Now I'm really confused!

I went to a neurosurgeon at Vanderbilt…supposedly one of the best teaching hospitals in the country. I live in Nashville and that is where Vanderbilt is located. I met with a really nice surgeon who suggested MVD or balloon compression. I felt as though I wanted a second opinion so I went for that today with a neurosurgeon at Centennial…another good hospital. He said he would never do the balloon and at my age (61) I could do the mvd although there were many risks and if it were him he would do the gamma knife. I can’t remember to be honest if it was the gamma knife or cyber knife. He is setting me up with an appt. to talk with the Dr. that does it and then he wants me to come back to him and discuss the options. He said he ideally likes to use medication above all other things, but in my case it was not working. I am really confused now. He said the mvd has risks, especially of possibly doing something to the cornea of the eye. I have no idea what to do now. I was almost convinced of the mvd, but now I am not so sure. How in the world do you ever make a decision on what to do???

When faced with a difficult decsion I do a pros/cons list. I fold a peice of paper in half and write Pro on one side and then Con on the other. I then list pro/benefits and cons/ risks. Most often than not will go with the decsion that has more pros than cons. Maybe doing a pro/con list for each proccedure can help you with the doubts.

The TN nerve does go to the cornea of the eye. Many people I know have had problems with their eyesight after MVD surgery requring use of eye drops for long periods of time. Others have had major inner ear problems after MVD surgery that resulted in loss of hearing and/or vertigo. After my MVD surgery I had to use a walker for about a month post-op due to vertigo. Fact is every TN sugery has risks. What are you willing to risk? You are wise to get all the information you can and then go from there. That way you can make a well informed decsion.

Another thing I have noticed. Each hospital has a proceedure they seem to push over others. It is your decsion, not theirs. Do not let them talk you into something you are not confortable with.

P.S. Just saw on your profile there will be a local TN support group in your area soon. That will be a great place to bring this up and get imput.

Thank you Sarah…and yes I do plan on bringing all this up at the support group meeting. I can’t wait to go to it.

Mary,

I was 55 years old when I had my MVD. The neurosurgeon I went to for a second opinion told me I was not a candidate for Gamma Knife. He said I was too young, in good health and the MVD does not damage the nerve and the Gamma Knife does damage the nerve. Yes, he discussed the risks of the MVD. But all the other procedures damage the nerve and then if it doesn't work, the MVD will not work because the nerve has already been damaged. I was on alot of meds and they weren't working. So I had to take the next step. MVD worked for me. Do research and make sure your neurosurgeon has alot of experience in this surgery.

Good luck

Connie

How do I know what is a lot of experience??? The Doc at Vanderbilt says he does 5 or 6 a month. Is that a lot???

I THINK LIKE NANCY P RICE

I THINK IF YOU REALLY WANT TO DO THAT TO YOUR BRAIN YA GO FOR IT!

AM NOT LETTING NOONE TOUCH MY LITTLE BRAIN MAYBE AM SCARED

BUT I BEEN FIGHTING THE PAIN!! OH YEAH I CRY SO LOUD SOMETIME

WORST THAN A BABY I HURT SO BAD SPECIAL IN THE MORNING TIL

LUNCH MY NECK HURTS I RUB IT MAKE ME GO TO SLEEP BUT I DONT WONT NO SURGERY

RSEARCH JUST LIKE NANCY BEFORE I DO ANYTHING AND IF I DO SOMETHING I DONT WANT

TO TAKE PILLS NO MORE I HATED TAKING PILLS BUT THATS WHAT HELP ME CALM MY NERVES ,

I DO KNOW THAT AM NOT HURTING MUCH ,BUT AM LOOKING IN THE INTERNET FIND THE BEST

BECAUSE AM SCARED THO!! BUT ONE THING GOD WILL GUIDE ME THE RIGHT WAY!! GOD BLESS WISH YA LUCK!!

I had a MVD in 2007 after suffering TN for 8 long years, I was 60 then. I did lose my hearing in the left ear and my balance has never recovered, but for 2 wonderful years I was pain free. Personaaly even if I had known that was going to happen I would still have had the MVD. There is also the chance they could cure your TN there are success stories around. My surgeon was really upset he had done that to my hearing, I was very unlucky. Now I know my TN is back, once again the surgeon wants me to have a MVD, I am seeing a different one this time, at the moment I won’t have it done. My pain though has been pretty bad, the TN is different this time around it does not go through my eye into my head, the pain goes into my deaf ear, I have a nasty dull ache a lot of the time in my cheek. Now I have retired I can pick and choose when I go out, so I pamper myself more. Really feel for you it is the hardest decision, I was not on this site back when I had mine done. Good luck with what ever you decide. Love Margaret.

Most of these risks are a 1% chance. I am having an mvd in 2 weeks- my first one, and yes, this is well worth the risk for me. I am 30, and a CISS/ MRI scan shows a superior cerebral artery interferrfing with my TN nerve. So this, adds confidence that I am 9.5 out of 10 going to be fully successful. I am seeing a nerusergeon at Georgetown, who is top notch. With these factors in place, I am fully confident I am making the right choice. Make sure you pick the best neurosergeon- I went through a couple, until I met one that I clicked with and gave me confidence. Getting the 3D Ciss (or Fiesta) MRI sequence was a huge help to show a tangable cause, and knowing I am seeinga top dr, who is just down the street from me- I am blessed! Just rememeber, even though the risks of surgery are 1% (regardless of the surgery being sussessful for TN), 1% is very low, but very real if you are that 1% who loses hearing, for example. For me, I am very willing to take that risk. Its either that, or out of work on narcotics and being cognitively sedating- knowing i wont get better. With this, I have 95% chance of getting better.

new word of the day while sedated- “interferffing”- that must be a surgery for a furry animal :slight_smile: Or even better- fluffy animal loves!

Also, ask your neuro what your success rate is- it varies per person. Since I’m a prime canadate, i’m high. if it were low- I would have more doubts.

Experence is often used as a predictor of sucess of MVD surgery. Here is the thing though. I had my MVD, at the Portland Oregon VA hospital by a neurosurgeon, who did only 20 MVDs a year. He was restriced to the patient base at the hospital, so he did not often have TN come up in his practice.

Fact is I went to a neurosurgeon who did not do a lot of MVDs and had a sucessful surgery. I know others who went to well known TN neurosurgeons, who did a lot of MVDs, and had horrible outcomes. You may not know totally know what is going to happen until you go ahead with the surgery.

Oh, Mary, I am in the same boat, I suppose.

Certain meds work for me, but they are the ones that docs are reluctant to prescribe at therapeutic levels for me. I just want to be fixed. I hope you find some answers at that meeting. I hope I can attend.

Since my pain clinic seems reluctant to give me the specific meds that work to control my pain, my only option would be surgery. But, what kind? It is a big decision. I agree. But, it doesn't sound as if your are confused. It sounds as if you are doing your homework, which is hard to do when you are in pain. Hats off to you, trooper.

Hugs,

Stef

Thanks Stef…this thing has reared its ugly head again. Cannot talk or eat…the pain is unbelievable and I know my daughter wonders about me. One minute I can talk and the next I can’t. I wonder if anybody else cries like I do. I feel like such a baby…but when I try to talk and the pain is so bad I get so frustrated and I cry. It really doesn’t seem like this kind of pain should be put on ANYBODY.

Oh my goodness, Mary, I know you may not think anybody knows what you are going through, but I think I do. My post above reflects that my pain is not completely managed, and I spend a great deal of my time, still in pain. Since then, I am almost convinced that I am not a surgical candidate. But, i was wrong. We are not in the same boat currently, but I have been there . . . .

Wow. In the fall of '09, my pain was so constant and severe, I was desperate. I cried almost every day, which made the pain worse. However, and I don't know how now, I suppose God was holding my hand, through a veil of pain, somehow, I found my pain clinic on the internet and got an appointment through a referral from both my Chiropractor and General Practitioner. I am still anxious every time I go there. I know that whatever regimen I am put on, will dictate how I am able to function for a whole month. However, the pain killers that they have provided for me have been the only thing that has seen me through, as I was on the brink, literally.

I know that you see a Neurologist. Neuros, typically treat symptoms with the usual Neuropathic pain medications, Oxycarbamazipine, Baclofen, Neurontin, Tegretol, etc. and procedures. I have tried most of these and, at least for me, they provide little relief from the type of pain which used to bring me to tears.

Only a few months ago, I began seeing a Neurologist. I had let my condition go, thinking I could handle it, until I get some pain relief to remain functional, so I put the cart before the horse, not sure if it was TN or not, but my pain management doctor knew exactly what I had from the first visit. My pain clinic actually referred me to my Neurologist.

To sum things up, at first, Hydrocodone, which they prescribed at first, allowed me to get pain free bursts when I could eat, talk and get some things done. But, the dosage I required in order to control the pain made me worry about my liver, as Hydrocodone contains a whopping dose of Acetaminophen. So far, Oxycodone IM along with Neurontin, Cymbalta and Diazepam ( I think the Oxycodone does most of the work) is the only combo which has saved me from the kind of horrible pain which you describe above.

You are in my prayers. Your reply was sent when my original page was down. So, I just now read it today.

It is my opinion that your pain should be addressed with MEDICATION DESIGNED TO CONTROL PAIN. Many physicians and experts DO NOT negate the therapeutic effects of opiate therapy for TN and ATN symptoms. There is controversy within the medical field as to whether they are effective for neuropathic pain. However, I am living proof that they are!!!!!

Sometimes, I believe that they saved my home and relationship, if not my life. I went from crying every day and being at the end of my ropes to somewhat functional. I am still not prescribed the long lasting dosages which would alleviate my pain fully and allow me to return to my career, but I do get 4 pain free bursts during the day. In between, is the time when the hurt comes on, and I remember those tearful, hopeless feeling days in '09.

You are right, this pain should not be put in ANYBODY! If what you are being prescribed is not working, I wouldn't hesitate to find a pain clinic, by asking your Neurologist or General Practitioner to refer you to one. Remember, they work for you!

All the best and big hugs.

Your friend,

Stef

Sara,

I'm so glad you chimed in. I wish you luck with your surgery and I will watch your progress. My doc shared very similar things with me telling me I had 90% chance of being pain free. I love hearing your confidence in this procedure allowing you to live a pain free life. I'm only a little scared of the side effects or potential risks but the recovery time is really what scaring me. I have 2 children under the age of 2 who are extremely dependent on me. I know my husband would do anything to help me, but the length of the recovery seems crazy long. It is also impossible to me to be out of work for more than 3 weeks (though I do have the luxury of working from home).

How are you planning to deal with the super long recovery? Do you work or have a family?

Again, good luck on the surgery, you will be in my thoughts!

Jen


Sara B said:

Most of these risks are a 1% chance. I am having an mvd in 2 weeks- my first one, and yes, this is well worth the risk for me. I am 30, and a CISS/ MRI scan shows a superior cerebral artery interferrfing with my TN nerve. So this, adds confidence that I am 9.5 out of 10 going to be fully successful. I am seeing a nerusergeon at Georgetown, who is top notch. With these factors in place, I am fully confident I am making the right choice. Make sure you pick the best neurosergeon- I went through a couple, until I met one that I clicked with and gave me confidence. Getting the 3D Ciss (or Fiesta) MRI sequence was a huge help to show a tangable cause, and knowing I am seeinga top dr, who is just down the street from me- I am blessed! Just rememeber, even though the risks of surgery are 1% (regardless of the surgery being sussessful for TN), 1% is very low, but very real if you are that 1% who loses hearing, for example. For me, I am very willing to take that risk. Its either that, or out of work on narcotics and being cognitively sedating- knowing i wont get better. With this, I have 95% chance of getting better.

a balloon compression has the risk of damaging the motor part of your V3 nerve (if your pain is in your lower jaw). this will affect your ability to speak and chew food. drooling is a side effect. these symptoms usually correct themselves. the procedure will also leave you with permanent numbness; the density of this numbness is directly proportional to the size of the balloon used, and how long the balloon is compressed against your nerves to injure them. the cornea is also at risk for permanent numbness if your pain is in V1. (the MVD has no overt risks to the cornea of the eye.)

the Gamma Knife/Cyber Knife has the risk of numbness, radiation damage to brain stem and brain matter, and increased nerve injury due to radiation. the last risk is the most common, which leads to increased facial pain and sensory aberrations.there is limited long term data on the safety of gamma knife use on TN patients.

an MVD has the risk of hearing loss, vertigo, facial nerve damage, CSF leak, and death. there is a minor risk of damage to the trigeminal nerve during surgery. the cranial nerves are monitored during the operation to avoid any needless contact.

doctors usually advocate the surgery they are most comfortable with, not necessarily the one which is in your best interest. there are also sometimes financial politics; kickbacks from gamma knife/cyber knife company, etc.

good luck,

vesper

Yes, Vesper. Those who do not stand to gain from performing certain procedures, like MVD, Balloon compression and Gamma Knife, are more likely to be realistic about the possible complications and outcomes of these procedures.

Right Gloria, I concur, it seems that no consistency exists among health care professionals when speaking in regards of percentage of success of all of the usual procedures used to treat TN. If you will notice, those who do not stand to benefit will simply explain the procedure and possible complications with out spouting stats.

Jen B, I would proceed with the utmost of caution. I also have young ones who are depending upon me, and understand that serious complications from surgery on or around my brain stem, brain, nervous system could also affect their lives more than if I were to continue trying to find the right combination of meds. Each person is different, but being ATN, that is why surgery is the last resort of me, personally. It may be right for you, or for Mary, for that matter. I commend Mary for getting multiple opinions. The pain of this condition is so overwhelming at times, it could cause one to jump into surgery, anything which may help. I know. I've been there. At one time, I was upset that my Neuro for would not refer me for MVD immediately, telling me that I needed to first see a Head and Face Patin Specialist. I am getting a second opinion, like Mary did, just because it is good common sense, I believe. Not to say that there are no honest, or caring physicians out there. However, ultimately, after researching things for oneself, reading, considering one's own personal set of circumstances, etc., we are more likely to make the choice that is right for us, as opposed to what a physician who will see possibly 20-40 approx. patients per day is right for us. They give us 10-30 mins. approx. of their time. That is why we are are own best researchers and advocates. I am proud of the people on this site, as they will tell you the things that no doctor would let you know in order to help yourself. You are a case to them. You are important as someone's friend, mother, father, aunt, uncle, child, spouse, etc., and the rightful guardian of your own body.

Wow, I suppose I got very wordy in saying, Gloria and Vesper, I concur.

As always, wishing compassionate care, and strength to all.

Your friend,

Stef