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Posted 9/26/2014 11:18 PM (GMT 0)
Hello, all. I am Coti and I recently joined. I have been reading and trying to get a feel for the forum here. Chronic Pain seems like the best spot for me. Lots of people here have lots of different sources of pain and that's where I am too.

I first started living with daily pain at age 19. I'm 35 now. I feel like I accomplished something not having any surgeries all this time. However, this coming Thursday I'll be having a discectomy and bone fusion at C6-7 in my neck. From the looks of things, it's a rather successful surgery. I've had bulging discs in my lumbar region and have arthritis in the spine there as well as in my pelvic bone. I have a lot of pain in the sacroilliac joints and lower spine/tailbone that I am pretty used to being there. I don't really remember anymore what it was like to not be in pain. I think that has skewed my sense of reporting what is wrong.

My doctor called me at 7 at night last week because I have 3 herniated discs in my neck and wasn't even complaining about that. (It still isn't my main pain source.)

I am out of ways to sit, stand, or lie down to find a comfortable spot. There just isn't one that relieves the pain anymore. My mid-back has a few places that are paining me a lot and yet I feel pretty ignored about it. I've complained for a year about that pain and still have yet to have even a single test. I have xrays of my lower back/hips to show arthritis and MRI of my cervical spine so far.

I've never had surgery before and it makes me nervous. I feel like it's just the beginning of a long road ahead. I am hoping the road is going to lead to less pain somewhere sometime.

All I know is I can't keep doing what I have been doing and the Neurosurgeon said it was that or surgery. I feel I have finally been cornered into the operating room lol.

Thanks for reading and any encouragement. : )

~ Coti

(Diagnosis so far : arthritis and DDD since age 19)
Still waiting for explanation of bilateral twitching, spasms, throwing things against my will, numbness/tingling and a very painful prickling hitting both legs simultaneously that is not pins & needles so much as it is getting hit with a paddle full of nails.
Posted 9/26/2014 11:51 PM (GMT 0)
Welcome to Healing Well. There are several on the forum now who have recently had or plan to have cervical fusion. You picked quite a surgery to be your first! I'm sorry to hear you have so many other issues that you did not even complain about the cervical pain. Perhaps it will help some of those unexplained symptoms you are having.

You can put cervical fusion in the Search box to find other threads or just scroll down to find them written by Taller Now, Poplar Grove, Scared 24 and others, too. There is also a thread on helpful items for fusion recovery. Maybe you have already read these.

Please tell us more about your situation. Have you been trying to work? How long have you been told your recovery will be-you can probably double that, at least? Will you have anyone to help you the first days at home? What kind of doctor is doing your surgery? Most people here say a board certified, fellowship trained, neuro surgeon is the best. I joined the site after my surgery with an orthopedist, but he was good and I'm doing well. Mine was posterior so that's a different recovery.

If you have specific questions, ask them. Someone will be along with an opinion. Glad you found us.
Posted 9/26/2014 11:54 PM (GMT 0)
Hey Coti,

Welcome to HW.There are a couple of people that have had the Fusion Surgery in the Cervical Spine.I think one Poster had it about 2 weeks ago.They'll probably give you some info.

You entered the world of Chronic Pain at an early age.

I finally sought help from Doctors at age 40,if I can remember.

Again,welcome and make yourself at home,

Rick
Posted 9/27/2014 12:12 AM (GMT 0)
I have been out of work the last 4 years from pain, doing stay-at-home parent things to go easier on my body. I saw a Neurosurgeon when I was 20 and told him I wanted to avoid surgery as long as I could and he told me it depended on how much pain I could tolerate. Apparently I tolerate a whole lot lol

My mother had 2 back surgeries while I was growing up and she got her issues from her father. My younger brother had a lower back discectomy last year that was successful but a long recovery. The family history plus a car accident where I rolled 3 times at high speed made the DDD and arthritis come on earlier in my life than it would have, according to the first Neurosurgeon I saw who diagnosed me.

I moved states away and hadn't had insurance until last year so have started the process last fall in seeing to the pain issues that are now affecting my entire body. I fell down our stairs in November of 2012 and have had pretty severe pain ever since. I fall like a tree so I hit everywhere on my back in the process of falling. Not a graceful fall-er. lol

I am seeing a Neurosurgeon for the surgery while my PCP is overseeing the whole process and diagnosing of my issues. I've tried PT for pain and have a TENS unit that I like for long days out of the house to at least feel something besides pain for a little while when it gets bad.

I take Cymbalta for the arthritis, Prescription Naproxen and Hydrocodone and OTC Advil for pain. I don't know if it's working but they want me not taking Naproxen or Advil for three days prior to the surgery next week. I am scared about that so called my doctor in hopes of getting something safe to take those 3 days.

I know the surgery is going through the front of my neck and they won't use my bone because of my arthritis. (my own bone sucks lol) So I chose the prosthetic one? Something plastic with a growth hormone or something in it like that? He said using the neck brace the first 3 weeks increases the success of the surgery but even he is sure not all my symptoms are related to the cervical bulging disc so I am at a loss on all the twitching, painful pricking sensations going on. Apparently having it on both sides of your body makes it more rare or unexplained.

He said he likes to have one overnight stay at the hospital but some people go home the same day and I will probably be staying overnight to play it safe. After that, I don't know yet about at home. I hadn't thought that far ahead yet. I will have to check into some other's experiences here for sure before the big day. Thank you for such a quick reply and thoughtful questions for me to consider!
Posted 9/27/2014 12:22 AM (GMT 0)
I almost asked if there was a car wreck in your past. That's a common experience with many here. Please do play it safe and stay overnight or even another night if you can. One thread I referred to is called Useful Items... I'll bump it to the top for you. Also lila w is new here and having fusion surgery soon, not scheduled yet.
Posted 9/27/2014 12:27 AM (GMT 0)
Hi Rick : )

I used to feel like I could manage it myself but I have finally come to the realization that I can't. The pain itself is disrupting my daily life so much that it's doing what I didn't want narcotic pain killers to do to me. I was afraid of being too drugged and I am not good at asking for help. My stubbornness is probably why I am where I am right now lol I have to work on that. Posting here is a step for me in just hoping to talk to others who understand daily pain and pain that isn't going to go away completely. Less pain would be great and being able to socialize with friends and family more would be amazing. Those are the things that I'm hoping to get out of seeking medical help. I'm not sure surgery is going to do that but I am out of other options so that's where it's heading now. I am just hoping for the best and getting to the point I am released to at least exercise again.
Posted 9/27/2014 12:28 AM (GMT 0)
Thank you, Abilene! I will go read it now! : ) Everyone is so kind and helpful here and I appreciate it!
Posted 9/27/2014 12:44 AM (GMT 0)
You've definitely come to the right Forum.

We're all in our own state of disrepair.We come here to chat because I know I don't like to talk about physical problems with my family.

If you're taking Hydrocodone you're actually not taking a lot of pain medication for the problems you have.

That's good and it will serve you well after surgery when I would assume they'll give you something stronger.

Again welcome and make yourself at home,

Rick

Post Edited (tidalmouse) : 9/28/2014 10:44:10 AM (GMT-6)

Posted 9/27/2014 12:51 AM (GMT 0)
After reading that thread I don't think I've prepared at all for post-op. I'm glad I came here. I will have to reconsider how things are going to go after surgery at home.
Posted 9/27/2014 1:33 AM (GMT 0)
How old are your children ? If they are young, will you have help with the children post op ?
Posted 9/27/2014 4:54 AM (GMT 0)
Hi Coti and Welcome to Healing Well Chronic Pain Forum. I am sorry that you have to have this type of surgery at such a young age! But your not alone in having to have this type of procedure. I had my first major surgery and it was also a cervical fusion at C6/7 and I was 34 years old at the time. That was 29 years ago and I was in the Air Force in Alaska. So I can appreciate how you must feel! Allot has changed since my first ACDF, as at that time this was an new surgical procedure! I was in the hospital for eight days and they took the graft from my hip, and did not use any hardware to hold it all in place so I had to wear a soft cervical collar for close to 4 months.

Now it is only one or two or possible three in the hospital and they use donor cadaver bone for the graft and bracket and screws to hold it all together!. At least that is how they did my last ACDF at C5/6 in 2009, and it was a breeze! I was only suppose to be in the hospital over night, but they kept me in two nights just because the surgeon wanted to leave the drain in a bit longer. No complications either, not like what I had with the first one.

Anyway just wanted to let you know your not alone in this, when your on this forum your part of our Chronic Pain forum family. I think you will find allot of really caring and compassionate support here! We can not cure you but we can lend you our ears and always listen, and share what advice that we may have! We all know what it is like to live with Chronic pain! And there is allot of us who have had your type of surgery, and experience multiple back and spine problems. So we can not only sympathize with you but more importantly we can empathize with you!

I do wish you well on your surgery, and hope you will keep us all informed of your progress!

Good Luck to YOU!

White Beard
Posted 9/27/2014 5:47 AM (GMT 0)
Hi Coti & welcome to Healing Well. As you can see there are a lot of people here that have had cervical fusions recently. Please ask all of your questions you may have here rather than posting something on the older threads. You will get a better response posting them here.

Of course you are afraid, anyone needing surgery should have some fear in them & that is perfectly normal to feel that way. I do hope after reading some of the posts here it does help alleviate some of your fear.

I am very glad to read a neurosurgeon is doing this surgery. Those guys have the best hands, think about it, they do delicate brain surgery & that speaks volumes. This surgery is a very common one done all the time & I am betting you will do just fine as long as you do as your dr instructs you to. One of the most important things you can do after surgery is following the drs post op instructions to the letter. The surgeon can do his part in the surgery, but the final outcome for a good recovery rests with you by doing exactly what he says. That is where most folks get in trouble is by trying to do too much too fast, I think that is just human nature. Listen to your body & do not rush things or you will pay for it. If your children are small do not attempt to lift them, let them climb in your lap.

I too hope this surgery will help some of the problems you are having. You mentioned mid back pain & I am guessing you are talking about the thoracic area. Your drs can do xrays but depending on whether you will have metal implanted with your cervical surgery you may not be able to have an MRI because of the metal. Most drs will not do surgery on the thoracic area as they say it is too dangerous.

Keep us posted on how you are doing. Take care.
Posted 9/27/2014 12:44 PM (GMT 0)
Hi coti :)

I hope you are feeling ok or at least halfway decent today. :)

I read through your post and we have a lot in common. I have a family history of neck issues and also was in a car wreck at a young age so I definitely got the ball rolling for spine problems. I pushed myself over my limit apparently and ended up hurt on my job....

I saw you mention twitches..... Are you referring to muscle spasms, or what some Drs call fasciculations???? It is very uncommon, but I have them too. I think it skewed my first Drs opinion. Thankfully I decided to get a second opinion. The muscle twitching is constant for me. Worse on my bad days. The first Dr ran all types of tests looking for diseases because it's a typical symptom of MS and ALS. My surgeon and spine specialist assured me that they are coming from the pressure on my cord.

I am also awaiting surgery. They proposed a 3 level on me....yay.....

I have been out of work for a 17 months and have 3 kiddos. I'm starting to wonder if it would have been better to go to work, because kids can be a handful, and like you, I tend to overdo it....lol

My Dr said the same thing about the medication I was on, so I was prescribed Lyrica for the nerve pain and I can't take ibuprofen. Which stinks, because that's what I prefer. I didn't want to take drugs or narcotics to get through the day. The Lyrica seems to be helping though, but it makes me a bit dizzy so I can't drive. I hate the foggy feeling and I am supposed to be taking another dose during the day, but how will I watch after the kids if I do that? I'm sure you understand where I'm coming from....

Maybe ask about that medication, because you can take it pre-op and I've definitely noticed a difference. I am sleeping better than I have in over a year. Which is really important. I haven't slept through the night since June 2013. That can really do a number on your system. I understand not wanting to be on medication. I really can't stand it.

You said that Thursday was the the surgery day.... Does that mean you go in next week??

Let us know how things are going. I found this forum to be really helpful. It's nice to be able to speak to people about their experiences. Even if it's just to vent!! I've gotten quite a few tips from all the members here.

The motto on these threads is THINK FUSION!!!!

Take care,

Lila
Posted 9/27/2014 1:50 PM (GMT 0)
Thankfully my kiddos are not so tiny to be picking them up. They are 12 and nearly 9 (his bday is a week after my surgery). I go in October 2nd for surgery, planning to come home on the 3rd, not that I rely on things to go just as planned lol I know better than that now.

I have a lot of anxiety as each day progresses and hope just fielding more questions and taking more advice that I will be more prepared by the time Thursday gets here. I have been against surgery so long just seeing my mother go through what she did for her surgeries and have her fusion one fail after a couple of years. That was back in early 80s that she had the surgery though. I don't think she had any screws and it was a bone piece from her own hip, so long recovery.

I will have to get something worked out medication-wise on Monday hopefully as that's the day I have to stop my Naproxen and Advil. I've been very stubborn about non-narcotic pain meds too definitely because of having kids at home. Generally I want to be awake/aware of my life... but now I am to the point that pain is all I feel aware of anymore. It's being as disruptive as I thought meds would be so now I am just at the point of giving in. Maybe it is just time to accept all the treatment and put my focus on making it work. My way of going more naturally just isn't cutting it any longer. Now I am not even allowed to go to my aquafit class by my doctor, so I feel stuck. I am hoping if I just bite the bullet so to speak and go with the recommendations of my doctor and Neurosurgeon that I will be more able to be a part of my kids' and family and friends' lives eventually. Right now, I just am not able. When you can't sit long or stand long and can only walk for about 10 minutes... it's time to do something else and that's where I am.

I'm so glad I found this place. I don't know about you guys... but I find it difficult to say anything to family and friends but that I'm doing okay. I get tired of saying the same thing and complaining. I get down about it. It is easier to explain things here to others who understand/empathize. It doesn't feel like 'complaining' as much as 'explaining', if that makes sense. I think others around me just want to fix it or make it go away, an understandable reaction, but unrealistic approach.

Thanks so much for everyone's advice. You've really been giving me so much to think about and consider before Thursday gets here and helping prepare me mentally for the aftermath of surgery. I appreciate every single reply! Thank you!
Posted 9/27/2014 2:07 PM (GMT 0)
The twitching... I have an issue with my hands and feet moving without me wanting them to. ie. Holding the mouse of my laptop, my right hand will randomly pick it up and slam it down. I nearly flipped my bowl of yogurt on myself earlier this week with my left hand. I have accidentally thrown things out of my hands. I have hurt myself dropping boiling water and my hands are scratched, cut, burned in many spots from cooking and having less control of my hands. I have more weakness if my hands are higher than my chest I've noticed. But the twitching to me is basically just movement I didn't tell my body to do. I have been told by my family that it is actually much worse when I fall asleep as well. I am starting to feel similar almost like... 'reflex' reactions in my stomach and torso as well though it causes less of an aftermath so far. Also I can't seem to take photos that are not blurry either. Something about holding my hands up in front of me causes shakiness as well. I feel like it is nerve related. I have had tons of blood tests and no diagnosis. Just keep hearing if it was spine it would be more on one side than the other. I can't say that that is true for me. So... still just waiting to figure it out.

The Neurosurgeon said some things may be better after surgery but in my case he is not promising everything is going to get better at all. He also thinks it is most likely something else, at least not all related to the cervical spine problems.

As far as my midback goes, yes, it is thoracic and I've heard 'hardly ever' does someone have a bulging disc there. So I feel kind of ignored about that. But at the base of between my shoulderblades I have felt like a fist is pushing into my spine right in the center that spreads/swells upon using my arms or walking/exercise and causes me to feel short of breath due to the pressure on that area when I take a breath. I have pain at the top of my shoulderblades at the spine as well as what I would say is the 'top of the small of my back'. All 3 areas so far have no testing at all done yet after a year.

I am trying to be patient and hoping this new development is going to have my Primary Care Physician taking more action on the other areas bothering me too. I would really be happy if the nerve problems in my extremities/torso stop after this surgery, but I'm trying to keep a level head and not see it as a 'fix all' when my Neurosurgeon doesn't see it that way either.
Posted 9/27/2014 7:59 PM (GMT 0)
Hi Coti, You know it is really difficult to find anyone that will treat bad Thoracic disc's. I have problems with T3 and T8 and the disc at T12 is herniated and torn and that is the one that ended my Nursing career. I was told by a few different surgeons that the only way they would consider surgery on a Thoracic disc, is only if there was paralysis involved because of it! Other wise it is jus pain management!

You know I am sure you will do fine with the surgery, just make sure that afterwards, no matter how good you might feel, better careful and don't over due it, and follow your doctors orders to the Tee! Be gentle with yourself and especially with children, as much as you might want to, don't over due it! Give yourself time to heal, and the graft time to take! As for pain, you don't need to be stoic and try to "grin and bare it" Excessive pain could hinder your healing, as it can keep you from getting much needed sleep and put undo stress on your body! If you need to take pain meds for awhile then take them! It is far easier to take them before your pain gets out of control than afterwards! As it is much harder to stop pain once it has really taken hold than to prevent it from getting to that point!

Good Luck to You!

White Beard
Posted 9/27/2014 8:59 PM (GMT 0)
It's like you and I are twins almost Coti.... :). The things you just wrote about not wanting to complain to family and friends, I completely understand. It made me tear up a little ;) It's kind of lonely isn't it?? I am so tired of talking about it..... Even my husband didn't really realize how bad it was, until he came to see the surgeon. Its good that you have some people in your life that have been through this. My aunt had these same issues and I tend to open up to her the most. I tend to keep it to myself at home (partially because I don't want to worry the kids and feeling the need to keep acting like this isn't happening lol) and I think that can also be bad for us. In a couple ways. Like overdoing it and keeping our frustrations bottled up. I completely agree about feeling like you are explaining here and not complaining!!! Lol

I can't believe at 35 I am having a hard time writing my name.....and am about to have a major neck surgery....it's pretty disheartening. I think about the future now, in regards to my quality of life in 20 years. Hopefully by then, these types of procedures will be super advanced.

I normally live a pretty organic lifestyle. I've never liked taking medication and rarely drink. I like to be in control of myself and able to function. I have resisted most prescriptions, but recently realized I needed to do something too. I couldn't sleep and when I do, it's very disrupted. Not to mention my little guy still gets up sometimes at night, so I have just been exhausted. I feel like a zombie and I wasn't even taking anything!!

I also started to wonder if I am becoming depressed. I've never had any depression or mental illness.... Well other than newborn hormones.... Lol. Some days I just don't even get out of my pajamas. And I have no energy to do things. When I do muster up the energy, everything takes longer and is painful, or I pay for it later.

Most of what you described sounds like it's nerve related. If you haven't already, look up the terms radiculopathy and also myelopathy. In particular cervical myelopathy......
Nerves are complicated and react differently in every person. I have nerves firing in all my extremities as well as my torso. I also think I'm slightly spastic because my upper body is becoming more and more toned, even though I'm not working out. The Dr said that is typical because if your nerves constantly fire and make your muscles spasm and twitch, that means they are always working.

I'm actually looking really fit and toned (which makes it hard for people to realize that I have a serious injury lol) and am concerned that after the decompression if the nerves stop firing, I'll turn into a big blob.....Lol. Isnt that a crazy thought???? I wish I could turn off the uncertainty..... You know?

Try to keep your head up. I'll try if you do.... Ok??

Hugs..... Xoxo

Post Edited (lila w) : 9/27/2014 3:04:38 PM (GMT-6)

Posted 9/29/2014 11:07 AM (GMT 0)
Welcome! I can relate to so much of what you've said. I wish you lots of luck with your surgery and as others have said, PLEASE, PLEASE take it easy after. You'll pay in the long run if you don't!

I am also young for CP (38) and have three small kids. So Coti, I feel your pain (almost literally, LOL). This forum has been an amazing support for me. Welcome.
Posted 9/29/2014 11:51 AM (GMT 0)
C5 Neck Fusion surgery here from October 6, 2009.  I get to have C4 & C6 done when I schedule it.  I've been putting this off for years because my C5 surgery was awful.  Just make sure you sign a waiver that they fix everything while they are in there.  They closed me up and told me later I'd need more surgery.  The other items were not approved by insurance so they can't touch anything.  Been going to pain management to deal with the pain for years.  Welcome!
Posted 9/29/2014 3:15 PM (GMT 0)
I hope you are getting your medication issues worked out today to take care of you until your surgery on Thursday.

You mentioned your doctor called you at night to say you had 3 herniated discs in your neck. What are you told about treatment for all of them? Is fixing C6-7 expected to help support the others?

By coming to this site you get to deal with all of our questions-some you had not thought of and others that have already been resolved. I hope this continues to be helpful for you. Have you visited the site spine-health.com/
It has good explanations of surgeries.
Posted 9/29/2014 8:47 PM (GMT 0)
Hey Coti and WELCOME=)  I'm sorry you've suffered so long in pain.  I understand.  Most folks on this site do understand and care.  You will find tremendous support here, as well as much needed information.

Dixie

Posted 9/30/2014 12:41 AM (GMT 0)
Coti,
So glad things seem to be lining up for you to get some relief in your future. I had a C1 laminectomy in my mid-20's. Honestly, it was not bad at all. I was out of the hospital the next morning & started jogging again 3 days later. If you can get some shirts that are either button-down or that are wide-necked tank tops with cardigans or something, that will make changing on your own easier (you can pull the tank tops up from your feet).

Other than that, just be sure to follow your doctor's post-op instructions. Being young & healthy will be a huge asset and will help you heal much quicker than most. I hope & pray that everything goes better than expected & that you start to feel some relief in the coming months.
Posted 9/30/2014 1:02 AM (GMT 0)
Great new product for recovering patients called the "Raised & Easy Access Toilet Seat". This seat allows individuals (much like myself 2 months ago) who are recovering from surgery to use the toilet without the threat of falling and also making the process easier.

I was recommend the product by my doctor and it really helped me. I bought the seat on amazon.
Posted 10/1/2014 6:23 PM (GMT 0)
Tomorrow is your day! Prayers for you, your family, hospital staff, and especially surgeon for everything to work out just right to reduce or even eliminate your pain. We'll be eager to hear whenever you can let us know how you are doing. Hope you can rest tonight.
Posted 10/2/2014 12:43 AM (GMT 0)
Coti
Hi. I don't have a lot of advice as I am new here also. Praying that things will go well for you and your family.
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