Has anyone had a neurosurgeon who’s specialism is ‘TN’ actually tell you that your making up stuff. Had the glycerol injection nearly 2 months ago and still struggling with side affects from the op. Went for the check up yesterday and when I tried to explain what’s been happening since the op he told me that it’s nothing to do with the op and I need to get referred to someone else. I’ve had lumps appearing all over my body since the op n had a biopsy done to try to determine why this is happening and when I mentioned this to to neurosurgeon and suggested maybe an allergic reaction he said can I let him know if it is an allergic reaction as he’d like to publish findings. But yet he doesn’t believe that any of the side affects I’m going through has to do with the op. Then said its in my mind then realised what he said and then turned it around and said but obviously the pain is real. I have what is possibly TMJ and I have excruciating pain in my temple when I accidentally press that area or scratch my head or wash my hair (pains only on the left side-the left side is the side that has TN n side of the op). The pain is excruciating n makes me want to throw up n occasionally it’s throbbing without any touching. All this is since the operation but neurosurgeon has said it had nothing to do with the operation. So after a good cry and tell at the world in general, I’m going to see my GP on Monday to get more referrals done. I’m disappointed in the neurosurgeon. For someone’s who’s specialism is TN he actually doesn’t have a clue about TN and how it affects people. So how do you cope when your neurosurgeon doesn’t believe you but would like your findings/results for his own research?
Oh also told him that my eyesight is affected and he said nothing to do with the surgery. But yet eye sight is playing up since the surgery.
Oh Marcie, I’m so sorry to read of your experience…that NS sounds like a jerk!
It’s fairly obvious that if all your troubles started after the procedure then it more than likely is the cause of it. I’m not a doctor, and of course maybe what your experiencing is something completely unrelated but it does need to be investigated!
I would never see him again and get yourself to a new NS for a consult to get information regarding your experience.
It’s frustrating and time consuming but this needs to be addressed!
Many of us have had to deal with people in the medical profession like this.
There are no cases of TN alike, there are no clear diagnostic tests that diagnose TN, so many doctors will go by the little they know of TN to diagnose you or not.
We have to advocate for ourselves and most importantly find doctors/ neurologists who are willing to support and help us achieve relief from our pain EVEN if there is no official diagnosis.
We have to explore every avenue and persist in explaining how we feel etc to be heard and treated with respect and kindness.
So in answer to your question, in my opinion that NS is fired! Find someone new!
(( hugs )) Mimi
Marcie, I had the glycerol injection last year in July. I am scheduled to have another in 2 weeks. The one last year helped my pain by maybe 50 percent. I have had the same pain your are describing for several yrs. The Glycerol ijnjections are not pleasant, so I don't know whether to go thru with it.I take 600mg, neurontin ever 8 hrs, and Tramadol which makes me very depressed, but most days I feel able enough to go on with my day. I also add Hydrocodone when other meds dont work as well. My neurosurgeon is at UAB in B'ham Al. Where do you live ? I dont have the body symptoms you describe, but my head and face pain is on the left side , into my head, eye, ear stabs, nose pain. Blessings Sue
Thank you. The NS is definitely fired. He even tried to tell me that maybe I had the problem before I had TN even though he told me I didn’t have TN n the surgery wouldn’t work. He also said that he doesn’t deal with classifications of TN-only classic symptoms. Confused??? Yh so was I. Think maybe I knew more than him and he didn’t like it. Anyway surgery worked, I have side affects n he’s fired. Gonna hopefully get referred to a new NS tomoz.
Sue, I’m in England so just gotta wait n see. Yes I have it into my eyes, n ears, n this pain on my temple is really bad…Today’s been quite a bad day for all symptoms.
I’m still quite annoyed and angry but calming down now. Just gotta move on. My GP is brilliant so he’ll sort it all out. But will let u know what happens.
Marcie
Sue, forgot to add-as painful as the op was I would do it again in a heartbeat just simply because I’ve had 7 glorious weeks where I’ve been pain free…well except for the side affects. It’s been amazing n brilliant. It may not last long but I feel free to live my life again. But that’s only my opinion. I take 450mg of pregabalin (lyrica) and trams sol when the pain gets bad like today. Don’t know if my dr will suggest that I go back up to 600mg because of the pain so will see what happens.
I can’t take Tegretol as I’m allergic to it. But well see what happens. Good luck for the op if you do decide to have it.
Marcie
Will you decide to have another Glycerol Injection.?? My Dr. said they peel off a little more of the nerve each time they do it.
Also I stayed over night and went home the next day. I dread the sitting straight up for 4 hrs afterwards, and the nauseating feeling I had during , even thou I was sedated and the seeing figures that were blue, green, moving and talkin[ Dr & nurse] during the op.I havent tried the Lyrica [ afraid of it] My friend passed blood thru her kidneys, and swelled to where she didnt look like herself. Do you hurt down into your neck on your pain side.? Tegretal broke my legs out reall bad 15 yrs ago, so I cant take it. I dont know what I would do without neurontin...
I would have it again in a heartbeat. I had a general anaesthetic n didn’t feel a thing. Hurt like hell when I woke up though. I didn’t have to sit up at all. Couldn’t really get out of the hospital bed to begin with but eventually as the remains of the anaesthetic wore off I was able to get up (even though i moved very very slowly and was in really bad pain) n I could eat soft foods like bread n soups the next day. Stayed overnight as well.
It’s the pain that started after n has continued. You should ask for a general anaesthetic.
The lyrica has helped me to gain weight n helped the weight to stay even though I’ve exercised, eat healthy etc. However yes the pain goes down into my neck but creeps from my temple down behind my war n into my neck. I still have the tightening of my face as well with the change of temperature, particularly the cold. With the lyrica I also have highness, n dizziness, memory loss, etc etc.
After having horrible pains, I had got to the point where I would try anything n everything. N I figure that’s all I can do. I’m willing to be a guinea pig if that’s what will work. But my GP keeps telling me no to certain drugs. Lol. But I’m not willing to have the side affects cast aside as if they weren’t caused by the op.
Tegretol caused a red itch bumpy rash all over my body from head to toe. Was really annoying but what annoyed most was that it actually worked n stopped the pain except I then became allergic to it. This is a never ending battle we fight every day of our lives n also we fight the lack of understanding from people close to us-well I know I do.
This is why I’m glad I found this group. 
Marcie and sue… I haven’t read… Are either an MVD candidate…have you tried lidocaine cream or patches…or anything topical on face?
Hi Kc Dancer Kc,
I won’t know until I get a new NS what my options are. But my GP has ruled out the lidocaine patches n cream only because I was using the capsaicin and that helped. So I have no idea is the answer to your question.
My neurologist here where I live is looking into getting my insurance to cover Botox injections to see if it will help my migraines. Thanks you have helped me a lot with your story.
Marcie said:
I would have it again in a heartbeat. I had a general anaesthetic n didn't feel a thing. Hurt like hell when I woke up though. I didn't have to sit up at all. Couldn't really get out of the hospital bed to begin with but eventually as the remains of the anaesthetic wore off I was able to get up (even though i moved very very slowly and was in really bad pain) n I could eat soft foods like bread n soups the next day. Stayed overnight as well.
It's the pain that started after n has continued. You should ask for a general anaesthetic.
The lyrica has helped me to gain weight n helped the weight to stay even though I've exercised, eat healthy etc. However yes the pain goes down into my neck but creeps from my temple down behind my war n into my neck. I still have the tightening of my face as well with the change of temperature, particularly the cold. With the lyrica I also have highness, n dizziness, memory loss, etc etc.
After having horrible pains, I had got to the point where I would try anything n everything. N I figure that's all I can do. I'm willing to be a guinea pig if that's what will work. But my GP keeps telling me no to certain drugs. Lol. But I'm not willing to have the side affects cast aside as if they weren't caused by the op.
Tegretol caused a red itch bumpy rash all over my body from head to toe. Was really annoying but what annoyed most was that it actually worked n stopped the pain except I then became allergic to it. This is a never ending battle we fight every day of our lives n also we fight the lack of understanding from people close to us-well I know I do.
This is why I'm glad I found this group. :-)
KC Dancer; Neurosurgeon told me MVD would not help me and could make pain worse, because my pain is caused by all 3 nerves. I have tried several creams, right now I am using Bio-freeze cream.
Marcie said:
Hi Kc Dancer Kc,
I won't know until I get a new NS what my options are. But my GP has ruled out the lidocaine patches n cream only because I was using the capsaicin and that helped. So I have no idea is the answer to your question.
You know it is strange how these neuro's do the same procedure, but they all do it a different way. My NS said the reason I had to sit straight up with my head tied to the back of a board in recovery was so the medication he injected into the cavity would stay long enough to kill a section of the trigeminal nerve. He went into a spot near my lip up into my face to the TN gangeleon. Is this the way yours was done marcie ?
Marcie said:
I would have it again in a heartbeat. I had a general anaesthetic n didn't feel a thing. Hurt like hell when I woke up though. I didn't have to sit up at all. Couldn't really get out of the hospital bed to begin with but eventually as the remains of the anaesthetic wore off I was able to get up (even though i moved very very slowly and was in really bad pain) n I could eat soft foods like bread n soups the next day. Stayed overnight as well.
It's the pain that started after n has continued. You should ask for a general anaesthetic.
The lyrica has helped me to gain weight n helped the weight to stay even though I've exercised, eat healthy etc. However yes the pain goes down into my neck but creeps from my temple down behind my war n into my neck. I still have the tightening of my face as well with the change of temperature, particularly the cold. With the lyrica I also have highness, n dizziness, memory loss, etc etc.
After having horrible pains, I had got to the point where I would try anything n everything. N I figure that's all I can do. I'm willing to be a guinea pig if that's what will work. But my GP keeps telling me no to certain drugs. Lol. But I'm not willing to have the side affects cast aside as if they weren't caused by the op.
Tegretol caused a red itch bumpy rash all over my body from head to toe. Was really annoying but what annoyed most was that it actually worked n stopped the pain except I then became allergic to it. This is a never ending battle we fight every day of our lives n also we fight the lack of understanding from people close to us-well I know I do.
This is why I'm glad I found this group. :-)
Yup same procedure. Spot right next to my mouth and according to him straight up into the nerve (under my eye-apparently). But I was knocked out for it. He said that there’s no was I could’ve been awake for it as it would’ve caused distress. It is very interesting the different methods used.
Mine was from near my mouth up in to the spot right in front of my ear, right where the nerves branch out.
Marcie said:
Yup same procedure. Spot right next to my mouth and according to him straight up into the nerve (under my eye-apparently). But I was knocked out for it. He said that there's no was I could've been awake for it as it would've caused distress. It is very interesting the different methods used.
I thought that’s where it would’ve gone as well. But when I said that the NS said no. It would’ve been straight up and gone just under my eye. It’s all very interesting.