Trigeminal Nerve... Answering a Comment

This post in in response to a comment left by Kristen:

hi, i just read your post....was wondering if your nerve healed back to normal.

Thanks for the inquiry, Kristen.

I will admit that I don't think too much about the trigeminal nerve any more taking the lead from my doctors who all think it is nothing in comparison to the other things I am dealing with. (I don't disagree but I also hate having some of these nagging little things out there that they won't deal with because of the "bigger fish to fry".)

Anyway, I have been taking Neurontin to keep the nerve from hurting with the "windburnt" feeling I had in the beginning. Therefore, it is very difficult to say for sure if it has healed fully or not. I still ocassionally get the numb feeling and my right eye still goes through major bouts of dryness, which are all issues I had in the beginning with the nerve. Therefore I am guessing it is still there and not really back to normal. With the assistance of the medication, it feels more normal but it has its days when it isn't.

I hope I was able to answer your question, Kristen!

I am Making a List

... and checking it twice but it's not to find out who's naughty and nice. :) Ok, so I'm in a bit better mood today than I was yesterday. This is surprising since I have such a sinus headache I've barely been able to see straight all day. For as long as I can remember I have suffered from Sinus infections and usually I just shrug them off an eventually get medication if I can't defeat it. However, my trigeminal is keeping me on my toes with this one. You see, it goes through phases where some times it is numb on the right side and other times it is heightened sensitivity. Therefore, there are times that the sinus pressure causes such a headache I can barely see and other times I can't even feel my nose let alone my sinus. Oh well, it's keeping me honest at least.

Ok, back on target. I've been working most of the day to make sure I have all the paperwork I can think of to take with me to Chicago on Friday. I've got copies of my medical records, a sheet that has all of my medical information summarized to give the doctor, three pages of questions to go over with him, all my medical cards that need to be given to them, my medical journal for going over anything that may be suspicious, and my calendar of dates so that I make sure and give all the right information to them. They will probably think I've decided to bring in a small filing cabinet with me but in reality it's a big help to have everything in one place and sorted out. It makes me feel like I have control over at least a little bit.

Anyway, I have a list of five general questions for him. (Similar ones that I asked my local NS but I have refined them.) I also have eleven general questions and seventeen "dependent" questions for him about Gamma Knife. Of course, none of these will matter if it is determined that I'm not a candidate, but I have them just in case. I also have a list of questions about a biopsy if it should happen that it is going to be required before they consider Gamma Knife an option.

It will be a long and tough decision if they tell me that they won't give me an answer without the biopsy. My biggest question, if they tell me it is a requirement, is what will it change? If there is no difference in what they can and will do, why bother with a test worse than the danged procedure? I realize that they want to know the exact details of my tumor. What they have to realize is that I don't give a dang what type of tumor it is. It's an object in my head that doesn't belong and may possibly some time in my life cause me problems... but it isn't right now. That's all I really care about. When the time comes that it starts giving me problems, then invasive tests may be in my list of options. For now, I really don't care what is in there as long as it stays put and doesn't try to grow. All I can see the biopsy as right now is an excuse to try to talk me into other procedures and they have to realize there IS NO SUCH THING AS OTHER PROCEDURES RIGHT NOW!!!

So you can see that I may have some battles before me even if the news is favorable on Friday. Will I decide to agree on the biopsy if it is a requirement? I can't honestly answer that right now but I will tell you that it will take a very good argument from them to convince me of it and A LOT of soul searching. I don't believe in unnecessary tests... especially ones that require more than a simple blood test. If the test doesn't clearly benefit the outcome, what is its purpose? They just have to remember that Gamma Knife is THEIR only option right now, regardless of what a biopsy shows or what they suspect it may be in change.

Ok, time to shut my mind off so I can get to sleep. Night

First Sinus Infection of Fall?

Well, it seems I'm coming down with my first sinus infection of the year. Monday I could feel the "tickling" sensation up in my sinus and yesterday the complete and total fatigue came along with it. Today, there is definitely pressure in there but I'm not exactly sure what all is going on. See, I still can't feel anything consistently on the right side of my face and that is typically the side that "stuffs" up first. I don't think I'm clogged yet but I'm not really certain. I was really hoping that the numbness would be gone by the time this time of the year rolled around just so I didn't get into this scenario.

Anyway, I'm taking my nasocort religiously and I started on a bit of dayquil to go along with it. I went home early yesterday and slept about three hours in the afternoon. That helped tremendously as well. Tonight I will probably go to bed early, with my good ole vaporizer and hopefully I can kick this thing out before it takes too big of a hold.

I love October. I hate allergies. I hate Sinus Infections. I love October. Ironic isn't it?

My Trigeminal Nerve is Healing

The injury that started the process of the now infamous MRI was to the fifth cranial nerve which is also known as the trigeminal nerve. It was the complete numbness on the right side of my face caused by the nerve that prompted me to begin the process that led to the discovery of my tumor. Now when I say complete numbness, I am very serious. If you were to cut my head in half, right down the middle of my nose, the entire right part would be numb. This includes my nose, mouth, eye, and tongue! (Believe me on the mouth and tongue part. It is no fun to eat half a bowl of chili thinking it is plenty cool only to "put the food in the other side" for one bite and realize it had been burning your mouth.)

Now, just to look at me, you would never know that I was having problems. Regardless of how funny it felt to me, from the outside I appear/appeared normal. This is perhaps the part that most perplexed my doctors because this typically appears with "pain" and shows minor signs of palsy or drooping. Leave it to me to be different yet again!

For six weeks I had this complete numbness with no signs of it letting off. Finally, about four weeks ago, I started getting my first signs of healing. (I have been heard joking that it just needed a little adrenaline rush to get started.) What were the signs? A tingling sensation usually around the edges of my nose, mouth, and eye. Although very annoying, I reminded myself that this was a good sign in the long run and it meant it was healing. Luckily that feeling was easy to maintain because it would only occur every few hours for a few minutes at a time so other than a few annoying "itches" it was no big deal.

A week ago that changed. I had noticed the "tingling" gradually changing and happening more frequently but it was never more apparent than when it nearly brought me to tears on the 13th of September. No longer was it an annoying tingling, now it was more of an intense burning. The only thing I can really compare it too is a case of REALLY bad chapped lips or windburn spread over the entire right side of your face. It was extremely intense and ibuprophen was just barely taking the edge off of it. (Ok, so four ibuprophen would almost take the edge off.)

So I called my neurologist (not to be confused with my neurosurgeon) and he called me in a prescription for Gabapentin to try to ease the pain. All I can say is that it is working great!!! Over the past week I have had spells where my face almost feels normal (or at least what I remember normal to be.) I do have occasional "break-through" burning but it is manageable. The numbing is mostly still present but now it's in various degrees of intensity.

Personally, I can handle all of this because I know it's a sign of healing. I just really look forward to the day this finally goes away because, although not related, it's a constant reminder that I'm dealing with something major inside my head.