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Posted 7/13/2016 5:07 AM (GMT 0)
To those who had spoken with me a few months ago, thank you. The spinal issues I had been dealing with for several years came to a major head and it's just been a nightmare since March getting to the bottom of everything. Having a diologue with people who get it really helped a lot, however things got absolutely insane so I took a break from just spilling it here on everyone.

After seeing 3 different surgeons with widely varied opinions and talking with my PM Dr whom I've had for 4 years, I'll be having an ACDF on C4-C7 on 7/20. I've ended up with some pretty severe cervical myelopathy, vertigo, sometimes using a cane, bladder issues (tmi?) and will be having an additional procedure down the line for my lumbar area issues. I haven't decided for sure what route is best yet as it's complicated but will have plenty of time to think about it while healing from my first sx. Although my lumbar area is definitely what gives me the most pain and inability to stand or walk for long, my spinal cord is now affected more in the cervical area. Hindsight really IS 20/20 and so many things make sense now. The Ortho surgeon I went with is one who often ends up repairing botched surgeries, so...I feel confident in my decision. I am however terrified.

My surgeon was also concerned about OPLL disease but luckily my CT scans ruled it out, I'm just "lucky" to have some quite extensive, uncommon issues. Fun. My C1/C2 has fused together on its own in many places but luckily all the bone spurs are far enough away from the spinal cord, so basically I'm just dealing with the base of skull headaches/pressure and stiffness that comes with that. I hope it never reaches a point where sx is necessary there for obvious reasons but have been advised down the line it may... I've done extensive research and have been preparing the best I can for what's to come and trying not to focus on "what if's."

So yeah. Fusion fun, here I come!
Posted 7/13/2016 5:20 AM (GMT 0)
Please be sure and read CP 101 at the top of this page and look for the post on cervical procedures. In it there's a wealth of things those who have gone before you have written to help prepare for your surgery,things to have on hand post-op to make life post op bearable and what to expect as far as healing and recovery process. Good luck.
Posted 7/13/2016 6:09 AM (GMT 0)
Thank you, I have definitely creeped that list a few times as I am a lister!
Posted 7/14/2016 4:53 AM (GMT 0)
Hi there,
I'm sorry you have so much going on healthwise.
What is your plan for care after surgery? Will you have someone with you? I hope so!
There have been a bunch of us here go through fusion surgery, so many that I'm sure you have seen our motto THINK FUSION! It's very important to allow time and circumstances so that will happen.

Best wishes to you! My own story is titled the same as in my signature.
Posted 7/14/2016 12:26 PM (GMT 0)
I'm open to hearing/reading the experiences of others before me for sure and have dug around older posts on here quite a bit.

Thus far my plan is to have someone here all the time the first 4 days I'm home post op, my pet sitter drop in for potty breaks/feeding for a week and my girlfriend will be here in the evenings when she gets off of work. When all of this began I lived alone but my girlfriend actually moved in about a month ago. I have a lot going on but I'm pretty independent (although reaaaalllyyy slow and drop things often, heh) aside from being able to drive. I'm working on adjusting my expectations to not be as independent for a bit and pre-planning everything I can. I definitely want to provide myself the best opportunity for fusion success.

I see yours was posterior, ugh poor thing. I hear those are much more brutal.
Posted 7/14/2016 2:34 PM (GMT 0)
Hey CreatureLover.Prayers and Positive thoughts heading your way.

My current PMD and my former PMD both asked me if I had considered Back Surgery the 1st time that I saw each of them.

I guess I'm going to hold out until it's a necessity.I'm not sure how long that will be.:(

I love HW and the Forum at our disposal here.But,jmho,it's not good for me to focus on Pain too much.I need distractions.Music.Entertainment.And I need to do things to feel alive and useful.I certainly can't work in the yard like I used to,but 15-30 minutes makes me feel good.

Keep us posted.

Take care and God Bless.

Rick
Posted 7/15/2016 6:11 PM (GMT 0)
So very sorry your faced with this situation, it's definitely a hard decision.
Read up on here about "WhiteBeard" he's had a couple of neck fusions and is the best one to help you out on here, he has several older postings. To me he is the best one to help you. So read his older postings and get prepared.
You have my many many prayers and well wishes...give yourself time to heal and follow all the doctor's orders...
Posted 7/15/2016 9:11 PM (GMT 0)
Creature, I don't think it was much of a surprise to you that surgery was looming in your future. If I remember correctly it was about how much was going to be necessary. I am glad to read all of that has been addressed & you can move forward to getting your self feeling better. Being prepared is a huge element to a good outcome. Get in tune with your body & listen to it. It will tell you after surgery if you are trying to do too much. This part is especially hard for people to understand. They think because they have had surgery everything is all well & they will be fine in a couple of weeks. This is absolutely not true, it takes a lot of time to recover from spine surgery. Granted the neck can be quicker to recover from but its still major surgery no matter what. Have realistic expectations after surgery & you should do well.

So good to hear from you. Sometimes we find we need a break from things for awhile. Take care.
Posted 7/16/2016 5:57 AM (GMT 0)
Hi creature lover,
I'm happy for you that a decision has now been made on your treatment remember to take is easy not just the first few days post op but for a while afterwards, you mentioned that someone will be with you for 4 days when you get home I can tell you I had my husband home for 10 weeks post op and thank goodness I did, so you may need someone for more than 4 days. Good luck with the op and take care.
Vic39
Posted 7/16/2016 6:30 AM (GMT 0)
Rick, I completely get wanting to wait until sx is absolutely necessary. I've literally done every single solitary thing possible to avoid it but part of me wishes we would have figured out this mess before the myelopathy got this bad. It's such a delicate balance but I think for most of us, knowing we exhausted every other possible option other than sx helps in some way. I agree about needing distraction, entertainment and usefulness. I can't enjoy my yard anymore either but still enjoy filling up my birdbath. :) Thank you for the well wishes, truly. I hope you're able to figure out the best course for yourself.

Chartreux, thank you. I'll take all the prayers and well wishes I can get! I've had a bit of back and forth with Whitebeard before that really has already helped a lot. I'm sure I'll be re-reading a lot too! It's sweet of you to suggest it. :)

Susie, you have a good memory! I have to make note of what time I took my last dose of pain meds or I forget. ;) It's not been a surprise, you are correct. How varied the surgeons opinions have been, the time it took to get to this point in the game and how things have continued to go downhill functionality wise has been though. It feels good to be at this point but also daunting and terrifying, especially with multiple levels. I also never thought I'd be so excited about a shower bench at 38. Heh!

I'm big on preparation, list making and am learning some tough lessons about listening to my body and not pushing so hard. I refuse to go through all of this just to push myself back into the ground and am learning even more about being kind to myself. I'll probably need reminders it all takes time though. Heh.
Posted 7/16/2016 6:43 AM (GMT 0)
Vic, what did you find were the things you most needed help with during the day? My girlfriend will be home at night but we just can't take the financial hit of her being off during the day with me for long.

We're pre-prepping slow cooker meals, making sure I'm stocked with soft easy things to eat, I got one of those lightweight Rubbermaid plastic drawer things on wheels to store meds, notebook, books, iPad, lozenges, etc so it can be easily moved from the living room to the bedroom, just little things like that so I don't have to move around too much at first.
Posted 7/16/2016 9:07 AM (GMT 0)
keep strong says the turtle. more read than post nowadays.
Posted 7/16/2016 10:29 AM (GMT 0)
It's all the little things that are going to count in how well you get through the first recovery days and then healing over the following weeks. You want your priorities in some kind of order even down to energy exerted to perform even menial tasks. Cut whatever corners are necessary saving your bodies energy for healing. These little small tasks that you can get around is doing just that. Having things close at hand. My corner of the living room virtually became a efficiency apartment! I never had to move far to get what I needed. If you don't have one of those grabber things invest in one,they are less than $10 some places. A trip to a thrift store to get lots of pillows for positioning,various sizes and shapes. When your not actively moving a lot or staying in one position alot it's important to prop this and prop that and neck cervical spine surgery is going to leave you with very limited head and neck movement,looking down,bending down,turning from side to side is daunting task for awhile. Given that fact you want to ensure everything you need to find or reach needs to be at a level you can comfortably do that.

Portable pottys are some people's game changer the first few times alone. Trying to get to the bathroom unassisted can be high risk,the pottys can be sat over your toilet when you do start moving around more,raising the heighth of the toilet seat and this is a major task for many,getting up and down on a low toilet without grab bars.

Baby wipes at hand by your chair or bed because your likely going to spill and dribble with limited head motion and some people have swallowing issues post OP. Snacks and yes a cooler close by,just a little one for several drinks and cold snacks and ice packs. Ice packs can be made easily with good strong Ziploc baggies and water and alcohol.. the amount of alcohol will determine the hardness of the ice content. Half and half is usually a good thick slush and I like that so it conforms to the area your using it on. Less alcohol harder it freezes. They keep the cooler contents cold and you have handy ice all day. Bibs and don't laugh again you would be surprised how hard it is to hit your mouth when you can't see what your coming at it with. Eating healthy is healing healthy so making freezer to pot or microwave meals keep in mind that as well as the swallowing issues. You can get a can of "Thick-It" at most pharmacies and Wal-Mart and if you have never used it rest assured it works and has no taste,doesn't change the taste of anything only thickens it to desired thickness. Sometimes just getting water to a slurry or syrupy consistency helps tremendously with not strangling and you darn sure don't want to cough!! I always have gum and mints after any general anesthesia due to irritation from incubation as well as pain meds causing dry throat.

Just look around your area you plan to be the biggest part of the time post op and ask yourself if nobody was here and I couldn't get 10 feet outside of the area do I have everyday I would need to get through a day.
Posted 7/16/2016 5:28 PM (GMT 0)
What a great tutorial Vickie has given you! Add some bendable straws and you will be all set!

I hope you have a very comfortable recliner for you and all your pillows to live in for awhile. If it swivels, that's even better.

Take it very easy and THINK FUSION!
Posted 7/17/2016 6:43 AM (GMT 0)
Turtle, I'm certainly going to try! I do see a lot of posts read with not many replies.

Vickie, thank you for the time you took to share all of those things, I wasn't expecting liquids to possibly be difficult and had never heard of "Thick It", it's been added to my list now though. I've also never done half and half in my ice packs but will definitely try it! Pillows, bendy straws, a grabber, baby wipes, extra ice packs, little ice chest, water bottle with a straw, shower bench, handheld shower head, slip on shoes and house shoes, wide neck tanks to accommodate the stupid Aspen collar, among several other little things have been taken care of. I'm so thankful for online shopping! This weekend is also "prep the house and some more slowcooker meals time" since the sx is Wednesday. (I'm pretty excited about a reason to have pudding cups and ice cream!) I got a sectional from a friend with recliners on the ends but once it was set up, found they're too hard even now to operate (it takes leg power to get the leg rest down) so my recliner plan is out the window. Propping it shall have to be.

I was actually wondering about a toilet riser but didn't know if that went too far to ask about here. Heh. Everyone's experiences are so varied from back to work in 2 weeks, to a year out and still not functioning well, so I didn't know if having one on hand was overkill. I hadn't considered one of the portable pottys as my place is small with no stairs inside... But will keep that in the back of my mind now as a possibility. I'm really hoping that even though it's multi level I'll be one of the lucky ones with a decent recovery process. Do you think a bottom buddy is a good idea? Realistically, I just don't know how much trouble I'll have after going to the bathroom...I have short T-Rex arms, lol. I guess I shall find out soon.

If anyone is comfortable sharing their bathroom experiences post op, what worked and what didn't, I'm totally open to hearing them!
Posted 7/18/2016 4:48 AM (GMT 0)
Hi CreatureLover well I'm glad that they are finally doing something positive to help you, but WOW! your having allot done! Make no mistake this will be a tough one and will take some time to heal and get back to something close to normal. But you will do alright, just make sure you follow your doctors order to the Tee! Also if you haven't discussed this with your surgeon and doctor already, I would suggest you do so as soon as possible. If you have been on any pain meds for any length of time, your body becomes used to the meds, and thus sometimes it is difficult for the surgeon to get your pain under control after the surgery because you might require more than what a normal person would that isn't on pain meds. I had this problem with several of my surgeries, I was under medicated and I had a very difficult time of it! A real difficult time!!! So I would urge you to talk with your surgeon about pain control just to make sure he is aware that this might be problem?? Easier to address this in advance than to have to confront it after the surgery like I did! It would definitely be best if your Pain Management Doctor and surgeon worked together on this.

Anyway I will definitely be keeping you in my prayers, have they given you any idea on how long you will be in the hospital after having the surgery? I know allot of it will depend on exactly what the surgeon does and how well your body responds afterwards. Please........Just don't be in any hurry to get discharged home after your surgery! Believe me when I say it is better to spend a day or two longer in the hospital than get discharged and go home to early! Especially with everything your having done! This is a major surgery so just take things slow and easy! Since your friend is only going to be there with you at night, do you have anyone that can be there with you during the day? I know what it is like to be alone and on your own after this type of surgery, I don't recommend it if you can possibly avoid it. Keep your phone close to you at all times when you get home!

CreatureLover I do wish you all the best, and I hope this surgery goes really smoothly for you! Just be gentle with yourself, and don't over do it no matter how much better you might feel after the surgery! and Know that we are all here for you, and you have all our prayers and support!

If you need any thing that we can help you with, just let us know! Even if you just need to vent or need an ear to listen to you, we are here for you!

White Beard

oh one more thing? You might want to google this, but there is a device called squatty potty, that might help, as I know that this can sometimes be a problem after having this type of surgery, as they don't want you to put strain on your spine during elimination. There is another device that I got from the VA called the Bottom Buddy toilet tissue aid, just google Bottom Buddy. I found this device is also really great to apply ben gay to my back in areas I can't reach! You just use Kleenex rolled up and use the bottom buddy to grasp it and then apply the ben gay or what ever to the Kleenex and then it is like an extension to your arm so you can reach those areas on your back that you can't normally get to! Hey it works and necessity is the mother of invention! Ha
Posted 7/19/2016 1:58 AM (GMT 0)
Whitebeard, I know, it sort of feels like this is the start down the rabbit hole so to speak...but I'm working on trying to be positive. (Not my strong suit.) Luckily, my PM Dr and surgeon have a good relationship and he's aware I've been in PM the last few years, as well as have a tolerance built up to meds. Even when they just have to give me IV Valium to stop my chronic spasms for MRI's, or for RFA's, they have to give me quite a bit more than normal. I hate that you had to deal with being under medicated for something I anticipate is going to be brutal, this is no time to be tight fisted with meds. I've been on Soma and Norco 10's for a long while and was told I'll be on Oxy and Valium post op, I'm not sure what mg yet of course.

I was told most people are hospitalized 24-48 hours post op but I will be that stubborn, annoying pt who lets them know if I feel I'm not ready. Family and friends will all be working, or are elderly, so aside from my pet sitter dropping in the first 5 days, it's just me during the day. (Aside from weekends) I won't be able to pay for a home health aide or anything like that but am used to keeping my phone with me all the time because of my frequent falls. I've taken some advice and made basically a little nest of essentials in the living room though, it's just going to have to work.

I'm actually familiar with squatty pottys because of their commercial with the unicorn, heh! TMI: but I have IBS-D so straining isn't ever an issue. ;) I've wondered about a bathroom buddy too, I seriously have T-Rex arms and worry about the strain of twisting. I like your BenGay application use idea! Maybe I should go ahead and just order one...

I appreciate all the tips and the prayers, truly! I'm sure I will touch base with you guys post op. I'm pretty terrified today actually and trying to redirect my anxious energy to my prep-lists...but it's not working well.
Posted 7/19/2016 5:57 PM (GMT 0)
Hang in there CreatureLover! We are all rooting for you! We'll keep you in our Prayers!

Good Luck to YOU!

White Beard
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