I have had tn for 9 yrs and it has gradually progressed. First meds helped for several years. The past 1 1/2 years I had botox iinjections and it was not successful. Since July I've had 3 procedures, last 2 radiofrequency thermal lesions. Both unsuccessful. Next week I have a follow apt from the last procedure. Should I consider MVD? Eating, talking, bending or lifting, & touching my temple causes pain. Even laying down and rolling over hurts. I am currently taking 200 mg 2xs a day of lamitcal. Very little relief, helps with strong spasms. Tear, sobbing jerking episodes.
Hi Kelli, based on research I’ve done prior to my MVD the following link best describes what most Neurosurgeons consider prior to consenting to MVD for someone with TN.
Each case is unique, I would consult with a few reputable neurosurgeons who have experience with TN to get opinions before making a decision. (( hugs )) Mimi
Once developed, trigeminal neuralgia (TN) is likely to have an exacerbating and remitting course. Over time, the pain-free intervals appear to diminish, and the pain becomes progressively more medically intractable. Temporary spontaneous remission may occur at any time, but permanent remission never occurs.
Without treatment, typical TN (TN1) may transform over time to become atypical TN (TN2), with a change in the character of the pain to more constant and background pain and the development of sensory impairment. Therefore, some authorities recommend early intervention to give the opportunity of pain relief without sensory deficits.
Over time, the drugs used for the treatment of TN often lose effectiveness as patients experience breakthrough pain. In some studies, more than 50% of patients with TN eventually had some kind of surgical procedure. Experience would indicate that medical management eventually fails in most patients with TN, and those patients undergo surgery. For patients in whom medical therapy has failed, surgery is a viable and effective option.
According to Dalessio, 25-50% of patients eventually stop responding to drug therapy and require some form of alternative treatment. The clinician then may consider referral to a surgeon for 1 of the procedures discussed below. Among patients who develop TN when younger than 60 years, surgery is the definitive treatment.
Neurosurgery is generally more helpful in those patients with paroxysmal rather than constant pain and in patients whose pain follows the anatomic distribution of 1 or more trigeminal distributions rather than being spread diffusely. The various operations often fail after 1 or several years of initial relief. Such failure necessitates a repeat procedure, often with improved but still incomplete results. Thus, many patients eventually restart pain medication after surgery. Surgery appears to be less effective for TN secondary to multiple sclerosis (MS).
The timing for surgery is debatable, and no randomized study has addressed this question. However, it seems that the earlier a surgical technique is applied, the better the outcome is likely to be. At least 2 medication trials should be performed and carefully evaluated before more invasive techniques are instituted.
The following clinical guidelines have been published:
International RadioSurgery Association -Stereotactic radiosurgery for patients with intractable typical trigeminal neuralgia who have failed medical management
American Academy of Neurology and the European Federation of Neurological Societies -Practice parameter: The diagnostic evaluation and treatment of trigeminal neuralgia (an evidence-based review)
For more information, see Trigeminal Neuralgia and Management of Acute Trigeminal Neuralgia.
Surgical treatment is indicated for patients whose TN is intractable despite medical therapy, in those who are intolerant to the adverse effects of the medications, and in those in whom previous procedures failed.
MVD is usually indicated for patients younger than 70 years who are at lower risk for complications during general anesthesia, although healthy older patients can tolerate it well. Percutaneous approaches (eg, radiofrequency ablation, glycerol injection, balloon compression, radiosurgery) are more frequently offered to elderly patients, those in poor medical condition, those with MS, and those in whom previous MVD has failed.
In elderly patients with limited life expectancy, radiofrequency rhizotomy (ie, PRTG) is sometimes preferred because it is easy to perform, has few complications, and provides symptomatic relief for a period.
Have you ever tried lidocaine patches on your face! Maybe to help for the moment…
MVD do before gamma…if gamma first, reduces success rate of MVD
I did MVD WITHIN my first year of TN… dr ken Casey…flew to the longest running MVD guru and insurance paid …
I believe you’ve tried long enough and deserve some relief! ASAP… Took me in within 8 weeks to operate appt.
Year two, post op, no pain, no pills.
Thank you Mimi for your insight. I too have been researching medicines and procedures available for TN. I am sure you understand my frustration. I've had a procedure where the Pain Management Dr numb the right side of my face and I understood I will feel an improvement immediately. Once the numbness began to wear off after 3 hours, pain back intensely. The 2 radiofrequencys did not help either. What more can be done. It is hard to talk without my mouth to hurt, also eating is the same way. I am 44 years old and it hurts my children and husband can see by my facial expression when I am pain. They are afraid to give me hug or kiss for the fear my mouth will hurt more. Thank God I work from home so my employer cannot see the tears in my eyes.
Kelli, I completely understand.
all we can truly do is research, try what we’re comfortable with and hope for the best…no one really knows why certain procedures work for some and others do not.
in my own personal opinion, until a true cause is found for those of us who have no clear cause only then can a cure be found…luckily there is research being done and funds being raised and awareness being spread.
I know how this affects our husbands and children, it affects everyone close to us…it’s hard. it’s not just the physical pain, it’s also the emotional pain we all deal with…
does that help you and I right now? No, but it will help us soon…
In the meantime we have to try what we can with support of our Neurologists or doctors, for quality of life and minimal pain.
when my pain became refractory ( med resistant) and was increasing and changing at a rapid rate, I researched MVD…I knew there were no guarantees…in fact my Neurosurgeon told me the day before my surgery due to my left side ( I have bilateral) being predominantly type 2 AND because no compressions were ever seen on any mris over the course of 11 years he wasn’t enthusiastic…that’s alot to swallow the day before, BUT I knew I had no choice…I had to try. My existance was just that, existing, in 24/7 10/10 pain for over 8 months. I was 39 yrs old.
in my case 3 compressions were found, and when i woke up i had NO pain…after a few weeks of weaning off 2/3 meds I had a bad TN flare …I added back 2 doses of my med and within days I was pain free again for a blessed 4 months!!
although the pain returned in month 5 post op and I had to add back a 2nd med, at least now the pain was responding better to the meds…
now at month 9 post op I average 1-2 days a week of minimal to no pain, the other 5 days I have hours of intense pain BUT thanks to MVD I’m still better off than pre-MVD!
so although MVD didn’t “cure” my TN it helped and I’m so glad it did. I’m still not able to drive or work due to the meds and inconsistency of the pain BUT at least now I have moments and days where I CAN function.
choosing MVD is a personal choice, go to the MVD group and read every post, I devoured it, then I researched everything online. I’ve actually posted some great research papers over there, go take a look.
we’re all unique and respond differently to meds and/or procedures so read everything with an open mind. you’ll know what’s right for you!
huge ((( hugs))) Mimi xx
Kc Dancer Kc said:
Have you ever tried lidocaine patches on your face! Maybe to help for the moment....
MVD do before gamma......if gamma first, reduces success rate of MVD
I did MVD WITHIN my first year of TN..... dr ken Casey.....flew to the longest running MVD guru and insurance paid ......
I believe you've tried long enough and deserve some relief! ASAP..... Took me in within 8 weeks to operate appt.
Year two, post op, no pain, no pills.
No I have not tried lidocaine patch. I have a follow up apt wih the Pain Management Dr Tuesday and will ask him to refer me on. Enough is enough!