Swelling post Gamma?

[Echo]

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.

[ampeep]

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

[Echo]

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.

[ampeep]

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

[Alison]

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

[Echo]

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

[arizonajack]

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.

[Echo]

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.

[Alison]

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

[arizonajack]

(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.

[Cheryl R]

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

[Alison]

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

[robinb]

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.

[Echo]

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.

[ampeep]

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