Post-Gamma Knife Symptom Questions

General General TN & GPN (Old Site)
1

Hi there,

I hope that someone has some insight for me.

I had Gamma Knife in October, 2011. My pain remained for several weeks, then all of a sudden, my pain was gone. I was virtually pain-free for about a month. THEN, my pain returned, has moved, and I have weird pain in my mouth, which I didn't have before the procedure.

So, the first question I have is - Does anyone out there have mouth pain? It feels like I have sores/scratches in my mouth, but I do not. I even went to the dentist, as I thought I had some mouth infection; again this was not the case. I have not had mouth pain before; only since my pain returned after the Gamma Knife.

Also, my doctor thinks I should have the Gamma Knife OR Cyber Knife again instead of going right to the brain surgery option. Do any of you have experience with having the procedure done more than once? Do you have other treatment options you think I should try before doing GK again? They want me to resume taking high doses of neurontin, also. I don't want to be on meds forever.

I would really appreciate any help here, as I am feeling quite desperate.

Thank you in advance ~

Christine

2

A couple of thoughts here, Christine. Realize as I write that although I'm technically trained and have read medical literature on behalf of patients for 17 years, I'm not a physician.

It sounds as if your Gamma Knife has failed unusually early, or perhaps you could have some form of arachnoiditis (nerve adhesions) due to scarring created by the procedure. But you should understand the statistics on the procedure, as acknowledged in practice standards of the International Association for Radio Surgery: a 50% rate of pain recurrence within three years after a first procedure. The stats on second procedures are somewhat murky (I don't see papers in the literature which offer quantitative data on second procedures) -- and there is a lifetime limit of two Gamma Knife surgeries due to radiation exposure.

MVD can be done following GK, though chances of success won't be as high as when MVD is the first procedure done. There are some papers out there, but results seem to vary between surgical teams. For Type I (classic or "typical") TN, I've heard numbers in the range of 70% success on a second procedure, but I don't regard that range as "gospel". It's an approximation at best. Some people have RF Rhizotomy done as a second procedure, but that is increasingly being discouraged by neurosurgeons who regard rhizotomy as "adding downstream damage to nerve root damage" from the previous GK.

The treatment alternatives to doing MVD or (with lower effectiveness and less persistent pain relief) GK are all medication based. I know you don't want to be on meds forever. But you may find that it's either that or take your chances with surgery or live with truly horrid pain.

I would suggest that you get a second opinion from someone who has done a great many MVDs, some of them as second procedures behind GK. Meantime, I'll start digging for authoritative papers tomorrow morning. Meantime, I hope anyone with personal experience of a second GK procedure will weigh in on their outcomes.

Regards,

Red

3

I had gamma knife for trigeminal neuralgia in August. Six month post treatment I still have the tooth pain and I now have numbness in the whole left side of my face. It radiates up under my eye into my ear and nose. my mouth and tongue feel like I was burned drinking hot coffee. My doctor doubled my Neurotin and upped my dose of Tegrtol. He said to use chloroseptic for the mouth pain. So far I haven't gotten any relief......Bonnie

4

I promised I'd sniff out some authoritative papers. The following abstract qualifies as such.

Gamma knife surgery for trigeminal neuralgia: outcomes and prognostic factors, J Neurosurg 102:434–441, 2005


JASON SHEEHAN, M.D., PH.D., HUNG-CHUAN PAN, M.D., MATEI STROILA, PH.D.,
AND LADISLAU STEINER, M.D., PH.D.


Lars Leksell Center for Gamma Surgery, Department of Neurological Surgery, University of Virginia
Health System, Charlottesville, Virginia


Object. Microvascular decompression (MVD) and percutaneous ablation surgery have historically been the treatments of choice for medically refractory trigeminal neuralgia (TN). Gamma knife surgery (GKS) has been used as an alternative, minimally invasive treatment in TN. In the present study, the authors evaluated the long-term results of GKS in the treatment of TN.

Methods. From 1996 to 2003, 151 cases of TN were treated with GKS. In this group, radiosurgery was performed once in 136 patients, twice in 14 patients, and three times in one patient. The types of TN were as follows: 122 patients with typical TN, three with atypical TN, four with multiple sclerosis–associated TN, and seven with TN and a history of a cavernous sinus tumor. In each case, the chosen radiosurgical target was located 2 to 4 mm anterior to the entry of the trigeminal nerve into the pons. The maximal radiation doses ranged from 50 to 90 Gy.

The median age of the patients was 68 years (range 22–90 years), and the median time from diagnosis to GKS was 72 months (range 1–276 months). The median follow up was 19 months (range 2–96 months). Clinical outcomes and postradiosurgical magnetic resonance (MR) imaging studies were analyzed. Univariate and multivariate analyses were performed to evaluate factors that correlated with a favorable, pain-free outcome.


The mean time to relief of pain was 24 days (range 1–180 days). Forty-seven, 45, and 34% of patients were pain free without medication at the 1-, 2-, and 3-year follow ups, respectively. Ninety, 77, and 70% of patients experienced some improvement in pain at the 1-, 2-, and 3-year follow ups, respectively. Thirty-three (27%) of 122 patients with initial improvement subsequently experienced pain recurrence a median of 12 months (range 2–34 months) post-GKS. Among those whose symptoms recurred, 14 patients underwent additional GKS, six MVD, four glycerol injection, and one patient a percutaneous radiofrequency rhizotomy. Twelve patients (9%) suffered the onset of new facial numbness post-GKS.

Changes on MR images post-GKS were noted in nine patients (7%). On univariate analysis, right-sided neuralgia (p =0.0002) and a previous neurectomy (p = 0.04) correlated with a pain-free outcome; on multivariate analysis, both rightsided neuralgia (p = 0.032) and patient age (p = 0.05) were statistically significant. New onset of facial numbness following GKS correlated with undergoing more than one GKS (p = 0.002).

Conclusions. At the last follow up, GKS effected pain relief in 44% of patients. Some degree of pain improvement at 3 years post-GKS was noted in 70% of patients with TN. Although less effective than MVD, GKS remains a reasonable treatment option for those unwilling or unable to undergo more invasive surgical approaches and offers a low risk of side effects.

=====================

On the whole, the part of this work that is probably most pertinent for our discussion thread is the range of time periods between the procedure and any observed pain relief. 180 days was pretty much maximum in this sample. The outcome statistics even in a relatively short period (three years) were also not all that promising, certainly in line with those I reported above from the practice standard of the IRSA.

My earlier suggestion still seems pertinent: seek a consultation with a surgeon who has done a lot of MVD's and see if you seem to be a candidate for that procedure.

Regards and Best,

Red

5

Bonnie,

I appreciate your reply and am sorry to hear that you are feeling poorly still. Did you have ANY relief? I had several weeks of almost pain-free living. Then, all of sudden things turned way worse. I have the same mouth pain as you(feel like I burned my mouth :( very weird/uncomfortable ).

I just scheduled my second procedure for next week. I am going to try Cyber knife this time, as the screws in my head from the halo used with Gamma took forever to heal and it was very painful . I am doing this rather than relying on drugs indefinitely; the neurontin makes me super tired and loopy and it does very little for my pain.

My doc says the success rate is still 80% for people who have the procedure re-done. I am praying I am in that 80% this time. If not then the full brain operation will be this summer.

Let me know if you have any questions or can offer additional feedback.

Best to you,
Christine



duster1951 said:

I had gamma knife for trigeminal neuralgia in August. Six month post treatment I still have the tooth pain and I now have numbness in the whole left side of my face. It radiates up under my eye into my ear and nose. my mouth and tongue feel like I was burned drinking hot coffee. My doctor doubled my Neurotin and upped my dose of Tegrtol. He said to use chloroseptic for the mouth pain. So far I haven't gotten any relief......Bonnie

6



Richard A. "Red" Lawhern said:

I promised I'd sniff out some authoritative papers. The following abstract qualifies as such.

Hi Red,

Thank you so much. I am going to read this carefully and still welcome any and all suggestions/advice.

I scheduled my second surgery for next week. I can not fully function at work on the high doses of neurontin that I am taking and my doc says the rate of success is still 80%, which I consider to be pretty good.

I am opting for the Cyber Knife this time, as the holes left by the halo with Gamma Knife last time were long to heal, and very painful. Do you have thoughts on this procedure versus the GK?

I appreciate you very much,

Christine

Gamma knife surgery for trigeminal neuralgia: outcomes and prognostic factors, J Neurosurg 102:434–441, 2005


JASON SHEEHAN, M.D., PH.D., HUNG-CHUAN PAN, M.D., MATEI STROILA, PH.D.,
AND LADISLAU STEINER, M.D., PH.D.


Lars Leksell Center for Gamma Surgery, Department of Neurological Surgery, University of Virginia
Health System, Charlottesville, Virginia


Object. Microvascular decompression (MVD) and percutaneous ablation surgery have historically been the treatments of choice for medically refractory trigeminal neuralgia (TN). Gamma knife surgery (GKS) has been used as an alternative, minimally invasive treatment in TN. In the present study, the authors evaluated the long-term results of GKS in the treatment of TN.

Methods. From 1996 to 2003, 151 cases of TN were treated with GKS. In this group, radiosurgery was performed once in 136 patients, twice in 14 patients, and three times in one patient. The types of TN were as follows: 122 patients with typical TN, three with atypical TN, four with multiple sclerosis–associated TN, and seven with TN and a history of a cavernous sinus tumor. In each case, the chosen radiosurgical target was located 2 to 4 mm anterior to the entry of the trigeminal nerve into the pons. The maximal radiation doses ranged from 50 to 90 Gy.

The median age of the patients was 68 years (range 22–90 years), and the median time from diagnosis to GKS was 72 months (range 1–276 months). The median follow up was 19 months (range 2–96 months). Clinical outcomes and postradiosurgical magnetic resonance (MR) imaging studies were analyzed. Univariate and multivariate analyses were performed to evaluate factors that correlated with a favorable, pain-free outcome.


The mean time to relief of pain was 24 days (range 1–180 days). Forty-seven, 45, and 34% of patients were pain free without medication at the 1-, 2-, and 3-year follow ups, respectively. Ninety, 77, and 70% of patients experienced some improvement in pain at the 1-, 2-, and 3-year follow ups, respectively. Thirty-three (27%) of 122 patients with initial improvement subsequently experienced pain recurrence a median of 12 months (range 2–34 months) post-GKS. Among those whose symptoms recurred, 14 patients underwent additional GKS, six MVD, four glycerol injection, and one patient a percutaneous radiofrequency rhizotomy. Twelve patients (9%) suffered the onset of new facial numbness post-GKS.

Changes on MR images post-GKS were noted in nine patients (7%). On univariate analysis, right-sided neuralgia (p =0.0002) and a previous neurectomy (p = 0.04) correlated with a pain-free outcome; on multivariate analysis, both rightsided neuralgia (p = 0.032) and patient age (p = 0.05) were statistically significant. New onset of facial numbness following GKS correlated with undergoing more than one GKS (p = 0.002).

Conclusions. At the last follow up, GKS effected pain relief in 44% of patients. Some degree of pain improvement at 3 years post-GKS was noted in 70% of patients with TN. Although less effective than MVD, GKS remains a reasonable treatment option for those unwilling or unable to undergo more invasive surgical approaches and offers a low risk of side effects.

=====================

On the whole, the part of this work that is probably most pertinent for our discussion thread is the range of time periods between the procedure and any observed pain relief. 180 days was pretty much maximum in this sample. The outcome statistics even in a relatively short period (three years) were also not all that promising, certainly in line with those I reported above from the practice standard of the IRSA.

My earlier suggestion still seems pertinent: seek a consultation with a surgeon who has done a lot of MVD's and see if you seem to be a candidate for that procedure.

Regards and Best,

Red

7

I forgot to mention to you that my neurosurgeon is one of the most qualified in the Rocky Mountain Region.

He has performed many GK, CK, and MVD surgeries.

Richard A. "Red" Lawhern said:

I promised I'd sniff out some authoritative papers. The following abstract qualifies as such.

Gamma knife surgery for trigeminal neuralgia: outcomes and prognostic factors, J Neurosurg 102:434–441, 2005

JASON SHEEHAN, M.D., PH.D., HUNG-CHUAN PAN, M.D., MATEI STROILA, PH.D.,
AND LADISLAU STEINER, M.D., PH.D.


Lars Leksell Center for Gamma Surgery, Department of Neurological Surgery, University of Virginia
Health System, Charlottesville, Virginia


Object. Microvascular decompression (MVD) and percutaneous ablation surgery have historically been the treatments of choice for medically refractory trigeminal neuralgia (TN). Gamma knife surgery (GKS) has been used as an alternative, minimally invasive treatment in TN. In the present study, the authors evaluated the long-term results of GKS in the treatment of TN.

Methods. From 1996 to 2003, 151 cases of TN were treated with GKS. In this group, radiosurgery was performed once in 136 patients, twice in 14 patients, and three times in one patient. The types of TN were as follows: 122 patients with typical TN, three with atypical TN, four with multiple sclerosis–associated TN, and seven with TN and a history of a cavernous sinus tumor. In each case, the chosen radiosurgical target was located 2 to 4 mm anterior to the entry of the trigeminal nerve into the pons. The maximal radiation doses ranged from 50 to 90 Gy.

The median age of the patients was 68 years (range 22–90 years), and the median time from diagnosis to GKS was 72 months (range 1–276 months). The median follow up was 19 months (range 2–96 months). Clinical outcomes and postradiosurgical magnetic resonance (MR) imaging studies were analyzed. Univariate and multivariate analyses were performed to evaluate factors that correlated with a favorable, pain-free outcome.


The mean time to relief of pain was 24 days (range 1–180 days). Forty-seven, 45, and 34% of patients were pain free without medication at the 1-, 2-, and 3-year follow ups, respectively. Ninety, 77, and 70% of patients experienced some improvement in pain at the 1-, 2-, and 3-year follow ups, respectively. Thirty-three (27%) of 122 patients with initial improvement subsequently experienced pain recurrence a median of 12 months (range 2–34 months) post-GKS. Among those whose symptoms recurred, 14 patients underwent additional GKS, six MVD, four glycerol injection, and one patient a percutaneous radiofrequency rhizotomy. Twelve patients (9%) suffered the onset of new facial numbness post-GKS.

Changes on MR images post-GKS were noted in nine patients (7%). On univariate analysis, right-sided neuralgia (p =0.0002) and a previous neurectomy (p = 0.04) correlated with a pain-free outcome; on multivariate analysis, both rightsided neuralgia (p = 0.032) and patient age (p = 0.05) were statistically significant. New onset of facial numbness following GKS correlated with undergoing more than one GKS (p = 0.002).

Conclusions. At the last follow up, GKS effected pain relief in 44% of patients. Some degree of pain improvement at 3 years post-GKS was noted in 70% of patients with TN. Although less effective than MVD, GKS remains a reasonable treatment option for those unwilling or unable to undergo more invasive surgical approaches and offers a low risk of side effects.

=====================

On the whole, the part of this work that is probably most pertinent for our discussion thread is the range of time periods between the procedure and any observed pain relief. 180 days was pretty much maximum in this sample. The outcome statistics even in a relatively short period (three years) were also not all that promising, certainly in line with those I reported above from the practice standard of the IRSA.

My earlier suggestion still seems pertinent: seek a consultation with a surgeon who has done a lot of MVD's and see if you seem to be a candidate for that procedure.

Regards and Best,

Red