Happy 4th Anniversary

Four years ago today I had brain surgery to remove Arnold the Acoustic Neuroma from my ear.  It is considered brain surgery since they had to drill into my skull.  Thankfully, the surgery did not actually go into my brain.

Although I am always surprised at who of my friends have read my entire blog, I am sure there are many of you that have not read any of it yet.  My first post will help you understand who Arnold is and why he had to be surgically removed from my life: http://arnold-the-an.blogspot.com/2013/02/meet-arnold.html
 
Today is a day to reflect on this surgery.  I find that my memories of this day 4 years ago are rather hazy and there are only snippets that I remember.  This doesn’t surprise me at all.  My memory is horrible now plus with all of the medication and pain it is rather best I don’t remember too much.
 
I do know that my kids visited me in the ICU sometime the day after my surgery.  Some things I don’t think they told me before was that they had their temperatures taken before they could come see me.  They also got popsicles, the kind with the two sticks!  I asked if I was scary looking with all the tubes and stuff.  They said no.  I know they were worried about me, but I don’t think they understand fully exactly what happened to me, not even now.  I guess it’s good they have good memories of the hospital, popsicles, the gift shop, so they are not fearful of hospitals.
 
When I talk to Greg about that day, it seems during my surgery is a blur for him as well.  We were up at some crazy hour and had to be at UCSF by 6:30AM.  Then there was a lot of waiting before surgery, which we did together so it wasn’t too bad.  When I finally was wheeled off for surgery, his waiting really began.  This type of surgery usually takes about 8 hours.  That seems like a long time to be waiting for someone.  He seems to just remember going to lunch with my brother and talking to him a lot.  Of course, all I remember was being wheeled into the OR, thinking it looked like a messy storage closet full of equipment, then waking up with my eyes bouncing all over the place and feeling like crap and wondering why in the world I ever went through with this!!
 
Every year there after I have felt better and better.  With my personal training certification I learned more about balance and stability training and have incorporated that into my workouts.  I feel like that has helped me and that I am improving in both areas.  I feel physically strong and mentally strong and like I am charging through life at full speed.
My biggest difficulty now is my hearing, and that will remain my biggest challenge.  But, I’m not really alone in this.  Hearing loss is quite prevalent, especially as we get older.  I just consider myself ahead of the curve!

Scar

One thing I have not posted is a picture of my incision and subsequent scar.  So here you go:

Just after surgery, stitches still in.

Today, 4 years later.

Yes, I have kept my hair short.  I tried growing it out last year, got fed up with it and cut it short again.  I kind of love not having much hair.
It was about 2 weeks to get my stitches out.  I did not have a whole lot of swelling, but the scar did keloid.  It has slowly gone down over these 4 years with the help of Rosehip Seed Oil that I rub on it almost every day. 
It is still numb in places.  I don't think that will ever go away.  I do constantly wonder where exactly the hole is and how big it is.

Happy 3rd Anniversary

Today marks 3 years since I gave Arnold the boot from my skull.  I have not written to this blog in two years. I planned to last year, but my thoughts were too disparate. I could not pull together a coherent post. It felt choppy and then it was well past my two year anniversary.

Having had another year to reflect, I realize when I wrote this blog, my head was full of Arnold both literally and metaphorically.  At that time I still had so much going on: one kid in parent participation school, a preschooler, part-time work, a family and household to run.  Arnold, however, was on the fore front of my mind. And when my brain is filled with something, it is much easier to then dump it all out in writing.

Now a days Arnold is not so prevalent in my life. He creeps up here and there, but does not dominate my thinking.  He pops up when I am in a difficult hearing situation. In loud places I cup my ear to hear people. Even then it sometimes does not work. I strategically pick my seating in restaurants so I can hear a majority of the people. Sometimes I just stay mute in social settings because I can not understand anything anyone is saying anyway. And forget anything over a PA system. I can't understand anything said through speakers.

He creeps up when I am in a compromised situation.  I was making a risky move around my truck once and lost my balance. I slipped off the curb and was on my back in seconds.  I just do not have the reflexes to catch myself anymore.  Thankfully I mostly landed in the ivy and did not hit or hurt anything. I notice it at the gym when doing new moves quickly:  reverse burpee into a pull up. I had to jump to reach the bar and to be able to complete the pull-up. While the room did not spin, there was a lot of hesitation and deliberateness to those movements.

He also creeps up when friends are facing surgery or pain. How did I keep up my spirits? Was I ever down and did not want to get out of bed? How could I write an entire blog about it? How can I talk to easily about it?

Here are my answers and I hope it helps both people facing surgery, difficult recoveries or that know someone that is:

I have a loving and supportive family. 

My husband was with me every step of the way. I did not have to ask him, he just was there.  Every doctors appointment, talking to me about what the doctors said, talking with me each step of the way.  For my recovery he took care of everything, made sure I took my meds, made sure I ate, and push me when I would get discouraged.  

My kid provided unconditional love.  They were so strong through this whole ordeal. 

My parents are close and supported us however we needed it.  They took care of the kids so my husband could be with me for the surgery and in the hospital.  My mom cooked me food I could and wanted to eat.

My brother works for UCSF and insisted I get a second, better opinion. He talked me through how what I was hearing from the first set of doctors was not the right approach. I am forever thankful for his intervention.

I didn't have cancer.
 
There was no rush to treat. Once diagnosed, I was encouraged to watch and wait. I had months and months to accept that I was losing my hearing permanently and that at some point I would need to seek treatment. But not immediately.  By the time most people have to make a decision about treatment I was still wrapping my head around all of this.  I took an entire year to decide on treatment and even after making the decision, it was another 5 months until I was treated.  So give yourself time to process and accept your diagnosis.

I didn't have cancer.


My amazing neighbor set a good example. This woman is diabetic, had cancer, at the time was in need of a kidney, and probably had a number of other things going on that affect her health.  I have never thought of her as sick. She is always friendly and warm and greats us with a smile. If she is tired and needs a rest, she goes and takes a nap. She does not wear her issues like a badge, they do not define her, that is not who she is. She also takes care of herself and does what she needs to do to keep going. She is very open about all that she has been through and is going through, and that makes me comfortable to ask her questions. Through her humble strength she showed me I can get through this and come out smiling.

I didn’t have cancer.

Recovery was miserable. 

I remember waking up in the ICU wondering, “What was I thinking?! I’ve made a terrible mistake…” I felt miserable and had no idea how I would ever feel normal again. 

Thinking back I have come to realize that there are different types of "pain."  I usually think of pain as that sharp pain you get when you have done something stupid and it hurts. My pain after surgery was not like that. It was more like a general miserable feeling that encompassed my entire body and made me not want to move ever again.

Did I get discouraged? Absolutely. Were there days when I did not want to get out of bed? Well, yes and no. In the beginning I slept almost sitting up or the pain would be too much. Then the sciatica made laying too long too painful. Thanks to those factors I had to get up and move.  

My advice? Give yourself a break.  Recovery is long, no fun at all and completely different for everyone.  There will be complications and set backs.  It is a yo-yo where one day you will feel like you are mending and the next you will feel worse than you have ever felt before.  You just have to ride through it, keep your head looking ahead, and advocate for yourself.  No one else knows what you are going through, so you do have to take care of yourself.
 
Some tips?  

• Keep a schedule.  Get up at the usual time, get dressed, eat when you normally eat, etc.  Do not let the days blend together.  
• Keep in touch with friends and family.  Thanks to smart phones, it is easier than ever to drop people a line and have a quick conversation.  
• Plan to have visitors, that makes you have to be up and ready at some point during the day.  
• Keep trying things.  This is the hardest for me, I hate to take medication and I just do not want to be worse off than I already am.  Try the different medications, try different remedies, you have to find what will work for you.  This is where care givers can help the most, by nudging you to try something different to help you along.  You just never know what combination of things is going to help the most until you try it.

So where am I today?  I think I am doing great.  I drive my kids to South San Jose for school every day.  I run a bootcamp for the mom's two mornings a week.  I kickbox and run and both are just as good as before surgery.  I run my kids around after school to their various activities and suffer from exhaustion just like every other mom.  I am looking forward to starting to learn Jiu Jitsu this week, running at 10K in two weeks, and a trip to Hawaii in July with my entire family.  Arnold is getting to be a distant memory and definitely does not define me.

Happy Arnold Day 2014

Today marks the 1 year anniversary of Arnold's eviction.  I started the celebration today with a 2.5 mile run. 
 
I have been wondering how to summarize the last 6 months in my blog and what I really should say. Do I give a status report?  Do I ramble on?  Should I have some huge epiphany to share?  

Well, I do not have a huge epiphany to share, but I can do the first two.  To start, I can not believe it has been 6 months since I last wrote to this blog.  When I think about it, though, it really is not all that surprising.  Way back when I was first thinking about having this surgery and trying to find the best time of year to have it, I very deliberately chose Spring.  The Fall seems to fly by as we settle into school and activities.  Then the holidays roll around and those are all consuming.  Winter and the New Year usually sees alot of colds.  So by the Spring we have our routine down, all the holiday craziness is behind us, and hopefully none of us are sick.  So here we are, Spring is in full swing here in CA and I will take a moment to reflect.

How am I doing?

I think I am doing incredibly well.  I go about my life at full steam.  I have my usual energy.  I hardly think about the fact that a year ago I had a hole drilled into my head.  My sciatica flares once in awhile, especially on long car trips or after particularly tough work outs.  My balance seems pretty normal, though I can still dip my head in different directions and make the world spin.  I also seem to have trouble when I get too tired, then my brain just can not keep up.

The hearing in my right ear really is completely gone.  There is nothing registering
over there.  Be as loud as you want on my right side, I can't hear you.  I do, however,
still have tinnitus over there.  This is definitely annoying.  I had hoped for just completely silence over there.  But, no, my crazy brain thinks my nerves are sending some sort of sound message.  Come on, brain, figure it out.  All that garbage is just garbage, please turn it off.
 

Fun thoughts and events

I have managed to pass a few milestones that made me think I should write a blog post.  I found I did not have enough to say about each one, so I did not bother:

ANA support meeting at UCSF

I had always wanted to go to an Acoustic Neuroma Assosication support meeting at UCSF.  I managed to make one at the end of October.  I met Lady C for dinner, then we walked over to the meeting.  I am glad I went, but wow it was really small compared to the Stanford meetings.  I remember we mostly talked about making a treatment decision and encouraging the newly diagnosed to just relax and take some time!

Return to UCSF

My dad had knee replacement surgery just before Thanksgiving.  He had the surgery at UCSF.  I was not sure how I would react being there, waiting for my dad in that same hospital.  Turns out it was rather un-eventful.  I found I was confident I knew the routine there and glad I knew what I was doing.  I also found it was not as familiar as I thought it would be.  After surgery, I spent most of my time with my eyes closed and without my glasses on.  My memories of the hospital are fuzzy due to, well, everything: drugs, general nausea, eyes bouncing around, glasses off.  I mainly remember the hospital pre-op, so not much emotion there.  My dad's surgery was a success and he is recovering, slowly.  I think my recovery was easier than his!

Relapse?  No, just sick...

In December I got really sick.  I was in bed with a fever for about three days.  Greg had to manage everything, of course he did just fine.  I found I started feeling reminiscent of the time just after surgery.  My sciatica started to flare up, I was loving on my heating pad just a little too much.  That only lasted about a day, then I started to feel better. 

Work it!

I have avoided the gym for quite awhile.  I really wanted to get back to kick/boxing.  But, with feeling better and being functional came Greg traveling more.  Making it to a kickboxing class was impossible.  I also just did not think my body was ready.  Just going for a 1 mile run would stiffen me up and flare up my sciatica.  Finally, however, a little over a month ago I returned to the gym.  I went to Ironwill Fitness on a Saturday morning, for Beastmode's class.  Here's the workout:

Skill: 100 sit ups for time (I only did about 60)
 
WOD: "crazy 8's": 5 rounds for time
8 kb swings
8 goblet squats
8 lunges
8 push ups
8 mountain climbers
8 v-ups
8 supermans
8 side bends

The kb swings and goblet squats I did with a 10 lb kettle bell!  I think I substituted leg lifts for v-ups and did not use weight for the side bends.  I made it through the workout, no throwing up involved.  It was not pretty and there was a lot of cheating going on.  Since then I have been going about once a week with running in between when I can.  This past weekend I manged this workout Rx:
 
20 minute AMRAP of:
400 meter run
15 SDHP (12k kettle bell)
10 russian twist (12k kettle bell)
5 jump squats

I finished 5 rounds and ahead of the other three people that were in the class.  I feel my physical strength coming back.

So thankful

I am thankful for my amazing family, my friends and of course for my health.  My husband has proven time and again he can manage anything.  He can take care of the kids, me and the household when I can not.  I am glad that I have been able to return the favor and take care of him now that I am recovered.
My mom and dad helped so much and continue to constantly be there for me if I need them.  My mom's food she made for me when I got out of the hospital sustained me through those first few tough weeks.  I am glad I am recovered and can in turn help take care of them. My kids through all of this have been so grown up.  I thrive in their unconditional love; it gets me up every morning.  They are so understanding and always willing to help.  Yes, they are still kids and have their antics too!
My friends really helped me feel loved and supported through my recovery.  I hope that I am able to support them as they go through their battles in life.
I am so thankful for my health.  I am thankful I can function on a daily basis as I do without pain.  I am thankful I can push my body and it grows stronger.  I am thankful I do not have to rely on drugs just to get out of bed.  I am thankful my body is healed and I can move on.

What I know for sure...

Yesterday marked 6 months since my surgery.  Instead of finishing this post last night, I was finishing Halloween costumes for my daughter's Harvest Festival today.  I am so thankful to be back to doing all this crazy stuff for my kids.

On Thursday 10/3 I went to my second ever ANA support meeting at the Stanford Cancer Center in Palo Alto. They presented a number of AN cases and discussed their recommendations for each case. They then told us what the patient decided to do and the outcome, all good of course.

I found myself at ease in the meeting. So much of this I had heard before. This was all behind me. My decision was made so long ago, treatment is over and working its way into my past. For most of the people in the room, though, they still had a big decision ahead of them. I started to think I really should figure out what I have learned from this process and what I would advise people going through this.

At the end of every "O" magazine, Oprah writes an article, "What I know for sure."  I think this is a great title for the advice I can give.

What I know for sure about diagnosis

1. This diagnosis sucks.  There is absolutely no way to prepare to be told you have an acoustic neuroma (vestibular schwannoma).  Knowing you have one really does not help much at all either.  So, give yourself a break.  Be angry, be upset, be confused.  You should be!
2. Talking about this diagnosis is really hard. Well, maybe for some people they have an easier time.  I found it hard to want to talk about it, and that is ok.
3. You WILL come to terms with it.  That's life, you will get through this and continue on.  Again, give yourself a break.  Let all the emotions and crazy thoughts run their course.  And they will run their course and dry out.
4. Get Support.  You don't have to be alone in this.  Lean on your family and close friends.  If you are up for it, go to an ANA meeting and meet some of us that have been through it or are going through exactly what you are going through.  It really does help to talk it out, once you are ready. 

What I know for sure about making a treatment decision

1. This is YOUR decision.  Deciding on a course of action or inaction is completely a personal decision. The more informed of a decision that you can make, the better. Ultimately, though, no matter how many people you talk to and ask advice from, you are the one to decide what is right for you.
2. Do your research.  You will find yourself reading the same things over and over again as you do your research.  Believe me it is worth it.  All that repetition gets all the information and facts into your head so as you are meeting and talking to specialists it all makes sense.
3. If it doesn't feel right it probably isn't.  No matter how logical it seems a treatment option is for your case, if you don’t feel like that is what you want to do, then don’t do it.  
4. You will question your decision every day, twice a day. Over time this will decrease.  Until then, though, you will be constantly questioning if you are doing the right thing.  That is why those first three points are so important.

What I know for sure about surgery

1. Surgery is the easy part. The actual surgery is easy.  You are asleep the whole time.  It is everything leading up to surgery and everything following it that are hard.
2. I am glad I gained weight.  Ok, probably  not applicable for everyone, but if you are pretty healthy and lean, it really doesn’t hurt to gain a little weight before surgery.  What little weight I had gained I lost quickly since I was hardly eating post-op.  
3. Ask lots of questions before your surgery.  I did not ask enough questions, I still had many surprises along the way.  I do not know what I could have asked to have been told these things, but it sure would have been nice to know these things in advance:
1. The day before surgery I had fiducial markers placed on my head.
1. This required shaving patches into my head and gluing them on.  
2. I could not shower that night
3. Would have been nice to know so I could have warned my kids
4. Would have been nice to know so I could have warned my brain.
2. With the lumbar drain, you can’t move up and down or it will mess with the drain rate.
3. They put me on dexamethasone, a steroid to decrease inflammation.  Having the side effects of what this drug will be doing in my head ahead of time would have helped prepare me mentally for what I went through.
4. I am glad I went to the  "Prepare for surgery" workshop.  This was offered through UCSF and anyone can attend, whether you are having surgery at UCSF or not.  This was just another way to mentally prepare for surgery.  Not everything is applicable to your specific case, but it really helps you to get a better idea of what to expect.
   
5. Surgery messes with your teeth.  This is not really a huge deal, but an interesting point.  I had a dental cleaning about 4 months post-op.  I was bleeding alot and expected a scolding from my hygienist.  Instead, though, she said I looked really good for having had major surgery not so long ago.  Apparently your dental health suffers with major surgery...and pregnancy…in case you didn’t know.

What I know for sure about recovery

1. Recovery takes time.  It is going to feel like forever that you feel like crap, especially if you are on a steroid.  Give yourself time and give yourself a break.  Tell work you will be out for 3 months at least.  The last thing you need to do is to stress yourself about going back to work.  Your body is under enough stress as it is!
2. Drugs mess with you.  I know everyone is affected by drugs differently, but for me those narcotics and steroids are just no fun.  
1. Those heavy narcotics that are supposed to help with the pain basically make me feel loopy and drowsy and barely dull the pain.  
2. The steroids made me feel plain sick.  My eyes were dilated so besides bouncing around they couldn’t focus on anything anyway.  It made me nauseated so I did not want to eat.  I messed with my taste buds so even when I did feel like eating nothing tasted right.  And it gave me a dry mouth.  
3. If you can get some straight answers as to what they plan to put you on, you can read up on the side effects and understand them better. 
4. But you have to take the drugs, so just be prepared.
3. Take the laxatives. Apparently everything about surgery converges on plugging you up.  Once you do start taking the laxatives, they probably will take a day or so to start working anyway.
4. Complain about anything and everything.  If I had been more vocal about my ass hurting in the hospital, I could have diagnosed my sciatica so much earlier and known how to treat it so much earlier.  Anything that is going on with you, be sure to tell the nurses.  Be sure to ask and ask again that what you are experiencing is a normal symptom or side effect. 
5. Have something planned to look forward to. I knew I would be going backpacking with my friends late July/early August.  I know it is so hard to plan something like that just for yourself when there is this huge wall of major surgery in the way.  But do it, plan something beautiful and wonderful and relaxing and fun.  Then give yourself that image to think about as you are heading for surgery, then after surgery as you are struggling with recovery.  Give yourself that one great image to work toward, that one goal to strive for to feel better.  Then once you are there, take a deep breath and look back at what you have been through.
6. Talking about my AN after surgery is almost harder than talking about it before.  It is just so weird to meet new people and they just have no clue that I had a hole drilled into my skull just 6 months ago.  I must say, though, the shock value of telling someone I had brain surgery has not gotten old yet.  Check back in with me in a few years, maybe by then it will.

I am sure I have more to add, I hope I do.  I have had plenty of thoughts around this over the past 6 months.  I know everyone is different, so what I know for sure for me may not be right for you, I just hope it gives you something to think about.

Kristi Therapy

It has been 4 months since my surgery and about three months since my last post.  Since then time has gotten up and moved along in quite a hurry.

Recovering from sciatica was all consuming.  Most of my day was spent trying to alleviate my symptoms.  I would do the exercises and stretches prescribed by my physical therapist two to three times each day.  I would lay on my heating pad as often as I could.  I hardly thought of recovery from Arnold. 

Within two weeks I was able to drive for Audrey's field trip to Gilroy Gardens, chaperone all day, and drive back with minimal discomfort and just enough energy.  The sciatica was not gone, but it was improving and manageable. 

With my energy level coming back up and the sciatica no longer all consuming, we launched into summer with both kids out of school and plenty of time to plan all kinds of fun activities.  I actually had intended those activities to be day trips to various museums and the beach and all the fun the bay area has to offer.  But oh no, fate decided the best way to enjoy the summer was to jam pack it full of trips out of town. 

First stop, camping in Big Basin with my brother and his family.  Here I discovered my super power.  On the last night of our trip, the camp site across from us loaded up with a bunch of young, rowdy people that decided to party until 2AM.  I was sound asleep by about 10PM since I could bury my left ear in my pillow and, well, I can't hear a damn thing in my right ear so I did not hear them partying at all!

Second stop, Florida.  No better test for how well I have been managing my sciatica than having to sit on a plane for 6 hours.  The plane rides were not too bad.  I did take ibuprofen for the flight home, but the discomfort in general was manageable.  The strange thing was getting onto the people movers in SFO and suddenly being all wobbly.  It took me a second to realize my brain was working on figuring this one out!  The other good test on this vacation was playing in the waves in the ocean.  I was a little wobbly, but really not all that bad.

 

Third stop, backpacking in Tahoe National Forest with the Queen and Special K.  Nothing like hiking 4 miles with 37 lbs on your back to test your strength and stability.  We kept it simple and made a base camp and day hiked around.  

The girls decided to dedicate themselves to "Kristi Therapy."  They helped me work on my stability by taking me cross country, off trail, scrambling over boulders and even getting us lost for awhile.  I would say they did a pretty good job. 

Final destination, New Jersey to visit Greg's family.  Another airplane ride to test my sciatica.  Then a week of fun and swimming. 

So here we are, the summer flew by and now school starts in just about two days.  The up side is that surgery does seem much further away.  The down side of all this travel is I did not stretch and exercise as much as I should have, so the sciatica is still with me.  I have minimal discomfort from it, but it is still there.

As for the real recovery, from Arnold, that still needs work.  In my day to day activities I have no problem, but if I move my head too fast or try to jog, things start to get a little bouncy and twirly.  Somewhere along the way, though, I changed my expectations.  Before, when I would lose my balance or trip or something, I would think, "oh, that was bad" and get a little nervous.  But now, I kind of expect it. If I stumble or have to throw my arms out for balance I do not think anything of it.  It is just how I am.  I did not fall, I caught myself, it is helping my brain figure out what to do next time.  In fact, maybe that was a good thing.

I am almost back into the swing of things.  I have to add in work soon and then hopefully some gym time.  I would say I am feeling pretty darn normal and I know, no one can tell that I had brain surgery just 4 months ago.

The Rebound

Wednesday May 22, 2013
 
I have always heard after ending a long-term relationship to be careful of the rebound. Popular sitcoms show how bad rebound relationships can be. Apparently my body did not listen and decided to get over Arnold by developing sciatica in the hospital!! So even though I have not given this new ailment a proper name, it is completely dominating my recover and my life, it is definitely a rebound.
 
It took me four weeks to figure out what the heck was wrong with me let alone to get treatment. It actually started in the hospital as just a tightness in my left buttock. One of my day nurses provided one of those disposable heat packs that afforded relief. I figured once I got home to my own bed it would be fine. Boy was I wrong. 

I spent the next few weeks trying to "fix it" on my own. First I thought maybe I just need to stretch, my hamstrings feel tight. Again wrong, the condition worsened. I tried other stretching, exercises, a massage, even ignoring it. With every new thing I tried it would get worse. Even if I did not do anything it seemed to get worse. Finally I made the pain progress down the back of my left leg. Once I started telling people the pain goes from my rear down my leg, the word "sciatica" started popping up. 

So what is sciatica? Well, of course I googled it and came up with this from webmd: http://www.webmd.com/back-pain/guide/sciatica-symptoms

Sciatica is a common type of pain affecting the sciatic nerve, a large nerve extending from the lower back down the back of each leg.

Common symptoms of sciatica include:

1. Pain in the rear or leg that is worse when sitting
2. Burning or tingling down the leg
3. Weakness, numbness, or difficulty moving the leg or foot
4. A constant pain on one side of the rear
5. A shooting pain that makes it difficult to stand up

Sciatica usually affects only one side of the lower body. Often, the pain extends from the lower back all the way through the back of the thigh and down through the leg. Depending on where the sciatic nerve is affected, the pain may also extend to the foot or toes.

While I do not have all of these symptoms, points 1 and 4 definitely describe what I have been experiencing: I was fairly certain this is what is going on.  I am also thankful that my pain only goes maybe halfway down the back of my left thigh.  I could not imagine how awful this would be if it went all the way to my toes.  As it is, my days are spent managing the pain.  I wake up in pain, so that gets me out of bed.  I move around and sometimes it will feel ok if I am standing.  I can not sit without pain.  When standing gets painful I lay down.  However, laying down is painful too.  I have to be laying with heat on my back and bottom, then I am comfortable for a short time and often can fall asleep.
 
When I asked my primary care doctor and my neurosurgeon's nurse practitioner how to treat this, they both basically said anti-inflammatory medications (ibuprofen), heat and or ice. Not much to go on. Thankfully I had already been working on getting in to see a physical therapist before I had self diagnosed. I knew something was wrong and that I needed expert help anyway. It took almost a week to schedule my first appointment. So by then, it was four weeks after my surgery. 


I am surprised by how common this condition is.  Almost every one that I have spoken to and mentioned I have sciatica know exactly what I am talking about.  Often, they will tell me they have had it or someone very close to them has had it!  It is always comforting to know so many other people have had it, it goes away, and yeah while you have it, it sucks.  

My first PT appointment on Thursday 5/16 was disappointing. My PT asked me questions and did an examination. I did not tell her I think I have sciatica to see if she came to the same conclusion. She said I was having pain from nerves in my back (or something like that) so I mentioned sciatica and she said yes, that's it. So she then gave me two exercises and not much else for managing the pain. I did not know what to do when the pain came on. I did not have a routine of things I could do to actively lessen the pain. I had 5 days until my next appointment. That is a lot of waiting. 


My second PT visit on Tuesday 5/21 went better.  She worked on some of my muscles and showed me how tight I am in my glute and back.  She said we need to work from the bottom (literally) up.  So first, we need to get the muscles in my glute to loosen up.  She gave me one more strengthening exercise and two stretches. She also approved me to use my foam roller at home and/or a tennis ball to work out some of the tightness. We also decided to try ice on my back to see if that helps.  Leaving the appointment I was much more pleased with the routine for home.

The very next day (Wednesday 5/22) I had my first follow up appointment with my neurosurgeon, Dr. M.  That meant a car ride to San Francisco.   To compound things, I found the ice made the sciatica worse.  I seem to tighten up and have a lot of pain.  So, the car ride was brutal since I only just figured this out that morning and had tried to ice.  Thankfully I found an old lacrosse ball in Clio's (that's my dog) toys and was able to use that to roll out some relief.  

The doctor's visit was almost comical.  Most of the visit was spent addressing the sciatica and very little on how I am recovering from the surgery.  I did get to see my scans; I look free and clear of any tumor.  Dr. M did tell us a story that he presented my case at a radiology conference as an excellent candidate for radiation, then proceeded to tell everyone that they operated anyway!  He is ordering a scan of my lower back to see whether the lumbar drain caused the sciatica or not.

So for now, 600mg of ibuprofen three times a day.  Follow the exercises and stretches prescribed by the PT.  Do not over do it, and when I start to feel pain, just rest and heat.  Hopefully soon I will start feeling normal.

...and then there was coffee!!

Saturday May 11, 2013
 
It has been three weeks and a couple of days since my surgery.  I finally had my first cup of coffee today.  It tasted different, but was enjoyable.  Unfortunately I forgot about the caffeine factor.  Thankfully, my coffee is already mixed half regular, half decaf.  After three weeks of no caffeine, I am definitely very sensitive to it.  So, looks like I will be up for awhile this morning.
 
Until just this past Monday, I have not really felt like writing or doing much of anything.  My recovery was marked with bad and less bad days.  I was constantly sick to my stomach and each day was a struggle to find something that I wanted and could eat.  Fruit and baby carrots always seemed to go down well.  Other food mostly just tasted salty and often I could only eat a few bites if at all.
 
I had periods of energy, followed by long naps.  Many of my mornings I was able to schedule a visitor, which forced me to be out of bed and upright for a period of time. 
 
Each day the spinning and swimming of the world slowly decreased.  I was able to walk myself up and down my street a little after two weeks.  It did not take much, though, for me to "over do it" and need a long rest.

I attribute most of my feeling sick to the steroid I was on to decrease swelling (dexamethasone).  My last dose was last Friday and I expected to feel much better after that.  Actually, it took all weekend.  

Monday finally saw me no longer sick to my stomach or nauseated.  Since then I have steadily been able to eat more and have not been so limited in what I can eat.  My taste buds are slowly coming back to normal and food is starting to almost taste as I would expect it.
 
Pain management for my head has been minimal.  I have had a few days where I have had headaches, but nothing too severe.  Those are easily managed with Tylenol and ibuprofen.
 
My stability had improved greatly.  My head still swims as I look side to side, but every day that improves.  I am moving and walking more normally, though I still take things slow. 
 
Car rides are getting better as well.  In the beginning, I could not keep my eyes from bouncing.  I felt like my internal shock absorbers had lost all dampening capabilities.  We would hit a bump and everything would just keep bouncing.  With every car ride, though, this has improved and I dread getting in the car less and less. 
 
Today I feel there is hope for normalcy.  The world is becoming more and more stable.  My energy is starting to return.  My body is moving more normal every day.  And, most importantly, I can drink coffee again.