Thursday, January 14, 2016
So, here we go. I'll list each thing separately and just give kind of a status report of how that aspect is right now, maybe as compared to what it was before.
1. Type 2 TN (constant aching) - I no longer have constant aching pain in my face. Sometimes I get a similar kind of pain but it doesn't last very long. For this pain I was only given a 50% chance of a 50% reduction in pain so this is pretty amazing!!
2. Type 1 TN (jabs and stabs) - I still get jabs and stabs of a similar nature to what I had before. Probably every day. Perhaps a little less severe. For this type of pain I was given an 80% chance of complete relief. I was told at my 4 month follow up that I could just be in the 10% that get some relief but not total relief. Only time will tell. My neurosurgeon said we need to wait the full 12-18 months recovery time to know. It could continue to improve, or this might be all I get. Right now, it's still pretty wonderful to be in that 10% (the other 10% don't get any relief at all from surgery).
3. This is the deep ear pain I was having, that also kind of encompassed both types of pain - deep aching as well as stabs of pain deep in my ear. And the pain has followed a similar recovery pattern. I still get some occasional jabs and stabs but I don't get the kind of constant aching that I was having before.
4. Migraine - this is the miracle part. This surgery was not expected to have any affect at all on my migraines. My migraines were usually on the opposite side of my head from the TN side we operating on, and he said that physically speaking, they are not related. But my migraines are significantly improved!! At least so far in my recovery (and not including the obvious surgery side effect of terrible head pain for the first few months), I have gone from 20+ migraine days a month down to about 4. I'm not positive on the number now because I don't even keep track. I still have them, and they hit me and I think, oh yeah I remember this awfulness. But then, the next day it is usually gone and/or I can take medication and it usually takes care of it! Like normal people migraines! It's amazing!!
5. Eye pain - it was never really clear whether my eye pain was related to the migraines or the TN, but it has improved a lot. I still get some of it, but not as severe or for as long.
Surgery Side Effects
6. facial Numbness (from messing with the trigeminal nerve to move the compressions) - on my face I have partial loss of sensation across my cheek, eyebrow and nostril and in my mouth, my front teeth on the left as well as the left side of the roof of my mouth. I usually don't notice it much. After the surgery and for the first couple months I had no sensation or taste on the entire left side of my mouth, including my top lip, and that was very annoying. But I was very much relieved when most of that sensation (and taste!!!) returned. It is possible this could continue to improve as well for the 12-18 month recovery time period. Just have to wait and see.
7. Head numbness (from cutting the nerves in my scalp to access the surgical site) - So, at first my entire head was numb. All of it. Both sides (I don't even know why). Then over the first few months of recovery, the sensation on the right side returned (with a progression from weird tingly and hypersensitivity gradually back to normal), then the top of my head, then the back of my head, and finally the top part of the my left side. I am left with numbness mostly just in a section of my head behind my ear (by the incision) and the top half of my ear (weird). My surgeon says it is likely that this numbness is permanent. Only time will tell, but it's probably not going to come back. Not a big deal, really. I usually only notice it when I get my haircut or someone else is touching my head, or anytime I pull a hat down over my ears I am reminded that I can't feel most of my ear.
8. Surgical site/incision pain - This is actually probably the most painful thing I still deal with and that's probably because it's the most persistent. I still have a lot of aching and tightness. Feels sort of like someone is grabbing a section of hair right at the incision line and is yanking it really hard, pretty much constantly. I do still also get some stabs of pain extending from the top of the incision line up my head and also burning heat sensations. Those are getting better, less frequent. Oh and when I raise my eyebrows I can feel it pulling my scalp at the incision. Anyway, I forgot to ask about the incision pain at my follow up, but I assume that this usually keeps getting better over time. We shall see!!
9. And as a note of interest - my hair has filled in the incision line pretty much completely. I can't even move my hair over to see it, it's all grown in. This is both positive and negative. It's just weird to have a major scar like that and something that I can feel all the time (because it aches and pulls) but no one else can see it. I no longer have my visible battle scar! The only way anyone would know (unless I told them) would be an xray or other scan of my head, because I have acrylic bone cement filling in the hole they drilled out. I'm not positive but I think it's about the size of a half dollar. Anyway, I was surprised my hair grew back right over the scar line. My hair also grew back over the spots that were bald for awhile from the metal halo stabilizing frame that they screw your head into for the surgery. So that's good.;)
10. Other side effects that were more short lasting - I lost my voice for about 2 weeks post op ( from working on the vagus nerve, I believe). I was dizzy and off balance for probably a couple months. I think I started driving again at about 10 weeks post op. I can't even remember what else.
11. Other side TN - I don't mention this very often, because it just feels too complicated to mention, but I have also started to develop some TN and GN on my other side as well. It's been a couple years since that started. But right now it is still less severe than even what I am left with from my surgical side so I am nowhere close to being ready to decide to do surgery on that side, although if it were to worsen that is an option I have discussed with my surgeon.
12. The only activity restrictions I have now are: no jumping on trampolines and no roller coasters and rides until the 1 Year mark. And I should be careful to protect my head with other things where hitting my head is a possibility. So I'll probably skip out on things where falling and hitting my head are possibilities for a while yet, especially if not wearing a helmet (roller skating, sledding, stuff like that). There's the bone cement that could possibly be dislodged, as well as the padding between the nerves that could be shifted out of position, as well as just needing to let the brain and cranial nerves heal from the trauma of surgery. I don't think I want to risk any of that.
So! That's where I'm at. Given all of this, maybe you can see why it's kind of complicated to answer if "my pain is better" - haha. But I am doing better, all things considered. I feel like I am a human again and not just a zombie. I am sleeping at night. I can exercise. I am off all of my medications (except my migraine abortive that I can take as needed). I would have to write another whole blog post to talk about the emotional aspect of this surgery and recovery so I guess I will leave it at that for now. A MILLION THANKS TO EVERYONE THAT HAS SUPPORTED ME!!!! Really. I just don't have the words to thank everyone that contributed financially, sent me comfort and support, listened to me vent and complain (mostly on fb), and perhaps more than anything, just not giving up on me. Sometimes, all you can do is sit and wait through the storm. Sometimes the storm never even ends in this life. Thanks for braving this storm with me.
Friday, June 26, 2015
In May, I went for a consultation with Dr Linskey at UC Irvine Medical Center in CA. He said that he could see vascular contact with my trigeminal nerve and that I was a candidate for MVD surgery, despite being told otherwise by 2 neurosurgeons and various other Drs here in UT. Two weeks later, we made the decision to move forward with surgery and scheduled for July 21. I had a lumbar puncture to rule out MS, which was clear. And this past week I had blood work, chest xray and EKG.
We have had an online fundraiser to help with the costs and we have been overwhelmed with gratitude for the generosity of so many friends and family. It's been amazing. We have to arrive in CA for pre op appts 2 days before surgery. Then the neurosurgeon requires that we stay in the area, not more than 20-30 min away from the hospital, for 14-15 days post op in case of complications and to have follow up visits. This means we will be in CA for about 2 1/2 weeks total. Then we will probably need to travel again to CA for follow ups at 3 months, 6 months, a year and possibly every year thereafter (I'm not positive on that.) So, there are a lot of costs. We are thankful to have insurance though, which means we will only have to meet the $7000 out of pocket maximum. For a surgery that runs close to $150,000 in total cost, this is a huge blessing.
Anyway, I've had a lot of people ask me questions and I imagine a lot of questions are being thought but unasked, so I thought I'd address most of the ones I can think of in a blog post. Hopefully this covers most everything.
1. What is an MVD? What will they do?
MVD stands for microvascular decompression. The neuralgia is being caused by blood vessels compressing, rubbing, or pressing on the cranial nerves (in my case he will look at 4 cranial nerves, #5, 7, 9 and 10). The surgery will remove a small section of skull behind my ear, they go in and look at the nerves near where they are exiting the brain stem and remove any blood vessels away from the nerves. They pad the arteries from the nerves with teflon padding. The veins are cut away and cauterized. They then replace the piece of skull with "bone cement" and stitch everything back up.
2. Why do you need an MVD? Aren't there less invasive surgeries or treatments for trigeminal neuralgia?
TN is a progressive disease. The longer the blood vessels rub against the nerves, the more damage is done over time. Because of this, experts in TN say that MVD's are most effective if done in the first 7 years since onset of symptoms. I'm already 4 years in. I have tried over 30 medications, and also done other procedures which haven't helped. There are less invasive surgeries but they work by damaging the nerve to prevent it from sending pain signals. They do not remove the cause of the pain, the blood vessels. And so the nerve heals itself over time and symptoms are likely to recur. Plus I had other neurosurgeons tell me I wasn't a candidate for any of those surgeries anyway. Then after you damage the nerve in these surgeries, if you then decide to try an MVD later, it is less likely to be successful due to all the additional damage done to the nerve. If there are compressions on the nerve, an MVD is the only procedure that removes the cause of the pain.
3. Will you be pain free after this surgery? Will you be fixed, all better?
This is the clincher. Even though MVD removes the vessels from compressing the nerve, it is still not always successful. It is very individual. Sometimes the nerve just doesn't heal well from all of the damage from the compression. Sometimes there are complications which make things even worse after the surgery. Sometimes the veins that were cut (if there were any) grow back and the pain returns. Sometimes the teflon shifts and the artery comes in contact with the nerve again. I don't even know all what might happen. It just doesn't always work. There are also 2 types of pain with TN: the episodic shocks of pain, and the constant aching pain. Not everyone has both types, but I do. The surgeon says there is an 80% chance of resolving the episodic shocks. But only a 50% chance of a 50% reduction in the constant pain. And then, in my case, I also have the chronic migraines, and he doesn't think they are related to the TN and surgery is not likely to have any effect on them. So. Even best case scenario with these chances of success, I will not be pain free. Almost guaranteed. And worse case scenario is just too scary to think about right now.... But that is the reality we are faced with.
4. So why are you even doing this risky, complicated brain surgery with an open craniotomy and the chance of complications, and a definite long recovery if you don't even know if it will work?
The million dollar question. The simplest answer I come back to again and again when I ask myself this question is this:
I don't know what else to do.
I have to try.
I don't know what else to do.
Because I can't keep going with no help.
I have to try.
Because I'll never know unless I do.
5. What is the recovery like?
Full recovery takes 12-18 months. I will have activity restrictions until I get cleared at 1 year. They don't want you to risk hitting your head or anything like that. Other than that, it depends on how the recovery goes, but it is definitely a long painful road of recovery. Dizziness, headaches, and nausea are very common for weeks. Most people say it takes at least a couple months before they are able to do very much. If there are complications, then of course recovery is even more . . . complicated. Numbness in the face and scalp is common. Sometimes there is some paralysis as the nerve heals. Recovery and possible complications are scary. Mostly because it's just so unknown. It's kind of like childbirth, you can hear all the stories, the good, the bad, the dreamy ones, the nightmare ones, but when it comes down to it, you really have no idea - AT ALL - what it will be like for you. You just have to do it. I am equally freaked out by the really easy recoveries I hear some people have, as I am the scary stories I hear about the really hard parts. Because guess what?! None of them is me. I would rather know everything I can and be prepared for the worst. But that's just me.
6. Why do you have to go to CA for this? Aren't there surgeons who do it in UT?
There are surgeons who perform this in UT, but from my own experience and from what I've heard, most will only do it on patients who only have the stabbing shock type of pain and who have clear compressions visible on MRI (Drs here said I didn't have compressions, even though Dr L said he could see them) - at any rate, I was not deemed a candidate for surgery. Also, although Dr L was very adamant in reminding us that he is not the only surgeon qualified to do this, he did give us some qualifications we should look for in a surgeon to do this. A few that stand out to me are that they should be members of the Trigeminal Neuralgia Association (there aren't any in UT), they should have been trained directly under Dr Janetta who pioneered the procedure (none in UT), and they should perform at least 5 MVD's a year, which is hard to find (he does about 50). He even said himself that he doesn't know any surgeons who meet this criteria in UT. So, if I would have to travel anyway to find a highly qualified neurosurgeon, I figure I might as well travel to one that I know is one of the top experts in the field of TN, and who has performed this surgery on other people I know personally.
7. So how do you feel about all this? Are you excited, nervous, freaked out?
Here's the thing. When the words Trigeminal Neuralgia were first brought up to me in Aug of 2011, I started researching whatever I could find. I quickly bought the book Striking Back, which is published by the National Facial Pain Association and is kind of considered the TN bible. I read about all the common medication treatments and available surgeries and treatments. I think I have always known that if MVD were a possibility for me, I would do it. But I had 2 neurosurgeons and 3 neurologists tell me I wasn't a candidate for any surgery. I gave up on it. It was over a year ago that I started hearing about Dr Linskey, other people's good experiences with him. I knew he was on the board of the Trigeminal Neuralgia Association and that he helped some patients who weren't helped by anyone else. And at one time, over a year ago, I actually had someone offer to help pay for the costs to get me to CA to see him. So I thought about it a lot then. We had different insurance then that didn't cover any out of state Drs, so it wasn't really a possibility. Then I had a year of breast issues that culminated in surgery this year (still having some pain from that surgery), which took precedence over looking into this further. But then we were able to change insurances April 1 this year. The person who had offered help was no longer in a position to do so, but it was his offer that had started the process of thinking through what I might do, if given the opportunity.
So, here I am.
I am scared, nervous and unsure if I am doing the right thing. It's hard for me to talk about. There are so many components. Getting through the surgery itself (lots of risks), possible post op complications, dealing with a normal recovery, wondering if it will work, and how soon I will know if it worked, worrying about leaving my kids in the care of someone else for nearly 3 weeks, worrying about how much they might be worrying about me and this surgery, all of the logistics: making sure the kids have ways to get where they need to be, needs taken care of, travel and lodging for me and Zac, Zac working while we are staying there, financial concerns, longer term post op worries, worrying about letting people down (even though I know I shouldn't, it's still there), people who have contributed to our fundraiser to help make this even possible, wanting this to be a successful, miraculous story, wanting or wishing to be "inspirational" - whatever that means - I feel a lot of pressure in it all, but just feeling too much like I am a failure in all of it, not knowing if I am strong enough to handle any of this, and do I have enough faith or any at all. So much of it I can't sort out in my head, and I don't have the answers or know even where to start. I don't even know if all of that begins to scratch the surface. But that is some of what goes through my head when someone asks how I feel.
Well, this post has probably gone on far too long anyway. But I hope this answers some of the questions some of you might have. Feel free to ask anything else you'd like and I will try my best to answer. Words of encouragement, love and support as well as prayers and good thoughts are always always welcome. Thank you again for reading and being there for me through all of this.
And a HUGE thank you to everyone that has helped out with financial contributions. Every little bit helps in relieving some of the burden and we are so grateful. Thank you.
Thursday, April 23, 2015
Tuesday, April 7, 2015
Sunday, April 5, 2015
retracing every step
I know I left it here
where did I have it
going back in time
trying to remember
just where it is
I left it.
searching in every place, every corner
trying to find, discover
where it is that
Saturday, April 4, 2015
On Easter Sunday, I thought I'd share this poem with you. It's inspired by the bible story of The Prodigal Son, which is a story of returning Home, turning away from sin and being welcomed again with open arms. And that, to me, is the story of Easter. That because of Jesus Christ and what He did for us, we can return home again. We can be forgiven for any wrong we have done. We can be healed. We are always loved and always welcomed to our Father's arms. This is what I believe. Happy Easter.
when you come, I will
put on the bandages
and I will bring you soup
in bed and I won't ask
you where you've been and
how you've become so
worn and wounded
Just come home and I will
help you heal
Come to me and I will love
How about some more poems for National Poetry Month? I think I'm going to shoot for 30 poems this month - we'll see!
I've been miserable with a combination of a possible cold and allergies this past week so these 3 seem apropos. I guess my allergies were a recurring theme in my poetry.;)
Self-Esteem During Allergy Season
and hairstyle and shoes
it's more than confidence
It's hard to feel good
about what I possess
when it's all dripping
out of my nose.
DRIP (Lamentation of a Sneezer)
want to let your
nose just drip
without even trying to sniffle it
or catch it
with a well-worn, well-used
crumpled, torn and disgusting
Don't you sometimes
want to let it
when no one else it around
who's to know?)
when your nose is red
and it feels like it's going to
at any minute
oh, how much better it would
be to let it drip
than to go through the
of wiping it.
Just call me sneezy
and I’ll share my life with you
I sneeze and wheeze and sniffle and cough
the whole entire day through
Just give me a bunch of tissues
and I’ll give you a thought to think
I promise you I’ll use them up
before you have time to wink
“Bless you!” “Bless you!” “Gesundheit!”
all the blessings in the world
won’t bring me my relief
So I sneeze and wheeze and sniffle and cough
the entire day through
while you bless me to your hearts content
and feel glad this isn’t you
So give me boxes of tissues for Christmas
I’ll be very happy
watch my nostrils quiver and queasy
have a nice day
just call me sneezy.