@ Nanooo48
Hi again.:) Diagnosis to surgery was about 6 months give or take. They had to reschedule me once because it is a busy, teaching hospital in Toronto,Ontario. My Dr is one of the top doctors in his field here and has a success rating of 95% with patients with TN.
My job is very strenuous...I drive a truck doing roadside bluebox collection, so I'm not back yet. My appointment with my surgeon is at the the end of June, so I guess I"ll know more then. When my return to work date will be, etc..
Mine must have been really bad, because I was on almost 2000 mgs a day. Then the pain started coming back and I knew something really had to be done.
Take Care
Tim
Nanooo48 said:
@Tim wow that is sooooo great to hear! How long was it from diagnosis until surgery of you don't mind me asking? I would also love to hear how you're coming along moving forward. I'm wondering how long it would take for me to get back to work. I'm so glad you are pain free. I am only on 600mg of tegretol right now. And again I'm already feeling it coming back. It sounds pathetic but I'm worried that my dr doesn't work Friday's and the weekend and what if it gets really bad again. I get so much anxiety when it starts coming back. But anyways I would like to know how long from diagnosis to surgery. I don't know what I'm in for and its not like I have a surgeon picked yet.
@ Nanooo48
If you find yourself in bad pain. Get to the hospital and they might be able to up your med to help you:)
Tim
Timotea52 said:
@ Nanooo48
Hi again.:) Diagnosis to surgery was about 6 months give or take. They had to reschedule me once because it is a busy, teaching hospital in Toronto,Ontario. My Dr is one of the top doctors in his field here and has a success rating of 95% with patients with TN.
My job is very strenuous...I drive a truck doing roadside bluebox collection, so I'm not back yet. My appointment with my surgeon is at the the end of June, so I guess I"ll know more then. When my return to work date will be, etc..
Mine must have been really bad, because I was on almost 2000 mgs a day. Then the pain started coming back and I knew something really had to be done.
Take Care
Tim
Nanooo48 said:
@Tim wow that is sooooo great to hear! How long was it from diagnosis until surgery of you don't mind me asking? I would also love to hear how you're coming along moving forward. I'm wondering how long it would take for me to get back to work. I'm so glad you are pain free. I am only on 600mg of tegretol right now. And again I'm already feeling it coming back. It sounds pathetic but I'm worried that my dr doesn't work Friday's and the weekend and what if it gets really bad again. I get so much anxiety when it starts coming back. But anyways I would like to know how long from diagnosis to surgery. I don't know what I'm in for and its not like I have a surgeon picked yet.
@Tim oh I literally only go to the er if I’m dying and I’ve been pretty accurate lol! I would tough it out I guess or call an emergency line maybe? So far so good. Very tolerable. Can I ask you a question I don’t remember if I’ve asked. Did you have any issues with your hearing at all? My hearing almost feels like someone messing with the settings on car speakers. It’s the only other symptom I guess I’d call it that I have. Besides facial twitching which was actually two months before the pains. Still all on right side.
Although I did have MVD 7 months after my official diagnosis, I had been having symptoms for close to 10 years before the diagnosis( on myRIGHT side). The surgery did get rid of the shocks, but not the burning boring ATN pain. My surgeon had also mentioned that having the nerve compressed for more than 7 years could affect the outcome, by we decided to move forward with the surgery anyway. As the burning boring pain returned about 4 months after surgery, my surgeon recommended I get a neurostimulor implanted to manage the pain. I have had the implant since 2013, and it works very well!
My LEFT side had only been affected by TN for 1year before I had MVD on that side, and it was a complete success at resolving both the shocks and the burning boring pain.
As far as medication, I did try Tegretol, but was allergic. Before surgery, I was taking 2400 mg of gabapentin a day.
The surgery was not as bad as I had imagined. did have surgical pain, but only took pain meds for aboiut a week. I was weak for quite a while, so resting as much as I could for the first three weeks afterward was really important. I had both my MVDs in the same year.
My was very fortunate to have a neurosurgeon who is an expert in TN. I had to travel out of state to see him, but it was worth it to me. I highly recommend that you find a TN expert to treat you. The right Doctor makes all the difference.
Nanooo48 said:
@Christine How are you since surgery. I know I went to your profile earlier and can’t remember all that you’ve been treated with and outcome sorry. What was it like the surgery. How was it coming out of surgery. Is it a big deal or like eh. Cuz I’m very scared and never had surgery before just endoscopy and apparently I was so nervous I fought the heck out of them and they had to over sedate me LOL.
@Christine wow truly I am so happy you’ve found relief! Are you completely off meds now? I’m not sure what a neuro stimulator is but I’ll be googling that bad boy shortly just to educate myself as I’ve seen it mentioned a few times. What I’m really learning here it seems better to get the MVD sooner than later to prevent further nerve damage. I’m guessing this is why my neurologist is already talking surgery since I’m a “prime candidate” as he says. I guess I’ll see what happens Thursday.
@Timotea52 oh wow I wonder what’s happening with my ear. Grr I guess I’ll bring it up to the dr. But I just don’t wanna be looked at like I’m a dork or something lol. But then again when I had optic neuritis I was also scared to say something but when I did it ended up being a big deal. I just don’t want to need steroids.
@ Nanooo48
Listen. Don't EVER feel stupid for asking a doctor questions , etc..First of all, don't forget they get paid for the visits so they don't care probably. The easier for them, the better. ;) lol
But see....Aren't you glad you saw the doctor about the Optic Neuritis?:):) Don't ever wait until it's too late and you end up regretting things. Hope your weekend is good so far:)
@Timotea52 @catwoman @Christine @mybell @Allydcat @farmeress I’m wondering if there is an easier way to reply to comments. I swear I look at the screen name and but the time I scroll down and hit reply I forgot it already. This tegretol really is effecting my short term memory in a big way and it’s very noticeable at work as well as my balance is off. Will this get worse??
I’m wondering if I should openly talk about this at work or not but I’ve been teased before because of my ailments I guess you can call it but it’s not like I’m a hypochondriact its all these legit things hating on me making life a bit harder to live sometimes. Pains started coming back yesterday but I figured I could hold off bothering neuro til my appointment Thursday but it today it was worse and more frequent along with a regular headache. GRR!
I called and he increased my dose from 600 to 800 a day. It seems it helps for less than a week and I’m increasing and what happens when I reach top dose they are just going to add another drug I have to remember to take?? I still can’t even believe this is happening right now. I once again can’t sleep on that side of my face and that’s how I knew something was up again. This sucks and my heart so truly goes out to anyone and everyone who deals with this pain daily. I never knew about TN until it happened to me. And I’ve learned so much already from you all. 
️:heart:️:heart:️
Responding to a long discussion thread can be frustrating! You can always send a member a friend request, and just “speak” to them directly.
I had a similar situation with my medications n dosage as you did. I was on Gabapentin, and went from 800 mg a day to 2400 mg a day within 5 months. That was the maximum dosage I could take ( some people can take more) so at that point my doctor and I decided it was time to look at surgical options. You should always be in touch with your doctor if your pain is not responding to meds. Treating TN is often tricky, so a change in medication or dosage is quite common.
It is hard to decide whether or not you can share your situation with your coworkers. I am self employed, so I never had to worry about that. I didn’t tell everyone about my TN, but when I did I would say I had some nerve damage which caused severe pain.
Christine
@Christine saying nerve damage is probably better than saying Trigeminal neuralgia. Is it truly nerve damage? Is my nerve getting damaged by my blood vessel? Just curious because I don’t want permanent damage to it either. And I’ve been on gabapentin before and the fatigue was soooo much I couldn’t do it! If my dr tells me to take it again I think I’ll have to refuse this time. Not to be difficult but the fatigue was really just too much and I need to be alert at my job. The short term memory loss is bad enough. Lol
Hey @Nanooo48
It is easier to say, but like you say, it isn't really nerve damage. It is just nerves that moved basically, causing problems to blood vessels , etc..around it.
According to my neurosurgeon, the trigeminal nerve is being "pounded on " by the vein or artery that is lying on it. In my case, having had this occur for close to ten years on my right side, caused irreversible damage to the nerve. My surgeon stated that there is a greater chance of successful MVD when the nerve has been affected for less than seven years.
Yes! Your nerve is being damaged. The longer the artery is rubbing against it... rubbing away the myelin sheath covering....the more damaged it's getting. There is no way to repair that damage. I have permanent damage.... my surgeon couldn't find a compression, so he snipped my nerve (basically damaged it on purpose in order to interrupt the pain signal....which it definitely did not!!)
If your doctor can see the problem on the MRI....you are blessed! That is why he is offering the surgery....for most of us it is hit or miss. Very rarely can looping be seen .... you can have this over with with a virtual guarantee that it will work. Go for it! Don't take a chance of waiting too long and getting permanent damage.
Well I’m not sure I like the mobile update one bit. Plus I forgot my password only to come back to a different world here lol. Anyway. So I had to call neuro because the pains started coming back again on 800mg tegretol. Only the span between 600-800 seemed to have lasted more than the last increase. I am now on 900 for two days if it doesn’t stop then 1000 on third day. My neuro was on vacation but another looked over my case before calling me back and she mentioned another medicine that will make me very fatigued or surgery sooner. I am trying to save money before being out of work. I’m totally freaked about having the surgery and I can’t afford some classy popular surgeon. When asking a surgeon at appt questions what type of questions should I ask?? Besides how many successful procedures he’s done. Am A chicken that I do not let the pain get to the worst it’s been before I call the dr? I get terrible anxiety when it starts coming back and today my anxiety just had me bust out crying just drying my hair for crying out loud. I want this to be past me already. But soooo many what ifs and this surgery is really going to set me back financially. Yea… I hope I’m in the venting forum… Sorry. 