Some new questions, advice please.

[Alison]

Hi everyone,

I had my first apt at the Oncology Centre yesterday to discuss radiosurgery.

To cut a long story short, there had been a mix up with my referral,( I'm in the UK).But the Doc located my MRI and agreed I needed SRS and will have to get funding signed off (on the NHS) because of the "error". This will delay things a bit and I've got to wait to hear when I'll actually get treatment, possibly December. With my symptoms getting worse over the last couple of weeks I'm a bit concerned, not to mention stressed, about this.

My question is the Doc said I'd need an MRI at another hospital with dye a few weeks before treatment. She said they would want to use contrast dye. I didn't have this on the first MRI which I had at a different hospital, and the AN showed up fine. I have read the dye can cause an allergic reaction or at worst kidney failure. In US do they give you a blood test first to be safe? They don't here in the UK. Does anyone know about this test and is it for creatinine? Has anyone had side effects from the dye? I'd have a 90 min bus trip and walk from the hosp afterwards. Is the Dye really necessary if they saw the AN ok before..

Also the Doc said that when using the headframe for the Linac SRS, (like in gammaknife) there was a slight risk of the screws causing skull fracture. Yikes! I'd read up about most of the side effects, like possible facial palsy which the Doc said was a risk, but not that one.

By the way the Linac machine will either be a varian or an elektra, and about 12 years old.

Also the hospital doesn't give you steroids, unless you need them at a later date for severe symptoms. Not that I'm keen to have them, but the Doc said "everyone" gets swelling but don't necessarily need them.

Can anyone offer their experiences about the above? 

Warm regards to everyone,

Alison.

[cindyjarrett]

Alison,

Hi!  I had gamma knife at the University of Virginia last Friday, October 12.  You were asking about the contrast dye they use.  I had it with my first MRI that found the AN, and I also had it the day of gamma knife.  The dye has never bothered me, and they really never said a whole lot about it.  I know that it is suppose to help show the tumor better.  The machine that they used for gamma knife at UVA was called Perfexion, and I think from what I can recall it was maybe six years old.  They did give me one injection of steriods right before doing the procedure. 

I went to UVA on Thursday, and they did the pre-op evaluation which took about two hours.  Then on Friday I was there for six hours total.  They put me to sleep for the headframe, and I woke up with it on.  Then they did the MRI and attached a helmet to the frame.  Next they did gamma for 38 minutes.  When they took the frame off, it did not bother me at all.  I then was given something to eat and drink and was told I could leave if I felt okay.  I felt great and was not sick so I left.  Since getting home my head has been a little sore, and I have felt a little pressure.  Yesterday I went back to walking three miles with my neighbor.  I go back in six months for another MRI, and pray that there will be no growth.  Then I will go back six months later and possibly then they will see that the tumor is starting to die.  I was told just to call if I had any problems, and they would give me steriods.

If you have any more questions, let me know.  I will be praying for you.

Cindy

[Alison]

Thanks Cindy for your reply,

I'm glad you had a good experience.  Regarding the pins, at my centre in the UK I was told they don't put you to sleep, but give you four lignocaine injections at the pin sites then screw them in.

I was told they had two patients who had skull fractures before when being pinned, who had had surgery in the past. They now have a new screwdriver that hopefully reduces the risk by stopping them screw in too far! I'd never heard about this risk until yesterday at the apt and it seems not many others have either.

I hope you continue to recover well. Keep us updated,

Alison

[Jim Scott]

Alison ~

To the best of my knowledge (I'm not a doctor) in most facilities that administer MRI scans in the U.S. a pre-scan blood test is mandatory when the contrast dye (Gadolinium) is planned as part of the procedure.  The Gadolinium dye is used to enhance the appearance of lesions and tumors - not for medicinal purposes.  The dye is eliminated by the kidneys.  I've had several MRI scans with the dye with no ill effects.  Although it is a small number, some people do.  I felt a bit warm after the dye was administered but that passed quickly.   

I underwent FSR (no headframe) and so cannot offer any information on GK or CK procedures.  However, the chance of the headframe pins causing a skull fracture sounds extreme.  In my six years as a daily visitor to these forums, I have never read of this occurring, although, as in all of life, anything is possible.  However, I wouldn't allow myself to be too concerned with that happening.

As for swelling and steroids, it's true that all radiation patients experience some degree of swelling (I did).  In the U.S., most physicians will prescribe a 5-day regimen of steroids to alleviate the swelling, which can be problematic. This would be an issue to address if and when you thought you needed steroids for swelling.   

I trust you'll receive more information in other posts.  I wish you success as you continue the 'AN journey'.

Jim