After Sereotactic Radiosurgery - increased symptoms and PAIN

[morning_dove66]

Hi,
I first found out about my AN Sept 2006, when I went to the doctor for numbness in my face. The AN was found on my CT scan 2.5cm x 1.9cm. I had SRS in October 2006. Since Feb 2007 my facial numbness has gradually increased, I have twitching of my upper and lower eyelids and lips, and I have a lot of pain in my teeth.

I can't take the pain in my teeth, and the meds they have me on make me nausious and very tired. I am frustrated and not getting any real answers from my doctors. I even had 2 new doctors review my records. I get more of an, I didn't do it so go back to the other, attitude.

Has anyone gone through similar situation? Was pain temporary?

[Palace]

"Hi morning_dove66!"

I found out about my AN last summer, around this time as well.  We had SRS close to the same month.  Your facial numbness has gradually increased and mine comes and goes.  I occasionally have the twitching of one eye on the AN side.  (you mentioned the lower eyelids and lips)  I have some numbness in my lips on the AN (rt) side.  I have numbness on the right side of my gums with the sensitivity of the teeth on the right side.

My AN size was 22mm and I'm hoping it will begin shrinking soon.  I will have another MRI in early November. 

I'm just curious if you talked with your dentist about your teeth, as well!  If you grind your teeth at night with stress, this can exacerbate the problem of pain in the teeth.  You might talk with your dentist about the problem and consider a "night-guard" being made if, you are a "night-grinder."

I reported my situation to my dentist so, when he works on me he knows my current history, etc.

What meds were you given that made you nausious?



My best,



Palace

[morning_dove66]

Palace

I first went to my dentist about the pain in my teeth and he sent me to an Endodontist. I almost had a root canal I did not need. My ENT said it is damage to the facial nerve due to SRS, he sent me to a pain clinic and I was on Ultram and Neurontin, now Darvocet and Lyrica. I am affraid of the pain meds, I don't like that they are addictive. I also have Narcolepcy, so anything that makes me drowsey interfers with my pills that keep me awake.

I can't put any pressure on the left side of my mouth, most of the teeth on the left hurt. I just want the pain to stop.

[jerseygirl]

That sounds to me like trigeminal neuralgia. Did you try acupuncture?

        Eve

[ppearl214]

hello morning_dove66 and welcome to the forums.  I'm glad to see you participating out here to help gain answers you seek. As you can see already, we are here to help, to chime in and to provide shoulders and good ears when necessary.

I'm not sure if your drs explained to you about the edema/swelling that can occur immediate post radiation.  It is not unusual for the AN to swell from 3-9 mos post radiation treatment.... based on the timeframe you have provided, it does fall in line with potential swelling that can occur.  I do know that my AN swelled in the first 6 mos.  Typical meds may be provided, such as Ibuprofen and possible steroids (such as Decadron, etc) to help control the swelling.  Like you, I did experience some of the same post-radio symptoms (ie: twinges, facial numbness, etc), but they have lessened or disappeared over time.  As you know, "individual results may vary" and since you are now approx 10 mos post radiation, my hope is that the pain and such lessens now as they may start to disappear. 

Hang in there... I am now 16 mos post radio-surgery (Cyberknife) and most of all post-treatment issues have lessened or disappeared for me..... my hope is that they ease for you soon.

The "inbox" is always open if needed.... we are all here to help.

Be well and again, welcome to the boards,
Phyl

[Dealy]

Morning Dove- I had Fractionated Radiation last summer for a 2.5CM on my right side.I had MRI's at 6-9 months and finished my 1 year on July 26th. I have been having what I call shooters and Zappers to the right side of my face which is numb-inside my mouth-roof of my mouth-teeth etc. so I can relate. The MRI's have shown swelling with necrosis in the center. MY one year MRI showed that the tumor is shrinking in volume. I started on 100Mg twice a day-started yesterday of Celebrex which is designed to control inflammation. All the articles that I have read have stated that swelling is a good sign-although this does not always happen in all cases. The tumor is trying to grow and takes on fluid-thus the swelling. It also indicates that the radiation is doing it's job-killing the tumor. I like you feel like I have been to the dentist all the time-always feels like when the novocane was just wareing off. So I as one can relate to your frustrations. It has even affected my swallowing so I am regulated to certain soft food for now. I am coming up on 13 months-post radiation and just praying and hoping that this will cease one day. Hope you get better-hang in their-you are not alone. Ron

[Jim Scott]

Hi, morning_dove:

Welcome to the forum .  I trust you'll find some useful information here and elsewhere on the site.

I was sorry to read of your discomfort following radiation.  I concur with other AN patients who have undergone radiation treatments that tumor swelling is a pretty common reaction to the radiation.  I underwent 26 FSR treatments last autumn and experienced tumor swelling earlier this year, confirmed by an MRI scan in April.  A 'follow-up' MRI scan in late June indicated tumor shrinkage and definite signs of necrosis.  I still have a few isolated 'numb spots' on my lip and tongue but they can be ignored and may disappear in time as the affected nerves completely heal.  I would hope you'll have a similar experience.  Post-radiation tumor swelling is temporary and should subside soon.  Hang in there.  It really does get better.

Jim

[Lorenzo]

HI Morning_dove,

Like all the others, I too had FSR (CK) and experienced some of the problems and twinges and zaps and numbness related with tumour swelling. Fortunately for me, none were very strong or lastet for than than a few seconds at a time. More like stabs than anything else. Face, jaw, behind the ear, twitching eye... All those things settle. Mine settled when the AN started shrinking back and the nerves relaxed back. Of course while that was going on, that in itself caused some trouble with more twitches and stabs. Now, all is fine. has been for the past year.

Hope things will improve for you!

All the best, Lorenzo

[yardtick]

Morning Dove,
I had a translab last Sept.  In Dec I needed a root canal and in Feb I found out I did not need the root canal.  My neuroma is on the facial nerve and it took a neurologist to tell me this.  I still have the numbness, the pain in my teeth and I've worn a night guard for over 2 yrs.  I describe the pain as when you visit the Dentist, have your mouth frozen, and he drills and fills every tooth in your head.  The freezing starts to wear off and you are left with this weird half numb and very painful mouth. 
I felt for the longest time the Drs thought I was nuts.  A hypo, you know.  My sanity was slipping.  I went to my GP and asked for happy pills so I could at least cope at work.  I do not like taking meds either but sometimes you have to.  I not totally pain free, I suffer from massive headaches and since I went off of tagretol the painful teeth and nubness has come back.  I see another specialist Sept 6 and I'm hoping he will put me on something else.  I totally understand what you are going thru.
Anne Marie

[ceeceek]

Hey Dove,
I had endoscopic transphenoidal surgery for a vidian schwanomma....similar to an AN, but on the facial nerves and eye nerves....surgery aggrevated all of them including trigeminal...ouch to say the least..I am now facing cyberknife in Sept....and getting everything all aggrevated again..
So how did I deal? ACUPUNCTURE...
completely calmed the trigeminal...the tooth ache feeling etc. Am still working on the numbness in face..but hey, that does not hurt so it is no biggie...
I will work closely with my acupuncturist after radiation to decrease my chances of further damage. My largest risk is double vision, which I am experiencing and also treating with acupuncture....I have it very mild, and hope it does not get worse..he assures me , it can be handled and "not to wollly"..my doc is from china so I always tease him about his accent.
Hang in there and if you need just to "let it out" feel free to call
We are all in it together.
Ceeceek

[mema]

Morning Dove,                                                                                                                                                                         


I had increased sypmtoms after my FSR 25 treatments.  None involved my face or teeth.  My symptoms all involved  head spasms etc.  I guess no one person is exactly alike when it comes to AN treatments.  It is comforting to know that were all still around and hanging in there.                                                                                                                                             


                                                                                                    mema