4 months after 3 level acdf. my story. ugh!!

Hello all. Long time no see!! I'll apologize now for how long this is. Understand if you can't read all of it!! :)

I suppose I was naive about how long this was going to take and am starting to come to terms with the fact that my life and my body, will probably never be the same.
I've been busy trying to recover from my 3 level cervical acdf. I'll give a timeline of events since its been awhile that I've been here. :) I thought I'd be moving along quicker than this and was focused on physical recovery. I think it's time for some mental recovery.

I'm 35 female. Mother of 3. Work(ed) full time as a natural gas technician. heavy labor and lots of driving. I am 5'4" and now weigh 120lbs. Before this all started I was 135-140lbs. In good shape.



Had 2 accidents in my youth. Had xrays and was advised I had "whiplash" both times but never MRI. Hit by car at 12 years and put my head through a windshield in a head on collision at 16. Wear seatbelts kids!!!!! ;)
But recovered without incident (I thought) or injury.

2011 blew out labrum in right shoulder while repairing a gas meter setting. Had weakness and pain in shoulder and hand and burning pain under shoulder blade. Testing revealed a torn bicep labrum and scheduled surgery (discovered during preop tests I was pregnant with our 3rd child... You gotta be kidding me...oops....haha).
Surgery was postponed until he was born, so did 9 months of PT to keep shoulder from freezing. Had SLAP and rotator repair done 6 weeks after baby was born. Breastfed while wearing an isolation sling for 6 weeks. Good times ;) Did 7 months of PT to return to work full duty.
june 2013
Working on large repair with 36" pipe wrenches. Heard pop in what I thought was my Shoulder. Arm and shoulder became super sore and weak. Tingling in my fingers. 2 days later couldn't take it and went to urgent clinic. Thought I had blown the shoulder again. They slinged the shoulder and I went to my orthopedic surgeon. Tests revealed a normal shoulder and the anchors were still in place. He felt it was a nerve injury and referred to a neurologist.
While waiting for my appointment, it took about 2 weeks to get in, I suddenly became incredibly tired. Started having fasciculations widespread, couldn't even walk into the backyard without feeling the need to sit. It was July and 80° outside, but my hands were freezing. Had dizzy spells and moments of vision issues.

By the time I got in to see the Dr I wasn't feeling so great. He ordered a battery of tests. Emg, cervical MRI, brain ct, full blood panel etc.
the weakness was worse on my right.
When I went back for results, the neurologist said he was concerned about the fasciculations, that I had some degenerative issues in my spine, but nothing that would explain the fasciculations. There was some abnormality in the emg, that didn't correlate with the MRI.
More tests. He sent me to his colleague that specializes in emg and disease like ALS. She determined I had benign fasciculations syndrome. The neurologist thought I had an injury to the braxial plexus. Prescribed only rest and time and took me out of any work.
6 months goes by and no relief. By this point I started having pain in my right foot. At night my arms seemed to posture and would curl up into a tucked position. My husband kept noticing it and would tell me to straighten them out at night...hehe. such a good guy I married ;)
The Neuro prescribed splints for that, while scratching his head about my symptoms....to keep my wrists from bending at night. Idiot...
I requested PT because I thought I needed to keep moving. I did one day of that and the therapist did a lot of neck motion and the next day I could hardly move. My neck was screaming and my weakness and fatigue was worse. Talked to the Neuro and he said no more PT for now.
I finally requested massage therapy because the muscles in my upper back and neck were super tight. My reflexes were hyperactive and I had muscle adhesions.
I started massage therapy and the Dr there (a chiropractor) requested to see the MRI because my range of motion was terrible and nothing was moving correctly. He was also concerned about the fasciculations but said they COULD be coming from the spine. So confused now!!
He showed me 2 very large cervical disc herniations and a reversed lordosis in my neck while reviewing the MRI. He suggested a second opinion from a different Dr.and wouldn't do any work on my cervical spine.

I took the MRI to a spine Dr who left the room for about 30 minutes and came back saying he was referring me for urgent surgery to a neurosurgeon.
I got one of the best around. He is the chief of neurosurgery at one of the best teaching facilities in my area. But his staff is awful, his bedside manner is very abrupt (Learned this over time). Most surgeons seem rather callous to me...lol
He looked at the original MRI that had been done 18 months prior and said the cord was being compressed and my spine needed to be stabilized. He at that point said 2 levels. Ordered an updated MRI and changed it to 3 levels after reviewing the new one. Apparently things had gotten worse. Sweet.

Surgery was immediately approved and 19 months after that pop I felt, I had acdf with hardware placed.
I am 4 months post op. The surgery apparently went well. I noticed immediate relief of the fasciculations and numbness in my hands. The burning pain under my shoulder blade got slightly better. Was in a hard collar for 3 months and was allowed to start PT at that point. Next appointment with imaging with my surgeon is in May.

A month ago I started having urinary urgency again (I feel it come on very quickly and can't hold it for long once that sensation occurs, have some GI bleeding and am scheduled for a scope and colonoscopy in 2 weeks, the pain in my hand and foot and shoulder blade have returned. And I hate to even admit it, but the fasciculations have returned. Not as bad as they were before, but they are there.
And it scares the heck out of me... I hate them. They are beyond annoying and worrisome. Are they a cord injury or NOT??? I've seen so much conflicting info and the Drs do not agree.
My surgeon is really useless in regards to continuing issues. He is one of the best in my area. But his staff is ridiculous. 3 weeks after the surgery, his head nurse made the mistake of telling me I shouldn't be in pain anymore. Boy did that confuse me and make me doubt everything. And this is a teaching facility!! idiot ;) lol. They suggested pain management, but I honestly hate taking medication. I am super sensitive to it. I am supposed to take lyrica, but if I take the full dose, it leaves me feeling drunk. More drugs, unless someone can explain the benefit and not just masking pain, doesn't settle well with me. I don't like pharmaceuticals. But am willing to take them if I can see a benefit to recover. But not just mask things.

I am going into my 5th week of PT. Which is not moving as quickly as I'd hoped. My therapist is awesome and is trying to get everything from the feet up functioning first. My gait was slightly effected and 2 years of literally no excersize has taken its toll on my body and condition. I feel like an old lady.
My neck is in worse pain than before the surgery, and I believe it's because they fixed the lordosis issue and the vertebra below it are angry about it. My discs and ligament had calcified and they restored the curve. And 3 weeks after, I'm apparently not supposed to be in pain??? Hahaha!!!
I seem to have little tolerance to any type of exercise and the fasciculations come on worse after a long pt session.

It looks like I've been working out. I'm super toned and you can see my six pack (remember I'm a mother of 3), and I have literally done NO excersize in almost 2 years. No lifting, cardio...nothing. I feel spastic.
I was advised to rest for the first year and am on workers comp, so I didn't want to do anything that could hurt myself further.

I decided to seek the opinion of an entirely independent neurologist. I'm starting to think a MRI of my lumbar and thoracic is needed.
The surgeon, the first neurologist and the spine Dr, are all affiliated and I feel like nobody has taken the time to look at the big picture. I called the surgeon the other day and spoke to his nurse.
I explained the urinary urgency and GI bleeding and she said that urinary and GI problems arent from the cervical spine....??? I thought it could be?? Am I incorrect or is she an idiot??
Remember this is a teaching facility associated with the university...
That or they did see the whole picture and they are afraid of a lawsuit against the original neurologist, whom they refer to and don't feel they should educate me about this condition or what these symptoms are about??? Why don't the Dr s explain that this is a spinal cord injury??

I'm so uncertain. Are these symptoms from my spinal cord healing? A disease?? permanent?? What is going on with me???

I've been left to wonder if this is actually some sort of neurological disease like MS or something. How could there be such a difference of opinion? My neurosurgeon and spine Dr say the fasciculations could be a symptom of the disc and spinal cord injury, but the original neurologist insisted it couldn't. And don't go online and try and figure it out. It's scary!! I'm walking a fine line between needing to be educated and knowledgeable about my condition, and feeling like every time I search the net, I may be dying of a neurological disease or something. So why are the fasciculations back??

I know these questions really are hard to answer and prognosis is subjective. I'm so tired of all the uncertainty. Like really REALLY tired. Tired of the pain and not being able to carry my baby boy on my hip. He is 3 now, and I fear I will never be able to carry him the way we moms do... I'm disheartened and starting to be angry about what happened. All normal. I know.

And to top it all, I was just advised by my case manager at work, that unless I get released to full time, by June 6th, my contract will be terminated. My PT thinks it's incredibly unlikely and I should prepare to start looking into a new career. Sigh....

I'm looking for any advise or opinions. Maybe some empathy... lol.

Does anyone here have a similar set of symptoms?
I'm really in the need of some ideas and support. I feel completely alone in my quest to understand the injury and symptoms. I'm really hoping the neurologist I see on Monday can give me in site, but if anyone here that has experienced this, wants to chime in, I'd really appreciate it. I'm trying to stay positive and optimistic, but man this is really starting to take its toll on me.... I really hope the constant pain and nerve symptoms go away...

Thanks all.
let's keep hope for all of our health and wellbeing.

Lila

HA! I realized that you're lila from SH. I wrote you back tonight, so I won't duplicate it here :).

It is quite a roller coaster ride. I'm ready for this one to stop!

(although I love roller coasters, apparently I'm not riding one any time soon)

Thanks for writing to me earlier. I am so sorry you are having a difficult time. Hope you have answers soon.

You are only 4 months out from a three level fusion surgery. From what you have written, it appears that you may be experiencing a flare up of nerve related pain, which is quite common for anyone who has spine surgery due to compression of the nerve roots or cord impingement. Things seem to improve for several weeks post op, then there is a return of nerve symptoms which can last for a few days, to weeks and even months in many cases, only to resolve over time as the nerves recover. Nerve recovery can take up to two years in some cases. It is far too early to determine that the return of some of your symptoms are permanent or a spinal cord injury.
Recovery from fusion surgery, also can take a year or more, depending on how the fusion progresses. Spine surgery is a marathon, not a sprint, and you will find that in the first 6-9 months, it is often one step forward and two back, at times, and as more time passes, and you continue to work hard at recovering, you can look back and see the progress.
The urgency issues may be related to something going on in your lumbar spine, rather than having anything to do with your cervical spine at all.
As far as the Lyrica goes, it takes a few weeks for the majority of side effects to disappear but once they do, it is a very useful medication when it comes to managing nerve related pain and symptoms, so if I were you, I would continue taking it, knowing that the drunken feeling will disappear once your body acclimates to the dosage.

Post Edited (mrsm123) : 3/29/2015 9:12:14 AM (GMT-6)

Lila,
As far as the Lyrica goes, we're you slowly tapered up in dose strength or did they increase it more quickly? Lyrica is funny, in that in many people, going up in dose by more than a small dose increase at a time is too much for them to handle. There are other medications that also work well for nerve pain, gabapentin, Cymbalta, amiltryptaline and a few others that you may tolerate better.
A consult with a neuro isn't a bad idea, but remember ,your body and especially the nerves are still in the early days of recovery, so where you are now is not where you will be in three or six months from now. The reason the tell you they don't know is because there is no define answers at this point. It's too early in your recovery.
I would defiantly check into the lumbar issues and perhaps thoracic if nothing shows on any imaging.
An emg at this stage is too early to tell what the nerve recovery would be, so I think I would hold off that for a few more months and give a different nerve pain medication a trial.

Unfortunately, all medications have side effects, with most of them disappearing over the course of a week, with regular dosing. Are there neighbors or family friends who can drive the kids to school while you adjust to the medication? No matter which nerve pain medication, your body is going to have to adjust, and dosages may need to be adjusted in order to let you see the benefit of using them.
With Lyrica, some people need to go very, very slowly, using the lowest dose, and increase the dose over a weeks time, rather than a few days...gabapentin is much the same way, although the dosage range is much bigger.