Precutanious Balloon Compression

Hello

I was wondering if anyone had gone through percutaneous balloon compression? I don't know what to expect and I am most concerned about post op issues. Like many of our members, I have been struggling with TN for years and I am hoping this procedure will bring some closure to this issue. Any feed back would be greatly appreciated

~Ed

I can't say. I've never had that. I found this that might give you some input about it. General anesthesia is used, so you would be asleep when its done. This article says a 93% success ratio. Appears to be a short term fix. No treatment I know of is guaranteed to be permanent when it comes to TN.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3322396/

Ed,
I have not had the procedure, but speaking as a healthcare professional, the fact that you still have questions about what to expect tells me you need to have a thorough conversation with your surgeon, and to make sure all your questions are answered BEFORE the procedure is even scheduled. Call their office & ask to speak to his/her nurse - the nurses are usually easier to reach & you can discuss your concerns with them. By definition, the nurse’s role is to be a patient advocate, even as the physician’s “representative.” Remember, you are essentially hiring the surgeon to do a job: they work for you. You should only consent when you know exactly what to expect. That includes everything from length of the procedure & recovery time, type of anesthesia, any activity & dietary restrictions, expected outcomes (including success & failure rates for your specific diagnosis), how you expect to feel immediately afterward, possible complications & their frequency, & any other questions you may have. I wish you the best for a very successful outcome.

I had a percutaneous radio frequency rhysotomy done in late December. It was done on an emergency basis due a HUGE flair up which had left me unable to speak or swallow. It was done at one of the best hospitals in Chicago by the head of neurosurgery-a greater man does not exist.

The procedure is minimally invasive, you are put to sleep but not put on any breathing machines. A needle is inserted into the canal where your trigeminal nerve comes through to your face. You will be woken up then and asked to tell the doctor when you an feel tingling in your teeth. Once they hit that spot they put you back under.

You wake up with very little pain and just some swelling in your face and you will bruise at the sight. The area will feel numb-similar to when you have dental work done. Most times the whole procedure takes only a few hours from start to finish. You normally are released and sent home the same day

The numbness in your face (specifically your cheek area)normally takes months to go away and can take as long as 2 years. The trigeminal pain should be gone immediately but you have to worry about rare side effects like your V-1 part of your nerve being affected and you having numbness in your eye.

A very rare issue can be Anesthesia Dolorasa-don't even bother reading about it because it will scare you and your chances of having it happen are about 1-2%, unfortunately when I had my compression I did get AD and although it is a terrible thing to deal with-it is far better than the unrelenting pain I was in previously.

Best of Luck-prayers and blessings

Hi,
I have had this procedure and it’s worked well for me. I had severe tn and couldn’t talk eat or even stand a breeze on my face. Even though this didn’t totally remove the tn it has reduced it to where I can have a normal day. I can talk eat and drink the pain has been reduced to a tingling with occasionally getting to the stage were I up my meds.
The only side affects I had was a sort of numbness on the right side of my face. It has been 2 years now and I’m only taking gabapentine 2 times a day upping to 3 if the pain gets worse. This is a huge reduction compared to what I was on. I would recommend this procedure to anyone suffering tn.
I hope this was helpful.

This is the procedure (percutaneous radio frquency rhysotomy mentioned is the one that my husband will have when medicine is no longer effective and will be performed at the Mayfield Clinic in Cinc., OH. The only thing that I would add to the above is that pain needs to be occurring at the time of surgery so that specific nerve location can be determined. Highly recommend Dr. Steven Bailey http://www.mayfieldclinic.com/MC_bios/bio_Bailey.php. He is a good listener and sees a lot of TN cases. The effectiveness of this procedure is very good and less invasive than other treatments.

hamboy said:

I had a percutaneous radio frequency rhysotomy done in late December. It was done on an emergency basis due a HUGE flair up which had left me unable to speak or swallow. It was done at one of the best hospitals in Chicago by the head of neurosurgery-a greater man does not exist.

The procedure is minimally invasive, you are put to sleep but not put on any breathing machines. A needle is inserted into the canal where your trigeminal nerve comes through to your face. You will be woken up then and asked to tell the doctor when you an feel tingling in your teeth. Once they hit that spot they put you back under.

You wake up with very little pain and just some swelling in your face and you will bruise at the sight. The area will feel numb-similar to when you have dental work done. Most times the whole procedure takes only a few hours from start to finish. You normally are released and sent home the same day

The numbness in your face (specifically your cheek area)normally takes months to go away and can take as long as 2 years. The trigeminal pain should be gone immediately but you have to worry about rare side effects like your V-1 part of your nerve being affected and you having numbness in your eye.

A very rare issue can be Anesthesia Dolorasa-don't even bother reading about it because it will scare you and your chances of having it happen are about 1-2%, unfortunately when I had my compression I did get AD and although it is a terrible thing to deal with-it is far better than the unrelenting pain I was in previously.

Best of Luck-prayers and blessings

I had it performed two separate times. The second one knocked back number of pains quite a bit. I do remember one unpleasant thing (sorry), about 2 weeks later I was hit with about 15 minutes of screaming ( and I do mean screaming… The noise brought my son upstairs who was downstairs on his headphones and never comes up when I yell for him). It struck 3 times in those 15 minutes. After that the pains were a hair more painful for a couple weeks then back to their normal level but less often by about 50%.
The surgery is performed under general anesthesia. All in all it was the easiest procedure I had permormed.

I had a precutaneous balloon compression in January this year and gained immediate relief from what was extreme pain at the time. I had hoped for about 2 years relief, however the pain has started coming back within just 6 months. The only thing I would add to the discussion is that the cause of my TN is different to most in that it is caused by a meningioma tumor compressing the nerve in the skull base. Despite two open skull surgeries and gamma knife treatment the tumor seems to be growing again.

mrl, I wish we had a "like" button so that I could register a like for my response. Well said!

Janet, a/k/a Emily's Mom

mrl said:

Ed,
I have not had the procedure, but speaking as a healthcare professional, the fact that you still have questions about what to expect tells me you need to have a thorough conversation with your surgeon, and to make sure all your questions are answered BEFORE the procedure is even scheduled. Call their office & ask to speak to his/her nurse - the nurses are usually easier to reach & you can discuss your concerns with them. By definition, the nurse's role is to be a patient advocate, even as the physician's "representative." Remember, you are essentially hiring the surgeon to do a job: they work for you. You should only consent when you know exactly what to expect. That includes everything from length of the procedure & recovery time, type of anesthesia, any activity & dietary restrictions, expected outcomes (including success & failure rates for your specific diagnosis), how you expect to feel immediately afterward, possible complications & their frequency, & any other questions you may have. I wish you the best for a very successful outcome.

HI Ed I am Robin, I am seeing a neurosurgeon this thursday, I can tell you that I have had Cyber Knife for a tumor in my ear canal that is what brought on my TN. I already know I do not qualify for that again and Gamma Knife, I do not think so. What I have read in researching is that MVD can last up to 10 to 15 years, although everybody is different. I would ask the surgeon to be very candid with you about the side effects. And I will pray for closure for us both...

Robin

Keep in touch

My father had his one first done in the summer of 2010. It seemed to work, and I believe he even went off the tegratol for a while. He eventually had to start taking the tegratol again. Last fall, he had a major flair up. He went in for his second balloon compression in early December. This time the surgeon came out and said the procedure failed due to swelling, and that he would have to be set up for a different form of the surgery. Amazingly, a couple of days after the "failed" surgery, his pain went away. He has been pain and medicine free since then :). His biggest complaint after both procedures was a stiff jaw and difficulty eating for a while, but those symptoms resolved. I don't think he has any residual numbness either. For the record, he had a gamma knife a year or two before his first balloon compression, which provided only a little relief. We are trying to avoid the open surgery for as long as we can. Good luck.

A 93% rate of success is rare for TN procedures. This is actually a point in favor of the balloon compression surgeries. I am very glad of the successes reported here. For many patients, MVD provides only 2 to 3 years of relief. When relief is longer, it is cause for major celebrations!

ksimager, you are a rare family member, indeed. So many neuralgians have family who disown them, believing that their pain is "all in their head," or that the afflicted family member is exaggerating tales of pain. I cannot conceive that it is at all possible to exaggerate the worst pain known to medicine. I'm so glad that your father can depend on you for belief and for care. Blessings to you both.

Janet, thank you for the kind words. Dad developed TN while in high school, so 50+ years ago. He didn't find a diagnosis until his late 20s or early 30s. We grew up calling it tic douloureux , though I can't remember much of what he went through back then. I have witnessed 2 serious flair ups since my parents moved into the town where I live 6 years ago. Mom was still alive for the first one, but has been gone for 5.5 years now. Dad is tough and stubborn, so anything that can bring him down definitely isn't "just in his head." His last flair up left my brothers and I feeling totally helpless to do anything but go over and just sit with him as often as we could. Dad is lucky that the balloon compression surgeries have relieved his pain both times; we really don't want to go ahead with the more invasive options.


When I had my very first attack last October the pain was so bad, my son was working in another state, I called 911 they took me to the ER and was calling it a migraine. It lasted for 3 1/2 hours until the second dose of morphine was administered. So if anybody doesn't believe me I play them the cd I got from the police station that took my call.Even I can't listen to it for long. It sounds like I am in horror movie or a torture chamber. Just recently was awakened again this time I called my son he came rushing over, now he understands. All he could do was just hold me until the meds kicked in.


ksimager said:

Janet, thank you for the kind words. Dad developed TN while in high school, so 50+ years ago. He didn't find a diagnosis until his late 20s or early 30s. We grew up calling it tic douloureux , though I can't remember much of what he went through back then. I have witnessed 2 serious flair ups since my parents moved into the town where I live 6 years ago. Mom was still alive for the first one, but has been gone for 5.5 years now. Dad is tough and stubborn, so anything that can bring him down definitely isn't "just in his head." His last flair up left my brothers and I feeling totally helpless to do anything but go over and just sit with him as often as we could. Dad is lucky that the balloon compression surgeries have relieved his pain both times; we really don't want to go ahead with the more invasive options.

My doctor recently prescribed me sumatriptan 100 mg tablets. He said to take it when I start feeling any warning signs like a headache or my jaw starts hurting. I take 300mg gabapentin in the morning and at night and 200 mg 3 or 4 times a day in between. I have a low tolerance to Epitol.which is an everyday thing.

I hate that this is happening to us. I use to be an outgoing person, working and taking car of my property and my horses. Now I can not go outside unless I wear a hat so the sun doesn't shine on my face. I scarf over my jaw like a bandit when the wind is blowing. I can not open my mouth big at all. My upper lip and face on the left side is always tingling. I have to eat soft food because anything that takes chewing makes the strikes (That is what I call them) through my upper left jaw and into my head. The other day I was driving and felt a small strike go from the top of my head and inside, felt like lightning. I get them sometimes behind my left ear and down my neck.

I say anything that a surgeon can do to make it stop I am up for it.

I wish the best for everyone who suffers from this horrible torture.

Robin

I am so sorry for what you've had to endure, Robin. A lot of people with TN end up withdrawing. It's so hard to schedule a life around the unpredictable schedule of triggers and flare-ups. It is believed that Jefferson Davis, the president of the Confederacy, had TN. He described lightning-bolt type pains in his journal. As the war went on, it became more and more difficult for his generals to have chances to meet with him.

My daughter's TN went undiagnosed for a long time. Emily decided that the one thing she loved the most was horse-back riding, and that she was not going to let the pain get in the way of the enjoyment of riding her beloved Granby. Granby helped Emily learn to leave her pain at the barn door. I'm not sure where Em found the mental stamina to be able to do so. She had trigeminal neuropathy, a form of TN that results from an injury to the trigeminal nerve, and it progresses with frightening speed. I hope that your horses are just as therapeutic for you as Emily's were for her.

KSimager,

How awful that your father has had to live with TN for over half a century. So many patients in support groups say that their family members don't understand their pain; families sometimes disown the one person who most needs support because they're thought to be hypochondriacs, or that they're just seeking attention. Your father is lucky to have family who understand his pain and will be there for him when what he needs -- other than strong pain relievers -- is a quiet, understanding person.I hear you on the issue of wanting to avoid more invasive procedures. From what you've described, your father is at least in his 70's. The older the patient, the riskier the procedure.

My very best wishes for your dad.

Janet

RCBatty said:


When I had my very first attack last October the pain was so bad, my son was working in another state, I called 911 they took me to the ER and was calling it a migraine. It lasted for 3 1/2 hours until the second dose of morphine was administered. So if anybody doesn't believe me I play them the cd I got from the police station that took my call.Even I can't listen to it for long. It sounds like I am in horror movie or a torture chamber. Just recently was awakened again this time I called my son he came rushing over, now he understands. All he could do was just hold me until the meds kicked in.


ksimager said:

Janet, thank you for the kind words. Dad developed TN while in high school, so 50+ years ago. He didn't find a diagnosis until his late 20s or early 30s. We grew up calling it tic douloureux , though I can't remember much of what he went through back then. I have witnessed 2 serious flair ups since my parents moved into the town where I live 6 years ago. Mom was still alive for the first one, but has been gone for 5.5 years now. Dad is tough and stubborn, so anything that can bring him down definitely isn't "just in his head." His last flair up left my brothers and I feeling totally helpless to do anything but go over and just sit with him as often as we could. Dad is lucky that the balloon compression surgeries have relieved his pain both times; we really don't want to go ahead with the more invasive options.

what is percutaneous balloon compression exactly

According to Striking Back by George Weigel and Kenneth F. Casey, M.D., percutaneous balling compression begins with the insertion of a needle through the skin ("percutaneous" means just that -- through the skin), then using a stylet to introduce a tiny balloon alongside the trigeminal nerve and into the cavity within the bone, known as Meckel's Cave, then inflating the balloon with fluid so that it squeezes the nerve against the bony tissue. It seems that it is the squeezing of the nerve that alleviates TN pain. The procedure damages the larger, myelin-sheathed nerve fibers, not the smaller nerve fibers that have already lost their coating of myelin. While the larger nerve fibers trigger TN attacks, they do not themselves carry pain messages. By damaging the larger, triggering nerve, balloon compression stops TN attacks before they can be initiated. The procedure has the advantage of avoiding damage to the smaller nerve fibers which could then lead to the complications of corneal numbness or anesthesia dolorosa. I'm glad you asked your question, Stella. It gave me a chance to review information I hadn't read in a long time.

Sounds like something I want 2 look into for my tgn.