Confirmed: Anesthesia Dolorosa, getting an implant

General General TN & GPN (Old Site)
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I am so exhausted and have been crying for hours now. It took my doctor LEAVING the clinical for a fellow doctor to diagnose me with one visit: permanent anesthesia dolorosa; except get this- he said it was caused by my stroke! ANYTHING, I mean will they really do ANYTHING to avoid just admitting that they messed up? My stroke wasn't even on my t nerve- it was on the cerebellular peduncle. he said "well strokes can cause post stroke syndrome and those syndromes can just decide where to establish pain and yours put yours in your mouth!"

To say the least I freaked and started crying. He said there was another neurosurgeon at the clinic who did implants and that he was there today. He asked if I wanted to see him. I said yes. I seen Dr. M and Dr. M said I had many options: all were ablative (damaging and could further mess up my T nerve) but that the motor cortex implant in my SPINE wasn't. I was hoping for the pens for the face, but he said no he doesn't do that and that I could have the one for my spine. I said I needed a week to think. He gave me a phamplet and in that it gives you a website to connect and hook up with other patients who have the same type of device. My to be hubby set me up with it while I went shopping, but we have to wait to talk to someone. Anyways, this other neuro said "ah, no your pain was caused by injury to your T nerve- having a stroke just didnt help the cause any!" What FUMED me and made me really mad was that my X neurosurgeon's nurse was in there ( the one that told me the anesthiologist was in there and said NO you do NOT have AD and just generally made me feel like an idiot). She stood there with her arms crossed and when the new neuro said I had AD for sure, she went "HMPF" like an "oh how interesting type of hmpf!" When I started crying, the big B HUGGED ME! I have never wanted to punch someone so bad in my entire life and her face was just EW it was just RIGHT THERE.

I am a mess. Im just a mess. NO wonder massive amounts of drugs never helped me. Guys, I knew I had AD. I was fine for three months then it hit and just never left. I KNEW IT.

Can I just say something here because I am going to. Dont dare, if you get messed up by an MVD, wait "two years" to see if your pain gets better. Im a friggen paralegal. Do you know WHY they tell you to wait two years? Because then your statute of limitations runs out and you cant sue, thats why. Newsflash to them- I lied. I said my original surgery was in September of 2010. They must not check records really well. It wasn't. It was last year and OH YES YES AND MORE YES I am going after them. Yes, you sign informed consents that say you can have a stroke, but you do NOT sign informed consents that say 1.) You, doctor, you can CAUSE the stroke ( mine was in the operative field, it was CAUSED, it did not happen 2.) That you can fly to california and leave me in the care of residents 3.) that you can miss the diagnosis of a stroke because you never seen me after the MVD and left me in the care of those residents 4.) That you can lie to me over and over again 5.) that you can cause me AD 5.) That you can cause me an injuries so severe that I am going on my second surgery just from being messed up in the first place.

Im sorry- if you get messed up or you did, you fight like HELL to get a diagnose BEFORE that two year mark hits. Guys, the docs do that for a reason, dont let them. I already have an attorney on the line. He said allllll he needed was for them to diagnose me with a caused condition that I did not have pre surgery. He said if it comes up with AD, then he takes the case under several reasons: lack of informed consent (the doc invalidated it) and gross negligence and malpractice.

Im ANGRY. ALL HE HAD TO DO was say Im so sorry- something went wrong; perhaps this and x.y. and z could maybe help you. But no, he got IN MY FACE and said your diagnosis is called PAIN JODIE, ITS CALLED PAIN. Yeah, well its called lawsuit. Just gotta get the implant before I file ( filing a lawsuit severes the relationship with the clinic and then I can never, ever go back, you cant go back to someone you sue, even if you dont win). SOOO give me the implant, cause I already have a doc waiting who will take care of it at another hospital. I am soooo PEED OFF. Red can I swear?

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Wow! Just wow! I’m so sorry your having to go through this. How truly frustrating for you. I hope your next step with the implant brings some control on your pain.

As for the nurse I would have asked her to leave with the little hmpf noise, mostly likely before that. Really I do not have patiences with rude nurses any more. No offense to those nurses whom enjoy their work, take great care of the patients, and who are helpful

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I am curious to what types of tests you had to confirm your AD. I had the balloon compression done 2 times and I truly believe I now have AD. It has only been a month but I have had NO improvement, I know I need to be patient.

Glad you have answeres, any info on your symptoms or advice would be great. I am not looking to sue as AD was listed as a possible risk of my procedure.

Jessica

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Have you exhausted all research on implant? Second, Third opinion? I would copy all this and send to RED on here = he is the guru of research!

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I am so so sorry u have had to go through all of this:( I thought I would let u know that I have type2 with constant pressure/burning pain in my teeth. I have a pns and it is amazing!! It keeps my pain levels very very low. And sometimes I am PAIN FREE. I suffered for 5 years…had a failed MVD and tried multiple nerve blocks before I got the pns placed a year and a half ago. I still take some meds also…but, no narcotics and my med regime is very light compared to what it was in the past. I am able to work and function almost “normal”!! Any questions fell free to inbox me!!

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Cleo, fast answer here real quick as I have a meeting. I didn't get the pain from the plate removal. I have the MVD September 2011. By December of 2011, I was in full throttle 24/7 mouth pain- so it has been a year that I have had this pain. I was busy with phsIycal therapy, OT and speech and oral surgeons, dentists, my family doctor and my regular neurologist and my neurosurgeon told me NOT to come back. He actually said that. So I didn't. He said if I got a brain issue, then come see him but that he didn't DO PAIN. What the HELL? So I had the pain for one straight, continuous year since the surgery and that led them to the diagnosis of AD- pain plus numbness that does not respond to medications at ALL ( sometimes makes it worse) that is just always, ever present. The plate removal was causing me pain behind the EAR, but not this hiddeous and horrible mouth pain. The screw FELL out ( how the heck) and lodged itself behind my ear causing it to be very painful for me to even roll over on my right side- plus you could feel it sticking out.

I know what they are trying to do. SAY that the stroke caused my AD because then that would be covered under the informed consent. I didnt give him chit consent to cause me AD, forgein accent syndrome, dysmetria, loss of vision in my right eye when looking down, etc. And I didnt give him consent to actually cause the stroke by not clearing out my blood loss fast enough. I had a mechnical stroke- not a natural stroke and there is a big difference in the field of law. That is the angle my attorney is thinking to use. I am meeting with him today :)

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Lisa, I sent you an add so I can PM you. Where is your unit? They want to put mine in the epidural space in my SPINE. Is yours in your face? Let me know!

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Jessica,

The evaluation of AD is pretty much clinical. Unrelenting pain plus numbness that is always there and just never gets up and walks away makes the diagnoses. They can do thermograms, but they are rarely used outside of alternative medicine. I can guarantee they will tell you to wait two years and come back, and if the pain is there then it must be AD. More like wait two years so you dont get really ticked and go after them; but the risk of your surgery was AD. :(

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Hi KC,

I did what you mentioned. You got the wheels turning in my head so I typed in google PNS unit Pittsburgh and found a doctor at a different hospital that does them. The PNS unit would be wired to my face, and not touch my spine. The MCS unit would be put in my neck between the C1 an C2 to give the neuro highest point access to the V3 of the trigeminal. This new doctor that I found- his secretary is going to call my to be hubby on Monday hopefully to schedule an appointment with us. I seen my pain doctor today and had to ask for an adjustment to meds; but after I told him all about my appointments and diagnoses and such, he seemed better about giving me the meds and upping the doses. ( he had a tendency in the past to wonder why I needed so much meds.. youre a pain doc, figure that out!)

I guess now I just weigh the risks, pros and cons of each device. I THINK with the PNS to the face, I get an incision the face. With the MCS, an incision to the spine. The MCS is NOT FDA approved for Anesthesia Dolorosa, but the PNS IS as it hooks up to the face. I have brain aneuryms. I WILL NEED MRI's of the head. With a PNS Unit you CANNOT EVER have an MRI. With the MCS you can; although I will have to double check on whether or not you can. One part of the phamplet of information said I could; but when I watched the disk it said MRI may cause serious burns or death.

I come for support like everyone else does, but I wont keep answering the same questions to the same person, if that makes sense.

2006-2011 Trigeminal Pain. V3 affecting lower jaw and lower jaw only. Would rarely go to teeth, but sometimes did and up into my temple.

September 2011-MVD Right side

September 2011- Woke up from MVD in CHIN PAIN as well as mouth numbness.

December 2011- Chin pain spread to full on mouth pain. 24/7 burning, vice grip pain pressure type pain IN MY MOUTH. The chin pain left but stayed numb just not as numb as it was.

October 2012- Removal of screw that fell off and lodged behind my right ear. Also removed the entire plate.

December 2011- January of 2013. Been 13 months since the painful mouth burning, pressure type pain started. It is in my mouth- lower right quadrant. Gums, teeth, right side of tongue. 16 months total since having the MVD.

January of 2013. Diagnosed with Anesthesia Dolorosa

Considering stim implant. Not considering- but just having a hard time picking out one that I think would better suit me- the PNS or the MCS.

Hope this helps clear up any confusion about my medical history-which really doesnt have to be confusion! It has never changed, it never will. I am looking forward to having another method to use for pain control other than a zillion pain pills that give me mental fog constantly and don't really work.

~ Trigeminal neuralgia, V3. Anesthesia Dolorosa After MVD.

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Audarah,

I really hope if you get the PNS or MCS, that it works. Patients are in a kind of Catch-22 situation. Your treatment by the surgeon lasts well after the operation. If you think you are being treated poorly, you don't want to complain or get aggressively angry at him, much as sue him, because you still need his help. Your life depends on it.

Don

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Hi Don,

I left the office and neuro that did my original MVD. Actually, he left that hospital too. It was not until after he left, that I got answers- ONE WEEK LATER, by his fellow at the clinic. I found a different doctor at a different hospital who could do the implant and handle my care. He wasn't exactly thrilled to see all what happened to me, and he was especially not thrilled that I have no skull covering where my plate was. That may need worked on next he said. I am going April 30th to yet a different doc who can do the implant without a full on surgery. Implant trial I should say. So that way my neuro doesn't have to do two full on surgeries and cause unnecessary scar tissue he said. But it looks like I will be getting it soon! Thank goodness. the neuro said it would have to be the spinal cord stimulator in my case as he doesn't think he can get a PNS to work for me as my pain is in my mouth not jaw or cheek and he is afraid of erosion if he tries to push it to my mouth. We shall see how this all goes. I am SCARED TO DEATH to get the implant trial. They keep you awake for it, just numb you up, and slide an electrode up your neck. Yeah... scared isnt the word!

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Hi Audarah,

I wish you well on the spinal cord stimulator trial!!! The unknown can be scary. I hope they have described the procedure to you to your satisfaction so you are able to stay calm during the procedure. I once spoke to a patient who had had a back stimulator inserted for her back problem. She was quite pleased with the relatively easy outpatient procedure (compared to her previous invasive back operation).

I would like to know where they make the incision for the procedure and put the lead in your case.

I did not have the skull bone that was cut out reattached to cover my MVD hole either. I had a choice of two different surgeons. I asked both about whether they reattached the cut out skull bone. Both of them do many procedures a year. Both of them do not replace the skull bone. I had seen a video about MVD which showed the bone not being thrown away, but being reattached. I really felt I had no choice, they said they didn't do it. Of course, I ended up getting a serious CSF leak in the covering which he did not detect until after I was released from the hospital.

Don

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Don, I am so sorry to hear about your CNS Leak! I had a stroke on the operating table which did not get discovered until after they released me from the hospital and I went to the ER for the same symptoms I had when I woke up from surgery. I had a cerebellar peduncle stroke- right in the field of his surgery. The stroke lesion missed my brain stem by just millimeters which would have ended me up dead. A fellow at my original neurosurgeons clinic was the one who diagnosed me with anesthesia dolorosa just DAYS after my original surgeon quit and left the practice. I had asked my original neurosurgeon over and over what was wrong with me and he literally SHRUGGED at me. Here, I found out through the fellow that not only was it AD, but also that there was another doctor in the practice that could fix it. That doctor, Dr. M, only did the MOTOR cortex stimulator. He wanted to go in through my C1 and C2 in my neck and place the stimulator. They said in my case, they had to go that far up because they believe my stroke lesion is what is causing the anesthesia dolorosa, and it probably lesioned the root entry zone of the trigeminal nerve- doing this to my mouth.

SO, they said they had to get as close to my brainstem as possible without opening my skull. C1 and C2 looks like my only option. They said the PNS might not work from me because the AD is only PARTIALLY caused by damage to the trigeminal nerve, but also was caused by the stroke- so they have to head towards the root entry zone. I know confused me too. Thus, I asked for another neurosurgeon opinion. They gave me the name of my current doctor/neurosurgeon at a different hospital.

He basically said the same thing but said I have a form of post stroke syndrome that caused the AD and that also the doctor himself didnt help much in it because I had atypical and he never should have operated on atypical to begin with with an MVD. That is my current neuro's opinion. But when I told him they wanted to install a motor cortex stimulator, he flipped and said NO thats the wrong stimulator, just a spinal stimulator! I met the woman from the company that makes them that day. She actually came to my appointment and she said she would be with me every step of the way.

Soooo I set up my pre testing for the stimulator. My insurance company makes it so that you have to pass a psych evaluation before they let you have the trial. I was excited because my new neuro does the trial WHILE ASLEEP. He said he was going to make an incision at C1 and C2 and put in the stimulator, and I would be in the hospital for 3 days out of my 5 day trial and if it WORKED, he then would schedule another fully asleep surgery where i would get the permanent one. I liked the sound of that- ASLEEP.

I took my psych eval and passed. My neurosurgeon called me up with a new plan. He said there was ANOTHER neurosurgeon at a pain clinic who could give me the trial without an open incision. He said this guy would keep me awake ( scared to death), numb me up real good at my c1 and c2, make a teeny tiny cut and slide an electrode up to my C1 and C2. I go to meet with that doc on April 30th to get a better understanding of this. My surgeon who sent me to him said it will eliminate a surgery for me and hopefully it will work. If it DOESNT, I have to get the trial via getting it implanted through a full surgery.

I want to be asleep for this SO bad, but it looks like I am going to be awake and numbed up. I will of course post pictures. The plan is they go in through c1 and c2 in the neck, and wire my leads around my shoulder and bring the battery out my clavicle. I will then be the future Mrs. Bionic Jerrys Woman. HAHA. Anyone else have one of these and can tell me more about it?

Anyone?

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Post op care in the hospital can be really bogus. I know that sounds stupid, but the surgeons do their thing in the OR, then physician assistants take over. Some of these physician assistants do okay when there are no complications, but they do not do okay when there are complications or nuances they should attend to. They are not prone to take action. I asked the surgeon what gives? He said that is "modern medicine". A family member who is a doctor agreed with that assessment.

I had a procedure called a DiscFx on my back. A long 18 inch needle was inserted in my side toward my spine at L1L2. The needle is hollow and surgical instruments fit inside it to implant medicine, cut parts of the disc and suck them out. I was awake the whole time. The doctor said that the spinal stimulator trial operation would be similar. The wire will be fed through the needle and placed near the spinal cord. It was somewhat uncomfortable and a little painful for very short periods, but not very scarey. Yet I see how it could be scarey for some people. Just like small spaces make some people have claustrophobia. If there is no reason to keep you awake, then by all means go under. At a few points during the DiscFx, the doctor yelled out in anger at his assistant who not not holding something where he wanted to. That can lower a patient's confidence level. You may want to go under just to miss that.

I hope that if you get the PNS trial that it works wonders for you. Let us TN2ers know at some point what happens. I spoke to some device makers about PNS for the face and they told me they could not discuss it for the face because it was not an approved use.

Try searching for PNS on this sight, because I have seen people comment they had PNS and it worked.

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Audarah, the surgeon who operated on you and then left is now at a WPAHS hospital. There was an article in the paper today. Thought you would want to know.

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Oh good lord, now he can be over there messing people up. he CANNOT keep going around telling patients the ONLY risk is hearing loss or facial numbness ( that will go away). He just cant. These surgeries have far more risk and him minimizing them like that is an outright atrocity.

MimiK said:

Audarah, the surgeon who operated on you and then left is now at a WPAHS hospital. There was an article in the paper today. Thought you would want to know.
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Not properly telling patients of the risks is one thing, "messing people up" is a more serious accusation. Hopefully this website will be an effective warning to those prospective patients who are not informed of the risks by their surgeons.

Did you look further into PNS?

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I had my stimulator trial implanted and left a blog post on my profile for anyone interested. Unfortunately, THE TRIAL did not work. They are in the wrong area. Had they hit the right arrea, I am sure it would of. They did hit the right area at first then decided to get more coverage of the stimulator and couldnt get back to that spot He was just trying to help. I go tomorrow (2 hour drive) to try new programs to see if that works. If anyone is in PA and is looking for a doctor that implants these and has AD, just message me and I will give you my doctors info. They really do try to help.

Also, it was confirmed via this doctor that "NO you did NOT get injured simply because you had an MVD or because your stroke left a lesion in that area. You GOT hurt because your surgeon was just way too rough with you and severely injured your nerve".

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To Don:

They wanted to put the stimulator in my neck. The idea was to go as close to the brain stem and root entry zone as possible without actually cracking my skull open. They couldnt use my neck due to narrowing and degeneration of all verebra in my neck. I told them this but they really hoped they could use it. He snapped a picture before the surgery, and there was no "good: epidural cushion or space between my disks so he had to use T1- top vertebra in the spine. I was awake. It really is not that bad. The numbing injections really hurt and when he pushed up TOWARDS my brain stem, that hurt and I could hear nasty stuff popping. The line is inserted at T1 on the right side, then shifts off of the midline and goes off to the right heading toward the right root entry brain stem area. Unfortunately, it is stimming my shoulder- not even my face. They just arent even close with it HAHA. Back to them tomorrow to see what they can do and ask why I am itching 24/7. I am sure it is just the tape but I want to rip this lead out.

It was VERY uncomfortable for two days. VERY. You have that foreign object sensation. I kept trying to rip it out during my sleep. It was even painful to breath! Its ok now just very itchy as stated. Whether or works or does not, I get it out on Thursday. They gave me some lorezapam to relax me before the procedure. I think it really helped, but knocked me out fo the rest of the day. Honestly, I almost fell asleep on the table ( you are awake for these), I was THAT comfortable!

Will report back after tomorrow. Gotta hit the hay for the two hour drive tomorrow/

Jodie

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I hope you get the PNS to work next time. Will read your blog post soon to comment. So sorry to hear of confirmation that doc screwed up.