Best of luck, cathyb. It is my fervent hope that you will find relief with whichever course of treatment you and your medical team agree to pursue.
Janet (a/k/a Emily's Mom)
Hello Ed. My TN started in 2004 and I had the balloon procedure done at Mayo Clinic in Florida. It only lasted one year and I was back on Tegretol. I regret that I didn't go in for the MVD procedure right after that. All of the reading I have done about TN indicates that 1. The more procedures you have prior to MVD the less likely the MVD will be successful and 2. TN always gets worse over time not better. My advice to anyone with TN is to just get on the Tegretol and go straight for MVD with the best neurosurgeon you can find. That said MVD surgeries can go a number of ways depending on factors such as these. I had the balloon procedure, it failed, I was on Tegretol up to 1200mg daily and after ten years it got so bad no medication was managing it. It was my right side. I came out of MVD surgery June 10 and like many others I have full paralysis in the right side its as if the whole right side of my head is numb including my eye, sinus, tongue and throat. Hearing is fine. Vision is a little blurry on right side. I have been told I am healing great and this paralysis will take several months to a year to get better. Oh yeah I also have vertigo, dizziness, nausea and I get tired very easy. All in all, the TN is gone, and I am getting some feeling in my lower face back now and I do not regret doing this at all, I just wish I would have done it sooner. Good luck to you!! Nicole in VT
Hi Nicole,
Thank you for the advice. I had Cyber Knife in 2009 for a tumor in my ear. my doctor said that is what created the TN. This thursday I have an appointment with a Neurosurgeon and I am going to tell him that the MVD is the only thing want. I do not tolerate the tegretal. My TN in on the upper left side of my face.I can not wait for this to be over.
Best of luck toyou.
Robin
Nicole in VT said:
Hello Ed. My TN started in 2004 and I had the balloon procedure done at Mayo Clinic in Florida. It only lasted one year and I was back on Tegretol. I regret that I didn't go in for the MVD procedure right after that. All of the reading I have done about TN indicates that 1. The more procedures you have prior to MVD the less likely the MVD will be successful and 2. TN always gets worse over time not better. My advice to anyone with TN is to just get on the Tegretol and go straight for MVD with the best neurosurgeon you can find. That said MVD surgeries can go a number of ways depending on factors such as these. I had the balloon procedure, it failed, I was on Tegretol up to 1200mg daily and after ten years it got so bad no medication was managing it. It was my right side. I came out of MVD surgery June 10 and like many others I have full paralysis in the right side its as if the whole right side of my head is numb including my eye, sinus, tongue and throat. Hearing is fine. Vision is a little blurry on right side. I have been told I am healing great and this paralysis will take several months to a year to get better. Oh yeah I also have vertigo, dizziness, nausea and I get tired very easy. All in all, the TN is gone, and I am getting some feeling in my lower face back now and I do not regret doing this at all, I just wish I would have done it sooner. Good luck to you!! Nicole in VT
So, you're saying that there are some troubling post-operative symptoms, but it's as if TN were erased, and your feeling is coming back. At worst, we can be cautiously optimistic. On the upside, we might be able to hear reports of further improvements. That is what I would hope and wish for you, Nicole. Best of luck in your recovery.
Nicole in VT said:
Hello Ed. My TN started in 2004 and I had the balloon procedure done at Mayo Clinic in Florida. It only lasted one year and I was back on Tegretol. I regret that I didn't go in for the MVD procedure right after that. All of the reading I have done about TN indicates that 1. The more procedures you have prior to MVD the less likely the MVD will be successful and 2. TN always gets worse over time not better. My advice to anyone with TN is to just get on the Tegretol and go straight for MVD with the best neurosurgeon you can find. That said MVD surgeries can go a number of ways depending on factors such as these. I had the balloon procedure, it failed, I was on Tegretol up to 1200mg daily and after ten years it got so bad no medication was managing it. It was my right side. I came out of MVD surgery June 10 and like many others I have full paralysis in the right side its as if the whole right side of my head is numb including my eye, sinus, tongue and throat. Hearing is fine. Vision is a little blurry on right side. I have been told I am healing great and this paralysis will take several months to a year to get better. Oh yeah I also have vertigo, dizziness, nausea and I get tired very easy. All in all, the TN is gone, and I am getting some feeling in my lower face back now and I do not regret doing this at all, I just wish I would have done it sooner. Good luck to you!! Nicole in VT
Hi Robin,
I'm so sorry that you traded a tumor somewhere in your ear for a case of TN. Yuck! (I'm afraid to fill in blanks for "you must feel so ______." You've no doubt been on an emotional roller coaster ride, one which requires no further prompting from me.) Where will you have your surgery done? May I ask why it is that you would only want MVD? Dr. Mark Linskey does lots of MVD's and seems to be able to adjust them for almost every patient.
Janet
Hi, my mom has had a couple of these procedures. They did not seem to last for her.She has also had 3 Glycerin Rhizotomies. Was still in pain and after speaking to others on this website decided to try a NUCCA chiropractor which has worked for her for th 2 months with the pain level much lower and tolerablr. She even had another Glcerin Rhizotomy booked and cancelled it for now. I hope this helps
Thanks Coop
Hi Janet,
I am now 5+ weeks into recovery now and the feeling in the right side of my head/face is coming back! I would say it is about 60 percent back. No TN at all, and no medication at all! I was told it could take three months to a year to get all my feeling back. It is hard to wait and frustrating not to be able to feel anything but now that the sensation is returning I am so much more hopeful and optimistic. Nicole in VT
Nicole in VT said:
Hi Janet,
I am now 5+ weeks into recovery now and the feeling in the right side of my head/face is coming back! I would say it is about 60 percent back. No TN at all, and no medication at all! I was told it could take three months to a year to get all my feeling back. It is hard to wait and frustrating not to be able to feel anything but now that the sensation is returning I am so much more hopeful and optimistic. Nicole in VT
Hi Janet, How is Precutanious Balloon Compression performed?
Robin
This balloon compression just moves the blood vessel doesnt it? There is a balloon procedure that moves bones off the nerves. which did you get?
Jane
Hi, Nicole. It's wonderful that you're pain-free and beginning to regain some feeling. It can be so hard not feeling a portion of your face; you need sensation for eating, talking and expressing the myriad feelings we humans convey through our facial expressions. I love hearing success stories.
Robin, he percutaneous balloon compression procedure that is currently in use involves first, putting the patient to sleep. Next, a large needle is inserted into the cheek and, guided by imaging techniques, the needle is guided to the Gasserion ganglion. A small amount of liquid is injected until the balloon assumes a pear shape. The aim is for the balloon to squeeze the nerve against bony tissue and damage it enough to short-circuit the pain signals that the trigeminal nerve has been transmitting.
It sounds counter-intuitive, but the goal of the balloon compression procedure is to damage the offending nerve fibers and prevent them from sending heightened pain signals. It is the larger nerve fiber, not the smaller ones that may be targeted in other procedures, that causes the pain known as trigeminal neuralgia. By focusing on it and not on the smaller fibers, the surgeon hopes to avoid the corneal numbness or anesthesia dolorosa (AD) that can result from some of the procedures for TN. Because the nerve is near cranial bone, it is not possible to move the bone off the nerve, at least not in the way that percutaneous procedures are performed currently.
Stella, the modern form of balloon compression was developed in the 1970's by Drs. Terry Lichtor and Sean Mullin in Chicago. They were resurrecting a then unused procedure that had been developed in Denmark in the 1950's. The Danish work was based on the supposition that TN was caused by cranial openings where the TN left the skull that were too small. So, surgeons cut a hole in the skull to aim at the opening, and then drill some of the bony tissue away to widen the gap. There were a number of problems with the procedure. 1) Pain relief was of short duration; 2) it could - and did - result in serious complications and 3) it was discovered that what produced the pain relief was not the widening of the skull opening, but rather, the inadvertent squeezing and damage to the nerve that actually provided relief. To get back to your question, Stella, ballon compression doesn't move a blood vessel, and to the best of my knowledge, the old procedures that involved drilling away some bony tissue are no longer performed. The present-day variety of percutaneous balloon compression squeezes the nerve against the bone. I hope I've managed to make two forms of brain surgery -- one outdated, the other current -- sort of understandable.
Janet,
I just went to see a neurosurgeon up at Mercy in Springfield MO. He told me about the PBC procedure and also told me that I was not a candidate for MVD. I have a schwanoma small calcium like tumor in my left ear. n 09 I had Cyber Knife to shrink it. well it did. However this tumor is very close to my Cranial Nerve and he said most likely there have been some damage to the nerves surrounding it. like my facial nerve and my acoustic nerve. He gave me a different med to try, still have side effects. Anyway, He did get all excited when I told him that I might try Cyber Knife again.Oh by the way, It is a Cyber Knife clinic. What do you make of this?
Thanks Robin
Robin, I had a CyberKnife done in 2010 for TN. Previously I had a Gamma Knife in 2000. I was pain free for 10 yrs. Then it came back so they did the CK. It took longer to work this time. I still have some minor to medium issues, but the pain is livable and manageable with Lyrica. I know Red and also some other neurosurgeons do not like the GK or the CK. But they helped me. And I don't have a hole in my head. However, in defense of the MVD I know two people that had it done and they are fine. They are only into their 3rd and 4th year though.
I'm guessing he said you weren't a candidate for MVD because MVD (I think) is only for cases where blood vessels are irritating the T nerve.
These are all minor surgeries for the elderly or people that can’t have major surgeries. Has anyone gone to Duke U or had DREZ? Does anyone else have TN, ATN. ON and GN???
Jane
Stella, nearly everyone on here has TN or ATN.
Where are u and why does everyone have it? Nobody has this where I am, doctors are clueless !
I'm in Alabama. Where are you?
People have it sometimes because there is a blood vessel pressing on the trigeminal nerve on the brain. MRI will sometimes show this. Other times people have it and there is no known reason. I can be a mystery. There has been much debate about TN for years! In my case MRI did not show any blood vessel pressing against the trigeminal nerve. Some doctors (perhaps those in smaller towns, or maybe some foreign countries) know nothing about it, or very little. Do you have it? If not, it is a facial pain beyond description. I've compared it to someone stabbing an ice pick in my gums and then connecting an electrical wire to the ice pick and inserting it an electrical outlet. Its totally consuming pain. Like torture.
Jimmy I know exactly where you are. I also went to Uab for cyber knife. They want to refer me to Maryland for better treatment. Dr said the cyber knife probably wouldn’t help me. Is the cyber knife and the gamma ray the same procedure?
Yes actually my Mri showed a huge blood vessel on the nerve. I don’t think it just got like that overnight. I believe it all comes from the spine. Every time they attack my trigeminal nerve it returns worse!
Well, I'm curious why the Dr. told you it wouldn't help me. The Dr. told me that's what I should do . I guess it can vary depending on their assessment.
Gamma Knife and Cyber Knife work the same way. But - the Gamma Knife fits a box-like head frame on your head. Bolting that thing to your head is no fun. They then lie you on a table and the box frame is then attached to a helmet with 201 holes in it (like a kitchen colander turned upside down) with 201 beams all focused on a tiny part of the T nerve. All beams are a low dosage but are all focused on one tiny spot on the nerve. You're held motionless for close to an hour for it to do its thing. No cutting, no surgery. The reason for the box frame is to hold your head motionless during the procedure. You couldn't move your head if you tried.
Cyber Knife does the same thing except: They mold a netting over your face that is attached to the table you lay on. No head frame. Its totally painless. That's to hold your head completely still. Then the CK (which is a robotic device) moves around your head and shoots a single beam aimed at the T nerve. Then it moves to another angle. Then to the other side of the head and so on. It may shoot from dozens or maybe a hundred different angles and positions.. Then its done.
Both procedures are painless. Except -- having the helmet for the GK thats mounted on your skull is no fun procedure. But the uncomfortable part doesn't last long. Compared to TN pain its nothing.
Which Dr. did you see at UAB?
stella said:
Jimmy I know exactly where you are. I also went to Uab for cyber knife. They want to refer me to Maryland for better treatment. Dr said the cyber knife probably wouldn't help me. Is the cyber knife and the gamma ray the same procedure?