As you can tell, I am new here. I suffered with ATN for six years in the third trigeminal branch. I only had typical TN for about 2 months, believe it or not- before it turned into that constant, aching, throbbing, unrelenting pain. It was intermittent however, but when the attacks would come they would hit for sometimes weeks or months at a time.
Finally, I had enough and went to see a neurosurgeon in September of 2010. Because the neurosurgeon was running behind, an intern listening to all of my symptoms. At the end of the appointment, the neurosurgeon finally came in, did NOT listen to my symptoms again and told me about MVD. I had to ask him what my alternatives were and what the risks were. He told me "well all the other procedures will make you numb for life, this wont" AND.... HA!
On the prep table September 28th of this year, the neurosurgeon believed he was dealing with Typical. He THEN asked me my symptoms. When I told him, he said "hey thats ATN, I dont know if I can cure you now". He didn't cure me, but rather disabled me.
I ended up having a stroke on the operating table close to my brain stem that he claims he didn't realize. I'm 35. He never came to see me after surgery, and I was never admitted to ICU. I kept complaining about not being able to use my right side and how my chin felt like glass had shattered in it, only to be told that was normal and would return. They discharged me, and after three days of still not being able to walk, talk or write, I went back to the same hospital- this time the ER. The ER called in a neurology team and there is was discovered that I did have a stroke on the table. I was left with a VERY rare condition called dysmetria and an even rarer symptom that is being studied by speech pathologists: foreign accent syndrome. I went from speaking American ( born and raised in Pennsylvania) to speaking British.
The complete surgery was a flop. Absolutely nothing went right for me, and just yesterday four months after the surgery my incision opened up at the bottom and was leaking. I had to go to my regular doctor who took care of it but insists I find another neurosurgeon pronto. My neuro that did the surgery dismissed me the day his intern took out my staples saying dont come back unless you have another brain problem. I would consider having a stroke a brain problem. The surgery also left me with two internal carotid aneuryms or infundibulums ( dialation) that were not there on a previous MRA scan I had done.
After surgery, my face was numb as he told me could happen. Actually all he told me that could happen was hearing loss, or a numb face - so I accepted that. It did wake up, almost all the way except for the area around my mouth, some of my chin and a small spot along my mandible. I did NOT come out of surgery with mouth pain. ( chin pain yes). I went to my regular doctor for the chin pain and she gave me neurontin 300 mg a day in October. Come November ( mid november), my mouth started to hurt me where it is numb at ( some of my teeth, gums and lip is numb on the right side, although my lip has started to wake up. Also my tongue tip is numb). She increased the neurontin and my symptoms skyrocketed to constant 24/7 pain and burning in my mouth. Considering that my chin stopped hurting and almost has completely woken up, I am hoping and praying that weaning down on the neurontin and getting off of it will take me back to NO pain in my mouth.
I went to my dentist two weeks ago who said that the neurosurgeon gave the third trigeminal branch one heck of a "ding" and that it disturbed my mandibular and lingual nerves. He then did a panorex on me and stared at it for like five minutes. He believes that my jaw was fractured on my right side close to my mouth. I have an oral surgeon appointment coming up on the 27th. Once he seen that, he said he thinks the anesthisiologist is to blame for this one and potentially even my stroke as she appeared incompetent and too forceful to him.
I also woke up from surgery with staples in my forehead from them having to pin my head from moving. Did anyone else have this?
I may never know what happened to me, but I'm not falling for the "it will be ok, your mouth will wake up" speech from my neurosurgeon who seen me for five minutes once I was diagnosed with a stroke. Not only do I have the mouth problem, but still have the same pain in my jaw as I had pre surgery.
I wish I never, ever had this done! I did not know or hear of anethesia dolorosa before, and he never told me this could happen. In fact, he told me if I didnt let him do the surgery, eventually the pain was going to come and not leave at all. Kinda like NOW?!
Any suggestion or possibilities?How long did it take for your MVD to work? Could this just be inflammation? Wondering about trying steroids.
Hi there, Audarah, I cannot imagine what you have just described! You are so strong and persistent! Good for you to follow up w/the dentist who obviously had more integrity than the doc you gave you a botched surgery. After you get your story written and can remember all that occurred (maybe get medical records to remind you of some things) you should contact the Medical Board in your state and report him. I do not advocate law suits but you may have a strong one here. When an injustice like this is done or when pain management is ignored by doctors, state boards do not take it lightly. He should be investigated, in my opinion, because not only was his bedside manner rude and unfeeling, but his skills are questionable. How many others has he hurt like this? How many are lining up for his services?
There is a LOT of information here on this site, when you feel up to it, take a look. Also, there is another site "endthepain.org" that is now a facial pain site that is quite helpful. They have normal office hours and will answer questions over the phone and/or guide you to some adequate help with your pain. Audarah, I hope you have a close support system nearby. Someone to hug you through all of this and perhaps be an advocate for you as you move forward. We are here for you and I am so sorry this happened to you.
Blessings to you as you heal through this,
LyndaS
This September unfortunately. I am in so much pain right now, writing is hard, but wanted to thank you all for your replies before I go lay back down.
I can't even believe you were treated this way.
I know the focus is your health, and that you are probably nowhere near strong enough to deal with anything else,
but when the time comes, that doctor needs to be put in his place.
I am so, sorry you are going through this.
Continue to advocate for yourself. You are doing a great job.
-Tammie
I have little respect for physicians that create monstrous mistakes and then disapear and hire a lawyer. they are greedy monsters not docters. I am so sorry that this has happened but why can he walk away. Cant he be sued? I couldnt due to prior surgeries but this is not the same. Can you get to a university center pain clinic and obtain the proper care. This wasnt a doctor and probably not even human. Right now I am more concerned about you and that you recieve proper care. People recover from strokes. I want you to be one of those people. You are a very brave young woman.
I also went to the Cleveland Clinic and was so disisapointed. I would not refer anyone there for help. Mayo is run differently. They want medical tests where they can see proof of a disease. when they dont, you do not recieve appropriate care. It was a sham.
misstammie said:
I can't even believe you were treated this way.
I know the focus is your health, and that you are probably nowhere near strong enough to deal with anything else,
but when the time comes, that doctor needs to be put in his place.
I am so, sorry you are going through this.
Continue to advocate for yourself. You are doing a great job.
-Tammie
what hospital were you in? have you contacted any laywers? They have to answer for this including the surgeon. otherwise they will hurt others. First is to get the most accurate diagnosis and care. Then you can follow-up on any legal action. You have healing to do and it needs to proceed correctly.
Elaine48 -- I am going to send you a PM regarding your post...
Pam
elaine48 said:
I also went to the Cleveland Clinic and was so disisapointed. I would not refer anyone there for help. Mayo is run differently. They want medical tests where they can see proof of a disease. when they dont, you do not recieve appropriate care. It was a sham.
misstammie said:I can't even believe you were treated this way.
I know the focus is your health, and that you are probably nowhere near strong enough to deal with anything else,
but when the time comes, that doctor needs to be put in his place.
I am so, sorry you are going through this.
Continue to advocate for yourself. You are doing a great job.
-Tammie
Sue him and claim damages for negligence. You will save others also from this nightmare.
Yakub
Thank you all for your replies. As of November 11th, I have signed a contingency fee agreement with a lawyer. He is still in the middle of collecting all of my medical records and then has to send them to an expert. He says we can't sue for a bad outcome, but we are going to obviously do all we can to nail him for negligence. I think the negligence is pretty blatant! My relationship with my neurosurgeon ended for two reasons 1.) he told me not to come back and 2.) I hired the attorney well and 3 lol my doctor told me to NEVER go back to him again; so therefore she was fixing up the incision because we had no where else to turn at that exact second. It wasn't leaking CSF fluid, but rather a nasty infection. My doc cultured it, we are still awaiting results but she took no chances and put me on antibiotics anyway.
Last night I poked around my insurance website. I found another neurosurgeon right near my home that excepts my insurance and also found a neurologist who is also a pain medication doc. My mouth fell when I seen that one- I surely wrote his name down and will be calling right at 9 am when they open.
Someone asked if this was done at a teaching hospital. No it wasn't.
You know what really makes me angry? He didn't even come out after he did my surgery to tell my family how I was doing. HE CALLED the waiting room phone and made it a point to tell my mom "I won't be seeing her while she is in the hospital, I'm going to California". WELL WHOOPITY DOO DAH!
When he finally came in to see me for those five minutes after discharging me and my going back and them diagnosing a stroke, he stood at the end of my bed- didn't even so much as listen to my heart or look at the incision, shrugged his shoulders and said "Meh, you will get better, so you had a stroke!" He then tried to give me a high five. I'm not kidding you.
I mean in the VERY least he could have apologized, showed concern, remorse. Heck, even given me a number to rehabilitation or pain management. He did nothing but do my surgery and collect his money. Therefore, the anger got the best of me and I hired my lawyer. I don't want him to do this to anyone else and bygod, he CANNOT go around and continue to keep telling people "you are only going to be numb or having hearing loss". THAT IS NOT TRUE and he is lying right to people's faces. I trusted him, I really trusted this neurosurgeon and he betrayed that trust.
I'm a very forgiving person but I can't seem to forgive him. Not right now. I know I have to let go of the anger but it's hard to do that when I am in constant pain. Today is the first day that I have woken up without much pain in over a month. I hope this is a good sign. Off to therapy all. Sorry for rambling. (coffee rush- hope the heat doesnt start the pain)
If the insurance company has footed ur bills! They can also help in taking up this case of wrongful charges for improper negligent service.
As for ur pain I m sure u will soon get spontaneous remission lasting for months or even years as this disease is well known for this, but don’t give any credit to the surgeon for this.
You should claim damages also, and whatever you have written on this website remember all those points when briefing ur lawyer. I do not whether legal aid is available in ur country, as it is in England where I live.
Don’t let all this worry you as this might aggravate the disease. Just take it easy and let the lawyer worry about it. You will just have to give him the details.
If NO MRI was taken prior to surgery by the surgeon this point must b mentioned.
Good luck. Yakub
Audarah said:
Thank you all for your replies. As of November 11th, I have signed a contingency fee agreement with a lawyer. He is still in the middle of collecting all of my medical records and then has to send them to an expert. He says we can’t sue for a bad outcome, but we are going to obviously do all we can to nail him for negligence. I think the negligence is pretty blatant! My relationship with my neurosurgeon ended for two reasons 1.) he told me not to come back and 2.) I hired the attorney well and 3 lol my doctor told me to NEVER go back to him again; so therefore she was fixing up the incision because we had no where else to turn at that exact second. It wasn’t leaking CSF fluid, but rather a nasty infection. My doc cultured it, we are still awaiting results but she took no chances and put me on antibiotics anyway.
Last night I poked around my insurance website. I found another neurosurgeon right near my home that excepts my insurance and also found a neurologist who is also a pain medication doc. My mouth fell when I seen that one- I surely wrote his name down and will be calling right at 9 am when they open.
Someone asked if this was done at a teaching hospital. No it wasn’t.
You know what really makes me angry? He didn’t even come out after he did my surgery to tell my family how I was doing. HE CALLED the waiting room phone and made it a point to tell my mom “I won’t be seeing her while she is in the hospital, I’m going to California”. WELL WHOOPITY DOO DAH!
When he finally came in to see me for those five minutes after discharging me and my going back and them diagnosing a stroke, he stood at the end of my bed- didn’t even so much as listen to my heart or look at the incision, shrugged his shoulders and said “Meh, you will get better, so you had a stroke!” He then tried to give me a high five. I’m not kidding you.
I mean in the VERY least he could have apologized, showed concern, remorse. Heck, even given me a number to rehabilitation or pain management. He did nothing but do my surgery and collect his money. Therefore, the anger got the best of me and I hired my lawyer. I don’t want him to do this to anyone else and bygod, he CANNOT go around and continue to keep telling people “you are only going to be numb or having hearing loss”. THAT IS NOT TRUE and he is lying right to people’s faces. I trusted him, I really trusted this neurosurgeon and he betrayed that trust.
I’m a very forgiving person but I can’t seem to forgive him. Not right now. I know I have to let go of the anger but it’s hard to do that when I am in constant pain. Today is the first day that I have woken up without much pain in over a month. I hope this is a good sign. Off to therapy all. Sorry for rambling. (coffee rush- hope the heat doesnt start the pain)
Wait, can anesthesia dolorosa go into spontaneous remission? YES YES YES!!!
No my head is numb just around the incision alone and my face is only numb in a small spot near my mandible. I am four months out from surgery, so hoping this goes away too on the mandible. Actually, Im REALLY praying the mouth pain just up and leaves. I can deal with numb. Cant deal with pain or the tightness when I smile.
i have a question. my nerves were stretched from the lift, and when the scar tissue fills with fluid by my ears, eyes, cheeks, it will cause numbness. i just read an article on the spinal accessory nerves being affected by facelifts. numbess will go away when the fluid is out of the scar tissue. the only way out of this would be to lessen the pressure. am i correct. theres scar tissue on each branch.
Hmm, I have no idea but its worth looking into. Cleo, can parasthesia give me pain? What makes it different from anesthesia dolorosa? Gonna do some research there. With anesthesia dolorosa, the nerve is severed right? In all cases??
Ouch. I am so sorry. My neuro has diagnosed me with parathesia, but also 7th nerve cranial palsy. I just got the records from him today and he didn't tell me I had seventh nerve palsy, but that may explain why I can only smile out one side of my face( good side). Will /can parathesia go away versus anethesia dolorosa?
Audarah—I cannot speak to parathesia, but I had Bell's Palsy years ago, 12 years prior to the onset of TN…I was in my early 20's, under too much stress and woke up one day and my right side (same as TN) of my face would not smile and was droopy. I had physical therapy with an electrical stimulator thing that would zap the muscle so it would contract so as not to loose its ability upon healing. Also, some kind of med for pain and within 6 months my smile came back 97%. So glad because I've always like to smile! I remember it hurt and that the 7th cranial nerve was involved. Some said it was a small stroke, I'm not sure. It can and did go away though. I hope it goes away for you, too!
Thank you for answering. Since I have a lot of scar tissue, I was wondering how yours was removed. Theres aways more fluid in the scar tissue than other areas, an I assumed because its more fibrous. Can a dental panorama show you nerve damage or descrepencies in the tissue. ie-lingual nerve.
Cleo said:
Hi Elaine, I know nothing about facelift damage or any fluid. I never had intermediate numbness, mine has always been constant. I had scar tissue removed but the numb still remains. it helped relieve some of the tight pressure on my jaw.
Audarah, anything with esthesia on the end of it... is painful... pare, dyse, and the hyper... I was diagnosed with AD by a neuro at one time, but, that was before i had my nerve looked at. little bit of bone and needle tip crushed my lingual nerve. Its not severed, just a speck of damage so they said...
neurontin increased your pain?? I really think its early and you will improve. Theres always inflamnation for quite a while.What is dysmetria??? wishing you well.
Cleo said:
no it did not show on xray or mri. my lower jaw bone had to be cut and lifted up to expose the nerve. the scarring was on the split in the nerve. are you talking about facial scarring from your facelift? how long ago?
This is internal scars.,there are lumps under the gumline, by the ears, umder the jaw and by the mouth. I realized that the back of the neck has cranial nerves extending into the shoulder and some are by the esophagus. facelift was 2002. I am not having an easy time finding a surgeon as you can imagine.