Sudden Onset of TN
Posted , 4 users are following.
after years of bein on Oxcarbamezapine and Lamotrigine I have suddenly started having spikes of pain quite regularly. Have one now affecting my jaw and eye on my right side. The MRI I had to confirm that I have this condition showed that a blood vessel was wrapped around my TN nerve. I have had the glycerol procedure almost 4 years ago and my neurologist who has seen me regularly said to me last year that he felt there was no need to see me until I agreed to have the MVD procedure. I am quite wary to have it due to all thr risks, albeit I am 64 I have a great life, 3 adorable grandchildren all under the age of 3 and I do not want to jeopardise my life and that of my Loving family and devoted husband. Any advice greatly welcome.
1 like, 4 replies
mallory22442 sharon33606
Posted
That has to be determined by your degree of pain. My pain was so horrific that I couldn't have enjoyed any part of my life. If the pain is not debilitating for you then I understand holding off until it reaches a level you cannot tolerate. I went to Mayo Clinic in Rochester, Mn. 10 months ago and have done great with the MVD surgery so far. Perhaps you will as well . I do hope so !!!!!! Mallory
esther48415 sharon33606
Posted
Hi Sharon,
The way I understand this is that there is a physical rubbing of the vessels on the nerve wearing away the fatty sheath surrounding the nerve. Sometimes medication helps for awhile, but it stops when the covering is too worn away. Check with your doctor to confirm my understanding. As far as TN goes, you are in the, and I say this in quotes 'fortunate' population; that is there is a very clearly identifyable lesion causing your issues. This is a plus as far as when it comes to the MVD surgery it is one indicator (of several) for a more positive outcome.
You alone have to make the decision as to whether or not to have surgery. There are many things to consider; your health in general; do you have any conditions/histiory that would increase surgicl risks? The intensity and frequency of your episodes, as in how will they affect your quality of life?
There are questions about the hospital and surgeon. Positive outcome for a particular surgery is improved if the doctor has performed many of these types of surgeries. The hospitals as well- do they regularly handle high risk neurosurgery; not that this is extremely high risk as it is elective and planned; the area of the brain is close to the skull, but the support staff who handle lots of neuro cases have a lot of experience.
My daughter had a sudden onset of pain in February. The medications made her tired; she did not want to face a lifetime on medication (only to be offered surgery when they no longer worked)- so when a highly experienced surgeon (1,000 MVD and 1,000 rhyzotiomies) told her she'd have a 90% chance of a positive and durable outcome she oped for surgery in May. So far, pu pu pu, as my mother would say, she is doing well. The hospital had a specific Neurology ICU where she was scheduled to spend the first night after surgery with 1:1 nursing.
doing regular neuro checks. The care was outstanding.
One of the risks of this surgery is hearing loss. Our surgeon used a technique where ear buds were placed in her ears- sound was played during the critical parts and a sensor was placed on her scalp- the type used to measure brain wave activity. He said that using this set-up greatly reduced the incidence of hearing loss.
Sixty-four is young these days! You have a lot to live for and a lot to think about. It is intelligent to be wary. What I'm saying is that there are some factors you can control and some that you can't. Good luck!
sharon33606 esther48415
Posted
Dear Esther, thank you so much for your comprehensive response. You have been very encouraging. I have been on holiday so do apologise for delay in responding. I am going to ask for another consultation with my neurologist and request to meet the surgeon who would perform the surgery and explore all pros and cons. Met a lady on my holiday who had the MVD procedure over 10 years ago which gave an excellent result, having no issues in all that time, just suffered initial setbacks from the procedure, mainly having to learn to walk properly afterwards. Don't know if anyone has heard that before? The other thing which is a bit concerning is that after 10 years TN has resumed with a vengeance and she is now back on intensive medication. A bit disconcerting to hear.
Also appreciate Geoffrey's comment on the Balloon procedure. Will mention that to my neurologist too and see what is said. I live in Scotland, however the surgeons I am aware of have trained elsewhere.
geoffrey35113 sharon33606
Posted
I have been trying for ages to encourage people with trigeminal neuralgia to get the balloon procedure. I suffered from tga for years and, although had a few months remission 5 years ago, I took 6 tablets per day which still did not completely control the pain. Just over a year ago I contacted a specialist, Dr Danks, in Melbourne who carried out the balloon procedure. The result has been successful with no pain whatsover. Initially there was numbness in my right jaw but this has long gone. All fellow sufferers should investigate the balloon procedure. There are many useless specialists in the market who have no clue when it comes to helping sufferers and therefore just prescribe medication. I could name quite a few but I won't. Dr Danks is the only specialist I would reecommend but there are probably others.