“Let’s do the time warp again”

holy moly! It has been almost a year since I posted! I am so sorry that’s not very blogger friendly of me. Well a recap of the last year… 1. I had a hell of a year at work (AWFUL), 2. traveled to some amazing places and 3. was able to get off most of my post surgery meds… All things pre-surgery would have been migraine inducing. My job (well a coworker or two) made my year a living hell.  In the past just seeing this pot stirrer would have been stress/ anxiety headache inducing but I was able to keep the migraines to 2-3 a month.

2. My husband and parents and I went to Italy, turkey and Greece in June- definitely not the air condition migraine free life I am accustomed to! But guess what- migraine free the entire time except when I got a little migraine on an open water day and was seriously sea sick and the whole 14 story boat was swaying… Barf! I have to say prepping for events like these (even as fun as they are – have given me massive anxiety pre and post surgery because I am afraid of being stuck somewhere where I can’t get any relief with the migraine pain (not that I have ever gotten any in general even at home)  I took a couple hospital ice bags (they are empty and you can fill them with ice or water and clip them closed – so you don’t have to worry about having a freezer or fridge to keep ice packs cold- tha relieved so much anxiety ! Try it

3. I spent a year and a few months on lyrica and had mass anxiety about getting off it as I was unable to sleep at night without. I kind of tapered off of it and stayed on my muscle relaxer to sleep. In late December I was able to go every other day on the muscle relaxer and then at the end of December get of it completely. This was all really exciting as I had massive anxiety about having to give those meds up and not be able to sleep.

All in all its been a good year migraine wise- I am down to 1-2 a month and they are far less painful than they used to be. I still would do the surgery over again tomorrow. I will try to post more often but this is a start

(scars look awesome and the only ones anyone can see are the ones on my neck. My head is still pretty numb from my neck hairline to my scalp headline but it does not bother me one bit!

Turn down for what?!? Day 249 post surgery

I feel like my lack of posting on this blog is a testament to the nerve-decompression surgery! I am 8mths and two weeks post surgery. When asked how my headaches are, I still find myself hesitant to answer “GREAT!” I guess after half of a lifetime with migraines the thought of living life without them is a gift and sometimes anxiety filled. I always worry if i say my headaches are good, better, etc. that to all non-migraineurs I am never allowed to have them again. That may or may not be a irrational fear, but I am trying to push myself to truly soak in the fact that I AM increasingly better. So in the last 8.5 mths I have had probably 6 migraines, which is phenomenal considering I was having 2-4 a week pre-surgery. So to catch you up let me make sure I hit all the things I am sure you want to know! 😉

Migraines- 6 in 8ths down from many EVERY Week!

Pain- I finally feel like I am over the (almost over) the surgery site pains. My head is still a little sensitive/tender to touch on my scars- but that’s completely natural. Still feels weird to wash or brush my

hair- probably because their are still a lot of numb spots – so I am feeling my head and hair through my fingers and not through the touch on my head.

Nerves- the random nerve pain is pretty much under control. The itching from the nerves is almost completely gone. My head only seems to itch if I take too hot of a shower.

Numbness- my head is still completely numb on the back of my head- from where the neck hairline is up to the crown of the back of my head. But I’m not complaining! Ill take numb over pain any day.

Scars- My scars are completely unnoticeable to anyone other than myself and PS- Dr. Amirlak does the most beautiful job on incisions if you are able to have surgery with him!

Hair- My hair on the back of my head is growing… at a glacial pace… but that’s how it always grows. It is maybe 1/4-1/2 in away from ponytail!

I have had a few inquiries to the blog about the surgery and that is exciting because that is why I started this blog, to get information out there about the nerve-decompression surgery. I was able to talk to a potential patient two weeks ago- it was so exciting to tell her my story and give her hope for a different life. I told her that it was a hard journey but I would do it all over again tomorrow, I would refinance my house, sell my car- whatever I needed to do to have this surgery! So I will force myself to be more loyal to updating you!

Day 111- Post Op- “Here Comes the Sun”

Well I write this to you (a million days past my intended posting date) to give you an update. A week from tomorrow will be four months post surgery. I can say FINALLY things are starting to improve and look up. As luck would have it, 3 weeks ago, I bent down to love on my dog and she jumped up at the same time and ripped my cornea. I had LASIK a few years ago and they go in and slice a flap of your cornea and fold it back shoot the laser and fold it back down and let it heal. My dog accidentally got her claw under the healed scar of the flap and ripped my cornea back. I had to have emergency surgery. I am doing well thank God! I do realize how incredibly lucky and blessed I am because it really could have been awful. I could not find my LASIK surgeon (nor could any of his office employees) and after 36 hours had to settle for the only person I had been able to contact in the metroplex who had not pushed me off until Monday (Of course this happened on a Saturday morning). Low and behold my friend called me that morning and told me to call this guy she found in Dallas (45 min away). I called and he was able to do the surgery that afternoon. It turns out that he is the SAME DOCTOR who completed many cornea surgeries on my Nanny over the last 20 years. It was obviously a God-send and my Nanny def played a part in that. I ended up having to miss the first week of school to let me eye heal. So about 2 weeks ago, I started back full-time to my job at school. The first two weeks were pretty rough. It was hard stamina wise and emotionally. I found that I wanted to continue acting like I did pre-surgery. Elise pre-surgery was very suck-it up and keep going (as evidenced by my trip to the ER for my eye being my first visit to the ER). I have had a little dip back into depression over the last two weeks as our district started 3 week assessments which I have to monitor and grade for the whole school (over 3600 tests). I was very overwhelmed last week and did not feel that supported at work. I had a real moment of clarity last weekend, when I had a meltdown. I realized that I am physically no longer able to go about life with the suck it up mentality. I am still VERY much in the healing stage of the this surgery. So what I have been feeling is sadness, lack of control, etc etc at the fact that I just can’t take it as tough as I was able to before surgery. That is kind of a hard pill to swallow, when your sense of achievement and self-esteem is wrapped up in what you accomplish… but I will continue to work on that.

Ok- on to the ACTUAL post-surgery update

I had my first REAL Migraine a month or so ago. It sucked but it was good in that it reminded me what they felt like. I think post surgery, I have been in a lot of pain and felt like the surgery had not done a whole lot yet- then the migraine hit and very quickly reminded me that all the pain I have been experiencing was NOT A MIGRAINE. So I felt like I was really able to step back and say “WOW! This has really helped!” Which is an awesome feeling! I still have nerve pain /shooting pain that comes on when my body temperature rises. I still have a pretty low stamina for doing anything active or outside. I have had a lot more sensitivity on the back of my head with the upper scars by my ears (which were done so beautifully and healed so nice- that I completely forgot about them until my Physical therapist suggested that the scars/ scar tissue there might be causing the pain. I have been having my husband brush my hair every night with a couple different brushes in order to help desensitize that area. I physically am unable to touch those spots on my head… its weird but oh well. My scars are healing nicely and my hair is growing back quickly. If I wear my hair in a ponytail I get funny looks now because my hair is long enough on my neck to cover my scars so it looks like I am growing out a stupid haircut. Lol. I will try to be better about posting more frequently but for a while there I was fairly depressed and not much changed from post to post and I didn’t want to be reminded of how bad I felt. But I am here to report there is always hope, things will improve in some way and God is good ALL the time.

The day 77 itch

Well I am 77 days post surgery. The bottom line- I feel better headache-wise but still have a lot of nerve pain. The nerve pain is mostly burning that occurs when my temperature increases. Aside from the nerve pain, I have really moved into the itchy-ness stage of the healing process. My surgeon told me to expect itchy scalp and buy a special hair brush to help with the itching. The itching is not actually a true itch- it is more neurological and nerve healing. The nerves don’t really know what to do now, post surgery, so they kind of go crazy. The only thing that I have found to work was ice packs. For the last 3 weeks, I have spent 90% of my waking hours under an ice-pack. I would say just within the last 4 days have my symptoms begun to get better. I feel like I need to use the ice packs less. I do have pretty typical night time itching once I kind of settle down from my day, it’s like the nerves still want to party. They seem to all be learning their new jobs- slowly but surely.
I work at a school and was able to have the surgery 10 days before summer break. I went back to work for the last two days and with the exception of 10 days in July that I have had to work- I have had the summer off. Today marks the last day of summer. I am a little nervous but excited to get back to fulltime work. I have an office and a fridge so I will be able to ice up. Wish me luck!

Day 60 Better late than never….. ? Depression

Hi friends!
I am so sorry this post has been so late. I hope this post finds you happy and healthy in the middle of summer. The last 30 days have been less than fun. I promised to divulge the truth on this website so here are the nitty gritty from the last 30 days.
In my last couple posts I talked about depression… so here it goes.
I consider myself of a healthy mind, I have suffered depression for 12 years- who is to say it is not from the chronic pain I have felt from migraines that whole time. Anyways, mid June I found myself still under the restrictions to take it easy for a couple more weeks. I was facetiming my mom and kind of lost it. My husband came in and my mom and husband decided that it would be best for me to not be alone. I would not say I was suicidal but I was sinking further into a deep depression. This depression was centered around the fact that I put a lot of self- value in what I produce (clean house, dinner, working out, playing with dog, going to work- etc) So during this time I could maybe walk two blocks during the day and be totally out of breathe. I would try to get out and go to a store or out for lunch with a friend… but that was all I could do and then I would be exhausted and need a nap. This made me feel super worthless. I know there was nothing I could do about it but still! I had my 8 week checkup last week and I brought it up to the surgeon, he said depression post surgery is a huge problem and issue and his number one concern… (I love him but) if I had not brought it up… he nor his staff would have asked about it. So I am just putting it out there for future surgery patients bring it up with your doctor immediately post surgery. So back to the story- my dad stayed with me for a few days until my hubs was off work, then my mom came down and stayed the next week. Then it was time for me to go to work for a week, which ultimately I have to say was really good for me. Since then I have not worked but gone to visit my parents and now this is the first week I am back to doing nothing and being alone. I am trying to push myself to walk the dog everyday, go to Physical Therapy and work on some of the stuff I have committed to (like this blog). Things are still the same as far as pain- I have a lot of nerve pain on the top of my head, it is expected though. This is going to be a much longer road to healed than I was planning for. Although, I will say this is probably very good for me.. having to slow down, being forced to rest, forced to be minimally active… who knows- all in God’s plan. I just need to remember the verse “Be still and know I am God.”

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!