I was searching the net on Trigeminal Neuralgia when I hit upon this site. I joined it immediately since I wanted to know more about this disease, its cure etc. My dad has been diagnosed with TN. He has been affected since past 8 months. It happened suddenly one day when in the morning, he got up and complained about the left side of his face being numb (including the left part of his tongue, cheek, ear, chin, teeth) and an intermittent shooting pain near the left ear. We then consulted an ENT specialist who confirmed that there is nothing wrong with the ear. We then also consulted a dentist who examined the teeth and assured that there is no problem. He then suggested that we consult a neuro-physician, who advised us to go for an MRI scan. The scan results were totally normal. He then suggested that there is nothing wrong and that we need to keep diabetes in control (my dad is a diabetic since past 10 years).Later on, we went for ayurvedic treatment and after a few sessions, the shooting pain had gone. But the numbness still remains.
He says that there is no problem in hearing, or taste. But the numb, sensationless feeling is very disturbing. We then happened to consult another neuro physician who advised us to go for another MRI scan. In the second scan report, it was noticed that thickening of the trigeminal nerve was taking place. I do not remember the exact words from the scan report (I will post that tomorrow). After a couple of other tests, when we consulted the neuro physician yesterday, he happened to mention that there is no treatment for this disease as such. He then asked us to consult a neuro-surgeon. My question is, is a surgery required in this case? Can it be cured with the help of medicines?
P.S.: There is no pain as of now. The numb feeling is present.
To my knowledge from 16 years of reading in medical literature, there is no direct connection at all between Diabetes and trigeminal nerve pain. There is something decidedly odd about the remark that you report from the ENT specialist.
Likewise, FYI: be aware please that some techniques of Ayurvedic medicine have been found to involve toxic substances and can be associated with heavy metal poisoning. Look it up on Wikipedia, please, or under "Treatments to Avoid" in our Face Pain Info tab (menu above).
It will be important to know: did your Dad receive a diagnosis of "trigeminal neuroma"???? A neuroma is a growth or tumor of nerve tissue. Though the symptoms can overlap, this is something quite different from Trigeminal Neuralgia, which involves either an inflammatory condition or a form of myelin layer compromise due to vascular compressions. The particular symptom you have described might be called "parasthesia" (loosely translated into layman terms, "tingling with numbness"). Parasthesia is fairly often a precursor symptom for the development of trigeminal neuropathic pain syndromes of all kinds.
I'll look forward to reading the scan report wording.
Regards and Best
R.A. 'Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Disclaimer: I am a long time patient advocate for face pain patients. But I am not a licensed medical doctor. You need the reliable advice of a specialist in face pain or a neurosurgeon --NOT a general practitioner.
"Thickening of left trigeminal nerve in the Meckle's cave, formen ovale and its extension into the masticator space with inhomogenous enhancement associated with widening of foramen ovale.
Findings are mostly suggestive of nerve sheath tumour."
Based on Cleo's post in this discussion, I was reminded of a root-canal treatment of his left side tooth approximately 5 yrs back. I don't know whether it has any significance, but still thought it would be worth mentioning.
Please let me know if you need any further details. Looking forward to your valuable advice.
Richard A. "Red" Lawhern said:
To my knowledge from 16 years of reading in medical literature, there is no direct connection at all between Diabetes and trigeminal nerve pain. There is something decidedly odd about the remark that you report from the ENT specialist.
Likewise, FYI: be aware please that some techniques of Ayurvedic medicine have been found to involve toxic substances and can be associated with heavy metal poisoning. Look it up on Wikipedia, please, or under "Treatments to Avoid" in our Face Pain Info tab (menu above).
It will be important to know: did your Dad receive a diagnosis of "trigeminal neuroma"???? A neuroma is a growth or tumor of nerve tissue. Though the symptoms can overlap, this is something quite different from Trigeminal Neuralgia, which involves either an inflammatory condition or a form of myelin layer compromise due to vascular compressions. The particular symptom you have described might be called "parasthesia" (loosely translated into layman terms, "tingling with numbness"). Parasthesia is fairly often a precursor symptom for the development of trigeminal neuropathic pain syndromes of all kinds.
I'll look forward to reading the scan report wording.
Regards and Best
R.A. 'Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Disclaimer: I am a long time patient advocate for face pain patients. But I am not a licensed medical doctor. You need the reliable advice of a specialist in face pain or a neurosurgeon --NOT a general practitioner.
Thanks Cleo for your reply! Yes, I understand how the numbness can be irritating. As of now, it is just the numbness. I am worried that in future it should not lead to any pain or rather his condition should not get worsened. So, is the numbness still there for you?
Cleo said:
Hi Simi, I was diagnosed with anesthesia dolorsa from a dental injection. I had a neuroma formation from it and had it removed. However the neuroma formation was not seen on any scan. It was only seen during surgical exploratory nerve search. I have one sided tongue and lower jaw problems only. In laymen terms my doc. called the nueroma "removal of scar tissue". I was lucky my nerve was found mostly intact. I remain numb without the pain. but, i did not wake up out of nerve surgery pain free. It took several years for the nerve to regenerate itself and calm down. I do not think there is a cure or a med to help just numb... I wish!
The MRI report seems to indicate a rather subtle form of nerve sheath tumor. The pertinent question for your Dad will be whether or not that tumor is operable without severing the nerve outright (which you definitely want to avoid!). My personal intuition would be that a tumor might not be readily removable by surgical intervention, if it is distributed along a substantial length of the nerve. A lot could depend upon what a neurosurgeon finds during exploration. You definitely need to consult with a neurosurgeon soon.
In an extensive and physically based scarring process such as this tumor may have created, the medication options could prove limited and some surgical options are really not advisable at all. I believe most neurosurgeons would advise against any of the Rhizotomy procedures or Gamma Knife. There is already nerve sheath damage, and such procedures would only add to it. Among the medication options, I'd expect a neurologist to recommend trials with anti-seizure agents, tricyclic antidepressants, and opioid drugs like Methadone, probably in about that chronological order. I don't personally see a strong connection to diabetic issues, though you must understand that I'm not a medical doctor so my opinion on the matter is not authoritative.
Schedule a consult with a neurosurgeon ASAP, please.
Yes, I have scheduled an appointment with the neuro-surgeon for next week. However, I had read somewhere that a patient (who was suffering from severe TN pain) went in for a surgery which reduced his pain but his one side of the face had become numb after the surgery. I would like to know whether a surgery would complicate matters more.
I would also like to know what if we do not go for any surgery or medications (Please don't mind, I am just considering all the possible options in this case). I mean will the disease worsen in years to come? Does it get more complicated with time? I would definitely let you know the neuro-surgeon's opinion. But meanwhile, my family is tensed.
Richard A. "Red" Lawhern said:
The MRI report seems to indicate a rather subtle form of nerve sheath tumor. The pertinent question for your Dad will be whether or not that tumor is operable without severing the nerve outright (which you definitely want to avoid!). My personal intuition would be that a tumor might not be readily removable by surgical intervention, if it is distributed along a substantial length of the nerve. A lot could depend upon what a neurosurgeon finds during exploration. You definitely need to consult with a neurosurgeon soon.
In an extensive and physically based scarring process such as this tumor may have created, the medication options could prove limited and some surgical options are really not advisable at all. I believe most neurosurgeons would advise against any of the Rhizotomy procedures or Gamma Knife. There is already nerve sheath damage, and such procedures would only add to it. Among the medication options, I'd expect a neurologist to recommend trials with anti-seizure agents, tricyclic antidepressants, and opioid drugs like Methadone, probably in about that chronological order. I don't personally see a strong connection to diabetic issues, though you must understand that I'm not a medical doctor so my opinion on the matter is not authoritative.
Schedule a consult with a neurosurgeon ASAP, please.
The progression of a trigeminal neuroma may turn out to be quite different from the course of Trigeminal Neuralgia, Simi. So I am reluctant to speculate on how your father's tumor will progress or evolve over time. I can say that with any form of surgery on or near a nerve, there is always some chance of protracted numbness, loss of motor control, or similar side effects. But I don't know what the odds might be for removal of a distributed neuroma. That's an estimate which a neurosurgeon should make for you.
I know you'd like to be reassured that there is some definitive and reliable answer for his facial numbness and parasthesia. But there just ISN'T. You and he may have to get used to taking these issues one day at a time. Many people in the forum here will recognize that character in their own journeys through pain. There is no way I can help you prepare for "what might happen," except perhaps to suggest with every intention of respect, that you and your father may get better results by remaining flexible and emotionally grounded, rather than getting wound up about issues you can't predict or control. That can be tough for us "Type A" personalities to get our arms around. But it is reality.
One other suggestion: suggest you browse our site article on "Coping with Crisis" in the Face Pain Info tab of our menus. In many dimensions, you and your dad are coping with just that -- a crisis precipitated by uncertainty and symptoms.
Firstly, I wish all the members a very Happy New Year! I wish this new year brings in happiness, good health and prosperity to all of us.
I took my dad to the neuro-surgeon who said that he does not believe it to be nerve sheath tumour (which was a big relief). He said, a tumour which is so small, cannot create so many issues. So he does not believe it is a tumour. He then prescribed some steroids for 15 days. But then, as I mentioned earlier, my dad does not have any pain. It is just the numbness which is irritating him so much. So, the steroids were not of any use. Then in the second visit, he adviced us to go for another MRI scan. He wants to see whether the lesion has increased / decreased and whether it is still of the same nature. Depending on that, if the result is as expected by the doctor, then he might advice us to go for a surgery. But then that would be the last option. But dad is not willing to co-operate now. He says, what if the scan reports still show that the lesion is present. Will they prescribe medicines? Anyways, I understand his concern too. So, I am planning for another 1 or 2 months and then go for a scan. Since that is the only way to find out the nature of the lesion.
Even though the doctor did not mention it to me directly, I could figure out from his talks that there is no medicine for numbness. I also read that in some cases, after a surgery, the numbness still remains. So, I would want to make very sure and think a lot before opting for surgery. Dad expects some sort of miracle to happen after the surgery, which I don't expect.
Anyways, hoping for some good news :) Will keep you all posted!