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Posted By : slowandsteadywinstherace - 9/16/2014 7:38 AM
Hello, I am new here. I am a 35 year old female. I am a gas utility worker. (I fix gas leaks and respond to emergency calls as well as service calls)

A brief history of my injury: 2010 blew out the labrum in my shoulder. It was a pulling/fall accident at work. Had surgery and healed well. At the time my PT Dr mentioned my neck seemed stiff and I did some exercises to help it. I had a motor vehicle accident 18 years ago where I had whiplash, and was accustomed to having a stiff neck.

Fast forward to June 2013. Was replacing a leaking gas meter and piping and felt a pop. Thought it was my shoulder again. My neck and arm and shoulder were really sore so after 3 days I went to my orthopedic surgeon, that repaired my shoulder, and had images taken. Shoulder was fine. He referred me to a neurologist. I was having muscle fasciculations (spasms)all over my body from the neck down. Also started having weakness and tingling all over but worse on the right. There are days I don't feel like moving my arms and my right foot has dropped. The Neuro had ct of brain done, 2 EMG s and MRI of the spine. At first he was thinking MS or ALS so I had blood work done too....

They discovered 2 cervical discs herniated. One is ruptured and pushing on my spinal cord. There is also moderate stenosis and nerve root impingement and my cervical spine has straightened. I believe due to my history. The first damage was done when I hurt my shoulder and 4 years later the disc ruptured which brought the symptoms on last year at that job I was on. I can't help but wonder if the motor vehicle accident was the catalyst for how deteriorated my spine is. I was told I have the neck of a 70 year old..... Haha..... Beautiful......

The symptoms have progressed and now my hands are clumsy and achy as well as my right foot. Most of the time I have pins and needle sensations and the fasciculations are constant.
Recently I have noticed my breathing is labored when I'm having a bad day. Its almost like I have to work to take a breath, but I have enough oxygen. I've read a few studies that have pointed out the nerves that help your diaphragm function can be affected, however when I called and spoke to my Drs office, they don't think it's related. I don't agree, but what do I know??? Its only MY body and I see a correlation.

My chiropractor disagreed with the spine Dr and thinks the breathing issue is related. He also read the latest MRI and images. The only drug I take is 800mg ibuprofen and was recently started on lyrica. I don't like the way the pharmaceuticals make me feel, so I have tried to avoid them, but recently the pain and weaknesses have been so bad, that I was willing to try anything. The lyrica seems to help, but I hate feeling fuzzy all day....

I am wondering if anyone here has experienced breathing issues with spinal cord problems. Currently they have diagnosed me with cervical herniations of c5 and c6 with radiculopathy and myelopathy, stenosis and straightening of the spine.

I also have a team of doctors. I see a spine specialist, a neurologist, an orthopedic, a chiropractor and have been sent to a neurosurgeon. The neurosurgeon is one of the best in my area, and all my Drs agree. He ordered a new MRI since the last one I had was a year ago. He wants to get the pressure of my spinal cord or I risk permanent impairment. He's proposing a 3 level acdf with fusion. I am waiting for surgery approval and should be getting a call about the schedule date today.

Aside from the breathing issue, I am also wondering if anyone came out of an injury like this and returned to their job. I don't want to sit at a desk for the rest of my life. I would love to go back to my old job title, but am worried this is going to permanently restrict me. I hope to hear from anyone about their opinions or similar stories..... Thanks :)
Oh.... And wish me luck. Spine surgery is no joke and I'm totally freaked out by it...

I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thanks.

Post Edited By Moderator (straydog) : 9/16/2014 8:08:22 AM (GMT-6)


Posted By : straydog - 9/16/2014 8:33 AM
Hi Lila & welcome to the forum. You have found the right place as several of our members have had this surgery recently & have been posting their progress which I think you will find very helpful. Not only will you learn a lot about this surgery, hopefully it will help calm some of your fears. This type of surgery is one of the most common spine surgeries done & has come a very long way over the years. I am sure if you have a top notch neurosurgeon you will be fine. Neurosurgeons are the very best for this surgery because they have the best hands. Since they do delicate brain surgery this speaks volumes.

You can use our search feature at the top & type in acdf & you will be able to pull up the posts & read about it. We do ask that you not post on those threads. You will get much a much better response by asking your questions right here. Abilene & Taller Now are two recent ladies that have had this done.

I would say the car accident is probably what started the neck situation. That is what happened with my neck. Any time an area has an injury or trauma it weakens that area & can predispose the person to further injury. It sounds like you have a very physical job which over the years more than likely played a role with the neck problems too. My son is an electrician & young & was shocked at what was found on an MRI of his neck. It all went back to his work.

The only time I ever had breathing trouble outside of my COPD, was from an impinged right shoulder. The spasms came around to the front of my chest & collarbone area. It was muscle spasms causing the breathing situation. I am not saying this is what is going on with you because none of us are drs here, lol. But, its a possibility.

I do understand the not wanting to be on medications. If you ask the people at this forum they will tell you the same thing, none of us want to be on them. But when it comes down to quality life you will make a choice. I also do not believe in suffering when there is some things that can improve the situation. I do hope when you have the surgery that you will understand that taking medication is what will assist you in healing from your surgery. Trying to be tough & not give in will prolong your healing because you are not letting your body have any rest, its in constant battle which will take a toll. You will not get addicted to pain meds if taken as directed by your drs either. People that get addicted abuse their meds & then have a mess on their hands. You will find those meds after surgery to be your saving grace. Your drs will have you off those meds in no time.

There is a chance that you may not be able to go back to your job but that is between you & the dr. Give it time.

Hang in there & do look for those posts & ask any question you have & you will get answered by either or both Taller Now & Abilene about the surgery.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : Dixie6 - 9/16/2014 9:05 AM
Hello Lila and WELCOME...Just want to say I can somewhat relate to your pain.  I'm sorry you're suffering now with your neck.  I know from experience that injury to the neck can be "collective" over time.  I, too have a reversed curvature of my cervical spine, with herniated disc and stenosis. Whether good or bad news, surgery is not recommended for my neck. IMO, you should AVOID the chiropractor and follow advice of neurosurgeon.  I'm certainly no doctor, but if my neuro told me I needed surgery...I think I'd be scheduling it.  I understand the fear and freaking out=( That's normal.
 
There are folks on this forum who can share first hand.  I just wanted to say you're going to be okay, Lila.  Your work sounds physically strenuous, so don't jeopardize your health right now.  Focus on getting your surgical repairs and healing.  Everything else will fall into place.  We care about you and we're here for you=)
 
HUGS~~Dixie
Stage 4 Endometriosis
Radical Hysterectomy w/Ovaries removed in 1993-94
Debilitating Pelvic, Vaginal and Rectal Pain
IBS w/constipation, Diverticulosis
Herniated Cervical and Lumbar Discs w/Nerve Compression
Arthritis, Osteoarthritis (Severe Bone Loss), DDD, Sciatica
Depression, Anxiety

Posted By : slowandsteadywinstherace - 9/16/2014 9:09 AM
Hello, and thank you for your reply.... :)
You may be onto something with the breathing issue. The muscles in my back and neck are always really tight due to the nerves firing all the time. I get graston therapy to break up adhesions in the muscles, but they always come back. Maybe the sensation of not being able to take a deep breath is related to the muscle..... Something to think about anyway. I'm no doctor, and that's why they get paid the big bucks....lol, but I know there's a link to this and my injury. The only time I experience it is when I'm having a bad symptom day.....

I look forward to reading about others experiences....
I know this surgery is common and I'm sure my neurosurgeon could perform it in his sleep...lol. nevertheless, it's scary.....

I never would have opted for surgery, but all the Dr s are saying there is really no choice, if I want to have a shot at a good quality of life. The symptoms are scarier than the thought of surgery. I'm still young (kind of....haha) and have 3 young children. I don't want to risk permanent damage of the nerves

I am worried about nerve function. Everything I've read is that the longer your nerves are impaired, the less likely the chances of full recovery are. It's been one year since the last accident and all conservative methods have failed. I hope I wake up from surgery with some of the symptoms diminished. Completely gone would be better, but I am realistic. I know it may take awhile to function normally again.

The issue with my job, is that per my contract, I must return to my job position within 2 years of the date of injury (they are considering the injury date to be 6-5-13) or I lose my seniority. That only gives me 8 months to have the surgery and recover enough to get my restrictions lifted. Maybe I am being UNrealistic in regards to my job..... Lol. One can only hope....

I know the drugs can help with my recovery. All the ones I've tried have given me that weird loopy feeling, and I hate it. The lyrica is definitely helping though, and I would rather deal with the loopy feeling at this point, than the constant, frustrating pain. I try to live an organic lifestyle, but my organic pain relief ;) doesn't touch the pain.... So lyrica it is. I don't worry too much about the drugs, because I don't want to be on them in the first place, but I do worry about becoming dependent on them for pain control.

It's nice to see others going through the same thing. Not feeling so alone anymore.....
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : slowandsteadywinstherace - 9/16/2014 9:20 AM
Thank you Dixie6!!! I really appreciate your kind words....
Yesterday was one of my bad days.... I'm starting to understand why people with injury, end up depressed.... Starting to wonder if I am. That's why I'm here. I figured it may help to vent and discuss other people's injuries.... We aren't alone!!! :)

As for the chiropractor.... He doesn't adjust me. He isn't allowed. :) But he does do light manual decompression (ok per the neurosurgeon and spine specialist) to help relieve pressure off the nerve roots and he's the one that does graston therapy to break up the muscle adhesions. The tightening of the muscles from the nerves firing is making the spinal kyphosis worse. So it's really just maintaining me and isn't claiming to be able to fix me. He actually told me he can't fix this, but he can help me maintain.... I also do OT at his office, to keep my muscles from becoming atrophied. Thankfully my team are all communicating with one another and they all seem to be focused on stopping the nerve damage now.

I appreciate your relpy. Not feeling so alone in my misery today!! :)
Xo
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : jpjr50 - 9/16/2014 9:32 AM
Many of us on here are experiencing that same thing you are.

Most of us also have had Fusion Neck Surgery. I had C5 in 2009 and need C4 & C6 done eventually.

Because the disc's are hitting nerves and other things you'll have spasm's, pain, swelling, tingling in the arms / fingers, etc. This is just normal as disc's aren't suppose to touch anything.

I can get breathing issues if I lift something I probably shouldn't have.
Neck C5 Fusion Surgery and Migraine Sufferer. Need C4 & C6 Fusion Surgery soon.

Posted By : slowandsteadywinstherace - 9/16/2014 9:45 AM
Hi jpjr50. Thanks for the reply :)
Just curious if you think the breathing issue is related to your cspine issues? Nerve or muscles? Did you ever discuss it with your Dr?? Thanks :)

Posted By : jpjr50 - 9/16/2014 9:50 AM
It hasn't happened enough for me to ask, that's my fault I should discuss it with my Dr. It could also be medication related for me too.

Weird things happen with disc's touching stuff. I can be fine one moment, turn my head weird and I'm junk the entire day. The other day I got out of the shower wrong. The worst was putting my phone on my shoulder and moving my neck to hear it. Wow, that almost dropped me to the ground in tears.
Neck C5 Fusion Surgery and Migraine Sufferer. Need C4 & C6 Fusion Surgery soon.

Posted By : slowandsteadywinstherace - 9/16/2014 10:03 AM
Hahaha..... I'm not laughing AT you.... I'm laughing WITH you. 2 days ago, I sneezed and from that point forward, my symptoms were terrible. Including the breathing issue.... I had a breakdown yesterday because of the pain and frustration. I've never been the pity party type, but darn if this isn't the most frustrating, maddening thing I've ever dealt with. I mean...come on!!!! A SNEEZE????? With my symptoms like this, the surgery couldn't happen quick enough. I can't believe I am actually LOOKING FORWARD to spinal fusion..... Just so tired of this and have had enough..... Thanks for replying jpjr50... Ask your Dr!!!! ;) ;)
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : straydog - 9/16/2014 10:27 AM
Lila, you will find because of the nerve issues, the Lyrica is one of the nerve meds rx'd. Gabapentin, Cymbalta & Amitriptiline are some other nerve meds. These are not narcotics, nor is the Lyrica so you have no worries there. I can assure you unless you have addiction issues previously, you will not have problems with taking pain meds. Your drs will not leave you on the pain meds long either. We see more complain of the surgeon taking meds away too quick, so that is one less thing for you to worry about. Surgery of any kind is scary.

Straightening of the spine can be caused by spasms & a good muscle relaxer can help with that. It is sounding like your breathing issues are related to spasms from what you are describing especially when you can point it to happening when you are feeling the roughest.

Once you have this surgery the ladies will tell you take things moment by moment when in the healing process. Follow all post op instructions to the letter even when you think you can do something you shouldn't. Setbacks after surgery are the hardest to overcome. What the patient does after surgery determines the success of the surgery.

Take care.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : Dixie6 - 9/16/2014 10:47 AM
Hey again Lila...Sweetie, you are NOT alone here.  I joined HW maybe 3 weeks ago and have found it to be such a comfort.  And YES, a simple sneeze can sometimes be detrimental to having a Good Day.  I agree with others who have posted in that your breathing difficulties are more likely than not, related to compression. 
 
Neurontin has helped my nerve pain from shingles in my eye.  I find that I do better with lower doses, so I prefer to avoid titration to higher ones.  That's your personal decision, though.
 
HUGS~~Dixie

Posted By : slowandsteadywinstherace - 9/16/2014 10:48 AM
Thanks Susie.... Good advice!! I've never had addiction problems so at least there's that :)

I am definitely worried about what to expect after surgery. Like how long should I have help? My kids are 2,4 and 12.... So that is going to be a challenge. My toddler still wants me to "rock him like a baby" at night.... Lol. It breaks my heart when I have to tell him I can't and the Dr said absolutely no lifting for at least 6 weeks postop. Makes me so sad!!!

Thankfully my father just retired and my mother has a flexible schedule, so they will be here to help when my husband is working. I can't imagine going through this without help.... Especially for those of us with little ones.

I just received a call from the surgery department. She wanted to let me know, they have the surgery marked as urgent and was waiting to hear back from workers comp. Thankfully my employer is self insured, so I am not dealing with a 3rd party carrier. I deal directly with my employer and they have yet to deny me anything. They are pretty good at handling this, but the case is so complex they put a case worker on it, to have a better understanding of what's going on.... I am incredibly lucky as far as that is concerned. I have heard horror stories from others when dealing with workers comp.

So anyway.... I'm sitting (actually lying here lol) at the moment, trying to stay thankful for what I got, hopeful for the future and depressed about the present..... lol. Thanks for letting me vent :)
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : slowandsteadywinstherace - 9/16/2014 10:53 AM
And thanks too you too Dixie!!!! I feel better for being here. I've been so weepy since yesterday and trying to not let it show, for the kiddos, lol and it is taking its toll..... Sometimes when people say "stay positive", it makes me want to scream.... haha. Positive is hard when I'm constantly weak and spasming...
Lol. People don't really get it, unless they've been through it.... And that's with everything in life. Thanks for taking the time to understand.... I really appreciate it :)
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : Loring - 9/16/2014 11:41 AM
Hi Lila:

Sorry to read about your neck problems and breathing problems.

I do hope your surgery goes well and recovery too.

I have Osteoarthritis in my neck and other joints. I also have Fibromyalgia. I am in Canada. Surgery has not been offered to me as a solution. I, too, was rear ended about 10 years prior to the arthritis symptoms. I have written on many posts as I have multiple health issues.

Just wanted to let you know that I was on Lyrica for a couple years and got up to the full dose allowed. It didn't take all the pain away for me but I sure noticed when I was taken off of it that I could not function well. I truly never felt any really bad side effects. Weight gain, however, was a problem and still is. I have nerve damage. I find when the weather is quite windy I get in more pain. I used to feel the affect of the meds on my nerves. It would be like a dull buzz. If you come off, you will be taken off slowly as you may have withdrawal symptoms. I did, but it did not take long to stop. Off Lyrica, I began to get nerve spasms at bedtime. The Lyrica might have masked them. I am now on Nortriptyline and the one good thing it has done is stop the nerve spasms.

My Husband and I were in a car accident a month ago. I have not been in great shape. Injured from the seat belt. No idea what more damage my neck has. I can still walk but for the past 12 years, I walk with pain. With the Osteoarthritis I have to keep moving some.

I hope you can figure out your breathing issues. After a flu a few years ago I had problems breathing. I was prescribed two meds - Flovent and Advair diskus. They both helped immensely. I had all kinds of tests with a Respirologist. A chest x-ray found, what was decided was a scar on my right lung. I had more trouble with breathing a year and a half ago. I started to feel like I could not breath at home. I finally noticed that our electronic air cleaner stopped working. My ducts were needing cleaning and we now use a regular filter that fits into the case where the electronic air cleaner was. I was given a sample of Advair diskus to get relief. It took several months to get the house in better shape. I think I do have a bad dust allergy.

I had to stop working. On LTIP, you must always be attempting to get better. I, unfortunately, keep deteriorating but I still try.

Take care.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 9/16/2014 11:44:46 AM (GMT-6)


Posted By : Abilene - 9/16/2014 3:09 PM
lila,
Welcome to Healing Well. You have found a wonderful support group here who have already helped you today and will continue with you thru your recovery.

I'm 30 years older than you, very different circumstances-my own thread is called Posterior C3-C4 laminectomy and fusion. You can find it using the Search near the top of this page.

I've quickly read what has already been said and want to tell you I am thrilled to read that your medical team is already in place, your surgery will be scheduled soon, and that you have recovery support in place also, although I guess your parents are already helping you a lot. That takes so much of the burden off you, so please let them and others help you. You want to be independent and get back to work. The best way to do that is to take it VERY easy and allow your body to heal. I expect you will get too eager and over do at times. We all have done that. Then you will need to learn from the pain you create and go back to taking it easy. Too Tall and I have both increased our pain by going to the grocery store and holding on to the cart we were pushing-that seems ok, doesn't it? But we both ended up in pain just from that action. You've been told no lifting for 6 weeks-double that, at least. That precious child can climb into your lap at some point before that for you to snuggle and rock. You won't have to give that up, but lifting will not be good for you. Neither will bending over or reaching up. A good comfortable recliner will be where you spend lots of time while recovering. It will support your neck and shoulders. Ice packs will also be very important. There's a thread here listing some items that have helped others after this surgery. I'll find that and bump it to the top for you to see.

I will have more info for you related to recovery, but ask away if you think of anything I might could answer now. Do you know if you will be put in a neck collar/brace post op? That varies greatly with different doctors. Material used for fusion also varies. Do you have the "bumpy road" pain now. Some of us have described that as our necks hurting with every rock our car goes over. Poplargrove noticed that was already gone on her way home from the hospital, I think. I noticed it in my first car ride at 2 weeks-great feeling to know that although I was still in lots of pain, something had been fixed! That gave me confidence that the other pain would also end. And it is ending-almost 9 months post-op, I'm very glad I had the surgery and I continue to heal.

My prayer for you is that the surgery will be scheduled soon and that you will feel peaceful in the decisions you have made for your care. I'm looking forward to joining you on this journey.
Sleep Apnea; Shoulder Impingement Syndrome.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue.
Knee and foot surgeries.
Breast cancer, mastectomy & tram flap reconstruction.
Thankful for my husband of over 40 years

Posted By : White Beard - 9/16/2014 5:35 PM
Hi lila W I have read your post and cringed the whole time! It reminded allot of what I went through back in 1985 and back then I was only in my thirties too! Yes your breathing problem could definitely be related to your herniated disc! You mentioned that the disc was pressing into your spinal cord! I am just curious why on earth did they not do surgery on you as soon as they found that out, especially with your symptoms. If you read back on some of my post, you will find that I had a similar experience, doctors giving me the run around for months, until they did a myelogram and MRI after they did those test and found out what they were dealing with, I all of a sudden became an (emergency) and required surgery right away! ( Funny how that works!)

Anyway I will not go into the details here, as I have written plenty about it in my previous post over the years. I will tell you I am glad they are going to do the surgery, it will be tough on you, this surgery is no picnic, but considering what could happen if you didn't have.......well that is just to scary to think about! Keep us informed of your progress, and just know that when your here on this forum you are family and we all care about each other! We might not be able to cure you, but we can lend you our ears and listen to you, and give you compassionate and caring support, and of course prayers!

You have a rough road ahead but we are here to help you through it! I have had three fusions in my neck so I can definitely empathize with you! Keep the faith and you will make it through this fine!

Good Luck to YOU!

White Beard
Moderator Chronic Pain
I retired from the USAF, in Sept, 1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg , I became disabled in late 1999 and was approved SSD in early 2002! Diagnosed with: DDD, herniated Disk at T12, L3/4; C3/4 Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF Mar 1985; Ulcerative colitis; Chronic Pain; Complex Sleep Apnea; and host of other things! I am White Beard with a White Beard!

Posted By : straydog - 9/17/2014 2:03 AM
Lila, I see Ablilene popped on & told you about the recliner. I hope you have one, if not, if there is anyway possible to get your hands on one before your surgery, you will not regret it. Even if you can borrow one for a bit. Trying to lay down & get up after surgery can be an issue & this is where the recliner comes into play.

There are numerous threads here that are recent which all have given input & tips on things to get before your surgery to have in place when you get home. You really need to take the time to check out these threads. It is good that your parents can help, also accept help from friends that offer. A lot of folks have done this alone with no family around to help out & the so called friends are no where to be found. You can repay their kindness later when you are on your feet. Let your body heal in order to have a successful surgery. Stay out of a car right after surgery too, if the dr puts you in a collar be sure to wear especially when riding in a car like to a dr appt. Abilene is right about the lifting, don't so it for at least 12 weeks. Lifting on the baby can potentially mess up what the dr fixed. Either have someone put the little one on your lap or let him climb up there, don't even attempt to tug on him either. When drs tell patients no lifting like yours did for 6 weeks, this is strictly text book talk, not reality with the patient.

If you can keep your head on straight & keep a decent attitude towards this surgery you will do well. You have been through surgery before so you know about post op pain. Shoulder surgery is a booger to recover from. This is why I think you will do fine. I know people that have had both of these surgeries & they have said the shoulder recovery was worse than the neck.

When you get home take all of your medications on a schedule do not attempt to do the as needed or I will tough it out. What will happen if you try to tough it out, the pain will escalate so bad that your meds will not but barely touch then it will be out of control & so will you. It will prevent you from being able to rest, get comfortable or sleep. These things are very important to your recovery. Our saying here after surgery is stay on top of your pain, not under it.

Take care.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : slowandsteadywinstherace - 9/17/2014 6:48 AM
Thank you all for your support and encouragement and also your words of wisdom!!! I really appreciate you all taking the time to lend support.
I laughed at the "bumpy road" question... (Yes.... I cringe at some of the roads around here... I'm in the NE part of the country and the roads are terrible lol) and I cried (happy tears) at the idea of having the baby climb into my lap to be rocked.... I hadn't thought of that. Such a good idea!!! I have a rocking chair in his room, so that should work just fine. I'll try not to rock....haha :)

I just received a call from the surgeons office. They wanted me to know they have the surgery listed as urgent. I spoke to my comp carrier yesterday and they are hopefully going to push this through quickly. I saw the surgeon for the first time, only 2 weeks ago.

You see, this is all pretty new.... I saw a neurologist for 8 months that thought I had a stretched braxial plexus nerve and diagnosed me with BFS (benign fasciculations syndrom)....

It wasn't until I decided to go see a massage therapist and chiropractor, that I was told the neck injury was serious.He explained what he saw on my MRI and EMG..... He sent me to see a spine specialist who then immediately referred me to the surgeon.

The injury wasn't handled correctly by the first neurologist I saw. Which really irks me.... How can someone in that field not see the correlation between my symptoms and the MRI images??? He told me the muscle fasciculations were benign. Even though I KNEW that they were somehow linked to the other symptoms. They are at their worst on my bad days. The last time I saw that Neuro, at that point my foot was showing the effects as well as my arms and hands.

Now that I'm slightly educated about what's going on, when I read the symptoms of cervical myelopathy.... it's as if you could put a picture of me, next to the description.... lol. The only thing I don't have yet, is diapers....... ;) ;) It's a textbook case, and I'm edit at that neurologist. For 6 months, he sent me for testing for all types of disease.... Als, MS etc..... What a waste of precious time. Especially considering that the longer you are presenting myelopathic symptoms, the worse your chances of recovery are.....

The other Dr I went to, took one look at it and said I need surgery and that no time should be wasted. And I was told prior to seeing him, that he is very conservative and doesn't suggest surgery quickly. But he did. Obviously he saw what the other Dr missed...... So I went to see the surgeon 2 weeks ago when he ordered new MRI to be done. On the latest MRI, the spinal cord on the right is deformed by about 50%, which is why he considers the surgery urgent.
It's been an absolute roller coaster.

For awhile I was told to just rest, then for awhile I was told I may have some degenerative neurologic disease..... I am at this point, thanking my lucky stars that this is a mechanical failure..... not something that may kill me..... Lol
I think that's why I am feeling overwhelmed with all of this.

I read the same thing about the shoulder surgery and the comparison to neck surgery..... Which is relieving!! The shoulder recovery was very difficult and it took me 7 months to get me arm working the right way again. I was also breastfeeding the baby at the time, so if I can get through that, I will get through this. I think my biggest challenge will be not overdoing it.....

The lyrica I just started, is sure making me loopy. Hopefully I adjust to it. It's definitely helping my pain, so I am willing to deal with the effects. I remember after having my shoulder done, needing to stay ahead of the pain.... So I will keep that in mind. I hate the loopy feeling!!!

My biggest concern at this point, is if these symptoms are permanent. I know that the surgery won't reverse the nerve damage, so my hope is that I wake up without weakness..... However, I am being realistic. I know it may take time. I just hope it's not more than 8 months or I will lose my job title and seniority. Maybe I am being UN realistic about my return to my job....haha. If football players can return to playing, doesn't that mean I could return to my job? Sure it's physically demanding, but is it not a good idea to do that type of manual labor for 20 more years?? Some of my Dr s have said I shouldn't continue in that field, or I will most definitely require more surgery and have a poor quality of life. The surgeon basically gave it a wait and see approach when I asked about the future of my job..... The uncertainty is the worst of this for me.

Thank you all again for spending time to reply. It does help to have others to relate to and I do feel like this is a little family.... Funny that technology can bring us together this way!!!

Thank you all so much......
Xoxoxo
Lila

Lila, I had to edit a word out in your post, the forum has rules about language. Since we never know the ages of who is reading our posts we have to keep it clean. Non members can view & read our posts too. Thanks

Post Edited By Moderator (straydog) : 9/17/2014 8:23:39 AM (GMT-6)


Posted By : Abilene - 9/17/2014 7:09 AM
Another of our members Scared 24 is also hoping to get back to her very physical job as a CNA. She is 4 weeks post-op now. You and she have a lot in common. No one can say how well you will heal, so the wait and see approach has to be taken. Really I would like to just say forget it, don't even consider it for your own sake so you can be comfortable for many more years and avoid more surgery. But then, those football players are there. So I guess you just have to make that decision later, and somehow try not to let it worry you too much. Stress will not be helpful for your fusion. Think Fusion is our motto.
Sleep Apnea; Shoulder Impingement Syndrome.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue.
Knee and foot surgeries.
Breast cancer, mastectomy & tram flap reconstruction.
Thankful for my husband of over 40 years

Posted By : slowandsteadywinstherace - 9/17/2014 8:55 AM
Lol.... THINK FUSION.... Got it!!!

Oh...and sorry about the language.... Didn't realize I had used a swear word..... I'm blaming it on the Lyrica!! ;) ;) lol

I will stay focused on my recovery and stop worrying about the job. It is what it is. I won't do anything that may be detrimental to my future. I want to hold my grandchildren.....

Thanks all
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : Abilene - 9/18/2014 5:46 PM
Well, I have to tell you that holding those grandchildren is very well worth the effort so you won't miss that blessing!!

I forgot to mention an important part of the recliner for me. The day I got home from the hospital I sat in my recliner with a remote like control. We thought that would be the easiest for me. A few hours later when some of those little darlings visited and I could not turn my head, I moved over to my husband's rocker recliner that also swivels and that's where I spent much of my recovery. It was so very nice to be able to swivel and see different things rather than strain or just miss it. With your young family I expect that would work very well for you, too. So I hope you have one or can get one. Also someone has mentioned putting a piece of tape on the arm of the chair straight above where the lever is to make it easier to find. My office chair and patio chairs have arms, high backs and also swivel so they have been used a lot, too. I never knew I was such a fan of swivel chairs until my neck got stiff.

I'm sorry it took so long to get a proper diagnosis. Many on this site have also been sent the wrong direction first. My chiropractor is who sent me to a surgeon so I'm thankful for him doing that rather than trying to keep on treating me when it was not helping and could have hurt me badly. I'm glad to know your chiro is also helping you.

The thread- Useful items for ACDF post-op- is on the first or second page now. I hope you get to read that and add to it as you learn what helps you. Our little family here likes to help each other however we can.
Sleep Apnea; Shoulder Impingement Syndrome.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue.
Knee and foot surgeries.
Breast cancer, mastectomy & tram flap reconstruction.
Thankful for my husband of over 40 years

Posted By : slowandsteadywinstherace - 9/19/2014 7:33 AM
Thanks Abilene!! Good idea!! We have a recliner, and it's really soft and big, but it doesn't swivel. It's probably good for sleeping (maybe) but not for daytime use. I think my parents have one that swivels that I can borrow :)
I was on the phone all day yesterday.... The surgeons assistant, the case manager, the surgeons nurse, the scheduling department and my employer, all called me.....
Ugh!!!! Hahaha :) I was wiped out by the end of the day!

I think I am getting used to the lyrica. I didn't feel so dizzy this morning. The nurse suggested I take it a couple hours before bed, instead of right before I lay down and it must have made a difference. I don't feel as weird today :) I am supposed to start another dose 2x a day instead of just bedtime, but I am home alone with my kids today, and I'm nervous to take another dose. I was thinking I could wait one more day, and do that on a day my husband is home. That way I am not doped up, alone with my children. Not sure if I will fall asleep from it. It shouldn't hurt to wait one more day to up the dose does it?? I would call the Dr, but honestly.... I don't have the energy today, to be on the phone one more minute with them...lol..... Yesterday was enough. I should have remembered to ask them....

Apparently the surgeon has coded the surgery as "urgent" to my employer. They said when someone is myelopic, they want the carrier to know it's necessary and to not drag their heels. I guess a spinal cord deformity is urgent right??

I spoke to my HR rep and she told me they are escalating to process of getting everything approved. This surgery is expensive so I hope attorneys don't need to get involved. They are sending the surgeons reports to an IME for review. Hopefully it's done by next week..... It's kind of scary being at the mercy of a Dr approval. Now that I know what's wrong and recognize the symptoms and serious nature of the myelopathy, I don't want to waste anymore time getting it fixed!! My employer has never denied anything before, so I hope they don't start now....lol. They even paid for the testing when the neurologist was looking for MS and ALS etc... I'm sure they could have denied that if they wanted to. Those things would have had nothing to do with a work injury. Even though they have been incredibly fair, I am still worried they could deny the surgery. Can they do that??? Trying not to worry.....lol

The first neurologist really gummed things up and confused everyone, so I'm sure they are wondering what is happening too. I went from being diagnosed for an entire year with a stretched braxial plexus nerve and benign fasciculation syndrome - to having disc herniations and myelopathy and a major spine surgery in a matter of 2 months. With spine Drs wondering why I am just coming to see them....lol. My case manager looked through the neurologists office notes, and she said he hardly mentioned a cervical herniation.
I really don't blame my employer one bit for questioning what is happening and wanting a second opinion. Thankfully I have a second and third opinion as well.... :)

As usual.... Thanks for the advice!! Hope everyone here, is having a pain and symptom free (or at least slightly free) day..... :)
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : Taller Now - 9/19/2014 10:09 AM
Lila,
Wow, your story and issues are very similar to mine. My neck collapse was also started by really bad whiplash in 2005 followed by several hard falls (one made me have low back surgery for ruptured disk). Short story, I had all similar symptoms, they also thought I had MS or spinal tumor (that was 5 years ago). Fast forward to 2014, I lost 1/2 inch in height in 2 months. I could barely walk, weakness in legs arms etc. massive ER headaches etc etc. doctor said I needed my whole neck fused but can't do that. So had to pick most critical ones. All of my cervical disks are/ were herniated from C2-T1. Two vertebrates were pushing on my spinal cord - clearly seen on MRI - like wow! And two were forward. Tons of bone spurs impinging the nerves in the foraminal areas on both sides at all levels.

I had C4-7 ACDF with extensive clean-up of bone spurs (so much that they used 100% of my own bone for fusion areas) and straightened out my vertebrate. I have a plate and 8 long screws. Surgery was long and according to my awesome neuro it was also complicated BUT all of my pre surgery symptoms are gone! And unlike my low back surgery where they waited too long and now I have permanent nerves damage, I have fully regained use of all the parts of my body that were dysfunctional from the pressure on my spinal cord.

I won't lie, recovery is long and hard, but if I hadn't had my surgery I was told I would be in a wheel chair. I am a biologist and fit and active climbing up rivers my whole life (56 years old now so less now). I have the hope now of getting my life and activity back! You may want to get other neurosurgeon advice. And it is worth finding the best neuro you can. But they can make you better. And you are younger than I so I am sure your recovery will be better too. I also have bad osteoporosis making the success of my surgery less likely but I have already started fusing after 3 months. I wear a bone fuser 4 hours a day. You can look up my thread if you want to know more.

Wishing you wellness and fusion 🌀🌀🌀🌀
C4-7 ACDF - 6 " vertical incision:plate, 8 screws: spurring all levels & both sides, loss of disks, & vertebrate pushing on spinal cord and out of alignment.
Osteoporosis discovered after ankle fracture
DDD all levels / lots of herniated disks
Failed L5/S1 LD surgery - chronic pain & numbness
Hysterectomy (all of the above the past 6 years)
Migraines, poor immune system
Fit and active until 2013

Posted By : slowandsteadywinstherace - 9/19/2014 11:18 AM
Haha.... Now I understand your screen name.... Taller now.... Lol. Good one ;)

Hearing your story gives me much hope!!!! I am so concerned about the myelopathy not going away, but sounds to me like you are doing exceptionally well, so I hope I have the same results. :) My neurosurgeon has proposed 3 levels as well. He said that could change when he gets in and has an actual visual of what's going on in there. I have a large mass of herniation deforming the right spinal cord, and the nerve roots on that side. Moderate stenosis of the canal in those sections due to the deterioration, so that's why I am presenting more on the right than the left but on both sides.....

Hopefully once the pressure is gone my symptoms are relieved.
It was a long few months thinking of neurological diseases wasn't it???? I was really worried for awhile because of the muscle fasciculations. They are so strange and unrelenting. Really maddening in a way. Seeing my muscles twitching and spasming everywhere was, let's just say....unnerving....

The first neurologist was so sure they couldn't be from a cervical issue..... He hardly even discussed my neck. Ever. And with my age, I figured now would be about the time for MS to show up....
Even though the Dr's I have now, have reassured me they are almost definitely due to the spinal cord injury- the thought still lingers......

I actually did get multiple opinions. I spoke to my orthopedic surgeon as well. When I tried to get a third opinion from another neurosurgeon, they asked who gave the first 2. When I told them I had Kevin Gibbons , they told me I was wasting time. Most surgeons know of one another and apparently they all respect the guy. Apparently he won't do surgery unless necessary. I spoke to my primary and asked who he would recommend and his first choice was the surgeon I've decided to go with. (That was without knowing I had seen him haha)...so..... I think I've made the right decision and he is at the top of his game. He teaches for UB and is the chief of neurosurgery at the best hospital in my area. His bedside manner is typical of most surgeons.... Haha (no offense to the surgeons here).... But he is top of the league and I would rather have that- than a surgeon that is warm and fuzzy, but lacks talent..... Does that make sense?

And has anyone noticed the same thing?....why are surgeons not the best at bedside manner?? Almost every surgeon I've ever met was like that. A friend of mine is a nurse and she thinks it's a "God complex".... Lol. Maybe when you are that smart, you are also a bit weird....lol.

aren't we all though??

Again.... No offense to anyone.... :)

So glad to hear you are doing much better Taller Now!! I hope you continue to progress and have peace..... Thanks for the encouragement. I need it.... :)

Lila
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : White Beard - 9/19/2014 7:24 PM
Hi lila you know I always compared surgeons, to pilots, and neurosurgeons to fighter pilots. (They also were cocky and full of themselves!) But to do that type of job you have to be highly skilled and trained and sure of yourself and your abilities,....... really self confident! With the fighter pilots your life and the lives of others depend on it! Having worked in flight simulators quite a few years in the Air Force I got to know a few of the pilots, the fighter pilots were just like many of the neurosurgeons I have met! I think this also is true of neurosurgeons, when they are cutting into your skull and doing things to your brain, or your spinal cord, if they do something wrong........well you know what the consequences could be! So yes I think allot of them do have that superiority complex! !You know I have only met one neurosurgeon in my life that was not cocky or have that "God complex" The neurosurgeon that did my last two spinal surgeries, he is such a gentle and very soft spoken and extremely polite and compassionate person. And really an exceptional neurosurgeon besides! But he was the definitely the exception to the rule! The other ones I have had, had unbelievable egos!

White Beard
Moderator Chronic Pain
I retired from the USAF, in Sept, 1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg , I became disabled in late 1999 and was approved SSD in early 2002! Diagnosed with: DDD, herniated Disk at T12, L3/4; C3/4 Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF Mar 1985; Ulcerative colitis; Chronic Pain; Complex Sleep Apnea; and host of other things! I am White Beard with a White Beard!

Posted By : slowandsteadywinstherace - 9/20/2014 6:07 AM
Lol White Beard..... That sounds about right!! I'm glad I'm not the only one that noticed that.... They've got to have an ego, to be confident enough to cut into someone's brain or spine..... They should have to go through bedside manner training or something.... ;) hehe

I've tried to be realistic about what to expect from a surgeon. Like I said previously.... I would rather have a surgeon with the God complex that is at the top of his game, than a really sweet, compassionate one, that doesn't have the credentials I want to see....

Sounds like you lucked out my friend :) since your odds are good, you should go play the lotto.... Seems to me, we have a better chance at winning that, than finding a surgeon like you did!!!

Thankfully my neurosurgeons team make up for his lack of bedside manners. I deal with them, more than him anyway. I'd still rather have him holding the knife, regardless of his ego....lol. He's entitled to have an ego I guess... :)
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : Abilene - 9/26/2014 6:28 PM
Hi there, I'm just bumping this to the top for Coti who needs some of the same information you needed. Hope you get your surgery scheduled soon.

Posted By : slowandsteadywinstherace - 9/27/2014 6:13 AM
Me too Abilene. I spoke to the case manager yesterday, and she told me they have 10 business days to send the reports and surgeons notes to the IME, who will then either agree or disagree.

My surgeon assured me that any competent Dr, will have to agree because the standard of care for spinal cord deformity is surgery.

I also decided to call the old neurologist office and discuss why the Neuro never actually read the original MRI that he ordered. I looked at the images and you can clearly see the deformity in the cord, but his assistant said that sometimes they just go by what the radiologist said without actually looking at the images.....???????

The reason for my confusion, is that I presented with myelopathic symptoms over a year ago, and he insisted this was a stretched braxial plexus injury. If a patient is presenting with abnormal neurological signs, wouldn't he want to look at the the darn images. Especially after a year where symptoms were progressing. I am so discouraged.

I am concerned that the damage may never heal because the cord has been compressed for so long. I just want the symptoms to go away and feel better!!!!

It's been a long week and the lyrica is still affecting my balance, so I'm stuck at my house, unable to drive and unable to do the things that need to be done around the house. It's really frustrating....

End rant..... Lol
Cervical herniations c4, c5, c6, radiculopathy, myelopathy, stenosis and nerve root impingement and cervical kyphosis.... Off work since June 2013..... Proposed 3 level acdf awaiting comp approval.....
Trying to find the bright side ;)

Posted By : Abilene - 10/8/2014 12:52 PM
Hi lila,
Hasn't it been 10 days and time for a decision? I hope you have some news by now.
Coti is back and seems to be doing well post-op but probably too eager to get moving, like most of us.
Sleep Apnea; Shoulder Impingement Syndrome.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue.
Knee and foot surgeries.
Breast cancer, mastectomy & tram flap reconstruction.
Thankful for my husband of over 40 years

Posted By : JakenGess - 7/11/2017 9:41 PM
Hi 'slow and steady'

I have a question. I have a disc herniation and also bone spur compressing my central spinal cord at two levels c4-c7. Recently diagnosed but haven't seen neurosurgeon yet. My question is, occasionally when I have a bad day, I get left shoulder and collar bone pain, like a heaviness, sometimes even pain wrapping around to my chest at a lower level. Been ruled out for MS, normal MRI of brain, seems to all be related to spine and discs. Hard to describe but I worry if that is a symptom of the cord compression or just muscle spasms??? Or is it just me making it worse in my own mind??? Is this nerve pain or spinal cord compression also??? They say well if you lose bowel/bladder function to go to ER, I want to say really?!? No kidding! When my pcp evaluated my left arm pain all my reflexes were intact, and strength wise I am equal. But at what point do they get worried? Are these bad signs before the reflexes go? What is the progression of symptoms for spinal cord compression. My arm pain is described as like a muscle fatigue feeling. Like I have been lifting weights and now I am spent, but without actually doing anything. I think loss of function is the worse of the worse and usually symptoms precipitate before this? Are these those symptoms??



Anyone have any thoughts???

Posted By : straydog - 7/12/2017 7:41 AM
J&G, you have brought up an old thread & the only two members on it that are still in the forum is WhiteBeard & Abilene. You will get a better response by asking all questions in your original thread, people tend to not look at the old threads, lol.

The symptoms you are describing on a bad day are typical signs of the your neck problems & muscle spasms. I use to get spasms so bad in my chest had I not known better I would have thought it was my heart. You are not imaging none of this, its not your mind working on you at all.

People with neck issues can have a variety of symptoms such as what you have going on, they can have zero neck pain & have pain in a shoulder & pain down their arm, some have arm pain & tingling in certain fingers, or even lose strength in their hand & arm. It really is not a one size fits all thing.

My son has problems at 3 levels with a spur. He had zero neck pain but let his arm get in a certain position & all he!! broke loose. The pain would get so bad he said if I could cut my arm off the pain would go away.

Hang in there.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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