Hello all. Long time no see
I'll apologize now for how long this will be... Lol
I've been busy trying to recover from my 3 level cervical acdf. I'll give a quick timeline of events..
I'm 35 female. Mother of 3. Work(ed) full time as an emergency 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. Did 7 months of PT to return to work full duty.
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. 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 neck injury and referred to a neurologist.
While waiting for my appointment, it took about a week 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.
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 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??? grrrr.... :P
My surgeon is really useless in regards to continuing issues. 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. 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 normally 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 and don't feel they should educate me about this condition or what these symptoms are about. 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!! So why are they 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.
I'm looking for any advise or opinions. 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 need a Headrest For My Soul.
let's keep hope for all of our health and wellbeing.