Author Topic: OK gang.. new question..  (Read 3829 times)

Timjk

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OK gang.. new question..
« on: January 04, 2008, 01:16:32 am »
 
I have a new question for anyone... I am hearing lately about the possibility of SEIZURES caused by radiotherapy ???  I have read nothing here to even suggest that as being a side effect.Please fill me in on any details...

I will be driving 20+ miles after each treatment, so I need to check this out.. The last thing I want to happen is for me to start flopping around the inside of my van like a netted Mullet doing 70 MPH...

I have looked every place I know to go in searching an answer.. I would appreciate any imput...

Since that was so easy, I am going to throw another one at you.. I am starting an evening class next week at a local college.. I am taking American Sign Language 1 .. I am concerned about the fatigue factor associated with radiotherapy.. Someone please tell me about fatigue.. Should I put off the class until next semester or keep it like it is.. The class is on M/W 5:15 till 6:30...
I am having FSR therapy starting in 2 weeks.. the 5 day a week 6 week program...
Surgery Feb.7th at Moffitt,Tampa. Removed right side AN 3.3 CM plus Chiari Malformation decompression.Second surgery Feb.23rd Ventricle Periphirial Shunt to correct CSF leak.. NO HEARING LOSS.. NO HEADACHES... GOD IS GOOD !!!

jerseygirl

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Re: OK gang.. new question..
« Reply #1 on: January 04, 2008, 07:50:25 am »
Hi,

Where did you hear lately that radiotherapy induces seizures? If so, what is the percentage? I think it is a good thing that you heard nothing on this forum!

Seizures were a complication in the old days when the tumors were so huge that they compressed the brain. Some parts of the brain are more prone to seizures than others. Brainstem, which some of us have compressed by the tumor, is generally not. Cerebellum is not but cerebrum is. Brain surgeries other than AN that involve the cerebrum (your thinking, emoting and speaking part) generally have 3-6 months of profilactic anti-seizure medication even if they do not induce seizures. Of course, some people will have seizures anyway without any brain surgery. I was told all this back in 1988 when I had my first brain surgery by the neurosurgeon. I was not given any anti-seizure med but the neurologist I was seeing at the time asked me a number of times if I was taking any because he was accustomed to seeing this doctor's patients taking those meds for a long time.

With the advent of MRIs with contrast, the tendency for tumors is to be discovered much smaller. In addition, the techniques are better as well so nobody talked to me about seizures now, the second time I went through the microsurgery. I have seen may surgeons and none have raised the question.

Theoretically, with radiotherapy, other parts of the brain might be affacted. When my neurologist recommended NOVALIS to me back in 2004, I asked him what parts of the brain are involved besides the brainstem. He said " your temporal lobe, a little bit". Each case, I am sure, is different just like the radiation used to kill the tumor, is. If you are really concerned about the seizures, I would recommend understanding which part of the CEREBRUM, if any, will get hit by radiation and how much. Statistically, however, your van might have trouble going because you will have a heart attack, not seizures! I would be more worried about your cholesterol and exercise habits!

                 Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Sheryl

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Re: OK gang.. new question..
« Reply #2 on: January 04, 2008, 04:12:45 pm »
Some of the side effects of radiosurgery CAN BE swelling around the tumor and scarring.  Note -- it is just a possibility as with all possible side effects.  It also depends where the tumor is as certain areas of the brain will be more susceptible to seizures.  Swelling and scarring would irritate the area and possibly cause seizures - as in my husband's case.  He has a benign brain tumor called a meningioma and had radiosurgery done on the regrowth (original surgery was 5/2004) on 10/1/07.  On Christmas day he had a seizure - not the flopping around kind, but had trouble speaking and a jerking motion of his right hand (his tumor is on the left, so opposite side affected).  After many tests and two days in the hospital, all other stuff was ruled out - stroke, clots, cardiac, etc.  When the MRI was done, you could see the swelling around the tumor so he's been put on anti-seizure meds and Decadron to decrease the swelling.  So far he's doing well.  Only fly in the ointment was communication between covering docs - they made him wait for a "neurosurgery" consult which never came - I kept trying to tell them that he had his tumor treated with radiosurgery and wasn't about to need a neurosurgeon.  Two and a half days in the hospital holding up a bed that someone may have needed and insurance paying all that extra.  Almost signed out AMA (against medical advice) but was advised that if that was in the record, insurance may not pay as he did not follow doctor's orders.
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

sgerrard

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Re: OK gang.. new question..
« Reply #3 on: January 04, 2008, 10:42:25 pm »
I had CK, three days of treatment. I drove about 40 miles there and 40 back each day, no problem. I would have no trouble taking a class at the same time. It may be a bit different with FSR over 6 weeks, but since every day's dose is smaller than the CK doses, I wouldn't expect it to produce fatigue.

I have heard nothing in particular associating seizures with radiation treatment of ANs, although I suppose it is possible if the AN is up against the brainstem.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

GM

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Re: OK gang.. new question..
« Reply #4 on: January 31, 2008, 07:00:54 am »
Although I treated my AN via Gamma Knife, I had not heard about any seizures after radiation treatment. 

Swelling of the tumor can cause some freaky side effects, but most swelling issues can be controlled by steroids.  By the way, some steroids can cause freaky side effects too  :o

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

mema

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Re: OK gang.. new question..
« Reply #5 on: January 31, 2008, 09:05:29 am »
Hi Tim,


Ironic that you mention seizures.  If you've followed my posts over the past 2 years you may have noticed I have been complaining tothe doc's about a brain movement I get.  When this happens I get shivers.    In May the neuro said it could be nerve damage.  Well 3 weeks ago I noticed it getting worse.  So I called to see if I could increase my med clonazepam(which is a seizure med plus multi-used for other things.).  He wants to see me to test for seizures.  At 1 yr post radiation they did test me for seizures, negative but I did get vertigo bad during the test.  I had to stay up the whole night.  I thought what a piece of cake.  Stay up all night watching betty davis movies and snacking.  Easier said than done.  Around 4 o'clock I started to nod off.  It was very hard to stay awake until 6am when my test was scheduled.  I don't want to go through that again.  My appointment is Feb 6th to see the neuro. I'll see what happens.                         

PS I really don't think its seizures, I still think nerve damage.

                                                              mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

leapyrtwins

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Re: OK gang.. new question..
« Reply #6 on: January 31, 2008, 09:20:49 am »
Didn't have radiation; opted for surgery.

However, my neurotologist told me in detail every possible side effect I could have from both radiation and surgery (God love him - he scared the hell out of me at the time ;D ) and I don't recall anything about seizures.

I'd ask your doctor.
 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Derek

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Re: OK gang.. new question..
« Reply #7 on: January 31, 2008, 01:33:58 pm »
Hi Tim...

I raised this question today with Dr Medbery on the CKPSG 'site and this was his response (quote) "Yes. But I have never seen it from AN treatment with GK or CK and it is rare in any case. Actually I'm not sure if radiation causes seizures or whether it is the underlying cause that needed radiation. But seizures can occur after radiation to the brain." (unquote

Regards

Derek
« Last Edit: January 31, 2008, 06:28:51 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

ppearl214

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Re: OK gang.. new question..
« Reply #8 on: January 31, 2008, 02:06:40 pm »
Hey Derek,

thanks for checking the CK Patient Support board! Great idea :)


Hi Tim,
In my case, I was prescriped short-term dose of Keppra (anti-seizure meds) immediately post CK. I have sensitivities to meds and it was causing me side affects, so I was off it after 1 wk. Dr, in my case, felt that since I was on Decacrap (Decadron) post-CK, any swelling (edema) that would occur that would potentially bring on seizures would be minimalized due to Decadron, after he removed me from the Keppra.

it is my understanding that is can occur... rarely, but can... as you know, "individual results may vary"....

Hang in there! good to see you posting!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: OK gang.. new question..
« Reply #9 on: January 31, 2008, 02:39:22 pm »
Sorry buddy, no seizures for me post CK treatment-but then again, I am the only AN poster who loved being on Decadron. I love steroids! Nor do I remember that being discussed.  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys