[lila]

#19521

Hello,

I will try to sum up my situation as briefly as possible. As I’m sure you understand, it’s hard to do sometimes.

I am a 35 yo female. I did heavy manual labor as an emergency gas technician. I am 5’4″ and 125 lbs. In good physical shape other than these issues. Have 3 children. Now age 3, 4 and 13.

In 2011 I had a SLAP tear to my right shoulder during a pulling/fall accident at work. Had surgery but had to wait because we found out we were expecting our third child during preop testing, so I stayed in PT through the pregnancy and surgery was postponed until after delivery in Feb 2012. I returned to work 7 months later to full duty, but still had burning under my shoulder blade that never went away.

June 2013 was disassembling a large meter at work and heard/felt a pop in my neck or shoulder, not sure which, when the 36′ pipe wrench I was using, slipped off the pipe.
 I thought it was my shoulder because my arm felt tired and heavy and my hand was weak. After 3 days it never went away and I requested to see the doctor.
My orthopedic surgeon that did my shoulder surgery, had imaging done and found my shoulder and anchors ok. He felt it was a nerve problem.

I started having wide spread muscle fasciculations around 4 weeks after I first hurt myself and was very fatigued. I decided to see my GP as well, to get his opinion. 
 I had episodes of dots in my vision and dizziness. My physician was concerned and I was referred to a neurologist. By the time I saw him, I also seemed to have a hard time regulating my temperature. It was summer and I was cold to the touch. Especially my hands.
Trying to describe all these things proved difficult. I felt very strange for the first 2 months. I kept saying I felt weak. I could barely walk into my back yard without needing to sit down. I felt overall sick.

An MRI of my brain and cervical spine was done as well as emg and blood work. The Dr was concerned about ALS but those tests were normal. Although I did have an abnormal emg suggestive of nerve dysfunction in my right arm.

Eventually the neurologist concluded,  I had a stretch injury to my braxial plexus. I was also diagnosed with benign fasciculations syndrome. That explained the fatigue and fasciculations. It seemed strange that all the symptoms had started around the same time, but I was told stress could bring on benign fasciculations syndrome. However I didn’t feel overly stressed when the started. It just didn’t seem to add up.
All he said about my cervical spine,  was that there was some degenerative changes and unless I wanted injections, he didn’t think it was significant, because my neck pain wasn’t bad. Just really stiff and loss in range of motion. I certainly didn’t know how to read the MRI, but sure wish I had done my own research instead of relying on the Dr. to explain it. 

Over a year went by and I was still out of work. Eventually the dizziness and vision issues subsided. I tried PT but the first day I went, the therapist did a bunch of bending and stretching of my neck and the following day I could barely move it and my symptoms were escalated. My neurologist advised me not to do any more PT for the time. He prescribed rest and muscle relaxers, that I didn’t like to take and didn’t stay on them. 

I requested massage therapy at that point. My fingertips were tingling, I had stabbing pain under the shoulder blade still, a lot of muscle fatigue and tension, tingling/crawling in my right foot, my hands were cramping and my arms would posture when I was at rest. The fasciculations were pretty constant.
 The neurologist prescribed hand splints to keep my hands and wrists straight while I was sleeping. I felt tight all over. I kept thinking that in time they would eventually diagnose me with some sort of neurological disease that was presenting in a slow or strange fashion…

I was told by the Dr at the wellness clinic handling my massage and deep tissue therapy,  to get a 2nd opinion from a different specialist, after he looked at my MRI for me. This was a year after the injury now.
I saw an orthopedic spine Dr who referred me to a neurosurgical consult, on the first visit I saw him. He was very concerned about my neck.
I saw the neurosurgeon, whom is well respected and the chief of neurosurgery at a main hospital in Buffalo, shortly after that and he looked at my images and testing and immediately proposed an acdf surgery to stabilize my spine.

Apparently I had issues in my neck. I hadn’t fully understood. 

The neurosurgeon states this under review of imaging:

Sizable disc protrusions deforming the spinal cord more on the right, 
 a slight signal change immediately at and below the c5/6 level and a reversal of lordosis at c4/5 c5/6 c6/7 with degree of sublaxation.

I also had other tests to rule out disease and he felt the complaints were definitely related to my neck.

The surgeon requested an updated MRI and then suggested a 3 level due to a worsening of condition. The discs and ligament were calcified etc. Third disc had gotten worse and he felt it was necessary.

Everything was happening so quickly then and I had been out of work for 18 months. I was really needing to get back to work for financial reasons.
I was told surgery was being requested as “urgent” and I was risking permanent injury if I waited. 
I had thought I had an arm injury and some neurological disease. It was rather overwhelming. I didn’t want to wait, due to the tone and urgency expressed by the Drs and also it was a work injury, and I didn’t want to do something against doctors recommendations and risk complicating my case further with my employer.

I also started to experience urinary urgency but didn’t understand it at the time. Didn’t associate it and nobody ever really discussed it or questioned me in detail.
I was diagnosed with cervical myelopathy and underwent a 3 level acdf with hardware and fusion for c4-c7 and correction of lordosis and sublaxation Nov 25 2014. The calcified disc and ligament was dissected. The surgeon said everything went well.
My hospital stay was bad. I was unassisted ringing the bell for over an hour vomiting in a hard collar the day of surgery. I had a bad reaction to the meds and nobody seemed to listen to me regarding my sensitivity. I opted to leave the following day.

I was heavily medicated for the first 2 weeks. My husband helped me keep track of doses and times.
 I was prescribed cyclobenzaprine, oxycodon, lyrica etc. I don’t like pharmaceuticals though and don’t do well on them. I seem sensitive to most. So I normally avoid them if possible.

At first the symptoms seem to feel better. I came of the oxy at 2 weeks. Didn’t bother with cyclo because it didn’t help much. Stayed on a low dose of lyrica for 3 months. I was also kept in a hard collar for 3 months and the surgeon has said “a lot of work was done”. Still had pain in the shoulder blade. I had a shelf or lump in my throat, and still do. I was told it’s the nerves which make sense.
New and worse pain in my neck though. A stabbing, awful, deep spine pain. Every time I turn or strain or move it. It’s constant.

The fasciculations returned after I came off the medication to assess my symptoms and start PT at 3 months. I was discouraged and my therapist said we had months of work to do after assessing my mechanics. He kept me optimistic though. I enjoyed feeling my muscles doing work outs again. But it’s different than reconditioning. 

 I have balance issues and muscle memory problems in my legs and arms. Subtle but there. My right foot aches and tingles.  My hands are weak. Worse on the right. My thumb and index finger spasm and pull towards each other, my middle finger goes numb, Worse on the right.

 I still have an overwhelming fatigue that I don’t associate with deconditioning. There’s more to it. I worked out for years and also spent months in pt. I know the difference. This is muscle fatigue from overuse. Even though I’m not exercising other than light PT and walking.
I have urinary urgency. I also had GI bleeding and hemorrhoids. When I called to discuss it, the surgeons PA told me urgency isn’t from my condition. Which confused me. Apparently she wrote in my notes, she told me it was probably a UTI, although she never did. This is not a UTI I’m describing. I had a few of those in my younger days. I know the difference.

 I believe I have a subtle degree of spasticity and test positive for Hoffman’s and babinski in all extremities and have hyperactive reflexes still as well.
 I seem to have increased muscle tone in my arms. The doctors always comment that I have good strength, although I feel completely weak. Or fatigued.  I do have confirmed weakness of the hand and foot muscles though. Slight gait abnormalities.

I’ve lost some weight and am not sure how. I look like I am working out even though I have done NO real exercise in almost 2 years now. It seems my muscles are always firing. I’m toned for no reason.

My surgeon seems very dismissive and I’ve only seen him personally 2x since surgery. Once in the hospital, again at my 2 week follow up and once last week for my 6 month follow up. I’ve heard this is normal, although I’m not exactly comfortable with it. With as many questions and concerns as I have, I wish I was actually speaking to him more.

He only spent 20/25 minutes with me this last time and I was still asking questions as I was being ushered out of the exam room. I didn’t have a chance to ask him much and he said I will come back in August. He gave me a release to work part time, although we never discussed my limitations or complications, which caused a lot of confusion because the neurologist I just started seeing, my orthopedic spine Dr, my primary and my physical therapist all tell me I should not attempt to work right now. I don’t have control of my pain, sleep or fatigue and am barely maintaining daily living for my family.

The worst part of it has been the extreme pain in my neck. The surgeon has not been of much help explaining it. I have asked about it every time I see them. They just say a lot of work was done and it may take time to heal. 
The pain in my neck concerns me because I didn’t really have much neck pain before and it is now 6 months post op and the pain takes my breath away still. I awake in pain and many times I need to lay down to take the pressure off my neck. I don’t sleep well at all. Every time I move my neck, it hurts, even on medication.
I’ve been in PT for 12 weeks now. I feel plateued and have a sensation of exercise intolerance. The PA at my surgeons office, just said therapy can be hard work… 
 Although my therapist had faxed them a report explaining all my limitations and a request for extension of visits.
The surgeon did regular xrays too and says it looks good, but that’s it. 
It looks good.
They seem to disregard my other complaints or concerns. I’m not even sure if I’m fusing because nobody has looked at the images with me.

I sought a neurologist to try and help me with the pain and fasciculations. I got the feeling my surgeon was not meant to address these problems.
 I have only seen him 2x so far and he seems a tad overwhelmed with my file. Although willing to spend time with me. The first appointment he spent over 2 hours with me. He is only beginning to understand my situation though. He mentioned I have a peripheral neuropathy… ?? Isn’t that different than cervical myelopathy?? He thinks medication is the way to go right now and that the surgery can cause neck pain worse than before, but surgeons don’t usually tell you much about that.
He did start me on a high dose of lyrica again to try and shock my system to think a lower dose is easier to handle and requested a new MRI. 

The latest MRI report states:

Vertebral bodies appear normal in height and alignment. Metallic artifact consistent with anterior plate and screws c4-c5 through c6-c7. Slightly eccentric. Marrow signal otherwise unremarkable. Cord normal in caliber. Craniovertabral junction unremarkable.
 There is generalized disc dissection. Left foraminal narrowing c3-c4 due to bony spurring.

Impression
Anterior fusion c4/5/6/7 with no stenosis identified.
 Left foraminal narrowing c3/4 due to bony spurring.

My neurosurgeon didn’t read it with me though. I didn’t have that report yet when I asked him if he had looked at the MRI. All he said was that yes he saw it, and it looked good.

The neurologist did look at it with me, and seemed hopeful that it looked ok, but he seemed to think there was some slight bulging at c3/4 but nothing serious.
 He also didn’t mention the bony spurring.

My question is this….

Can the pain be from bony spurring that was left there at the time of surgery now hurt worse,  because the surgeon corrected the lordosis and there is more pressure at that level now?
Do bone spurs cause pain?

There has always been debate regarding the muscle twitches. They are widespread from the neck down and have no discernable pattern, other than the one in my right tricep that is usually frequent.

Can these fasciculations be caused by spinal cord compression?? 
Or damage?
 Some doctors say yes, some say no.
Isn’t it true that they are an indication of lower motor neuron issue? Can a large disc protrusion cause damage to the anterior horn, without much indication of cord signal change? 

And if so, do you think the symptoms are permanent? 

What could be the cause of the sharp, deep pain in my neck? 

Is it normal for a surgeon to be dismissive after surgery? 
Why is nobody talking to me about all of it?? I am not feeling listened to by them and wonder If I would benefit from trying to find a surgeon to take over? Will any surgeon be willing to take me 6 months postoperative?? The surgeon I had is well respected within the medical community here and I worry that may influence another surgeons decision to take my case.

I am at a loss as to what I should do and all I really want is for the pain to go away and start feeling better… And for someone besides my therapist to see the big picture and treat me as a whole person instead of just a number.

I apologize for the length of this and if it sounds like I’m complaining. I just want help and to feel better.

I truly appreciate any suggestions. 
 Thank you in advance!!!

[Donald Corenman, MD, DC]

#19523

There is a lot to cover and some of your questions cannot be answered without an examination and evaluation of your films. We will start with your original pathology that required surgery in the first place.

“Sizable disc protrusions deforming the spinal cord more on the right,a slight signal change immediately at and below the c5/6 level and a reversal of lordosis at c4/5 c5/6 c6/7 with degree of sub laxation”.

You had spinal stenosis with some cord injury “slight signal change immediately at and below the c5/6 level”. This means some cord dysfunction and probable myelopathy (see myelopathy on the website). If this is the case, this would explain your continued symptoms; “I have balance issues and muscle memory problems in my legs and arms. Subtle but there. My right foot aches and tingles. My hands are weak. Worse on the right. My thumb and index finger spasm and pull towards each other, my middle finger goes numb, Worse on the right”.

You bladder symptom “I have urinary urgency: certainly could be explained by the myelopathy. Your symptoms of “I also had GI bleeding and hemorrhoids. When I called to discuss it, the surgeons PA told me urgency isn’t from my condition” is not from the spinal cord. The PA was correct. Now stress and certain medications can cause some of these symptoms but not the cord.

“The pain in my neck concerns me because I didn’t really have much neck pain before and it is now 6 months post op and the pain takes my breath away still. I awake in pain and many times I need to lay down to take the pressure off my neck. I don’t sleep well at all. Every time I move my neck, it hurts, even on medication”. Pain in the cervical spine after neck surgery could have certain causes. You could have a pseudoarthrosis (lack of fusion) which can be noted on a CT scan. You could have pain generation from the levels above or below the fusion. This is diagnosed with either selective nerve root blocks, facet blocks or discograms (see all of these on the website).

“Can the pain be from bony spurring that was left there at the time of surgery now hurt worse, because the surgeon corrected the lordosis and there is more pressure at that level now”? The answer is yes-see above.

“Can these fasciculations be caused by spinal cord compression?? Or damage”? The answer is yes but faciculations can be from cord injury, nerve injury or from metabolic reasons (your electrolytes are out of whack). “Isn’t it true that they are an indication of lower motor neuron issue”? Yes in general. Can a large disc protrusion cause damage to the anterior horn, without much indication of cord signal change? Yes but normally the injury is to the nerve root, not the anterior horn which is an upper motor neuron injury.

Dr Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
 
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.

[Renee123]

#19534

HI lila,

I am sorry to hear that you had such a bad experience. I hope you find relief soon.

Can you please share with me who your surgeon was? Coincidentally, I live in the area and I am consulting with surgeons now for my own ACDF and I am very concerned.

Thank you,

Renee

[lila]

#19537

Hello Dr Corenman,

Thank you so much for taking the time to read all of that and replying to me! I know it is a lot to take in and go over, so I sincerely appreciate your response. I understand it is incredibly hard to give any advice without seeing images or files. You are right. I was diagnosed with cervical myelopathy.

Let me clarify…
It was the surgeons PA that told me URINARY URGENCY could NOT be related to my injury.
However I was under the impression it could after reading up on causes. I complained multiple times about it, but they haven’t requested any work up or referred me to any specialist.
Who is supposed to test and treat for urinary issues due to myelopathy?

I noticed you didn’t respond to my question regarding whether this is typical care from a neurosurgeon. :)
I do not want to paint the surgeon in a bad light. He obviously must have very capable hands, to be in his position. I am thankful that he caught the problem and acted urgently. I was told he is generally very conservative and only performs surgery on necessary problems. When I was shown the compression and deformity of my spinal cord, I absolutely agreed it needed to be fixed, and still do. I don’t regret or doubt the need for the surgery.
However, I get this feeling that he isn’t being upfront with me. Or that I’m only receiving partial answers.

I will change the question format.
As a surgeon, if your patient that had 3 level surgery and correction of lordosis and sublaxation, was complaining of sharp stabbing pain worse than before surgery, at 6 months post op, would it concern you and would you request a ct scan or follow up tests?

If a patient complains of urinary issues, as a surgeon, what do you do? Do you refer to a urologist or anything?
If the PA is saying urinary urgency cannot be caused by my injury, but I have been diagnosed with cervical myelopathy, is she incorrect?

As a surgeon, do you look at images such as bone xray and mri WITH the patient?
Is my surgeon able to see fusion on xray alone? Or on MRI?

At 6 months should I have fused by now?
Is it appropriate at 6 months post op, to try injections? Should this have been suggested by the surgeon?

As before, I appreciate any input. I am feeling rather confused about the role of my surgeon and whether or not he is supposed to be treating me or if his role is now done.
Would you or any other surgeon be willing to take on a patient 6 months post op and what determines whether a surgeon will or won’t?

Thank you so much for your time Doctor. I really do appreciate it…

Lila

[lila]

#19540

Hi Renee,

I am also sorry that you are in the surgical arena. I hope everything goes well for you!!
I could probably write a patient advocacy book at this point!!

I have learned some tough lessons along the way, and have been reading and searching for information for what feels like forever at this point! :)

I hesitate to mention who the doctors are, because I hate to speak poorly of anyone and I’m still confused as to what the actual role of a surgeon is. If I had to do it over again, I would have a neurologist AND a neurosurgeon.
I have been told by the surgeons office that they don’t deal with ongoing issues, so my advice is this:
have a completely independent neurologist OR orthopedic spine DR AS WELL as the surgeon, on your team. The reason I suggest an independent doctor, that isn’t associated to the surgeon, is because that way you have a second set of eyes and ears to bounce everything off of. Someone that doesn’t have a stake in the surgery or it’s outcome.

I was originally seen at DENT neurology and it was DR KM that diagnosed me with a stretched braxial plexus and benign fasciculation syndrome.
My surgeon is with UB neurosurgery and he is the chief of neurosurgery.
He was the overseeing neurosurgeon for the football player that was paralyzed awhile back. It was all over the news at the time, because it was a new treatment for spinal cord injury.

The funny thing about it, is that I didn’t know that at the time. I was referred to him and told he was very good and conservative. The referring Dr said it was urgent, and when I looked up his Bio and experience, I was impressed. So because things were happening urgently, I didn’t take the time to look for a surgeon I was comfortable with.
Another thing you should keep in mind, is although it isn’t the surgeons staff that is cutting you open, they play a HUGE roll in aftercare and recovery.
My surgeons staff is seriously awful…
I am not normally one to complain, or cause a fuss. Frankly as a patient, it is the LAST thing we want to do.
However this last time around I felt I HAD to speak up and be my own advocate. I don’t feel like the care I’ve received is acceptable or compassionate or empathetic in any way. Some of the comments my nurse and PA have made make no sense, and are downright insensitive.
Pain is subjective to each individual. Just because symptoms are not typical, or subtle doesn’t mean they are any less significant to YOU.
Don’t be afraid to speak up, ask questions and say when you aren’t comfortable. If it isn’t well received by staff or the Dr, note that as a red flag. YOU as the patient have the right to understand what is happening with your body.

I am now just realizing all of this and wish I had someone tell me these things beforehand.
I may have answered some of my own questions just now… :)

I’m happy to answer any questions you may have. I felt totally overwhelmed and worried before surgery too. (still am). It has been life changing and I wasn’t educated or informed correctly about what to expect prior to. Do as much reading as you can to understand your injury and symptoms. I hope you do well and you can get back to life. Remember that every single person has totally different situations and injuries and perceptions.
Trust your gut….
Hugs,
Lila

[Donald Corenman, MD, DC]

#19550

I will answer your questions in the order asked.

As a surgeon, if your patient that had 3 level surgery and correction of lordosis and sublaxation, was complaining of sharp stabbing pain worse than before surgery, at 6 months post op, would it concern you and would you request a ct scan or follow up tests?

Yes- a workup would be in order.

If a patient complains of urinary issues, as a surgeon, what do you do? Do you refer to a urologist or anything?

It depends upon the symptoms. There are many women who have delivered babies and have stretched out pelvic diaphrams. This structure is important for urinary consistancy so I am careful not to blame urological symptoms on a neurological condition quickly. Pain can also change urinary habits. I do not hesitate to refer to a urologist if there is any question.

If the PA is saying urinary urgency cannot be caused by my injury, but I have been diagnosed with cervical myelopathy, is she incorrect?

Possibly- please read above.

As a surgeon, do you look at images such as bone xray and mri WITH the patient?

Always.

Is my surgeon able to see fusion on xray alone? Or on MRI?

X-rays can be a good source for noting solid fusions but the gold standard is the CT scan. X-rays can miss up to 20% of pseudoarthroses (non-fusions). MRIs are notorious for not predicting solid fusions.

At 6 months should I have fused by now?

You should have a solid fusion at 6 months but I have seen very rare cases take up to 9 months.

Is it appropriate at 6 months post op, to try injections? Should this have been suggested by the surgeon?

Diagnostic injections are important in my practice. Some surgeons discount these injections so I cannot tell you the thoughts of your surgeon.

As before, I appreciate any input. I am feeling rather confused about the role of my surgeon and whether or not he is supposed to be treating me or if his role is now done.

Would you or any other surgeon be willing to take on a patient 6 months post op and what determines whether a surgeon will or won’t?

This occurs all the time in my practice. Half the patients I see have failed prior surgeries from elsewhere. Some surgeons will not see a patient with prior failed surgeries.

Dr. Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
 
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.

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