to bother my Neurosurgeon as long as I'm able to manage my way through this.
Thanks for any info provided!
Cathie.
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I am 4 years GK now. I had bouts of dizziness now and then. Some fatigue for sure, Some days were just blah. These things came and went. Nothing that serious that I couldn't handle with some rest. Being tired definitely increased symptoms. The frequency of these bouts has now gone away almost completely. I wondered too, if there could be possible swelling. I have had 5 MRI's since my treatment and not a one showed any swelling. In actuality they all showed shrinkage. Not all AN's swell. These symptoms you describe are a reality of these things. I've found rest a good symptom reducer.
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Hi Echo,
I have had swelling, well increase in size which I hope is swelling not growth!
My symptoms all got worse at 3 months. I had an MRI at 4months. I have only recently found out the measurements for that MRI as the previous radiologist didn't give measurements! It had increased 3.5 mm x 2.5 in 4 months post SRS. I had an MRI this Jan, one rear post SRS it is now 2.5mm x 1.mm bigger than before SRS. My symptoms all got worse again last month, but don't know if that was swelling or not, but seems like the 3 months episode was.
By symptoms I mean very bad imbalance, head spins, tinnitus and head/ear pressure.
I am waiting to discuss the size increase and symptoms with the docs hopefully this week. I know its usually a 2mm increase on pre SRS MRI which can mean a fail at 2 years but I've heard its worth waiting 3 years before deciding on further treatment. We have to hang on in there!
Alison x
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As long as your MRIs show dark spots in the tumor (necrosis) then the temporary swelling is a normal course of events in the progression of the dying tumor.
Shrinkage after successful SRS treatment starts occurring between one and 3 years.
http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg
Unfortunately, I have no clue as to why negative symptoms are present in some of you.
My post GK experience has been rather uneventful.
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Thanks everyone for responding.
I'm sure this is perfectly normal it's just learning to take a deep breath and telling myself it's all part of the process that I find difficult some days. It can be rather unsettling when things start to change or intensify.
Rupert, you made perfect sense reminding me to get enough rest and that not all AN's swell. I take rests daily through the week, but on weekends I sometimes miss. I actually took the day off work yesterday to just sleep - something I haven't done since returning to work in Oct. after my Gamma. I really felt that I needed to stop and just give myself a break.
Alison, I agree you should not think about the Gamma failing yet! I've also heard that it's wise to wait up to 3 years, as long as we continue with our MRI monitoring. Let me know how you make out with your Dr. appt.
Jack, my first 6 month MRI will be in March so lets hope we see some of those nice dark spots!! I hope you continue with an uneventful recovery, it's the best kind to have.
Cathie
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We have to remember ( Even though we don't want to admit it ) that radiation treatment does it's thing over a very long time. When I talked with my neuro about success and fail of treatment we talked in years (6-9), not months. A lot of things can happen over that time of course, good and bad sometimes. I see it on these forums often, that people are concerned and convinced about things at the 6 month and 1 year time frame. Creating unneeded stress. We need to monitor of course, but,we need to suck it up sometimes too. Our brains are constantly adjusting for these balance issues caused by these AN's. Our brains get stressed, especially if things our brains use are taken away. Like light! When our brain gets stressed we need to back off. Even though we may not want too. I know myself I have to make the time to rest, it's just part of life with this condition. Get your regular MRI's and then take care of yourself. I know it's not always easy, but it's what's been dealt.
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Hi Echo,
We all react differently to these procedures, but I too experienced sharply increased dizziness, head fullness, and severe headaches about 3 months after GK. I had an MRI done during that period and the image showed my 1.8 cm AN had swelled noticeably to 2.2 cm. Those two months were very difficult to endure. Fortunately, all of those symptoms gradually subsided. Now I am 9 months post-GK and feel great. No lasting side effects at all! My 6 month MRI showed the tumor had shrunk to about 1.7 cm. My AN side hearing sharply declined after GK, but I can live with that.
So, check with your oncologist, but also try to persevere through what may be just a temporary set-back as your AN responds to radiation. I wish you all the best. PM me if I can help answer any questions.
Be well,
Petrone
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Hi again folks. Some informative posts here.
Great news Petrone that yours shrank back, very encouraging.
Echo, I've spoken to my neurosurgeon who said there was too much to go into over the phone, so I am now going to see him in three weeks to discuss the MRIs with him. Arizonajack, I couldn't see any dark spots on the MRI myself, but I didn't have contrast, it wasn't ordered, so don't know if they'd show up.
I'll report back with any information after I've seen the doc.
As Rupert says it's a long haul! Hang on in there Echo!
Alison x
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Hi Alison,
I'm hangin!!
Thanks for the encouragement, we all need a touch of it everynow and then. All the posts to my question have helped immensely.
Alison, please keep us updated with news from your next appt. I hope all goes well for you. If he said there's a lot to review, don't forget to take a notebook! :)
Cathie.
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Hi Cathie,
Sorry for responding late to your thread (I'm on this site less these days). Just wanted to say that I'm also about 4.5 months post-GK, and I also noticed my tinnitus was a bit louder, and my balance a bit more wobbly during the time period you mentioned. I live in Michigan which has also been slammed by the winter weather and extreme temperatures. Not sure if its because of the weather, or being 4.5 months out, but quite the coincidence that we both noticed a change around the same time! Just letting you know you're not the only one.
I don't know about you, but for me, part of the process has also been dealing with a hypersensitivity to every bodily sensation. Pre-AN diagnosis if I had a day where I just felt off, I'd chalk it up to getting a cold, not sleeping well, or just randomness, and move on. Now literally even the smallest change in physiological sensation is immediately noticed, monitored, and considered in a way that's not always helpful. Part of my "recovery" is to try to keep these changes in perspective.
Good luck and hope you're feeling better!
Adam
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Cathie--
It's been too long between hello's! You've gotten some great insights here, and you know I'm still adjusting to my own changes and recognitions (I agree with Adam that I'm still trying to figure it out and not be too hypersensitive).
You know I've come to agree with you about correlations in weather and storm fronts.
But mostly, I wanted to applaud your decision to stay home and rest. We could all take such advice! GK IS still a form of surgery, and our body IS still responding accordingly. Glad you're listening to yourself, and I hope all things in your world only continue to improve.
Don't be a stranger and stay well!!
P.
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ADAM - thanks for adding to the thread. It's really good to hear from someone who is going through a timeline close to mine. I am equally thrilled to hear that you live in Michigan so you can relate to the winter weather. It has to be more than a coincidence that we are both going through similar issues given the crazy winter we are having.
I wouldn't say I am hypersensitive to changes I feel, but I am aware of, and record anything that seems new and unusual. Overall I feel pretty good and can't complain. I do get frustrated though with the ongoing balance and occulomotor issues I'm having. This is when I get to work on developing patience, and like you learn to put things in perspective. Please keep in touch and let me know how things go for you!
PATRICK - Always great to hear from you! Yes "rest" is my new best friend. It's amazing what a difference it makes to just take 15 minutes in the middle of your day and zone out. The exhaustion I feel when I don't get enough rest is truly overwhelming. Not sure how long that symptom lasts, but hopefully as I approach the 6 month marker it will start to fade away. I believe we really need to learn to pay attention to our bodies and rest as needed - it's part of the healing process. As much as I hated taking a day off work to sleep, it was the best gift I could have given myself. I didn't get distracted watching TV or reading, I simply slept the day away and was 100% better for having done so.
How are things with you? Have the facial spasms finally disappeared?
Cheers!
Cathie.
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Hi Cathie,
Was wondering, did you have balance issues prior to GN or did they start afterward?
Hope you're feeling better.
Keith
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Hi Keith,
I've had terrible balance and coordination my entire life and I'm 59! I actually laughed when I was diagnosed and the specialist asked me how my balance was. I don't think Gamma Knife has impacted my balance one way or the other yet.
At the time of my diagnosis (May 2012) I started to notice that I was bumping into things somewhat more frequently. Within the next year my AN grew from 1.8cm to 2.4cm and my balance sure did change. I went from having the occasional wobble to developing some minor occulomotor issues. Since May 2013, I've continued to experience some changes and my wobble is now more of a "wander". I tend to drift from side to side when walking. I don't go up or down stairs without using a railing and walking anywhere in the dark is lots of fun!! My bigger issues these days seems to be more visual with continued occulomotor issues - buildings moving/twitching - things moving visually that should not be moving when I'm walking.
I actually saw my Neuro Ophthalmologist yesterday. She said I'm doing great! No pressure on the optical nerve and my pupils look good. She is advising me to keep up with the Vestibular Rehab and that as far as the occulomotor issues go, my brain is still getting mixed signals. She said she sees many people far worse than me and that I should not worry. As for the long term, she couldn't say if this will improve or remain the same.
Overall I am functioning quite well. I have a few days every now and then where things are not great, but don't we all! ;) So far I'm pleased with my choice to have Gamma Knife. I'm able to get up and go to work each day and pretty much carry on with a normal (though wonky) life. I am optimisitc that my balance and visual issues will resolve over time.
Glad to help you Keith in any way I can. I hope you continue to do well.
Take care,
Cathie.
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Hi Cathie,
Your response cracked me up! I admire your positive outlook on life and sense of humor!
The evening after GN, my wife & I walked our two doggies for 40 mins - felt great.
It's only been 2 days since my GN but I noticed a few instances of dizziness. Is that quicker than usual?
Made me recall some things that happened about 2 years before my AN diagnosis. Late one night i got out of bed & fell onto the floor. Was strange cuz it never happended to me before - thought maybe I got up too quickly. Later, I experienced dizziness while driving up a particular hill on the way to work - it went away after 3 weeks. Maybe these were early signs of my AN?
Good to hear that you're doing well, and really appreciate your help!
Keith
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Hi Keith,
It's hard to say if your dizziness is a result of the Gamma so soon or not, I couldn't honestly say. We all react differently. I developed swollen eyes two days after my Gamma as a reaction to the local anesthetic. Took 3 days of ice packs to get the swelling down. I was surprised I didn't have the reaction the day of the treatment.
When I had by vestibular testing a year ago, it was determined that my good side is not functioning 100%. The otolaryngologist told me it may have been that way my entire life, he couldn't find any explanation for it. The only thing he told me was that it may slow down my recovery because if my good side isn't functioning 100%, it will take longer for it to compensate for my AN side.
I have two dogs as well (retrievers) and have had more than a few laughs when I walk them. They seem to have adapted quite well to me wobbling or wandering. Every now and then they just stop and look up at me, and if they could speak, I'm sure they'd be saying "what the heck are you doing?". I usually walk with one on each side of me and on the days where I wander more than others, the dog on my left side actually holds back and walks slightly behind me. I think he got tired of being bumped off the sidewalk! ::)
Cathie.
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Hi Cathie,
Am currently into the 'swollen eye' phase, especially since I've been to lazy to use an ice pack.
Looked at folks' suggestions about getting enough rest, which I'll try to follow.
My wife said that I should take Yoga classes to improve my balance. Might try doing some Yoga DVDs we have lying around.
I can imagine your dog's expression when he looks up at you during your walks! We have two Staffordshire Bull Terriers & they're sweethearts! They're therapy dogs so 1x/month, we take them to a nursing home. The patients look forward to their visits and are thrilled when they jump into their beds & give them kisses!
Keith
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Hi Keith,
I'd recommend using the ice packs depending on how much swelling you are having. My eye's swelled to the point that I could hardly open them and I couldn't wear my glasses. Day two of my swelling and one had turned a deep reddish purple with bruising. The bruising gradually turned yellow and eventually faded away, but it took a full week before the bruising was all gone. I'm very fair skinned though, so every mark shows!
Rest is very important. Even now if I don't get enough, I can guarantee you my symptoms will get worse. Don't push yourself.
Take care, and go get some ice! :)
Cathie.
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Hi Cathie,
Will try the ice, so I won't look like I got into a fight! Was tough to see out of my left eye yesterday.
Hmmmm, maybe I should leave work early to rest???
Keith
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Hi ,
as promised I'm reporting back re my apt with the neurosurgeon to discuss my MRI results showing swelling.
He agreed the swelling was an increase of 3.5mm at 4 months after SRS in April 13 compared to the Dec 12 pre treatment size, and at Jan 14 was around 2.5 mm, making it now around 17mm. It is nudging a part of the brainstem called the cerebellar peduncle with a minuscule line of CSF inbetween.
He couldn't see any necrosis but said there can be pockets too small to see. My MRI was without contrast but he said the scans are high resolution and contrast isn't needed.Which is fine by me as my eGFR has gone down 10 points since the gadolinium in Dec 12. He agreed contrast is not good for kidneys.
So it looks like it increased in size then went down, but still larger than before treatment. He said 4 months is a typical time for swelling, hence my dramatic worsening of symptoms in April. Of course had I not had the April MRI and just the Jan one year post SRS MRI, I wouldn't know it had done this. I'd just see the 2.5mm increase.
I'm due the next scan in a year Jan 15. He said he hoped it would be a bit smaller by then, but he had seen patients that showed another increase at year 2 (which could still be swelling or growth).
My symptoms are still worse than pre treatment and continue unabated, but then I know its a long haul!
Hope that helps, Alison x
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Hi Alison,
Thanks for the great post, it is helpful. Interesting that the AN swelled and started reducing in size in what appears to me to be a relatively short time frame. Hopefully it will continue to shrink. My 6 month MRI is coming up in March so we will be able to compare notes. I definitely feel like something is going on in there and will be very surprised if nothing has changed. Some symptoms have already improved and others have gotten more intense. As you say, this is a process, so patience is definitely a good trait to have....I'm working on it! :)
Take care and keep in touch.
Cathie
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he said the scans are high resolution and contrast isn't needed.
I'm no doctor but I'm not sure I agree with that.
In an MRI with contrast the reason you can see the dark spots of necrosis is because the dead tissue doesn't absorb the contrast while the undead tissue does.
Without contrast, it seems to me that the whole tumor would be dark and you wouldn't see the necrosis no matter how good the resolution was.
Maybe others will comment on that.
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Jack - I'll ask my neurosurgeon for his opinion on the topic of MRI's with or without contrast die. I'll be seeing him in two weeks for my first post Gamma MRI. I'm going to ask why in Canada they do not test your blood prior to giving MRI's and no one has ever warned me about the effects the die can have on my kidneys. All they have done here (for me personally) is have me fill out an extensive form prior to having the MRI with all my medical history. I've had MRI's at two leading Toronto hospitals and both have followed the same procedure with me.
Now I have two really good questions to ask them!
Cathie.
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Hi Echo and everyone,
the contrast debate continues! I agree with arizonajack that the dark spots that could be necrosis probably show up best with contrast. The image on my Jan MRI (without contrast) on my CD copy was a mottled grey/white. But the high resolution image the doc had in his office was clearer and an expert could hopefully see what he needed!
I personally would rather avoid gadolinium unless requested by the docs. (it is a heavy metal after all). The only time the docs insisted I have it was for the MRI before SRS to be used for the merge with the CT scan for the linac single dose.
Here in the UK they don't routinely offer a kidney function test before MRI. I'm aware there can be damage to the kidneys with gadolinium so I asked for an eGFR test at my GPs beforehand. eGFR is the filtration rate of the kidneys. As far as I know, if it is less than 60 contrast should be used with care as 60 can indicate a stage of kidney damage.
(An eGFR of 60 is 60% kidney function) . Mine was 82 in Dec 12 before gadolinium it is 72 a year later) 10 points is a big drop in a year when 1 point per year is normal drop. A score of 90 or above is "normal" higher is better, but it decreases with age etc. Was my drop related? I don't know, but I don't want to take any chances! eGFR may be called by another name in the US or Canada.
Hope that helps.
Let us know how you get on Echo. Hope its good news.
Alison x
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(An eGFR of 60 is 60% kidney function) . Mine was 82 in Dec 12 before gadolinium it is 72 a year later) 10 points is a big drop in a year when 1 point per year is normal drop. A score of 90 or above is "normal" higher is better, but it decreases with age etc.
According to the American Kidney Fund the normal range is from 60 to 120.
http://www.kidneyfund.org/kidney-health/kidney-tests/kidney-test-egfr.html
I'm not sure that a 10 point fluctuation in a year is all that significant. My own readings in the past two years have ranged from 66 in 2012 to 86 in 2013 with my last one at 75 at my annual in November. I just had pre-MRI labs but I don't have the results yet.
I've had 3 MRIs with contrast during that period. In Oct 2012 the pre MRI reading was 71. Two weeks after the MRI I had my annual labs and the reading was still 71. In July 2013 the pre MRI reading was 68 and 4 months later my annual labs showed a reading of 86. My pre GK labs were a couple of weeks after that and the reading was 75.
All I can conclude from that (for me, anyway) is that fluctuations aren't anything to be concerned with as long as they are in the normal range and the brief occasional exposure to the contrast is kind of a non-issue.
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It is just the last few years that the kidney function has been checked in the US. Where I go for care only does the blood work if you are diabetic, have hx of kidney disease, over a certain age,previous higher BUN and can't remember the other reason. Ones BUN and creatinine likely will vary every time it is checked but stay in the normal range when one is healthy.
Cheryl R
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Hi,
all depends on your genes I suppose and susceptibility. I didn't know I had gilberts syndrome ( higher liver billirubin, nothing serious but not what I was expecting) until I had bloods for the AN symptoms before diagnosis. Arizonajack, your eGFR seems to be going up not down, which is good news!
A bit more about eGFR from a respected UK site for those who are interested.
http://www.patient.co.uk/health/chronic-kidney-disease-leaflet
A simple blood test can estimate the volume of blood that is filtered by the glomeruli in your kidneys over a given period of time. This test is called the estimated glomerular filtration rate (eGFR). A normal eGFR is 90 ml/min/1.73 m or more. If some of the glomeruli (the tiny filters in the kidneys) do not filter as much as normal, then the kidney is said to have reduced or impaired kidney function.
http://www.patient.co.uk/blogs/sarah-says/2013/05/look-after-your-kidneys
As you get older, your kidneys gradually get less efficient at filtering - but this only gets to be a problem if it reaches very low levels, sometimes called 'end- stage kidney disease', when your eGFR is below 15. A rapid drop in eGFR is often a cause for serious concern to a doctor, as it suggests your kidneys are struggling. An eGFR of 50 in an eighty year old, which has taken five years to drop from 55, is technically classed as 'moderate CKD'. In fact, at that rate, your kidneys are only going to give out if you live to 120!
I read somewhere that its expected to fall 1 point a year, so my ten points drop in a year did make me take notice. Esp reading 5 years for 5 point drop in an 80 year old. But hey, it could be lab misreporting.
I'm more concerned about the AN getting its act together and going back down.
Alison x
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Hi Cathie-
I think you have been following my thread....
Anyway, I had a good deal of swelling at my 6month MRI. I was pretty freaked out about it, but UPMC docs said it was not unusual and not overly concerned.
there's lots of threads on pre MRI blood work, but as I understand it, its to check the kidneys and their condition for the dye...I have had blood work before each MRI, except perhaps my very first.
I have been told an MRI, especially for post GK, is virtually worthless without dye, so I agree w/that and will not go to the bother and expense. Given my side effects from the Gk and the fact they have completely subsided, Dr. Lunsford wants me to wait till 1 year after last MRI, not 1 year post GK.
So, since I feel as good as I did before the diagnosis, I am fine with that.
Hopefully, your symptoms will subside and go away, as mine did.
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Hello everyone,
I must have missed the previous threads regarding the Gadolinium dye, or I read them so long ago, I lost track of the details. I'm finding all of this extremely interesting and somewhat worrisome.
Alison, our Canadian Health Care System seems very similar to the UK system, so it would appear if I want any blood work or the eGFR test done, then I should be contacting my GP. I don't like having anything done medically that truly does not have to be done, so I'll be looking further into this and asking lots of questions!!
Robin, thanks for touching base. I am so pleased to hear how well you are doing. I suspect I'm just going through the anticipated "bump in the road". It's nothing I can't handle, but I'm certainly having a few challenges. The most frustrating one (other than the periodic ear pressure) is the increased dizziness I am experiencing when trying to do my vestibular rehab. Instead of feeling like I'm moving forward, I feel like I'm stuck and not making any progress. Hopefully things will improve over time - I'm not giving up!!
Take care everyone and thanks for all the informative posts!
Cathie.
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Interesting to see where people are post-radiation and the presence (or lack of) any resulting side effects.
Are you folks in the medical field? You all seem to know a lot about kidney disease.
Hope everyone with symptoms feel better,
Keith
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Are you folks in the medical field?
Good question. I suppose it's possible that, among our many members, there could be a doctor or two.
Other than that, we are not.
It just behooved us all to thoroughly study everything there is to know about our rare, and annoying, condition. That studying tends to spill over into other related areas.
Besides, the internet is a wonderful place where one can look up just about anything and become knowledgeable about it.