Day 27 post surgery- On my nerves

Hi my friends!

Sorry it has been longer than 5 days since i have blogged, bad blogger! Since I have talked to you last, a lot of little things have happened.

1. Went in for 3rd checkup

2. Worked more

3. Worked in the yard

4. Saw a movie

I feel like for any “normal” person, these things seem very small for 12 days but for me it has been pretty big.

1. About a week ago, I went to Dr. Amirlak for my 3rd checkup-  I had some questions. I have been having problems with the silicone strips- getting them to stick. His nurse said she was not a huge fan of the strips and I was probably having problems because there is a lot of hair near/around the scars (Which is a good thing because it means my hair is growing!) I will continue to use scarfade a silicon gel cream on all of my scars. He thought things looked good. I had a little place on one of my neck scars that kind of hurt when I touched it- like an underground zit- as I call them. He took a pair of mini scissors to the bump and was able to pull out the end of the suture tie-off and a little bit of stitch as well. Since then the spot has gone down and is healing well. I have been on 50mg of Lyrica 3 times a day to help with the nerve pain (it is a drug that helps to make the nerves quiet down). I am still having a lot of nerve pain in the top of my head. It is shooting pain across the top of my head. The pain def  starts with heat- when I get hot, go outside, get in a hot shower- the heat doesn’t even have to touch my skin to make the nerves start acting up. Dr. Amirlak says it will go away but the nerves are still trying to find their new way. After surgery it was really hard for me to open my mouth very far and esp chew- i figured because the temple nerve was removed. The pain went away after a week or two, but last night it came back and is very painful, so hopefully it will go away again.

2. I have worked a few more days since I last posted. My job right now consists of making/manipulating Excel spreadsheets… a LOT of computer work. I have worked 5-6 hours straight for a couple of days and feel ok, but the second i get in the car the pain and exhaustion hits me like a bus. I am definately having a hard time with the recovery process… not so much the process itself but being able to be still, calm, inactive and esp REST. I have found (through therapy) that I put a lot of my self-worth in the things I do and what people think of them and me… so needless to say this time has been very trying on my self-worth because I am not producing anything or accomplishing anything that others can outwardly see. So this probably is the best therapy experiment I could have to go through. 

3. I helped my husband work in the yard the other day, but there was so much to do- I offered to mow both the front and back yard, very slowly. I felt ok after that, but then i decided to water the front yard (which I had to do by hand bc i was not one of our watering days- TX drought). Then I let the dog run through the water and then had to bath the dog… which ultimately was too much. Again as with number two, I am having problems deciding what is enough and when to stop… guess I will be working on that 😉

4. I went to see 22 Jump street with the hubs and another couple. It was really exciting because that was my first movie in at least 3 years. The smell of the popcorn has always been nauseating therein bringing on a migraine. Not to mention the decibal at which they play the movie. I was not sure i was going to make it after hearing the previews, but once the movie started I was ok… and I even ate some popcorn.

Bottomline- I think it is apparent that this surgery has had some positive impacts on my life- movie, musical, out with friends. I am still having a lot of rogue nerve pain and some pain-pain but pretty much like before surgery but now i am able to do more.

Hope all is well with you! Oh PS- I just started It Works – Hair Skin and Nails so I am excited to see if it helps my hair grow! Lol

Day 15 post op – “A long long time ago…”

I have to say even though my surgery was just a couple weeks ago, it already feels like it has been months. it has been four days since I have posted and now that I am two weeks out, I will post every 5ish days as not to bore you (or annoy you with my “awesome” grammar and run on sentences).  I have been making progress. I will say I am having a bit if a hard time obeying the nothing that gets your heart rate up and no lifting over 5lbs…because lets be honest- everything makes me out of breath post surgery and I can’t resist pulling my big lug of a dog in for snuggles. 

I worked two and a half days this week and am now off for two weeks for summer break (I go back for summer state testing).  Even though I did very little actual work I was still exhausted each day. It is hard going from 10 days of sleeping and resting to being up walking around working and catching up with people. 

My pain has changed from what I would equate with surgery pain to more of what I know as headache pain. The pain is not my normal throbbing pain, it is more of shooting pain in the top of my head. I emailed Dr. Amirlak seeing if he had any ideas, he responded within 2 minutes with a solution. I just LOVE the communication I have with him- it is priceless. He said to talk to my pain doctor about upping my Lyrica. I went to my pain doctor the next day and he upped my Lyrica to 50mg 3 times a day. (for those who don’t know Lyrica is a nerve drug used to help control nerve pain.) the Lyrica seems to help with the nerve pain so that’s good.

Overall I would say things are improving. I am starting to feel more normal- not even the normal pre surgery Elise, but the normal old Elise. I have been able to walk our dog every day for a couple of blocks and spend a couple hours with some friends at a kickball game. I also was able to make the trip up to my parents to visit them for fathers  day. I was able to drive the two hours there (I have been off my narcotics 4 days by that point.

Today (Sunday day 15 post op) I lost my last scab on my neck scars. Gross I know, but exciting because now I can wear silicon healing strips. The strips I got from the doctor but can be bought on Amazon or Walgreens or CVS. Right now I am having a hard time having them stick, but as I figure out the tricks I will report back.  On the scars on my forehead, Dr. Amirlak suggested I buy Scarfade on Amazon. It is $20 for a very small bottle but you only have to use a tiny amount twice a day.

One last thing, as I was looking for a specific picture of my daddy and I, I came across this picture of me. It is a picture I took right after I found out I had been denied by my insurance to have the nerve implant stimulator surgery. That was four months ago. I was totally crushed and felt pretty hopeless. I feel that in my effort to be completely honest, it is only fair to show this. I never ever show this side of myself or this kind of pain or hurt. But this is the life I have been living for 12 years- mostly the last year. It is important to me to share with others my journey with migraines no matter if it was happy, painful, gross, uncomfortable, or encouraging- just put it all out there. I am using this guide for me personally to gauge my wellness. It is so encouraging to look at my post surgery pics, even the swollen, bruised ones- I feel like you can see the journey to wellness in each picture. As hard as times have been, I am happy I have a picture to remind me of time at my lowest, hopeless, painful moment so I can see the growth. As you know, not all days are good and some are better than others but it is always great to have pinpoint in time to measure growth, success, wellness from. I also hope this serves as a reminder to always carry a little bit of hope and faith that there will be a better day. Also know God is good all of the time.

These are some pics from the last four days. Hope you all have a great fathers day. 

 

Day 11- Back to the grind

Today I went back to work. There were a couple days last week when I thought I could go to work for a little but… Needless to say, I am glad everyone around me shot that down. It was nice being back at work and seeing everyone but about 2- I def had some headache pain. I was able to head home a little while later and take a pain pill and use the ice pack.
It is highly possible that today was a little too much but I am a teacher and you have to work the last days of school to get paid over the summer (I don’t know why). Also, I just ordered my scarfade cream that was recommended by my doctor so hopefully I can start applying that soon. I am finding my nerves are sending random pain/itch/irritation messages. I am currently on Lyrica to help with that (pre-surgery) so my dr might want to up that when I see him Thurs.
This has been an interesting experience and it is so awesome all the people that are coming forward to me with their migraine stories. It makes me happy because that was the point of me pointing it all out there- to educate each other, build a network and give support. Keep sharing with others. My hope is to help others advocate for themselves big or small!

Day 10- “Big Girls Don’t Cry”- Frankie Valli

Well it happened people! I sat through a 3 hour musical- JERSEYBOYS. the life of Frankie Valli and the Four Seasons! If that’s not a testament to this surgery I guess I can’t think of what would be! Only after the play, did I realize how nervous my parents were for me also. My dad said there were a couple times when he kept looking at me waiting for my head to blow off (BC of the lights and noise). It was really exciting to not only make it through the play, but enjoy it. (PS- YOU HAVE TO SEE IT). Both of my parents looked at my quizically during intermission and afterwards- waiting for me to lower the boom… and honestly, I kept waiting too. I guess I sadly have had such little success with migraine stuff that I am continually waiting for the bottom to fall out. I think that is why I find myself not committing to saying I feel better- I guess there is a part of me that things it might not work out and would hate to tell people it worked and then have to back-track. That being said, I DO think I am doing better- if nothing more than 11 days ago there was no chance in hell I would have thought about sitting through a musical.

While at the doctor the other day, he reminded me about getting a special hair brush, which helps to stimulate the scalp. He said he had a lot of people who had itching problems and would scratch their scalps until they would bleed and scab. I did not really understand that until now. I don’t think I was clear on the numbness and weird feeling of my head from my eyebrows all the way up around the top of my head down to my neck. It pretty much feels like when you have BOTOX- but like BOTOX times a million. (Kind of the foot falling asleep tingling)- It isn’t bad or annoying or anything just weird. But anyways, back to the scratching… last night I had an itch on my forehead and I went to scratch it and it was like the itch was in my thought- because as I was scratching, the two processes were not going together. It was completely apparent that after this surgery your nerves go all kind of nuts and fire off messages. It was the weirdest thing. At the end of the day, I hate the problems it has caused but isn’t the mind a beautiful thing?!?!?

 

Day 9-” It is well”

Today mom and dad are coming back to town. I am pretty sure it has been awful for mom to have to be back at work, but it is what is. I was able to make it through the day yesterday with no meds until bedtime. So i am getting there as far as pain management goes. Mom wants to get her nails done at our usual spot and of course we have to do something yummy for dinner. 

It was really great to see them and to show mom how far I had come in just a week. She was impressed. We got our nails done- which of course entailed a LOT of explaining to all the technicians who came by what had happened. They were most concerned about my bruised eyes.. lol. They were very sweet and caring. My technician told me how she has these headaches where she throws up and just has to lay in the cold, dark, silent room. She uses two ibuprofen to try to help. It made me so sad to hear her describing the pain myself and many go through and not even know it is a MIGRAINE. Poor thing, I gave her a note of some meds to ask her GP about- she was extremely grateful. What is the point of being blessed with insurance, modern medicine, meds and a job to pay for it if we don’t share our knowledge with others! After nails, we went to a great dinner and were able to watch some fireworks in town- my first experience with loud noises post surgery and it seemed to be ok… OK enough that I decided i wanted to go with mom and dad to see Jerseyboys tomorrow! YIKES!!!! I am really nervous- I have not been to a live performance of anything or a movie in YEARS! Ultimately I can leave if I need to. I will keep yall updated. 

People keep asking me if I am better- “Can you tell a difference?” “Are your migraines gone?”- this should be a big indicator of the surgery’s success going to the show tomorrow. WISH ME LUCK!

Day 8- Stuck on You

Today was my follow-up appointment with Dr. Amirlak at UT Southwestern, Dallas. I was really excited at the possibility of having my staples taken out- and being able to hear about the surgery from Dr. Amirlak. I had a little anxiety about having the staples out, even though EVERYONE and their mother says it doesn’t hurt- I just wasn’t sure I believed them. I woke myself up this morning scratching one of my staples in my dream… that will wake ya up! So the staples were still kind of sensitive to a touch, so I could not see how it would not hurt even a little to have them removed. Sean drove me and we made it to the appointment. After the obligatory med list check Dr. Amirlak came in. I just wanted to hug him!- but I settled for a handshake- lol. He came in and his nurse handed him tools to do something- I panicked-, I was like,” WAIT! what are you doing?!?!?!” He was like, “I’m just looking- and going to trim the stitch in your eyebrow.” I was like “Oh, sorry.” I guess i was a little on edge. He spent the next 20 mins going over the surgery pics from the endoscopy. He had gone over them with my family but none of them could remember all of the details post my surgery. It was nice to go over them with him. He was very excited about them and said things like, “These are great pictures- they would be great for presentations.” Which is ultimately what he and I want. I could only hope that when he went in during surgery, that he would find causes of problems. He was able to see a couple of places where arteries were wrapped in nerves, and each time the artery pumped it would signal the nerves. In those situations, he went in and took out some nerves, decompressed some muscles and padded nerves with fat from my cheeks. This all allows for pressure to be decreased from different areas. Sean was able to show Dr. Amirlak a video I took 30-40 mins post op. He was very excited to see that kind of documentation. He believes that change in the medical field comes from patient advocacy and information- as do I. We discussed a small amount of muscle relaxers for my neck. I have had some neck/pain/strain/irritation (don’t know which one I would say) mostly from holding up my head to keep the pressure off of the incisions. The Dr. says I will start physical therapy in 2-3 weeks to help restrengthen the neck. I do not feel like my neck strength has changed  very much, it just gets tired more quickly. He also suggested i put silicone steristrips on my neck incisions starting next week and fade-away cream on my forehead scars. Dr. Amirlak gave me permission to post the pics and videos of he and I pre-surgery when he was making his markings. I don’t know if I have mentioned it yet, sorry if I have, but Dr. Amirlak had UT Southwestern’s professional videographer videotape the entire 9hr surgery. This was done in the interest of using it for research, information, teachings, future patients- etc.  It has been so fantastic to have a surgeon who is like, “SURE! WHATEVER- for the good of science, research, furthering the surgery, etc. I don’t know if you can tell I like him a little bit 😉 Long story short, I am happy to report (kind of sadly because sometimes I  like drama and to worry) but I could NOT feel the  staples at all! 

Day 7- Wally-World

Sean was home from work today. I had been pondering going into work for a little… Sean was not having that. LOL. He said we could do something else instead if i was feeling up to getting out. I was able to sleep on two pillows instead of 4-6 like all nights past, so that felt like an improvement. I felt a little better today as far as pain as well. We decided to go get tacos at Torchy’s tacos. We were able to sit on the patio and it was nice outside. I was still a little sweaty- I find that it is a little hard right now to regulate my temperature, but as with everything else- each day that is getting better also. I go to the doctor tomorrow and hopefully get my staples out! After lunch we went to Wal-Mart- the redeeming thing about going to Wal-Mart was even with my bruising and swelling. It was nice to walk around in the AC and be a part of the Wal-Mart people (to be watched) watching crowd. I am excited to go to the doctor tomorrow. I have not seen him since before surgery. Since my surgery went a couple hours longer than he expected I did not see him that evening and he had surgery the next day. Ok stay updated for NO STAPLE pics tomorrow!!

Day 6- Viva La Mexico… food!

Today Dad went home. That being said we had to end today in style! I got up this morning and still felt a little in the dumps so we took a little walk again. It helped. I watched some TV and then dad and I went to lunch. We went to Abuelos! Yum. I def was a little skeptical about going out in public, but I was willing to brave it for some good Tex-Mex. I will say that this surgery takes me a little longer to be able to chew and swallow “normal foods” right now- (NOT normal being anything I can gum down). After lunch we headed next door to the mall for a little walk in the AC. I am still getting winded pretty easily but each day is better. In the evening, a friend from my old job brought dinner over- It was incredibly sweet, esp considering what all is going on in their lives (She also has migraines and a past tumor). Each day is getting better as far as swelling, bruising and pain. Each day that passes is very encouraging. Of course great help makes everything just a little easier!

Day 5 post surgery- the blues (not just bruising)

Things are getting better as far as swelling and bruising and nausea. I have to say sleeping is more uncomfortable, probably in part because I am trying to tapper off of the narcotics. It is very hard to find a comfy position bc of the incisions on the front sides and back of my head. One life saver has been a traveling neck pillow- it has not been ideal because it rubs on my neck incision and it makes me sweat uncontrollably but it’s a lesser of evils. I just needed to through the pillow reminder out there because I keep forgetting during each post. Anyways on with day 5-
My dad has stayed home with me, while my husband Sean has worked. I woke up around 9 and came into the livingroom. I felt pretty down in the dumps… I have no idea why. I am still on my antidepressant and am getting insane outpourings of love but I still felt on the verge of crying. I talked to my dad about it and his response (which is his response ALWAYS) was “let’s get some exercise” now many times in life this irritates the piss out of me… But generally I know it’s true. He is a psychotherapist- so the intention behind get some exercise is, “change your body chemistry- right now” it is the quickest way to change the chemicals, muscles, etc. so we walked to the corner- and I was tired. 3 weeks post surgery you cannot do anything that will elevate your blood pressure above it’s normal resting rate… Which pretty much means everything falls in that category. So we walked very very slowly and it did help to loosen the blues. I talked to my husband also and he shared with me that this is very common after having surgery and being held up in your house. It made me feel a little better and not like I was crazy. My husband is a paramedic by trade and a safety officer at a large company. He sees people daily with the same struggles I have and have had. I think it is nice for us all to know there are others suffering and there are opportunities to share our experiences and knowledge. It makes the journey a lot less lonely. It is through his job and interactions with these people esp today that reminds me how blessed I am- How supported I am- how loved I am- to be in the situation I am. I have a job that is not penalizing my absence and insurance which made this surgery a possibility. God is so good- all of the time.

Day 4 post surgery- down the drain!

Day 4- I woke up this morning with a text from my husband telling me my surgeon had texted him telling me to call the office to check on my drains. I really appreciate that my surgeon gave my husband his cell number… Who does that these days? I called the office and made an appointment to have my drains removed. The rule of thumb with my doctor is to have less than 10cc in each drain in 12 hours and then you can have them out. Obviously I was in no hurry to get them out for a couple of reasons 1. I assume it’s not comfortable. 2. I don’t want to have to ride for an hour to dallas 3. If they are in there, whatever fluid is there has a place to go quicker than being absorbed.
(Ok it’s about to get real here- the point of this blog is me putting info out there so others know what to expect). I got ready to go to my appointment which consisted of me putting on a non sleep shirt and a bra for the first time in 4 days. I had just tried to use the restroom for the first time (#2) since Wed and it literally almost killed me.make sure you take a stool softener multiple times a day if you are on narcotics. On top of being clogged the constipation makes you feel like your brain is going to explode while trying to use the restroom. Needless to say this brought on a huge bout with nausea. I was able to take a soft an and lay on the bed for a few mins before we had to leave to go to the dr. The car trip entailed water, crackers, powerade, a cooler full of ice packs, a towel and my barf bucket. So glad I brought all of those things and even more glad I took the ice bags and water in with me… As once in the dr office I became severely nauseated as they took out the drains.
The drains- they took out the temporal drain first. They said it would not be comfortable… And it was not. It is very tight and there was a lot in there. You can feel it pulling through your head as it exits- but then it’s over and is the discomfort. Of course this through me into another “I’m gonna vomit or pass out” enter my ice packs and water. They took out the back drain which was no biggie at all. When the drains are removed it leaves a little hole, that leave open and you just put neosporan on it. I will go back on Friday to have the staples removed. My dad took me to the dr- mom had to go home and back to work (which I am sure just killed her)and Sean had to work too. The nurse said the healing looks good and I look like what they want their migraine patients to look like at this point in recovery. The word for that look? SEXY!