How TN confuses family and friends...

 Over the years, friends/family/well-wishing people/or just confused people have said some statements that highlighted their lack of understanding of TN. I'll try to summarize them here: 

• Have you had your teeth looked at?
• How's your jaw pain? 
• How's your headaches?
• Have you tried essential oils?
• I've had pains like that before
• Isn't it about time you outgrew that? 
• ...18 years into the illness "What's wrong?"
• You should try "Hospital (Whatever) - they're the BEST!"
• Have you tried (insert any medication name here)
• You seem quiet
• You're still out of work? wow
• My friend takes (whatever medication) and says it works GREAT for him
• It's probably stress
• Maybe it's the iced tea that you drink
• You have TN now? oh it's because you were so stressed out last month (or whenever)
•  Maybe THIS surgery will actually work
• There must be something they can do
• These doctor's really need to get on the ball
  

There are SO many more! I'll add them when I think of them.

Fighting Hard...

This recent recurrence of TN has been by far the hardest to stop. I am getting absolutely obliterated.  

I had RadioFrequency Rhizotomy + Glycerol surgery on 11/12/20. Unfortunately, I left with more problems than I entered with. I, obviously, never expected this to occur. 

My prior surgeries with the amazing Dr. Ronald Brisman were so successful. He was able to stop TN and get me back to work in days. This time I went to Johns Hopkins because the amazing Dr. Brisman passed away. (Rest in peace and all my gratitude)

When I walked into the surgery, I had been having intermittent severe stabbing/shocking TN pains. I still have those but now I have 10 minute timeframes in which it is nonstop. Imagine the pattern of a throb but imagine the throb has the worst pain known to man, over and over. TN now brings me to the floor which it didn't always do prior to surgery. 

My doctors are trying everything possible to stop this. I feel like I have half of CVS in my medicine cabinet at this point due to the trial/fail/switch of meds. I'm SO grateful that I have doctors who are willing to fight this battle with me. I can imagine that it is as frustrating for them as it is for me when plans don't work. 

I've been hospitalized 4 times since 9/14. Two were in-patient stays, one was ER by ambulance and the other was ER with observation. These were all related to TN as well as compounded by electrolyte disturbances and tremor/coordination impacts. TN pain impairs my ability to eat/drink so significantly that my nutritional balance suffers.

I'm still fighting the good fight. Much love to all of the TN warriors out there. I'm right there with you.

Fighting TN again...

    A quick update since my last post. I had a really great result from my last rhizotomy - even despite the fact that the surgeon was unable to burn the nerve at the source. The hematoma likely injured the nerve indirectly and then the pain stopped as a result. 

    Unfortunately, in May of 2020, the pain returned. We were able to get it under control via dilantin 3x daily. Then I weaned off the Dilantin once it had been calm for some time. Then again, it returned...this time even worse than the last.

    Currently, I am experiencing one of the most severe recurrences that I've had. We tried adding Dilantin again but it had no impact on the TN itself. It just made my body start mildly trembling and then some bigger tremor. We weaned off the Dilantin again and the TN is spiraling into great intensity. 

    I'll talk to my new surgeon today and see if he thinks he can help. My previous surgeon was one of the most tremendously talented people that I've ever known. He lived a long life and helped so many people. He passed away this year but sent all of my records to his son - who is also a neurosurgeon. I pray that his son can help me with getting my life back. 

    I'm trying to be strong and hoping for the best. I'll update whenever anything changes. 

Finding hope amidst chronic suffering

I've had some time recently to contemplate how to find hope amidst chronic suffering. The picture of life within trigeminal neuralgia is a very tough one. It is ridden with isolation. In particular, the isolation comes from the fact that you can't speak and other people don't understand what's happening during episodes.

Trigeminal neuralgia is also ridden with physical pain. The unexpected blasts of a taser-like feeling to the face are especially impactful when you are having a great moment. Sometimes when I'm laughing about something, a TN episode will interrupt and take away my joy. I have learned to take back those moments by recovering as quickly as I can. However, the effort to do so is exhausting... it gets old fast.

What I'm contemplating now is that maybe you need a "picture" of your life that is so great that it exceeds the extreme suffering "picture" that comes with TN. For example, having a life mission that truly motivates you may help you to feel the desire to get out of bed. Having a cause or a mission to use your time and efforts within may be the solution to losing your desire to fight for your life.

TN will take your quality of life away, but maybe you can take it back every chance that you get. I believe that the "picture" that you create in your mind of the life that you want to live - the life that TRULY makes you feel joy is the solution to hope, where there otherwise is none.

Radiofrequency Rhizotomy Surgery with Complications - yet it worked

Yesterday I had radiofrequency rhizotomy as planned. What I did not expect is the complication of a hematoma on my cheek. I went into the surgery and everything seemed mostly normal compared to the times prior.

When I woke up from anesthesia, the doctor was holding my cheek. He said, "You're OK but we had to stop the procedure because of bleeding." I realized that my face was bleeding and my cheek was very swollen.

The pressure that he was holding on my face was causing my face to be pretty sore. Shortly after, I went into the recovery area and was extremely nauseous. Eventually, I got sick. My migraine was pretty intense at that point as well.

He said that during the procedure a vessel was unexpectedly punctured and caused the bleeding in my cheek. They did not want to proceed because they felt it was unsafe to do so. He said that I can try again in a month if the TN pain still continues from this point until then. But we need to give my face time to heal from the hematoma.

So basically I left NYC with a hematoma and without a TN burn via RF. But I'm going to continue attempting to remain positive in my thoughts. That's pretty much all that I can do while I wait. My doctor is an amazing, extremely qualified doctor who has done this procedure for me many times. This time, however, something just happened with the vessel and is a normal possible complication of RF.

Prayers are most welcome and very much appreciated while I heal and try to recover my mindset from this small setback.


**update - I haven't updated this blog in a while but I wanted to say that ironically - TN went away after this procedure. At the time of surgery, the neurologist told me "just give it some time - there is a chance that the secondary injury to the TN area may still have an affect." SHOCKINGLY - he was right! I made it all the way from the date of surgery (October 2018) until approximately May of 2020 without pain. I remained on medication throughout but it was pretty well controlled with medication alone during this time. The pain returned again in May 2020 but I'll update that in a later post.**

What does TN feel like?

The pain is blinding. Like being tasered in the face/tongue and every tooth while being stabbed. It isn't just a stabbing searing pain but it's combined with electrical shocks. The pain itself explodes through every single little nerve branch under all of my teeth. And it comes in waves and storms. It fires down the main nerve root in my jaw - this nerve path provides nerve communication for nearly every sensation in my face. My tongue, my chin, my jawline, all of my teeth. The stabs even go through my tongue!

After a severe pain episode, I look around and feel like I have lost all of my bearings. Because it is so blinding, and excruciating. I hide my pain well, usually. It's amazing how people will fill the space in a conversation sometimes and not even know that I am getting blasted with repeated blinding stabs and shocks. 

But sometimes I can't hide my reaction, and then my eyes instantly water, sometimes I cry, my face turns red, and I try my best to stay very, very still. In my case, the more I move my mouth the more it fires. This is also why it fires when I talk. 

But more than anything else, the worst thing about this disease, is now unpredictable and disruptive it is. I never know when it will fire and sometimes I have stabs and episodes nearly every 5-10 minutes all waking day long. 

I worry that I will be in some visible scenario when it decides to fire. Like a one-on-one meeting, or worse yet presenting to a crowd. Even worse, it is relentless and just waiting to strike.

Almost two years of relief from the last RF, but TN came back... again

I almost made it to two years roughly since the last TN procedure which was the radiofrequency rhizotomy. However, as to be expected I suppose, it's back. It started out with smaller less frequent episodes and now it's in full force. For some reason, I got a break today on my birthday (YAY!). It's also International Trigeminal Awareness Day today! 

I've tried increasing the meds but both my neurologist and neuro-pain specialist aren't comfortable increasing the doses of either trileptal or gabapentin. So, my alternative is surgery. I spoke with Dr. Brisman in NYC again and he suggested we repeat the RF procedure since it has been successful for me many times before. I feel good about the idea and it seems like it could give me some time at least without pain. 

I plan to document a little bit more detail about this upcoming RF surgery this time. Ideally, I'd like to include active day-of updates on my blog if the hospital will allow me to do so.

Love and support to all TN fighters and their families - especially on this day to honor everyone internationally. 

A simple introduction to understanding TN

Click Here to go to the Facial Pain Association's web page on: Understanding TN

Almost made it...

Well now it is 2016...one year and 2 months after my last radiofrequency rhizotomy. On my birthday, October 7th, TN came back... I could not believe it. My birthday??? Eh, well, This is how this disease works... so, initially the neurologist increased my medicine, trileptal, by one additional pill per day. This brought me to 1500 mg per day of trileptal to control TN. And it worked!...for a week and a half ugh!

So, mid-October, the pain started climbing... I saw the neuro-pain specialist in Chalfont and he recommended that we add a second anti-seizure med of Dilantin. However, this time it did not work. In previous recurrences of TN, Dilantin was the secret weapon. This left me feeling quite disappointed to say the least. Each day, the pain seemed to come in more frequent episodes, of increasing intensity.

Finally, after fighting the increasing pain for weeks, I called my neurosurgeon in NYC. He initially thought of recommending Gamma Knife surgery for TN. However, after more consideration, we agreed that another RadioFrequency rhizotomy was the better plan due to the high degree of pain that I am currently experiencing.

So, we scheduled a third RF Rhizotomy (also known as RF) for November 30th, 2016. In the meantime, the severe episodes are coming almost every 10 minutes. Triggers are: moving my tongue, touching my face, chewing, drinking, and talking. On 11/17, I asked the neurosurgeon if there is ANYTHING that I can do until surgery. He recommended that we try Neurontin.

So, today, 11/19, after two days of neurontin, I actually have some improvement! It's a small amount of improvement but just enough to help me feel some hope. I am talking a little more without severe episodes most hours of the day and I am getting some liquids down. I still can't eat, but I will take ANY improvement over none.

When I have my RF surgery on 11/30, I will update the blog with more information for anyone who might be interested in learning about this procedure and about the results.

Love and hope to all TN warriors... more to come!

And it all came crumbling down...

Right after my last post, my tn spiraled out of control. It went so fast... I had some tn occurring prior to my post but it significantly worsened. I saw my neurologist and he offered lyrica and prednisone. No luck. It faster spiraled. 

I saw a pain specialist/Neuro after that. He increased my Dilantin and shortly after I wasn't able to drive due to my side effects. 

As it continued to worsen significantly by day, I called my neurosurgeon in NYC (Neuro also recommended surgery). By the time I was there for my appointment, I was suffering from such severe side effects combined with TN. I had lost 10 pounds... Could barely even touch a glass or even a straw to my mouth. The surgeon examined me and agreed that it was time for surgery. He personally called the operating room scheduler to request the use of the room asap. Two days later, I was in for surgery. 

I want to pause here and describe more about what this pain is like. Prior to tn I was familiar with shooting pains, or migraines, stepped on a drinking glass with my foot once and it severed the entire underneath of my toe. Went through labor, and on and on. Nothing compares. And here is why:

The pain is blinding. It isn't just a pain but it's combined with electrical shocks. The pain itself explodes through every single little nerve branch under all of my teeth. And it comes in waves and storms. It fires down the main nerve root in my jaw - this nerve path provides nerve communication for nearly every sensation in my face. My tongue, my chin, my jawline, all of my teeth. The stabs even go through my tongue!

After a severe pain episode, I look around and feel like I have lost all of my bearings. Because it is so blinding, and excruciating. I hide my pain well, usually. It's amazing how people will fill the space in a conversation sometimes and not even know that I am getting blasted with repeated blinding stabs and shocks. 

But sometimes I can't hide my reaction, and then my eyes instantly water, sometimes I cry, my face turns red, and I try my best to stay very very still. In my case, the more I move my mouth, the more it fires. This is also why it fires when I talk. 

But more than anything else, the worst thing about this disease, is now unpredictable and disruptive it is. I never know when it will fire and sometimes I have stabs and episodes nearly every 5-10 minutes all waking day long. 

I worry that I will be in some visible scenario when it decides to fire. Like a one-on-one meeting, or worse yet presenting to a crowd. Even worse, it is relentless and just waiting to strike. 

Lots of updates... Radiofrequency Rhizotomy

Lots of updates! First, my pain didn't really resolve after the glycerol rhizotomy. It kept increasing month by month. Then, I became pregnant with my first child. I did everything possible to deal with the pain while I was pregnant. By the time my son was born, the TN nerve had become very active. My son was born in February 2013 and by December of 2013, I was fully and completely unable to eat, speak, drink water - the usual symptoms. It was so severe that I couldn't even smile at my 10 month old child. To me, that was a decision point to take more drastic action. I had become a prisoner inside my own body... I wanted to smile at my son whenever he smiled at me... and I couldn't. It was absolutely awful. I couldn't eat enough food so I was drinking my meals and even that was terribly painful. Tears would stream down from my eyes because of how painful that was emotionally. 

Finally, I found a doctor at Columbia University Medical named Ronald Brisman. My pain was so severe the day that I visited him. I remember walking through the streets of NY... I could barely speak to Dr. Brisman. Every word that I tried to say was interrupted with severe "lightning storms" of excruciating pain in my face. In words, it's kind of like this "Hi doctor" !BAM BAM BAM...BAM BAM BAM... silence (I move my tongue) BAM BAM BAM!

 On the day of surgery, I remember being so afraid that I was trembling on the operating table. Of course, I could barely speak to the nurses due to pain and that was part of my fear. Dr. Brisman came into the room and he could see how much I was struggling. He smiled at me and patted my shoulder and said it's going to be better soon. I felt nothing during surgery and I remember nothing from the surgery from that point on. The RadioFrequency Rhizotomy is done under twilight sedation, so I was afraid that I would remember something painful - but I didn't.

The pain did not resolve immediately after surgery... when I woke up and still felt pain, it was by far, the MOST devastating moment of my life. I felt like I had lost all hope for relief from this physical and emotional "prison" called trigeminal neuralgia. My entire family drove home from NY feeling very depressed. But of course, the only thing to do is to keep hope and keep thinking positive. I am pretty certain that I slept in the dark basement for 24 hours until I managed to pull myself together and face this again.

At that point, I called my pain management doctor - who is well versed in trigeminal neuralgia and even performs outpatient surgeries such as RF rhizotomy, etc. He prescribed dilantin on top of the trileptal that I was taking. About a week later, the pain silenced. It completely stopped... I barely wanted to "test" it by eating/drinking/brushing teeth, etc. But I gradually gained confidence in those activities and re-gained my entire life back. About a month later, I weaned off of the dilantin and still had no pain.

Flash forward... My trip to Chicago in May of 2015 - this was one year and 5 months after my radiofrequency rhizotomy. I had a series of migraines while in chicago. I think there were three, possibly four migraines in a week. Almost exactly when the plane landed to arrive at home, I felt very nauseous. I grabbed a granola bar from my bag and took a bite and WHAM - extreme trigeminal neuralgia hit. It paused, I took one more bite and WHAM. It was back. My neurologist quickly prescribed Dilantin again. It helped but not for long... after 3 months of dilantin it's creeping back again. It's hard not to be disappointed but there is still a DEEP gratefulness in my heart for the months and years that I was pain free. Every day is a good day when I don't have TN.

I have purposefully put on an extra 10 pounds just in case TN forces me to eat less during a spike. It probably seems to other people that I kiss my 2 and 1/2 year old son WAY too much, or that I am WAY too happy in my operations job which can be stressful... but it's all a gift compared to the worst of this disease which takes all of that away sometimes. God willing, there will be a cure or a new technique that permanently numbs the nerve. I keep praying in the meantime and enjoying life as much as possible.

Hi! Today I have a big update...I had the Glycerol Rhizotomy procedure at Pennsylvania Hospital with Dr. John Y.K. Lee! I'm going to write a 'packing/survival' list based on my experience today. I didn't find much information on patient experiences with this procedure online, so I'll happily provide the details for others! I'm resting at home now after the procedure this morning. I arrived at 5:30 AM and left the hospital around 11:30 AM. I'm not having any pain right now, including TN pain! YAY! I'll write more soon.

The latest on my TN

It has been quite a while since I posted an update, so a lot has happened since my last post! Here is the latest...

My neurologist put me back on Trileptal to help with the TN pain. I went for an MRI and the radiologists detected a new vein pressing on the trigeminal nerve. So, I visited my initial neurosurgeon and he says that he wants me to pursue medical management for the pain before considering surgery. He says that the second MVD can be more risky than the first. So, I went back to the medical route and I've been successfully treating the pain with the anti-seizure medicine Trileptal.

Some months over the past year presented with worse TN than usual. I had a severe attack one morning that was a 'game changer'. It lasted nearly 2 full minutes and felt like the left side of my face was plugged into an electrical socket. I couldn't move or speak during the attack due to the severe pain. The neuro. prescribed a second anti-seizure medicine to use in combination with Trileptal. This DID help!

Fortunately, a month after this severe attack, the pain went back to the usual levels. For me, the typical level of pain involves mild pains when eating, washing my face or brushing my teeth. This is WITH the medicine. Without the medicine, it's severe attacks, frequently and even moving my tongue can trigger the pain.

Most recently, I started taking Trileptal in combination with Lyrica and this is working quite well. It also reduced the number of migraines that I get. I hope that this information is helpful for anyone suffering from TN pain!

Article on TN

I found a great article that describes TN very well:
Click Here

I'm still trying to figure out exactly what I'm going to do to treat TN since it has come back after surgery. I'll keep you posted!

2 Years and 8 Months Post Op - It's BACK

I'm really sad to say that the TN pain has returned.

One year post-op!

It has been a little over 1 year since MVD surgery. Still, no TN pain!

The incision area, which I affectionaly refer to as "the cut" gets sore sometimes when I wear reading glasses. Unfortunately, the reading glasses reach far enough behind my ear to press on that area. I've managed to out-smart the problem by getting a pair of contacts from the eye dr. Now, I have options :)

Thanks for the comments and positive responses to my blog! Anyone considering MVD or who wants to discuss TN or post-surgery issues, please feel free to contact me :)

8 months post-op

Hi All!
Just a quick update to let you know that I haven't had a single TN pain since my MVD surgery. It has been EIGHT months since my operation. I've had a few headaches, and sometimes the healed incision area gets sore. Other than that, I'm doing great! It's a blessing to have my life back!

Still Pain Free!

It has been more than 90 days since surgery, and I'm still pain free! What a relief!

7 weeks post-op update

My family doctor cleared up the repeat bladder infection for me by prescribing Bactrim. I'm feeling much better now. As far as remaining symptoms: the area of the incision gets itchy sometimes. If I do too much in a day, the same area feels sore. I can also feel the titanium plate in there...it's much harder to the touch than the other areas of my head.

I've never been so excited to go back to work! I'll be back to work in 2 days!

Survival List/Packing list for MVD surgery

Details that may be useful for anyone preparing for MVD (no particular order): (this is not to be perceived as medical advice - only to inspire ideas for someone preparing for MVD)

1. Wash your hair the day before surgery. For three days in ICU, I wished I could wash my hair! On the same note, if you dye your hair, have it refreshed a few days before surgery. You will not be able to dye your hair for about 3 months. Consider using baby shampoo for a few weeks after surgery. It feels less abrasive on the scalp.

2. Bring a pillow for the car ride home. For obvious reasons

3. Check with your doctor to find out if you'll need over the counter pain medicine after surgery. My doctor told me to take regular tylenol. It would be useful to pick this up before surgery.

4. Bring a small pillow for the stay in ICU. I had a travel pillow and it was wonderful! I used the pillow to cover my eyes when it was too bright. The hospital was low on pillows, and the travel pillow helped to prop my head without putting pressure on my incision. I threw out the pillow after surgery to prevent any germs, but it was completely worth having it for 3 days in the hospital.

5. Bring slipper socks for the stay in the hospital. Be willing to toss these, too. The hospital provides slipper socks also.

6. Use a bath pillow to support your head in the bathtub in the weeks following surgery. This made it more comfortable for me to take a bath.

7. Setup your bedroom so that the bed is close to the door. Ideally, sleep in the bedroom closest to the bathroom. During the first week at home, I had periodic nausea. The short walk to the bathroom was very helpful.

8. Consider using a microwaveable wrap to soothe your shoulders and neck. (check with the doctor on when you can use this at home)

9. Use a cool washcloth on your forehead if you are in pain. Many nights, the coolness of the cloth helped me to relax and fall asleep.

10. Cut down on caffeine. After I completely weaned off of Trileptal, I began experiencing insomnia. Cutting out caffeine helped me to start sleeping again.

11. Bring chapstick to the hospital! Your lips will thank you!

12. If possible, arrange to have someone in your home for two weeks after surgery. Most people will be able to do normal routines around the home in a week, but it's very nice to have someone there during the second week.

13. Have some spring water, or a gallon of water in your house. You'll probably want to drink a lot of water after you get home from the hospital. It seems to help with recovery.

14. Have soft-foods on hand in the house. Jello, pudding, soup, teas, peanut butter and jelly, etc. You may want to slowly ease back into your normal diet when you first get home. I had a bit of nausea and I found that ginger ale and saltines were especially helpful.

15. Bring a tiny container of hand sanitizer with you to the hospital. You'll be able to sanitize your hands whenever necessary. Bathroom trips to wash hands were nearly impossible during the first few days.

16. Read up on/practice relaxation methods like reiki, meditation, deep breathing, etc. It will help you to prepare for the surgery, since pre-surgery anxiety can be high at times.

17. Consider asking a someone to update a blog for your friends and family. They will have a place to look for updates and it takes the stress off of your immediate caretakers during the first few days. (fewer phone calls)

That's all for now! I hope that this helps!

Good news and bad news

The (really) good news is that I still do not have any TN Pain!!! yes!!!! The bad news is, whatever infection that I left the hospital with is back. I think it could be a bladder infection. I'm going to the doctors today to find out what's going on.

I'm really looking forward to going back to work next week. Doing nothing is really boring!

Merry X-Mas!!

Post-Op Visit with Dr. Lee

I saw Dr. Lee today for my follow-up. He said that my incision is healing well. I still have what he calls "vertigo", and I call a feeling of being "off-balance". If I move my head quickly, it feels as though I've been shaken up. Imagine if someone came over and shook you pretty hard by the shoulders - that's the feeling that I have when I move too quickly. I think it'll get better over time.

He said that the artery that was compressing the trigeminal nerve was not the usual suspected artery. Instead, it was an artery below the nerve. In 25% of TN cases, this other artery is found to compress the nerve. So, I had a rare case within a rare condition.

Other than that, I'm still getting better. I had a nice day with my dad today. It has been especially nice to spend more time with my family throughout recovery. My mom couldn't make it but she was there in spirit. She went with me to the first post-op visit when I had my stitches out. Emmy loves spending time with me at home, so that's nice too.

Brain Surgery Articles

Interesting how-to articles on life after brain surgery and supporting someone who has undergone brain surgery:

http://www.ehow.com/how_2067986_enjoy-life-after-brain-surgery.html

http://www.ehow.com/how_2056172_help-someone-recover-after-brain.html

Tomorrow is the 3 week milestone!

Doing really well. Walking without holding onto walls - that's a good thing :)

Stitches are OUT

Stitches are OUT!!! Yesssssss~! It wasn't painful when they removed the stitches. They were starting to get itchy and sore. It was as if my body knew when they were no longer useful and started signaling that they were ready to come out.

The nurse said that the incision looks good. She said no exercise, no laundry, no vacuuming, nothing where I might feel a strain on my body for at least 6 more weeks. It's definitely an adjustment to avoid picking up anything in the house. Chris is helping out a LOT around here, and I'm very thankful for that. I can't pick up Emily, but he made her a little ramp so she doesn't need any help getting onto the bed. I haven't been outside on my own yet, with the exception of one attempt to get the mail. That was pretty exhausting, so I'm waiting until I get more strength to try again.

I am starting to feel like myself again! I'm gradually reducing my previous pain meds and I am feeling much, much better. And even better - STILL no pain! I thank God for every day and even every meal that I can have without pain. It's a real blessing. Whenever I think about it, I start to tear-up because the relief is so monumental. I even ate raw carrots!!!!

I'm fueling up on lots of apple juice and water. Taking vitamins; eating very healthy foods. My plan is to give my body every opportunity for healing that I can. I sleep whenever I'm tired and I have been following the doctors directions.

Pictures of Incision

Click these at your own risk :)

Picture of incision 5 days after surgery:
http://i92.photobucket.com/albums/l6/novastar22/5days.jpg

Picture of incision 2 weeks after surgery:
http://i92.photobucket.com/albums/l6/novastar22/2week.jpg

Picture of my hair around the incision. They did an amazing job of carefully shaving my hair, so that when I put my hair down it completely covers the scar:
http://i92.photobucket.com/albums/l6/novastar22/hairCoveringScar.jpg

2 week update

Today is the official 2 week mark after my surgery. I haven't posted much lately because I have been doing a LOT of resting.

I'm feeling a little bit better each day. Recovery is gradual and that was to be expected according to the doctors.

I'm optimistic that I'll continue to feel better over the next few weeks. There isn't much pain in the back of my head anymore. My balance is still very much "off" and I'm exhausted. I continue to respect the limits that my body seems to tell me of, and I take it very easy.

I had one major migraine since the surgery. That happened the evening of Thanksgiving and continued to escalate until the next day. I was able to control it via Excedrin at the doctor's approval.

Other than that, I'm doing well.

I'm home!

going home!

i cant wait to get there.

update on status

left ear still feels funny. minimal pain at incision. only need tylenol for that. stomach all better.

got the ok

going home today!

getting better

looks like i may go home today! waiting for the doctors to arrive.

ready to come home

tough to sleep on regular floor. missing comforts of home. a good sign though.

Eating soft foods. Moving out of icu tonight. May go home tomorrow.

Corn flakes with no pain today!!!!! After so many years this is such a wonderful event. Walked down hall with physical therapist.

Second day out of surgery. Feeling much better, nausea has subsided a little. Still a little nauseous when moving around to go to the restroom.

Dr. did quick checks of hearing, sight, facial movement, smile, bite & touch. No abnormalities, looking good! Very tired. Hope nausea stays away

Very nauseous when I came to,vomitted twice. A little dizzy when opening my eyes. Only pain is that it feels like a rug burn on the back of head

Waiting on Dr Lee to visit in NICU. Throat is really sore. potassium, sodium chloride, magnesium electrolytes are low, refilling them up.

Out of surgery, moved from PACU (post anesthesia care unit) into NICU (neurological intensive care unit)

hey are closing her back up. they could not put back the original bone resulting in the titanium plate replacement.

10:35 -- in recovery!!

Talked to Dr. Lee on the phone - he did find an artery compressing the trigeminal nerve. He separated them and t

8:27 -- Surgery started!

7:25 am -- Prep

6:51 am -- PreOp

Tomorrow is a "Go"

I saw the doctor this morning. He said that my blood work looks great and I'm all set to go tomorrow. The cold won't pose a problem.

I'll arrive there very early, 5:30 AM! Chris and my parents will be there with me. I'll send an update as soon as I can!

Description of trigeminal neuralgia

What Causes Trigeminal Neuralgia?
The most frequent cause of trigeminal neuralgia is a blood vessel pressing on the nerve near the brain stem. Over time, changes in the blood vessels of the brain can result in a blood vessels rubbing against the trigeminal nerve root. The constant rubbing with each heartbeat wears away the insulating membrane of the nerve, resulting in nerve irritation.
What Are the Symptoms of Trigeminal Neuralgia?
Trigeminal neuralgia causes a sudden, severe, electric shock-like, or stabbing pain that lasts several seconds. The pain can be felt on the face and around the lips, eyes, nose, scalp, and forehead. Symptoms can be brought on when a person is brushing the teeth, putting on makeup, touching the face, swallowing, or even feeling a slight breeze.

Trigeminal neuralgia is often considered one of the most painful conditions seen in medicine. Usually, the pain is felt on one side of the jaw or cheek, but some people experience pain at different times on both sides. The attacks of pain may be repeated one after the other. They may come and go throughout the day and last for days, weeks, or months at a time.

http://www.medicinenet.com/trigeminal_neuralgia/article.htm

Sunday: Two days before surgery

I woke up with a cold today. I will find out tomorrow if I can continue with surgery on Tuesday. I'm feeling somewhat anxious about surgery. If anything, I'd just like to get it done. Two weeks ago, I was more nervous about the procedure, itself. Now, I just want to get past the surgery and on to recovery.

Tomorrow morning, I visit the doctor for a pre-operative visit. I will find out what time my surgery is.