Problems after Gamma Knife

General General TN & GPN (Old Site)
1

Hey Everybody,

I had Gamma Knife surgery on 12/4/12 and am now experiencing constant burning pain with pins and needles on the side I had the surgery. I went back to my neurosurgeon who told me I have paresthesia and then went to my neurologist who told me that I have dysesthesia... I also went to an eye doctor because the white of my eye on the same side of my face has been red for almost a year and was getting worse. The eye doctor told me that I have episcleritus which is caused by the herpes zoster virus.

I have had drooping on the same side of my face for the entire year since I was diagnosed with viral trigeminal neuralgia

I am still having the TN attacks and the constant pain of pins & needles, burning sensation, constant pressure behind my eye and ear and I feel like spider webs or bugs are on that side of my face all of the time. These feeling are from my forehead all the way down the side of my face to my chin including half of my nose and the entire left side of my teeth.

Neither the neurologist or the neurosugeon have any suggestions except to up my medications more and to send me to a pain clinic. I am upset because from what I have found online recently that you are not supposed to do Gamma Knife on postherpetic neuralgia and they are acting like they didn't do anything wrong... They both told me that I will have to learn to live with the "new pain" because it will never go away. They said the TN should go away on its own with time but I am now stuck with the constant burning and pins & needles....

I asked my neurologist how was I going to be able to return to a slaes job that I have to make over 100 calls a day with this "new pain" once the TN goes away and he said he didnt know but that he would not help me with disabilty because he believes I will be able to go back to work one day...

I am on private disabilty right now but they are going to require me to apply for SSDI because I have been on private disabilty for almost a year now with TN.

I need help! Has anybody else experienced the burning pain and pins & needles after Gamma Knife? If so, does it get better? Anybody else had Gamma Knife with Post Herpetic Neuralgia and gotten better or worse? Anybody know a good neurologist in the Atlanta area that is understanding about TN?

I am crying as I write this which is causing more pain.... It literally hurts to blink all of the time....

Please give me any advice you can...

Thank you,

Tammy

2

OMG bless you!!!!!!!! I am so sorry you are going through this. I wish I knew some advice for you on this. Maybe go to another neurosurgeon and consult with them. Give some people time to get on here and see your post I am sure someone may have more advice than I am giving you. And if no one else has responded by morning, come back, find your post and reply to it with the word BUMP so that it will bump it back to the top. Give it more time, and do the same thing again until someone answers you. You can also message Red and see if he knows anything about this. (((((((BIG HUGS)))))))) and good luck to you hun.

3

absolutely send a message to Red - he will know which way to guide you -- you may have to go further from atlanta - I had to fly from MO to MI to get great treatment

see if your primary or any doctor

will call you in a prescription for lidocaine patches and

lidocaine mouthwash to calm things down till you can see a real specialist!!!

Look under the doctor's tab above - and consider going to the ER and getting some narcotics if you have to!!!!

4

This is an awful predicament to find yourself in…on top of TN pain!! I know exactly how you feel because it happened to me after semi pain relief in gamma knife 1 & 2! I had GK in 04 and again in 05. The harsh burning does let up… slowly. I hope to be rid of it some day, but with anethesia delarosa, it’s a life long opportunity to become wise and careful about my self care. Please msg me privately, or friend me for the whole story. It is a sincere, great loss to be trusted with this disorder, but there are gains as well. I work from home and speak minimally, so in a way there is great blessing here. Even at 50% of my normal capacity, I end each day very grateful for accomplishing what I have done. I will be praying for peace like a river to wah over you!

5

Tammy im so sorry they told you gamma would relive your pain!! There IS no real answer and everybody is somewhat different in their own experience with TN Are you currently on any meds?? I have type 2 pain which came with alot of crawling/burning/pressure behind eyes like you were saying I am currently on 75 mg of nortriptyline which has helped And I try to eat healthy which also helps! I hope u find relief soon

6

Tammy I dont know what to say but to say that I am thinking of you and praying for you. xxx

7

Tammy, you have multiple issues here. So let me take them one at a time.

First, Post Herpetic Neuralgia (PHN) is associated with Shingles. If you didn't have an obvious rash, then your physician can be forgiven for not making a distinction between the type and distribution of pain that you had versus TN. TN has different causes.

Second, the present standard of treatment for PHN is a short course of an anti-viral med, followed by several weeks to months of Neurontin, until the rash clears. I don't think I've talked to anybody else in 18 years who has been on an anti-viral med for six months.

Third, you are correct that Gamma Knife is generally not used for PHN. If I had my way, it wouldn't be used for ANY facial neuralgia except in rare cases where the patient is not a good candidate for other surgical procedures because of blood pressure, cardiac or stroke problems. In the best case, recurrence rate with GK is about 50% within 3 years, and you can only do two of them in a lifetime. Some patients like you do experience parasthesia after a GK procedure, though that doesn't appear to be common.

Fourth, it is possible to do MVD following a Gamma Knife, but the outcomes aren't generally as good as when MVD is used as the procedure of choice the first time. Some neurosurgeons won't do MVD under those circumstances unless high resolution MRI shows a continuing compression of the nerve by blood vessels. When it is done as a second procedure, the success rates I've seen reported for MVD after GK have varied between 50% and 70%.

If you go into pain management, I suspect the primary avenue of approach is likely to be opioids. Parasthesia is an indication of neuropathy -- literally physical damage to the nerve, somewhat different from TN (neuralgia) which is an inflammatory condition of one nerve.

If your present neurologist won't help you to sort out disability issues, then perhaps you need to find someone who will reevaluate you and follow up if they believe your condition likely to persist. Meantime., my advice would be to seek out a more qualified neurosurgeon for a followup second opinion and to talk about MVD. You can start with our "find a doctor" page in the menu above. That page also has a link to the medical providers' page at the TN Association.

I'm sorry you're having such a rough time. Hopefully this note may give you a framework for looking at your options.

Regards, Red

8

Thank you Red!

Do neurosurgeons do MVD for postherpetic neuralgia? Will the paresthesia and dysesthesia get worse if I have another surgery?

If surgery is not an option then have you talked to anybody that has had postherpetic neuralgia and how long it last?

Will the paresthesia and dysesthesia get better?

So many question.....

9

Post Herpetic Neuralgia isn't caused by vascular compressions, so MVD is not routinely considered. PHN that is treated with Neurontin plus a short course of an anti-viral med typically lasts a few weeks to possibly six months. I've rarely heard of cases lasting a year.

Parasthesia and Dysesthesia can get better without specific treatment in some patients. They are more typical of neuropathy (discrete mechanical damage to a nerve) than of TN. A lot depends on the causes, and yours seems to be a side effect of GK surgery. I have no statistics on these outcomes following Gamma Knife. You'll need to ask a neurosurgeon on this one.

Regards, Red

10

Hey Red,

I got all of my neurosurgeon doctor records and they clearly state from the beginning that the neurosurgeon thought my trigeminal neuralgia was viral and that he reccommended Gamma Knife for viral TN. Have you ever heard of this? It has been almost 5 months since the GK surgery and I am much worse off now than I was before the surgery because of the constant pain on top of having the zapping pain throughout the day. My neurosurgeon told me there isn't anything else he can do for me and referred me to a pain management clinic. Is it possible that the GK surgery caused the extra pain I am having because I have postherpetic neuralgia? What should I do now? He told me the "new pains" are from GK and are not fixable....

Richard A. "Red" Lawhern said:

Post Herpetic Neuralgia isn't caused by vascular compressions, so MVD is not routinely considered. PHN that is treated with Neurontin plus a short course of an anti-viral med typically lasts a few weeks to possibly six months. I've rarely heard of cases lasting a year.

Parasthesia and Dysesthesia can get better without specific treatment in some patients. They are more typical of neuropathy (discrete mechanical damage to a nerve) than of TN. A lot depends on the causes, and yours seems to be a side effect of GK surgery. I have no statistics on these outcomes following Gamma Knife. You'll need to ask a neurosurgeon on this one.

Regards, Red

11

It is "possible" that GK surgery failed or introduced new problems. Whether that's what actually happened, is next to impossible to know. If you're still having this type of pain after six months to a year, then I'd say your options may boil down to managing the symptoms with opioid and tricyclic antidepressant drugs which often work against neuropathy. Few surgeons would recommend RF Rhizotomy, since there has already been damage to the nerve, and Rhizotomy only adds more in an effort to reduce the efficiency of the nerve in transmitting downstream impulses.

I'm sorry I can't offer you more, Tammy. You got bad surgical advice in the first place. If it were up to me, Gamma Knife would not be used in trigeminal pain except in patients who are for some reason not good candidates for MVD.

Regards, Red

12

Hey Red,

Thank you for responding to me. I guess my main question is if my doctor knew it was viral and still reccommended Gamma Knife is that wrong? I cannot find any website that says a treatment for postherpetic neuralgia being Gamma Knife. I feel like this was an surgery that was performed that was not needed that caused additional pain.

Any information is greatly appreciated.

Richard A. "Red" Lawhern said:

It is "possible" that GK surgery failed or introduced new problems. Whether that's what actually happened, is next to impossible to know. If you're still having this type of pain after six months to a year, then I'd say your options may boil down to managing the symptoms with opioid and tricyclic antidepressant drugs which often work against neuropathy. Few surgeons would recommend RF Rhizotomy, since there has already been damage to the nerve, and Rhizotomy only adds more in an effort to reduce the efficiency of the nerve in transmitting downstream impulses.

I'm sorry I can't offer you more, Tammy. You got bad surgical advice in the first place. If it were up to me, Gamma Knife would not be used in trigeminal pain except in patients who are for some reason not good candidates for MVD.

Regards, Red

13

Even the practice standard of the International Association for Radio Surgery does not recommend Gamma Knife in cases of post-herpetic neuralgia. However, doctors who practice at hospitals which have invested millions of dollars in a gamma knife facility, sometimes find themselves pressured to use the facility. In my personal view, your doctor committed at least negligent disregard for prevailing medical practice standards.

Regards, Red

14

Hey Red,

It has now been 9 months since the gamma knife for viral trigeminal neuralgia and I am worse now than before. My jaw is locking up more frequently and I have constant burning on that side of my face with pins & needles, throbbing pain, numbness on that side of my face (my teeth are numb and feel frozen), pressure in my left eye and ear. I think I have figured out what has happened to me with much research but would like your opinion.

4/2012 - sharp stabbing pain on left side of face and developed Bell's Palsy, left eye became red

(I believe I developed Zoster Sine Herpete which is the herpes zoster virus without the shingles rash)

Zoster Sine Herpete caused Postherpetic Neuralgia

12/2012 - Gamma Knife surgery was perfromed

2/2013 - eye pain became much worse and and finally went to an eye doctor on my own and was diagnosed with episcleritis which is also caused by herpes zoster

3/2013 - Told neurosurgeon of the new pains and he said it was side effects of Gamma Knife and there wasn't anything else he can do for me.

7//2013 - Talked to my neurologist about the new problems since the Gamma Knife and asked him to evaluate me for the nerve damage since there is a place here inAatlanta that does not diagnose but will treat nerve damage for brain and spinal cord injuries. He refused to evaluate me and said that I should go to someone else for a diagnoses. (he referred me to the neurosurgeon and they are friends). I told him that I had called the Mayo Clinic and talked to a nurse who took down my information and called me back after speaking with a doctor. The Mayo Clinic told me to ask my neurologist to examin me for Trigeminal Deafferentation (Anesthesia Dolorosa). My neurlogist then told me that since I called The Mayo Clinic then I should go there for help. I explained that I could get help locally if he would just evaluate me. He refused.

I guess my question is do my symptoms sound like AD and who can help me with finding out if that is what is wrong with me? A neurologist or a neurosugeon? I have called numerous neurosurgeons that will not see me because I had Gamma Knife. I went to one other neurologist that said gamma knife is a standard procedure for PHN but he didn't believe that I had PHN because I never had shingles. He didn't know about Zoster Sine Herpete so I didn't go back to him. At this point I feel like I know more about what is going on with me than the doctors and it is very frustrating when they don't want to listen to me. I have an appointment with a new neurologist tomorrow and I don't know if I should tell him everything the previous doctors have said or let him come to his own conclusion..

Any help is greatly appreciated.

Thank you!!

15

Several thoughts for Tammy...

(1) If your jaw is locking up, then most likely you are dealing with some form of TMJ Disorder or Eagle Syndrome in addition to the trigeminal neuralgia and the trigeminal neuropathy introduced by the Gamma Knife procedure.

(2) As I mentioned several months ago, Gamma Knife is not generally recognized as a treatment of choice for either Post Herpetic Neuralgia or Zoster Sine Herpete. The latter also appears to be relatively less common than Shingles with rash, though there are many mentions of Shingles pain that initially presents without rash, and is confirmed only by blood testing for characteristic markers of the virus.

(3) In terms of fitting your symptoms, your new distribution of pain could be EITHER a side effect of the Gamma Knife and the neuropathy it has introduced on the nerve, or a manifestation of Anesthesia Dolorosa. The latter is more of a description of pain than a medical entity on its own. The primary combination that qualifies is deep pain underlying surface tactile numbness. Not all of your symptoms track to that combination, but that isn't unusual. See http://en.wikipedia.org/wiki/Anesthesia_dolorosa .

(4) Accepted practice for confirmation of both Shingles and PHN is blood testing for the virus DNA -- not presence of the rash. As a minimum, you should be tested to determine whether either Herpes Zoster or the variant of Herpes called Zoster Sine Herpete. From what I read, it would appear that the two can be discriminated by DNA markers. See http://www.neurology.org/content/76/5/416.short

(5) I can understand the reluctance of neurosurgeons to attempt examination and diagnosis of the combination of symptoms you have, following Gamma Knife. They don't want to become embroiled in a lawsuit for slander. I've heard from at least two neurosurgeons who consider the Gamma Knife procedure to be "barbaric", in the sense that it is imprecise, often very damaging to regions adjacent to the target zone, and very often of only short term aid even when it works. But the hospitals which have invested millions in Gamma Knife centers will fight vociferously to recover their investments.

(6) In the circumstances you describe, my advice would be to seek a workup "from scratch" including evaluation of your medical history and treatment options from a major regional medical center. Mayo would be an option. Others on the East Coast or nearby might include Emory University at Atlanta, Shands Institute at Jacksonville, Johns Hopkins in Maryland, Columbia University in New York, and Massachusetts General Hospital near Boston. Be advised that recognized treatment options for Anesthesia Dolorousa are very limited and tend to focus on experimental techniques such as Deep Brain Stimulation and peripheral nerve stimulators, which have spotty results. Experimental procedures are often not covered by medical insurance.

Two practitioners whom I have met in the past who are very knowledgeable in this area are Ken Casey and John Tew. Dr Tew works with the Mayfield Clinic outside Cincinnati, and Dr Case is in Michigan (I believe outside Detroit). Both can be contacted via the Providers page at the TN Association of the US, linked from the top of our "Find a Doctor" page on menus above.

I'm sorry there isn't more I can offer. But perhaps this note will provide additional starting points.

Go in Peace and Power

Red