Gamma Knife...radiation exposure worries?

[wavegeek]

Has anyone had the gamma knife surgery and in doing so worried about radiation exposure? I know it is extremely high in order to destroy the nerve. I would love to know how people deal with and approach the fact even though the radiation is highly targeted, it is still approaching high theapuetic levels. I have pain in both sides of the trigeminal nerve and may need one dose to each side. The idea of that much radiation freaks me out to point I am consdiering Rhizotomy instead. Just my comfort level...

Thanks!
Alex

[bilateral]

Hi Alex,

I think you are right to be concerned about radiation exposure: In answer to my question re that very same concern that you have, I was told by two neurosurgeons that on the whole these kind of treatments can cause problems in a number of years time and that therefore they are better for older people where that might not necessarily be an issue.

Have you considered the MVD?

Take care,

Anne

[wavegeek]

Hi Anne. Thanks for replying. I do not qualify for MVD because I do not have compression of the nerve. I have trigeminal neuropathic pain cased by dental injury. It is constant dull throbbing, not electric TN type pain. I am also considering Rhizotomy or peripheral nerve stimulation. I did read about a dentist named Dr. Shankland in Ohio you uses a very special trigmenial nerve block to treat pain. All these different types of surgery scare me because of possibe serious and irreversible side-effects...not like getting your tonsils taken out! Sometimes it seems like living with the pain is more indicated than risking serious side effects from the surgery. Did you do the gamma knife?

[bilateral]

Hi Alex,

No I have not had gamma knife treatment and don't want to either after what the neurosurgeons said.

I agree - all the surgeries can have possible serious side effects - hence it's important to research them as much as you can, so that you can take an informed decision.

I am sorry to hear that you have constant pain. That must be hard to cope with.

Take care,

Anne

[wavegeek]

I have good days and bad days. Sometimes I might even have a good/bad day! I still function as I did before this pain and it hasn't stopped me from functioning at a good level, just makes it harder with "more weight on my shoulder." I won't stop until I get it resolved or at least under control. I have more of a trigeminal neuropathic pain and not classic TN. Just constant throbbing, like a headache but in my upper molar area on the right and left sides. What kind of situation is yours and what therapy have you tried?

[bilateral]

Long-term outcomes of Gamma Knife radiosurgery for classic trigeminal neuralgia: implications of treatment and critical review of the literature
Anil A. Dhople, M.D.1, Jared R. Adams, Ph.D.1, William W. Maggio, M.D.2, Shahid A. Naqvi, Ph.D.1, William F. Regine, M.D.1, and Young Kwok, M.D.1

1Departments of Radiation Oncology and 2Neurosurgery, University of Maryland School of Medicine , Baltimore , Maryland

Object

Few long-term studies of Gamma Knife surgery (GKS) for trigeminal neuralgia (TN) exist. The authors report their long-term experience with the use of GKS in a previously reported cohort of patients with TN that has now been followed since 1996.

Methods

One hundred twelve patients with TN were treated with GKS at the University of Maryland between June 1996 and July 2001. Of these, 67% had no invasive operations for TN prior to GKS, 13% had 1, 4% had 2, and 16% had ≥ 3. The right side was affected in 56% of cases, predominantly involving V2 (26%), V3 (24%), or a combination of both (18%) branches. The median age at diagnosis was 56 years, and median age at GKS was 64 years. The median prescription dose of 75 Gy (range 70–80 Gy) was delivered to the involved trigeminal nerve root entry zone. The authors assessed the degree of pain before and after GKS by using the Barrow Neurological Institute (BNI) pain scale.

Results

In total, 102 patients took the survey at least once, for a response rate of 91%. Although not found to alter the conclusions of this study, 7 cases of atypical TN were found and these patients were removed, for a total of 95 cases herein analyzed. The median follow-up was 5.6 years (range 13–115 months). Before GKS, 88% of patients categorized their pain as BNI IV or V (inadequate control or severe pain on medication), whereas the remainder described their pain as BNI III (some pain, but controlled on medication).

After GKS, 64% reported a BNI score of I (no pain, no medications), 5% had BNI II (no pain, still on medication), 12% had BNI III, and 19% reported a BNI score of IV or V. The median time to response was 2 weeks (range 0–12 weeks) and the median response duration was 32 months (range 0–112 months). Eighty-one percent reported initial pain relief, and actuarial rates of freedom from treatment failure at 1, 3, 5, and 7 years were 60, 41, 34, and 22%, respectively. Response duration was significantly better for those who had no prior invasive treatment versus those in whom a previous surgical intervention had failed (32 vs 21 months, p < 0.02). New bothersome facial numbness was reported in 6% of cases.

Conclusions

This study represents one of the longest reported median follow-up periods and actuarial results for a cohort of patients with classic TN treated with GKS. Although GKS achieves excellent rates of initial pain relief, these results suggest a steady rate of late failure, particularly among patients who had undergone prior invasive surgical treatment. Despite a higher than expected recurrence rate, GKS remains a viable treatment option, particularly for patients who have had no prior invasive procedures. Patients with recurrences can still be offered salvage therapy with either repeat GKS, microvascular decompression, or rhizotomy.

[StacyLC]

Hi Alex, it sounds like you have exactly what I have. How did you arrive at your diagnosis of TNP? I have kind of self-diagnosed myself after 2 years of visits and treatments with all the specialists I can find. I am seeing a new neuro today just to manage the meds that Graff-Radford has me trying. If meds don' t do it for me, and so far they are not, the next step is a sphenopalatine ganglion block. Have you had that? Next on the list for me is the gamma knife. I understand your concern about side effects, and since I'm not quite there yet I haven't looked into them. But I struggle with this pain so much I'm willing to try anything! I take percocet every afternoon when I am sure I won't have to drive any more that day, but that means my days are filled with pain and my nights are shot. I have little kids and I feel like I'm missing out on half of my life right now. I would be happy to share research and experience with you if you want, you can contact me offline or on here. I haven't been checking in regularly but I will. Best of luck!!

Stacy

[konfuzed]

[QUOTE=wavegeek;376438] I did read about a dentist named Dr. Shankland in Ohio you uses a very special trigmenial nerve block to treat pain. QUOTE]

Hi Alex,

Just thought you should know that Dr. Shankland was put on five years probation in 2007.

Also if you are close to dayton you might want to check out Dr. Jamal Taha at Kettering Hospital. He is a great neuro and is the man in charge for the gamma knife there. He performed my MVD back in December and i am still pain free.

Hope this helps.

Shannon

[doglover]

Hi,
There was a recent study in the UK about people who received gamma knife treatment for brain tumor who had some cognitive deficits some years later. It is on the BBC news website under health news. In my reading of the literature, there does not appear to be an increased risk of cancer, although there is a theoretical risk given the dose used.
Are you sure you have no arterial compression at the root? Did you have a thin cut MRI? Your might have both damage to the nerve and arterial compression?
Good luck making a decision and finding the best medical advice.
Doglover

[wavegeek]

I had a an MRI with and without contrast and other than some slight sinus inflammation the neurologist said it was completely normal. I did not have a thin cut or at least I don't know what that is.