Results tagged “Trigeminal_Neuralgia” from Mrs. Happy Housewife

Mail Call: Trigeminal Neuralgia

Mrs. Happy Housewife

on February 16, 2010 9:31 AM | Permalink

I'll be frank here: I am the world's worst correspondent. Honestly, my closest relatives have to call me to find out if I received their important emails. And don't ask the age of that lovely stack of unused stationery on my desk.

However, even a broken clock is right twice a day.

Below is a recent comment from a visitor and I'd like to respond in a new post because I have had many visitors lately with Trigeminal Neuralgia.

Dear Mrs. Happy Housewife,

A friend of mine found your website while she was searching the web to find out what Trigeminal Neuralgia is. I too have TN and under went MVD surgery on July 1, 2009. I have to tell you that my surgeon did a much better job at sewing me back up. I can hardly look at your picture, but I am very squeamish. It has been just over 6 months since my surgery and I am having some re-occurring pain after being almost completely pain free during the month or so prior. It's been devastating to say the least. Tears came to my eyes when my friend told me about your website. As you probably know, it's difficult to explain this condition. It would be wonderful to have someone to share with. I've started the rounds of doctor's appointments and scheduled MRIs.

I hope that you are recovering quickly. It takes some time so be kind to yourself and take it easy. If you're anything like me, I couldn't touch the "hole" for months (for those who don't know...it's covered by a metal plate, but there is an indention under the scalp). It just freaked me out. Now I'm an old pro at it. My hair has grown out a few inches and with my other hair down (which is also long), no one can tell that anything ever happened.

I'll keep you in my prayers!

Sincerely,

TNFriend

Dear TNFriend,

Thank you so much for your comment. It is wonderful to hear from another Trigeminal Neuralgia patient. I hope you are currently doing better than when you wrote me.

It is now a little over three months since my surgery. I know my scar photo was rather gross, but what looked so terrible was mostly surgical glue. The scar is much better and less Dr. Frankenstein now. It's also very smooth. My hair, like yours, covers the scar and the indentation in my skull. I don't touch the area because doing so makes my ear ache. As for the rest of my recovery, I feel normal again, though I don't have as much energy and it's unpleasant to hang my head down. I'm certainly not as afraid now of brain surgery. I feel a bit like a wine bottle with a popped cork.

I am so sorry to hear that you are not painfree, especially since this is a most horrible pain we live with. And it is terrible to have your hopes dashed when you expect the surgery to cure you. As to the success of my Microvascular Decompression: practically none. I'd say none at all, but, truly, I can eat and smile and laugh with a bit less pain than before my surgery. I think I have had far less improvement than most patients of MVD because of the fact that my trigeminal nerve was not in a typical situation for this problem.

As to side effects of the surgery: the attempt to deaden the nerve a little means I often use eye drops in my left eye and for a while I heard a frequent ticking noise in my head; now, I sometimes hear a roaring (like the sea) in my left ear. I've been told that healing can last more than six months. My surgeon has suggested that we try Stereotactic Radiation Therapy, but I am still waiting to see if I have any more improvement - to the chagrin of my husband who would like me to stop hurting.

I'd love to hear from you again. I'm also on Twitter, if you'd like to chat there. Thank you for taking the time to leave me a comment and I appreciate your prayers. You are in my prayers also.

Blessings,

Mrs. Happy Housewife

'Ello, 'Ello

Mrs. Happy Housewife

on November 14, 2009 2:05 PM | Permalink

This is my first time back on my computer since my surgery. I am still in great pain and am waiting to decide whether the surgery was worth the agony. I spent four, unpleasant days in the hospital. Since coming home, I have spent most of my time sleeping or watching TV. I haven't felt well enough to even read. The family has doted on me greatly and I have enjoyed having my husband home with me all these days.

The surgery was harder than I expected. After opening me up, my neurosurgeon was surprised to find my arachnoid membrane to be opaque and discovered that my trigeminal nerve was surrounded by scar tissue. It appears I must have had Meningitis as a child. The surgeon said it looked as though glue had been squirted all around. He removed the scar tissue and separated the trigeminal nerve. He also sectioned the nerve to cause numbing so that I won't received so many pain signals.

Right now, I have the pain from the trigeminal neuralgia and the surgical pain, as well. My jaw keeps popping out of place. My numb eye leaks and needs eye drops. It's difficult to open my mouth to eat. I have to be careful when I swallow because part of my throat is numb also.

I do feel a tiny bit better each day and hope I will eventually think this was all worth it.

My surgical tape fell off yesterday and we all got our first look at my wound:

D said it looks like she sewed me up (and she didn't mean that as a complement) and S cried for the first time of this whole ordeal. The one good thing I can say is that my long thick hair covers the wound perfectly. With my hair down, no one can tell I was a patient of Dr. Frankenstein.

Another good thing is that I received three bouquets of lovely flowers and that many kind people have called to see how I am.

I hope I will be able to return to my blog more and that my health will continue to improve.

Thank you all for your kind thoughts and prayers.

The "Suicide" Disease

Mrs. Happy Housewife

on October 23, 2009 6:46 AM | Permalink

Next Friday, I'll have a surgeon cutting a hole in my skull.

In October 2004, I went to the dentist for a root canal and ever since I've had a condition called trigeminal neuralgia (TN), a neuropathic disorder of the trigeminal facial nerve which causes "stabbing, mind-numbing, electric shock-like pain". For a long time, we had no idea what was wrong with me. I had three dental surgeries and a molar pulled before I decided the pain was not going to be helped by dentistry. Apparently, this is common amongst TN patients. After seeing many doctors, including an otolarynologist, I finally made it to a neurologist who quickly gave my pain a name.

I was happy to learn that TN is considered one of the most painful diseases to have; now, I didn't feel like such a wimp for feeling so bad. For five years it has hurt to brush my hair, brush my teeth, wash my face, eat, smile, laugh, live. TN is called the "Suicide" disease because so many with the disorder end up killing themselves. As I type this, it feels like a screwdriver is being jammed into my left ear - and I've only just woken. I lightly scratch an itch above my lip and the pain spreads there. As the day progresses, the pain will spread and get worse.

My neurologist is using the typical treatment for TN: anticonvulsants and opiates. Unfortunately, it is difficult to have a good life with these medications, especially in the large doses I'm prescribed. I have also gotten to the point where the opiates no longer control the pain. I have to take another option: Microvascular decompression.

So, next Friday, my surgeon, one of the best in the world, will cut a small hole in my skull behind my left ear and attempt to isolate the trigeminal nerve. If it appears that isolation is not going to be helpful, the surgeon will damage the nerve.

Patients are put to sleep using general anesthesia and are positioned on their back with their head turned or on their side with the symptomatic side facing up. Electrical monitoring of facial function and hearing is used. A straight incision is made two finger breadths behind the ear about the length of the ear. A portion of the skull the size of a half-dollar is removed exposing the underlying brain covering known as the dura. The dura is opened to expose the cerebellum. The cerebellum is allowed to fall out of the way exposing the side of the brain stem. Using a microscope and micro-instruments, the arachnoid membrane is dissected allowing visualization of the 8th, 7th and finally the trigeminal nerve. The offending loop of blood vessel is then mobilized. Frequently a groove or indentation is seen in the nerve where the offending vessel was in contact with the nerve. Less often the nerve is thin and pale. Once the vessel is mobilized a sponge like material is placed between the nerve and the offending blood vessel to prevent the vessel from returning to its native position.
After the decompression is complete, the wound is flushed clean with saline solution. The dura is sewn closed. The skull is reconstructed and the overlying tissues are closed in multiple layers. The patient is allowed to wake up and is taken to an intensive care unit or other close observation unit.

Here is a three-minute TV news report explaining TN:

For those with strong stomachs, here is a minute and a half video of the microvascular decompression:

I'm quite nervous about the surgery. I don't like surgeries at all and just had one a few months ago for my gall bladder. I seem to be trying to see how many surgeries I can have this year. The gall bladder removal was a very simple, common surgery; this one involves opening my skull. That frightens me and I'd really appreciate your prayers.