I would like to know who has had this surgery and was it successful? I was just referred to a pain mgt specialist. He asked me to get an MRI of the brainstem area and the 5th cranial nerve to see if I am a good candidate for this type of surgery.
Okay, keeping fingers crossed!
I recently had a new MRI showing compression. I'm mostly a type II and have yet to hear if I'm a candidate for surgery.
What are the characteristics of your pain? Are you a Type I or Type II?
Hi, James.
Yes, Steven has asked a good question, as Type I has a much higher success rate with surgery than with Type II.
But, yes, James, certainly the best of luck to you and please let us know about how you are. Remember, don't let any doc push you into a surgery which may not work, if that is the case.
Take care and keep us posted.
Stef
I did have the electric shocks the first week of TN symptoms, but once I was treated I haven’t had it since. My symptoms are mostly burning ,throbbing & aching pain which is constant but controlled with medication. My neuro told me I have ATN, but the pain specialist told me this week he thinks I have Type I. I will get another MRI of the brain so they can better view the 5th cranial nerve. All of the reports I have read confirm what both you & Stef have said that Type I have better surgical results. I will get the MRI and do the consultation. Then discuss with my GP & neuro. Thanks for your feedback.
Steven said:
Okay, keeping fingers crossed!
I recently had a new MRI showing compression. I'm mostly a type II and have yet to hear if I'm a candidate for surgery.
What are the characteristics of your pain? Are you a Type I or Type II?
James,
In replying to the Microvascular Surgery, it is a very delicate surgery, but a complete relief with no side effects. I had a similar surgery on the left side for Meniere's Disease where they went in behind the ear, but the incision I was left with was far from being the dime size incision from Microvascular Surgery. They clipped the left vestibular nerve (for balance). I have Trigeminal Neuralgia on the right side and they wanted to do this surgery too, but the Nurosurgeon did not know that I had nerve problems on both sides, but the Otolaryngologist did. They were not able to do it at that time as it was opposite sides of the head. Now the fear of damaging the only Vestibular nerve I have left has diminshied somewhat, hence I had the Balloon Compression only yesterday morning. I haven't had any pain since then. I begin tappering off on my meds next week and on until I have none left to take. Yeah!!!!!! The only draw back on this surgery is the numbness you are left with. Yesterday my entire right side was numb. Today I have regained some feeling in the lower part of my check and jawline. Hopefully each day I will regain some feeling. Your choice of surgery is what I wanted but they were not comfortable in being so close to the Vestibular nerve. If you have pain like I had pain, you will take that option. Good luck, my friend.
I had MVD for Type 2 left side June 2010. I have TN on both sides, left is worse than the right. Eight pads were inserted along the nerve on the left. As a result of the surgery I lost my hearing in my left ear and have balance problems. The pain did not go away. I have ear aches, ear jabs, teeth pressure, feeling in my cheek as if it has been smashed with a ball bat and the bones are broken and difficulty smiling and talking. I intend on having second MVD in October. The pads will be removed and replaced with thicker pads. I would have had the repeat surgery sooner had I not been diagnosed with breast cancer. I am recovering from double mastectomy and chemotherapy. I view the surgery as buying me time. If I don’t take a chance on the surgery and have hope for a favorable surgical outcome it’s hard to keep hanging in there waiting for a new drug or cure. In the last year I have lost my hearing, balance, job, breasts and hair but I still have hope. In the case of TN it takes a village. I am been lucky to have family, friends and a compassionate neurosurgeon in my village my heart goes out to all of you that are going through this on your own.
You are one strong person, strong willed and faith as big as a mountain...my prayers are for you this very day. My ailments are minuscule when looking at yours. You don't need to hear mine, but you do need to know you are remembered. "To have courage for whatever comes in life-everything lies in that." ~St Teresa of Avila~
Have a blessed day. What can I do to help?
~Kayron~
I have type I and it did not work.
i had it 3 different times and finally this last time it fixed me i have no side effects its all about finding a good doctor who will do what is neccesary to stop your pain
Wow! I am terrified of doing it again.
Amanda Micaela Cook said:
i had it 3 different times and finally this last time it fixed me i have no side effects its all about finding a good doctor who will do what is neccesary to stop your pain
Amamda,
I also believe that finding the right team of doctors is all that is required. I researched this last surgery, Balloon Compression and researched centers that specialized in this. There are always doctors out there that will treat our illness but finding those who specialize is what I searched for. When you find relief, it is such a blessing. Twice I have found the best team of doctors. I have never had a Pain Management Doctor as none would treat me. I had Neurologist treating me with meds, so reaching out to a speciality team made all the sense. I'd drive the miles again to find relief from pain like I have endured. I do hope the best for you. Please keep me posted.
Kayron D. Huff said:
Amanda Micaela Cook said:i had it 3 different times and finally this last time it fixed me i have no side effects its all about finding a good doctor who will do what is neccesary to stop your pain
Kayron & Amanda,
Finding the right doctor or specialist team who are caring and competent is the critical piece for getting the proper medical care and treatment. Thanks for sharing with all of us on "forum/discussion" topic. It is unfortunate that you aren't a candidate MVD. I still need to have a consultation with the neurosurgeon in July to discuss my brain MRI and the surgery, so all of your feedback and experiences are so helpful. Thanks for sharing and I will keep you in my prayers for your journey with TN as we all share in this malady together as a family.
Forever in my thoughts & prayers,
Jim
Kayron D. Huff said:
Amamda,
I also believe that finding the right team of doctors is all that is required. I researched this last surgery, Balloon Compression and researched centers that specialized in this. There are always doctors out there that will treat our illness but finding those who specialize is what I searched for. When you find relief, it is such a blessing. Twice I have found the best team of doctors. I have never had a Pain Management Doctor as none would treat me. I had Neurologist treating me with meds, so reaching out to a speciality team made all the sense. I'd drive the miles again to find relief from pain like I have endured. I do hope the best for you. Please keep me posted.
Kayron D. Huff said:
Amanda Micaela Cook said:i had it 3 different times and finally this last time it fixed me i have no side effects its all about finding a good doctor who will do what is neccesary to stop your pain
Carolina, I am still hoping and praying for your healing and that you find a good group of doctors who can help you get relief. As Kayron stated, you are courageous and we know that all things work together for good to those who know the Lord. Be patient, be persistent and be courageous.
Jim
Carolina Thatcher said:
Wow! I am terrified of doing it again.
Shinemoon,
I know your 2nd MVD surgery will be a successful one in October and we will all be supporting you online and in prayer for a excellent outcome. Hang in there with your chemo for the breat cancer. My boss had the same surgey a few years ago and she is doing better.
Forever in my thoughts & prayers.
Jim
Shinemoon said:
I had MVD for Type 2 left side June 2010. I have TN on both sides, left is worse than the right. Eight pads were inserted along the nerve on the left. As a result of the surgery I lost my hearing in my left ear and have balance problems. The pain did not go away. I have ear aches, ear jabs, teeth pressure, feeling in my cheek as if it has been smashed with a ball bat and the bones are broken and difficulty smiling and talking. I intend on having second MVD in October. The pads will be removed and replaced with thicker pads. I would have had the repeat surgery sooner had I not been diagnosed with breast cancer. I am recovering from double mastectomy and chemotherapy. I view the surgery as buying me time. If I don't take a chance on the surgery and have hope for a favorable surgical outcome it's hard to keep hanging in there waiting for a new drug or cure. In the last year I have lost my hearing, balance, job, breasts and hair but I still have hope. In the case of TN it takes a village. I am been lucky to have family, friends and a compassionate neurosurgeon in my village my heart goes out to all of you that are going through this on your own.
Greg,
Thanks for all the details on your treatment leading up to MVD. I hope & pray you find a specialist who can help you. I just met with my neurosurgeon today who reviewed my options, but only recommended MVD and the balloon compression since he told me his patients don't have lasting results with glycerol rhizotomy. Another option is radiofrequency rhizotomy. He mentioned some of the risks having MVD such as hearing loss, vision issues, but he told me they would be temporary. I am doing ok with nerve pain meds so I may not proceed with any surgery presently. I agree that some patients have had MVD and are now pain free. I will keep you in my prayers so you have relief from your daily pain. It has to be frustrating to have surgery and then not get the results you hoped for. Hang in there my friend.
Jim
Greg said:
James,
I worked my way through dentists, Endodontists, then pain management conservative treatments. (Steroid injections etc)
The pain management specialist refered me to a Neuro Surgeon after 3 injections that didn't stop the pain.
When I got to the Neuro Surgeons office, the first thing he offered was Cyber Knife Radiation,
I had MVD surgery on 1/25/11 due to having one Cyberknife treatment on 9/24/10 that was unsucessful. They found in the CK workup there was an artery impinging the 5th crainial nerve.
My Oncologist and Neuro Surgeon followed me up for 3 months post CK with no pain decrease while still on the medicine cocktails of Lyrica, Baclofen, Cymbalta, some oral pain meds, etc. Pain medicine and I do not get along. It affects my digestion system and nausiates me.
My surgeon then offered Microvascular decompression as the next alternative. I was all for it as it had been since 2005 when I started experiencing the right maxillary, right upper teeth and eye pain. The pain got worse in 2009 and after Cyberknife in 9/2010 I went on private disability.
All my hopes were that the MVD would stop the pain, but it's been 5 months and no pain relief yet.
Durring the exploratory crainiotomy, they discovered I had 3 vessels impinging the 5th cranial nerve from the Pons to Mecals cave. Since the MVD, I developed right eye double vision thats just starting to get better and right ear hearing lost at 70% and now ear pain.
I now wish I wouldn't of did the surgery but looking back is not the right direction aa looking forward to finding a speciailist who deals with this on a weekly basis is what we all need to do.
Just thought I'd share my experience with you but not every patients MVD has the same outcome, so before you have it done, make sure your surgeon tells you how many he has performed and how many times a month he see's patients with this condition.
I have read that some people who have MVD's are pain free.
Hope this helps you in your search for pain relief.
God Bless
Greg Songne'