My new adventure (ie where did I go this time?)

[Acert93]

So, where did I go now?

We did a big move this fall (into a house) but that isn't the big news.

The big news is I have been ill for a while. I don't know how many doctors I have seen since having a week long "pain attack" in my face in December but after seeing a Neurosurgeon 2 weeks ago this is what the conclusion is:

I have Trigeminal Neuralgia (TN): http://en.wikipedia.org/wiki/Trigeminal_neuralgia

Trigeminal neuralgia (TN), tic douloureux[1] (also known as prosopalgia[2], the Suicide Disease[3] or Fothergill’s disease[4]) is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. One, two, or all three branches of the nerve may be affected. It is, "one of the most painful conditions known to humans, yet remains an enigma to many health professionals."[5] This pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, and/or jaw and side of the face; some patients also experience pain in their left index finger.[6] Trigeminal neuralgia (TN) is not easily controlled and there is no cure.[7] It is estimated that 1 in 15,000 people suffer from trigeminal neuralgia, although the actual figure may be significantly higher due to frequent misdiagnosis. In a majority of cases, TN symptoms begin appearing after the age of 50, although there have been cases with patients being as young as three years of age. It is more common in females than males.

The surgeon is recommending I undergo Microvascular Decompression (MVD): http://en.wikipedia.org/wiki/Microvascular_decompression

Patients are put to sleep using general anaesthesia 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 fingerbreaths 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 brainstem. 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.

I spent 10 weeks on Carbamazepine for the pain (made me dumb, confused, dizzy, extremely fatigued, no short term memory) and finally cycled off. The fact Carbamazepine worked was a strong indicator for TN but further tests have ruled out everything else. The pain is slowly returning so it looks like I will be scheduling brain surgery sometime this year. I will be out of work for a month, possibly two if there are complications (things I want to avoid: hearing loss, CSF leak, death).

The good news is I don't have a brain tumor, aneurysm, or any strong indicators for MS yet. My life expectancy is also not cut short. On the other hand... ouch. The pain is unbelievable. I am thankful my current job has excellent insurance (after a bazillion Xrays, MRI, and a dozen doctor visits I have only spent $200 total). My employer is very supportive (they feel lucky just to have me at the company... good thing I didn't slack the last 2 years!) and my wife is great. So this isn't all that bad ... just frustrating. I am almost finished with all my degree work but the last bit is on hold until, well, I figure out what I am going to do. It feels soooo good to be off the meds, but the pains that are returning, while not as bad as in December, are painful. Like a really bad tooth ache in my cheek and jaw. The good news is the dentist didn't start ripping teeth out.

Ok, so maybe you will see me in 2012? I hope I am back on my feet for BF3

 

[digitalwanderer]

Ouch! Sorry to hear, hope things go well/get better. How's the family dealing with it?

 

[Acert93]

They are doing really well. The kids probably appreciated how mellow I was during all the stress. The hard parts were work and after the kids went to bed I was so wasted all I could do was sit down and zone. The big hurdle has been reading and writing has been a worthless exercise for months. Kind of hard to do research papers when you cannot remember the last sentence you read. I even got lost one day going home. That was probably the hard part for everyone... I was a useless bum!

 

[Scott_Arm]

All the best to you Josh. I know you'll pull through with flying colours. See you on xbox live.

 

[Squilliam]

All the best to you Josh, or the artist formely known as Acert93. I hope to have you around for when the time comes to make the Predict: The Next Next Generation Console Tech thread because that honour should be all yours.

I hope you're not sleepless in Seattle mate.

 

[Bouncing Zabaglione Bros.]

Sorry to hear this, and hope you are getting better. Strangely enough I read an article on this at the BBC website a few months back. It's a very little identified problem, and there's only about one surgeon in the UK doing these operations. People stay in agony for years, as it is usually very poorly diagnosed, so you're lucky your doctors picked up on it at all even though you had to see a load of doctors. It seems for most sufferers they have an artery pressing against a major nerve, and that's where the pain comes from.

 

[Bludd]

Damn, man. I feel for you. I hope that surgery can help alleviate some of the pain. What are the side effects of the operation?

 

[Grall]

Lame thing to say I know, but, damn... That sucks. I hope you will be helped soon by the procedure, and that all turns out well. Good luck, welcome back and stuff!

 

[Dresden]

Someone very close to me also has Trigeminal Neuralgia. I wish you a speedy recovery, Joshua, and hope to see you back, in no time.

 

[Sxotty]

Since your quotes say there is no cure what does the treatment do? I mean it seems cutting into your brain is a big deal. Does it just temporarily solve it? Anyway good luck.

 

[zed]

Bummer man, perhaps you can look into marajuana to alleviate the pain symptoms

 

[digitalwanderer]

Kind of hard to do research papers when you cannot remember the last sentence you read. I even got lost one day going home. That was probably the hard part for everyone... I was a useless bum!

Make lots of notes, helps me. I also find following routines helps. (I have a LOT of experience with both short term memory sucking AND being a useless bum. )

Best of luck buddy, hang tough.

 

[Squilliam]

Make lots of notes, helps me. I also find following routines helps. (I have a LOT of experience with both short term memory sucking AND being a useless bum. )

Best of luck buddy, hang tough.

Doubly ditto and double the best of luck since I have already said it. I know somewhat of what it feels like to have funny face as I used to get bad sinus migraines and all about the memory loss and being a useless bum.

 

[Acert93]

Thanks everyone.

Since your quotes say there is no cure what does the treatment do? I mean it seems cutting into your brain is a big deal. Does it just temporarily solve it? Anyway good luck.

For over 100 years it was noticed that people with TN stastically had more occurances of blood vessel(s) compressing the Trigeminal Nerve (the largest of the cranial nerves) in the brain. While not every person with compression has TN, or every case of TN caused by such, the correlation resulted to a doctor (Dr. Janneta iirc) in the 1960's introducing a procedure to put a cushion / pillow between the nerve and offending blood vessel(s). This allieved almost 70% of people from all pain and another 15% were relatively pain free. His study published in 1996 showed that 10 years post operation a high percentage were still pain free. In the time since doctors have made the proceedure more effective with fewer risks (e.g. hearing loss was reduced from 3% of cases to 1%).

There is now a general consensus that many cases of TN are caused by compression. And while there is no absolute cure, in many cases surgery will alleviate the pain with a good prognosis if being pain free 10+ years out. It seems the more time goes on the more likely pain is to return but it is almost universally agreed getting a handful of pain free years is worth it. Less agreed is that microvascular compression is related to pulsating tinnitis (which I also now have along with dizziness and some visual blurring in the affected side) although it does seem to occur.

The good news in all of this is the next time someone disagrees with one of my innane console thread posts and inquires about possible holes in my head I can forward a picture confirming their assumption And when I forget to take out the garbage? I can show my wife exactly where that thought slipped out of my head

 

[Silent_Buddha]

Wishing you all the best mate. I've been living with near constant pain for over 2 decades now (unrelated to this, all from other injuries), but it's manageable in a way that it sounds like this isn't. So I can't imagine what it must be like for you.

Regards,
SB

 

[Squilliam]

Wishing you all the best mate. I've been living with near constant pain for over 2 decades now (unrelated to this, all from other injuries), but it's manageable in a way that it sounds like this isn't. So I can't imagine what it must be like for you.

Regards,
SB

Is that part of the reason why you're the Silent Buddha? Im sorry to hear about that. I remember my friend spoke up about chronic pain and I slapped her (lightly) because I got pissed off she was living in pain without doing or saying anything for many years, I was peeved!

 

[Sonic]

Hey Joshua, best of luck to you and the operation. The operation sounds pretty gruesome what with cutting through your nerves and all. Does the surgery damage any parts of the brain in a permanent way? It's tough being in so much pain and still being a trooper about it and for that I have the utmost respect and admiration for you. You're an awesome poster and can't wait to have you back on these forums active, especially when next gen is just around the corner.

 

[DuckThor Evil]

I hope everything turns out well, or atleast better. I did notice that you hadn't posted for a while, but compared to some of your past "Joshua is missing" periods, this was still relatively short. Hopefully we get to enjoy many more of your long and high quality posts.

 

[John Reynolds]

Good luck to you, hope the procedure goes smoothly and alleviates that pain.

 

[Tahir2]

Here's to a successful op and speedy recovery.. wishing you all the best.