I have not seen a recent post here for tractotomy procedures - has anyone had this done for their TN? I have TNP from a dental injury and am sick of having procedures and complications (multiple MVDs) - I want to destroy the damn nerve, I can’t take it anymore. Any success? Anyone know much about this? I will be talking to my neurosurgeon soon, as they likely will explant my PNS implant or offer another revision for electrode migration. The PNS has worked beautifully when the leads stay in place.
I had my 2nd 3rd division of the right trigeminal- nerve cut proximal to gasserien ganglion. No pain since last 50 years but my right side has become permanently numb.
Wow, that’s a long time. Was it an open surgery? Also, my biggest question is about the numbness - has it been bothersome or difficult to get used to? Has it affected your quality of life?
yes it was major open surgery. Tegretol and MVD was not available than. The numbness was very annoying I use to keep biting my tongue & upper lip while eating on the numbed side. I used to cry for days but I knew that this is what I had asked for in lieu of getting rid off pain so I have to put up with it and in few months I got used to numbness.
I now have pain on left side since 1974 but thankfully the pain is controlled by tegretol.
I’m sorry to hear you have it on the other side now, but I’m glad Tegretol has worked for you. Do you have compressions? With where they cut, did you have numbness on the entire side of your face? Only “one quadrant” of your face? Was it your entire tough or just half? Also, do you have any drooping??
I’m sorry so many questions, I’m quite desperate to figure this out - I have 2 little kiddos and a career, and I need to be functioning. I already have partial numbness/tingling in tongue and left side of face (mine is on the left side) in addition to pain. I just want to make sure I’m not trading one horrible thing for another comparable horrible thing - i can’t imagine the end result being overall the same or worse than my current pain and dysfunction. Thanks, Yakub.
I just had this done the end of May and I am glad I did! One side effect of the surgery for me is I have lost some speed in my left hand, due to the location of where the procedure was done. Nothing really major, it just looks a bit strange if I were to wave at you with both hands. I have not lost grip or range of motion just speed.
My pain was type one pain along the V1 branch, which resulted in agonizing pain to my left eye. Except for one nerve ending that is still problematic, after 21 years of TN, and four surgeries over 6 years I am now pain free.
I just saw you live in West Linn. I am in Portland. I would highly recommend Dr Raslan at OHSU. He has been my neurosurgeon from day one. He was the surgeon did my surgery in May.
I am indeed lucky that tegretol is working for the left side TN pain. I also get remission of varying duration sometimes lasting upto 2 years I reduce tegretol during this time. As the surgeon has spared the 1st division on right side of my face I have not lost sensation on the upper eyelid & head but the lower upper cheek & jaw is completely numb I.e.a quarter of my face is numb forever. No drooping. No compressions. My face look absolutely normal one wouldn’t find out about numbness until I tell him. If your pain is unbearable & keeping you away from active life like going to work, meeting people taking care of kids etc. it might be worth going for surgery of my type. But I would advise you to try all the medicines b4 going for surgery. There are number of meds for this pain & some might work perhaps in combination of two. In UK (where I live) I was told by neurologist that my type of surgery they us to do during 1920ees. They only cut the nerves as a last choice when even repeated MVD has failed. I pray that some medicine is found in research to eliminate choice of surgery. If you opt for surgery make sure you go to an experienced surgeon. You can discuss with him and ask for assurance that the pain will go without causing any deformity in face. I wish you best of luck. Please feel free to write to me whenever you want.
I do have Dr. Raslan! I actually have an urgent appointment with him again tomorrow. He did one revision a few weeks after my PNS implant for 2 electrodes threatening exposure but now this. UGH. He had mentioned initially that this was 1st line (I had MVD last year and subsequent infections with 2 additional craniectomies - it was horrible.) 2nd line would be Motor Cortex stimulation, which I just don’t want to do after my horrors last year) and 3rd would be the tractotomy. He said it would be our last resort. Why? If it works, I want it. I’m sick of surgeries. I’m just trying to get a better understanding of what it’s like to have a permanently numb quadrant on one’s face. I read somewhere it significantly impacts quality of life - is that true? I think this horrible pain does… I’ve tried a dozen medications, and there is a combo that does help, but they definitely don’t work well enough - at all. When I get to dosage levels that really start to dim the deepest pain, I’m a mess and can barely function. I wish others could speak more to the experience of numbness - and will the tractotomy almost always work??
Also, saraiderin, since you had the needle tractotomy, what was the recovery like? Did you stay in the hospital overnight? Was it painful? How long was recovery?
_emphasized text_Dear Sloane
When you see the neurosurgeon tomorrow you can discuss the type of surgery that I have undergone i.e, in my case I had pain in the 2nd & 3rd div of the 5th cranial nerve. I did try Alchohol injection in the trigeminal ganglion b4 deciding for major surgery that dint help so I went for surgery. The surgeon had cut the 2nd & 3rd (maxillary & mandibular nerve) leaving the 1st branch alone saying that the 1st branch rarely involves in pain on its own after Cutting the other 2 branch. The surgeon had warned me that I will have to put up with lasting numbness in right cheek & jaw.
He was a skilled surgeon & made sure that my motor nerves running along with sensory nerves were not damaged or affected in any way so my mastication power were in tact. If your motor nerves are damaged than one is likely to lose chewing power & also end up with facial paralysis on one side.
Since you already have undergone surgery the surgeon who last performed will know better.
But you can ask him all the questions b4 going in again
does your MRI show vascular loop pressing on the trigeminal nerve?
Best of luck
I don’t have any experience with surgery, but wanted to warn anyone taking Tegretol or Trileptal, that they can sap the sodium from your system and make you very very sick. It’s called Hyponatremia and I was hospitalized for 4 days because of this. I can’t understand why my doctors didn’t recommend blood tests to monitor my sodium. All they said was “you have low sodium”. I wasn’t able to function at all - couldn’t walk, write my name and kept vomiting with no idea what was wrong. There is documentation on the internet that warns about Tegretol and Trileptal causing Hyponatremia, but I read about this too late for me.
Right side TN (2nd & 3rd div. of 5th cran. nerve) since late 2013. Initially root canal done, with good tooth loss. Homeopathic, acupuncture, massage, osteo treatments helped, but no long term pain relief. 3 young kids and work is disrupted due to severe pain at times which has progressively gotten worse and more frequent. I used Tegretol for 3 weeks last Dec. (my first meds) and ended up with severe hives throughout my whole body, cracked, swollen, bleeding lips, swollen feet. Ended up in emerg, and was off work for 1 1/2 months while on Pred. and cortisone to relieve swelling and hives. Now on Gabapentin 700mg four times a day. Pain is sometimes kept at bay. First MVD scheduled for Oct. Got a highly recommended neurosurgeon who will be operating on me. Hopefully I will be pain free and have no complications after the MVD. For those who had this procedure: how long have you had TN?, Had you taken meds before this procedure, if so what meds, and for how long? What complications after procedure, and are you still on meds? Sorry for all these questions.
After I had neurectomy in 1965 on the right side for TN I was very upset with side effect of permanent partial numbness on the face. I regretted at the time and cried for days not able to cope with the numbness. MVD was not heard of those days nor was tegretol. I had to chose between intense unbearable pain & numbness. Later in 1966 I came to know about MVD (dr Janetta surgery) & tegretol which was too late by than. I was not a member of any pain association & don’t whether any existed. But today after being member of various pain association & reading all the mails I realise that even MVD & Gamaknife brings temporary relief meanjng there is no permanent cure from this terrible pain.
On the other side, the pain has never returned on right side post surgery. So I feel I had taken right decision opting for surgery. My brain has got used to numbness & I don’t even realise that I have numbness. I have pain on the left side now which is absolutely controlled with tegretol & hope it will for the rest of my life.
So sorry this happened to you! I read about this adverse effect when researching after dr’s RX’d Tegretol and then when I said no tried to RX Trileptal instead even though I told them I cannot take either because I already sometimes have low sodium levels and most of the time they are barely within the normal range. I also have dysautonomia syndrome & POTS which causes orthostatic hypotension also affected by low sodium levels so much so that my cardiologist once had me taking salt tablets in order to increase fluid retention in my blood stream and prevent orthostatic intolerance and fainting (syncope). Currently my levels are staying just barely normal but that is with eating a high salt diet…I pour tons of salt on all my food and eat canned or jarred green or black olives for snacks & string cheese too… only eat whole natural unprocessed foods…no junk. Also, I had a total hysterectomy and thus take total hormone replacement. Both of these anti-seizure drugs cause non-absorbtion of hormones according to the pharmaceutical information and drug interactions info. If I were to not absorb my hormones I would have migraine with aura every day or at least several times per week because hormone fluctuation is a trigger for my migraines and especially now ever since hysterectomy. Do you think the dr’s bothered to look at my whole health history and other meds & consider all of this before prescribing those drugs for my TN? No of course not! They were going to do just like they did with your case and just let me get really sick and end up in the hospital or possibly injured from fainting. I as the patient had to be my own advocate and know all the possible interactions with my meds and my health problems when I returned to the doctor and explain all this after the 3rd neurologist pushed me to take them because he didn’t bother to read my history. I am soooo exhausted and overwhelmed with doing the job all my drs should be doing when I am the sick patient they are supposed to help. I am seeing 9 different specialists right now due to bilateral TN, left GPN, bilateral ON, autoimmune disease, Sjogren’s syndrome, with neurologic complications including neuropathy, myelopathy (spinal cord damage), dysautonomia syndrome, severe fatigue, arthritis, muscle pain, etc. etc. etc. I literally spend full time dealing with it all right now because I must babysit every dr I see, every appointment, every RX written must be researched, etc. etc. I finally have found one of the best doctors ever who is a Rheum who is helping me and he is the ONLY dr I have EVER seen that I don’t need to babysit and I have seen literally 100’s of drs over past 26 yrs. Maybe adjusting your salt intake or actually taking a salt tablet (sold OTC at drug stores) will help you be able to stay on Tegretol or Trileptal if they are helping you and dr’s say that this would be safe for you to try depending on your other health issues/history involved (i.e. if you have high blood pressure this would likely not be an option that is healthy for you).
The surgery was not all that bad. The injection of dye into the spinal column, which was done in the pre-op hurt for a bit, but that pain passed quickly. I was taken from the 7th floor to the 10th floor. Woke up 2 hours later. Having PTSD, I can become very combative waking up, so they wrapped me up really tight in blankets before they brought me back down to the 7th floor. Yes, they kept me over night in the neuro ICU in a room that was really noisy, but I came home the next day. The worse thing is my left side now moves a bit slower than my right due to where the surgery was done. Thing is it is nothing compared to the pain relief I now have.
As for numbness as the surgery in my case was to deal with TN eye pain, I do have some dryness in my left eye, but nothing over the counter eye drops does not take care of.
So they have cut your nerves near gasser ganglion? Can you give me as many details as possible about what the surgeon exactly did on you, how was this surgical technique called , how he operated on you etc… Do you think there are surgeons that would do this type of surgery today? Is it successful? Does the painlessness usually last forever? Thank you
Yakub, may I have the name and location of your surgeon? I am desperate for pain relief. Thanks much!
Saraiderin, may I have the name and location of your doctor? Did you have a tractotomy? I’m in much pain. Thanks!