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Living With Facial Pain

Total Sensory Rhyzotomy

Greetings all!

Hoping to have feedback from someone in this forum who underwent the above procedure and can describe the aftermath.
First of all, let me describe what I mean by TSR.

TSR is to me the cutting of the sensory part of the nerve while leaving the motor part of the nerve intact. I asked my neurosurgeon to completely cut the nerve. His reply was no neurosurgeon in his right state of mind will do what you are asking.

I have had a MVD, gamma knife and the glycerol injection which is starting to wear out after 1 year and a few months. On carbazepimine 400 mg time released plus gabapentin. Tired of living like this. TN is in control of my life, not me. I have become a bomb that can go off at anytime. So, for those of you who have had the TSR, can you please tell me if you got permanent relief from this disease? Did your affected side of the face become numb? Please share.

Thank you.
Sergio

Hi Sergio
I have had TSR in 1965 on the right side of the face at the age of 19. Carbamezapine was not available than. The surgeon had the 2nd & 3rd division of TN my right side of face is totally numb. The optic nerve was spared. As the surgeon said that it never involves In pain when alone. The Motor nerves were totally spared. And my mastication strength is very good. But Have to b careful while chewing food.as I keep biting my inside part of cheek.
In the hands skilled surgeon this surgery is safe.
Hope this helps.
Yakub

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Hi Sergio
I forgot to mention in just sent mail to you that after TSR in 1965. I have had permanent relief from pain. The total numbness that follows surgery is worrying post surgery. But we get used to it after few months.
Hope u r feeling better.
Yakub

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Hi Yakub,

Thank you for your replies. I am tired of living like this and want to take my life back and move on. I had a recurrence this Sunday while coming back home from the White Mountains here in New Hampshire. TN does not like cold air I learned.
Your feedback is very valuable. Thank you. You have confirmed everything that I have researched on the web, but wanted to hear from someone who actually had the procedure done.

Thank you kindly!
Wishing you the best!
Sergio

Hello Sergio
If you decide to go for TSR make sure the surgeon has performed this type of surgeries and conversant with it. vv imp to have skilled surgeon. I have learnt that this surgery was performed in early part of this century when Tegretol & other drugs were not invented. Carbamezapine is a major breakthrough & works for 80% of the patients. After TSR on Right side. 9 years later TN pain started on Left side of my face, since 1974 I am no Carbamezapine 1 tab twice a day gives complete relief. I m also fortunate to have long periods of remissions in between. This pain is known to go away on its own but certainly comes back after varying periods of reliefs. This peculiarity helps in the diagnosis of TN disease.
Wish you get better soon.
Yakub

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Hello Yakub,

Nice to hear from you. Thank you again for your helpful inputs.
I have been on Carbazepimine for years. Twice x day 400 mg time released.
TN might have gotten used to the medication. Next Wednesday I see my renowned neurosurgeon. If it does not get any better by then, I will discuss surgery. Knowing him, he will propose a Neurectomy first, before TSR. What I have read about Neurectomies is encouraging. We shall see.

All the best to you!
Sergio

Hello Sergio, It’s been a while , 2016 October, since I had the MVD surgery. I started with this illness in late 1998. I had a very good, young, handsome doctor who listened to my complaints and without hesitation ordered a brain scan. Lucky for me it showed nothing but it was a good start. He then sent me to a fellow college neurologist that he thought was familiar with TN. By the way I also have facial movement.So I start with Ms. Doctor around 1999 and she diagnosis me with TN and Facial Movement. For the TN she prescribes Oxcarbezapine and for the most part it works.(I have a lot of oxcarb. I don’t take it but they still order it.) For the facial movement I receive Botox injections every 3 months, about 20-25 sticks per session. This treatment continues for quite sometime even though the doctor never saw me have a episode of TN. She would simply increase the medicine. So here we are now at 2017. Sergio, I don’t no what happened or why I became so upset. I just know that I left the doctors office that day determined to find a cure, a fix, a something or I knew I would just kill myself. I was so tired of the pain and taking increased amounts of the medication. My intake went as high as 3200 mg./24 hrs and I still had the episodes. So, determined to fine a cure for this awful sickness, I came home and I got on my computer. I simply typed in Trigeminal Neuralgia. To my total surprise up comes all these different types of surgical procedures that the patients who had had the procedures were speaking on whether or not the surgeries had worked or needed to be repeated. My shock was that here I was almost 20 years of suffering with this condition and at no time did this Neurology doctor ever mention their were several different types of surgeries that could possibly help or even cure me. Sergio, it took me a while to get over the anger because it became clear to me that if I went to a neurosurgeon she would lose me as a patient but even more she would lose the huge amount of money that my insurance was paying for the Botox treatments which were around $3500.00 each visit!! So I started reading and reading and reading. When I went for my next visit I asked Dr. if she was familiar with the different types of surgery for TN. She answered , Yes, without looking me in the face. She then whipped out a sheet of blank paper and without hesitation she wrote down a name. She said to me, " I’m so glad to see you so interested in the surgeries. This is the doctor I would recommend. Now, let’s get get your facial done! I put the paper away. I came home and typed in Barnes Jewish Hospital/ Neurosurgery department. I read about each doctor, how long they had practiced, how many TN surgeries had they done, how old were they, how many papers had they wrote, where they went school, whether they were older with a little gray hair, what position they held in the department…what ever I could find to make me think they were the one for me. I settled on a doctor by the name of Joshua Dowling. He is everything that was written about him, very smart, knows his field well, 2nd in command in the department, and has done more TN surgeries than anyone in St. Louis. Guess what, remember that sheet of paper the other doctor gave me with the name she recommended for the surgery…I was about to shred it and turned it over and the name was Dr. Joshua Dowling. I closed my eyes and prayed to God, you are my savior, you have led me to this person, he will do the surgery and I will have no reasons to worry because you, my lord and savior will be with me all the way. Unbelievably, when I announced to Ms. Doctor she became upset with me and told me I couldn’t have the surgery and that nobody was going to do surgery on me because I had too many problems. She growled this at me in anger and I heard myself say “Bitch has lost her mind!” and I walked out. My brain scan came first and then my visit with Dr. J. Julia, he say’s, did you no you has a brain tumor?? So many times I had asked Ms.Doctor if I could have a scan done and she repeatedly said it was not necessary, too expensive. I also asked to have blood testing done to check and see if the medication was having an effect on my organs since I was taking so much but she always said no. I also suffer with 2 stage kidney disease. I had the Microvascular Decompression surgery in Oct. 2016 and it has been great…no more electrical like episodes. But last year 2018 I began to have a nerve reacting in my lower jaw. Felt like a tooth ache. So I had the Rhyzotmy done. There is some uncomfortable numbness that you just have to gets use to and although the face does not appear to be sunk in the face lays closer to the mouth so that if you’re not paying close attention you can bite down on your gums. It’s something you have to get use to. I don’t no about any one else, but I’ll take the numbness over the pain any day. So I still get my Botox treatments for the facial movement and that’s ok with me since I am now 70 years old and I don’t have any wrinkles!!! I hope my little story can help you in some way. I truly believe if you have faith in God he will led you to the help you need. Just ask him…he answers all prays
Julia

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Hello Julia,

Loved your story and thank you for your reply!
Have had TN on and off for well over 10 years. It has been mostly under control with oxcarbazepimine first, then carbazepimine 400 mg twice x day. Now, added gabapentin to get needed relief from this madness, and it is hardly working. Have brutal pain episodes during the day. A hot water bottle over the left side of the face brings me relief from this madness. This Wednesday I will see my beloved Neurosurgeon in Massachusetts, Dr. Bruce Cook, I call him Mr. wonderful and decide on a plan forward, Knowing his conservative style, he will probably say neurectomy before Total Sensory Rhyzotomy. Nothing is working for me very long.

I have not been able to work for a week. I simply cannot speak, eat or drink much.
Good thing that I am almost 64. I was planning to quit work at 65. It may be sooner the way it is going. We will see what happens this Wednesday with the neurosurgeon and go forward. Sensing Short Term Disability May be a Segway to retirement.

As far as the faith part, I lost it long ago. I am very angry and just walked away from it. Perhaps, it is time to rethink. A big virtual hug to you!

Sergio

Sergio, you already no what I’m going to say. So I’ll say it anyway. Do let go of your faith, please don’t. Set down for a minute, get very quite and still and let your pain be pain but let your mind feel what you no is faith. Feel God near you, he’s there. Talk with him, tell him you need him. Sergio, God was my total strength throughout my whole ordeal. He brought me through the hell and I no it can be that way for you. Besides, it gives you something else to think about, you no.Have you had the MVD surgery? You no I watched to procedure on you tube, maybe 6 or 7 times. So I had a very good idea what they were going to do. Before the surgery I was taking oxcarb but after I didn’t need any medicine at all. The doctor was so surprised and thought I should take it just in case. But I never did. You no when I got to the hospital the nurses kept coming into my room and they would ask me over and over , what was my name? who was the president? did I no where I was? After maybe the fifth time I lost it. This is me: hey look I no who, what and where, ok I’m beginning to think you don’t no, what and where. Now don’t come back until it’s time to take me to surgery, ok! I was sooooo ready, no fear, no fear.When I awoke from surgery, I looked around the room and I said, ok where are you. I no you’re here. Thank you Jesus, thanks so much. Good luck with your doctor visit and stay strong. It will all get better,
Julia

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Hi Julia,

Thank you for your reply. Yes, I had the MVD many years ago. It gave me 18 months of total relief, then the pain returned because nerves regenerate. I had the gamma knife radiation treatment, got some relief for I do not know how long, then the same. Pain returned. I di have to say that although the pain did return, it was with less intensity. But, it is not possible to function when dealing with quasi constant facial shocks. The glycerol was wonderful for 14 months. Going to the Neurosurgeon with determination to get past this stagnation. Very hard to do anything.
Hoping to avoid the Total Sensory Rhyzotomy for now. We will see.

I have no fear of whatever may happen next.

All the best,

Sergio

This is a excellent procedure with a high level of success. I highly recommend it. It’s one of the best if not the best treatments for TN cure.

Thank you Lukas!
I presume you had the procedure? If so, can you please share your experience Post surgery? I remain a bit frightened. I did discuss the procedure with my neurosurgeon recently. This will remain a very last option. He put me on Trileptal, 3 pills x day and it is working well. I am pain free but I also know it will return at some point. The Neurosurgeon did say I may disconnect the pain with the surgery but may create other problems. He did not elaborate and I did not pursue further.

Can you please describe How you feel months after surgery? Any complications?
Thank you.
Sergio