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Need help! Think I have cervical myelopathy but I can't get treated!

earth2robineearth2robin Posts: 51
edited 06/11/2012 - 9:00 AM in Neck Pain: Cervical
Help! I have been to several doctors in the last 9 months attempting to be treated for chronic cervical back pain that started in high school. I am 32 years old now with a prior history of chronic lumbar pain/ cauda equina syndrome/leaking spinal fluid/microdiscectomy.

It took my neurologist 2 referrals to get an MRI approval from my insurance (Medicaid) after 4 months of "conservative" treatment. Below are the results.

Overall Impression: Multilevel degenrative changes, most significant at C6/7 where an extrusion abuts spinal cord. Abutment of exiting nerve roots and severe stenosis of spinal canal and neural formaina. Large osteophyte complex.

C2/3: Disc dessication, loss of height.

C3/4: Disc dessication, loss of height. Central/posterior lateral disc bulge. Moderate narrowing of right neural foramen. Mild uncinate hypertrophy.

C4/5: Disc dessication, loss of height. central/posterolateral disc bulges. Narrowing of lateral recesses. Right neuroforamina is narrowed due to bony spurring and facet arthropathy.

C5/6: Disc dessication, loss of height. Broad disc bulge plus small posterolateral bulges and bony spurs. Right greater than left neural lateral recesses narrowed. Moderate narrowing of right neural foramina. Facet arthropathy contributes to narrowing.

C6/7: Disc dessication, loss of height, and endplate changes present. Large diffuse 9 mm osteophyte complex formation with a large inferior disc extrusion extending 22 mm inferiorly. Severe narrowing of the spinal canal is observed. Abutment of the likely left C7 nerve roots and abutment and deformity of the spinal cord. Mild to Moderate narrowing of the left neural foramina and severely narrowed right neural foramina. Facet arthropathy contributes to narrowing.

C7/T1: Narrowing of the left lateral recess and neural foramina due to above disc extrusion.

Despite seeing my PCP at least 10 times for this problem as well as a neurologist about 5 times plus a neurosurgeon and physical therapy, I am no closer to a treatment or even pain management. My insurance would not approve the recommended surgery. There is not a pain management clinic where I live that accepts my insurance, I would have to drive to Seattle or Spokane. None of the above doctors will prescribe me any kind of pain relief. In fact, after speaking with my insurance, the neurosurgeon delayed the surgery until after a trial period of injections. Then my insurance dropped my coverage, so I have been looking for new insurance and a new doctor, despite being financially unable (unemployed with 5 kids). I can't live with this pain day to day, but I can't find a doctor that is willing to care for the patient and not the insurance. I think I have developed cervical myelopathy in the last month while attempting to get surgery approval before my insurance dropped me, but none of my doctors acknowledged the symptoms because of the insurance hassle.

Here are my current symptoms: constant numbness/tingling in right leg and arm. My left side becomes numb while sitting and after walking around for 30+ minutes. Shooting, sharp pains down my right arm and in my neck when I move or turn it. Range of motion in my neck is severely limited in either direction. Sciatica in both legs. Sharp, electrical pains down my neck when I try to lift my head up, like to look at the sky, same for when I look down. Severe headaches, often times daily. Weakness in my arms, I have trouble carrying my twin 18 months toddlers to high chair then back to their play area. Have trouble reaching high things and gripping things. Really clumsy with hands since they developed an almost constant shakiness/jerking motion. My right leg has a limp because of the numbness/ tingling. Activity and sitting makes things worse, but I have 5 kids to take care of. Really cold feet and hands all the time, even with socks and shoes or a blanket. My hands are swollen and stiff a lot of the time.

I am currently unemployed, but I can't imagine returning to work now with all this pain and numbness and clumsiness. I think I should be classified as disabled now since I can't return to my job as I am now or anytime in the near future, but the doctors ignore me when I put out that I can't carry the equipment I would need to carry at work and I can't use a computer for 8 hours a day. Any ideas an this?

Does anybody have any suggestions? I'll take advice, suggestions, encouraging words, anything to know that somebody out there actually understands what is going on.

Also, I am 32 years old now. What will moderate/severe disc degenerative disease, stenosis, bulging discs, arthritis, and a spinal deformity do to me 20-30 years from now?



  • I am not a doctor, so I can't really evaluate your condition, but by reading references about impingement on the spinal chord or nerves and your symptoms, I start to understand your concerns and your pain. I tried to Google resources in Washington State (I live on the East Coast) and found http://hrsa.dshs.wa.gov/HRSAClient.htm
    which was the Washington State Health Care Authority, 1-800-562-3022. Another was DSHS Community Service Office (CSO), Washington State Department of Social and Health Services (1-877-501-2233).I apologize if you already are aware of these resources and have had no assistance.

    Do hospitals in your area have ombudsman offices or patient advocate offices that might be able to assist? Or are there any public supported hospitals or university hospitals?

    I am so sorry that you have all this to deal with along with the pain and worry.

    You can apply for Social Security disability on-line, so you may want to do that. Because you are young, you may get denied and have to appeal (and appeal). Attorneys are available to assist in the process who are paid once you are approved, I think from your Social Security award. It can be a long process.

    Take care, and let us know how you're doing. This is definitely a group that can empathize.

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • The biggest impediment to me receiving treatment for my cervical problems was my insurance, Medicaid, issued through DSHS. Once a doctor recommended a treatment then had to gain approval through Medicaid, the treatment would always change from surgery to injection, from a serious, debilitating condition to , and I quote, "it's not that bad.". To answer your question about a local hospital, the situation gets even more messed up. My 2 emergent back surgeries in 2011 were considered pre existing conditions by Medicaid and not covered; therefore the one hospital within 200 miles that has neurosurgeons and orthopedic surgeons will not allow me as a patient since I now owe them somewhere around $100,000. Also, thanks for the info about disability, I didn't know the lawyers would take their fee out of the award. I might be able to get that process in motion then, especially with my unemployment, our only income, ending in 2 months.

    I should have new insurance by next week, but now I don't think, after all my experiences, that whatever new doctor I go to will listen. How can I get a doctor to listen to me, the patient, and not the insurance company? Is there a way to find a doctor that will treat me like a human? My funds are very limited as my husband and I are both unemployed graduate students so I can't shop around for a doctor. I have to hope I choose the right one.

    Anybody know of any neurosurgeons or orthopedic surgeons in Washington that cares?
  • Just in case somebody reads this at a later point, I wanted to update this. After Medicaid dropped me, I picked up the insurance offered to students by my university. I kept the appointment that was originally scheduled as my second opinion with Medicaid, with an orthopedic surgeon/neurosurgeon in Seattle. Through research, I learned that he is actually considered one of the top 1% in his field by US News & World Report. He is affiliated with one of the top neurosurgery/orthopedic surgery hospitals in the nation and the top hospital network in Washington; therefore, in my opinion, his diagnosis definitely proves that my last “non” diagnoses was due to having Medicaid.

    On Tuesday, I was diagnosed with cervical myelopathy by my second neurosurgeon consultation and will have an ACDF performed at the C6/C7 level on March 21. What is frustrating is that through my research, I have learned (albeit after the fact) that some of the new signs used to diagnose cervical myelopathy is the finger escape sign. At the time of my first neurosurgeon appointment, I didn’t even know this weird movement of my pinkie finger had a name. I just thought it very strange and pointed it out to the first neurosurgeon. The only signs the first neurosurgeon even checked for is the Hoffman’s sign and hyperreflexia. I read that the Hoffman’s sign may not even be indicative of myelopathy if the compression occurs below the C5/C6 level (not sure if that is right though). They did not check for clonus or Babinki’s sign. At the time I had an obvious limp when I walk with balance problems, I even told them I about the electrical pains shooting down my neck and arms when I move my head forward (Lermitte’s phenomenon).

    To me it is incomprehensible that a doctor would ignore these symptoms simply because the insurance company involved, but I believe that is indeed what happened. So if you are ever in the Seattle area and you have Medicaid, send me a message and I will tell you which doctor to see and which not to see, although I have provided enough info in this post for someone to figure out who they should see by doing a little research :))) :))) . Sorry I can’t just come out and say it, but I believe the site does not allow that.
  • I am sorry for the challenges you have had to have with advanced degeneration and insurance/surgeon fallout, and the "non-diagnosis" well stated - - and knowing you deserved so much better along the spinal challenge you were having. It is so good to hear you were able to finally be seen, evaluated and by the the best of the best and in your state !

    You know, I may share my story, not that it can change your situation, or mine...but with insurance, covered by Medicare and good supplemental....are spine journey result ironically has the same devastating destination.

    My journey has been being disabled with C-Spine & L-Spine becoming chronic + major joints (hip, knee, hands) in 2002 having both Medicare and supplemental insurance hopefully bring me good surgeons, neurologists for a disease in my 50's that spares nothing + trauma of broadside collision of C-Spine degenerating so similar to yours, with the exception of C-2 C-3 abnormal levels since birth.

    In a nutshell, my complex issues, getting the best of the best orthosurgeon in 5 star univ. medical school in major metro area highy specialized in C-Spine complex surgeries, for 5 yrs. appropriately assessed not to do a second ACDF on C-6/7 until neuro symptoms demanded doing so. It requires C-Spine T-Spine junction surgery which is more complex and high risk, they do them, but...complications, prognosis not as they'd like, hence only when neuro symptons more so myelopathic vs. facet nerves.

    Since 2009 and advised by this fine surgeon to get other opinions, determined when I was neuro-symptomatic, left arm. hand severe radiculopathy determined not to do surgery in re-reviewing my complex deformity and intrusive two procedure anterior / posterior surgeries would lend more likely less than average to poor prognosis. 2 additional surgeons, named what they would & could do for the severe neuropathic left arm/hand and beginning of the right arm neuropathy + myelopathic symptoms, legs, foot flinching, BUT no exchange in addressing ?'s of prognosis.

    Fast forward 2012 and another mva, hit my a truck on right side of my minivan = (l) Surgery of 10 hrs (2 Approach Surgery) on the back burner (Prognosis Not Good) and (2) "Living With" Recommendation No Surgery Better Choice = much worse + Pain Mngmnt no interventional treatments (posted today re: appt.) = No Resolve to Living With Severe Pain Constant + Myelopathic Symptoms & Dysfunction Arms and Hands

    Not wanting to depress you here, but E2Robin, the challenges of disease/trauma of the Spine + the limits of surgical intervention/ reconstruction to resolve pain, preserve function is sadly in the 21st century now still lacking....and even with Insurance, Medicare and private Insurance: Blue Cross Blue Shield (any provider coverage) able to take me to any Neurosurgeon, Orthosurgeon, Neurologist team in this country.....

    Sadly, I end up with no resolution For my C-Spine & T-Spine in advanced stages of degeneration and sadly clearly know and discovered the limits of the medical and surgical field and astute surgeons. Yes, even with the amazing technological advances,(new improved hardware, disc replacements devices, special surgical tools, computer assisted tech) over the past 25 yrs. can not save my spine, my body function nor alleviate the chronic pain I am being doomed to live with.

    My hope is that your assessment and surgical plan that is being offered can bring you beyond the neuropathology and myelopathy limitations - - wishing you all the best.

    PM me if you like Earth2Robin. My mantra these days are...."I am more than my body" ! = for the challenges I am facing and the functions that I loose, my spirit is more I will forever affirm :) >:D< And knowing we have understanding and support - - sustains & lifts that spirit :H In reading your spine journey and challenge, I witness the same in you :) !

  • DimsoftDDimsoft Posts: 1
    edited 08/11/2015 - 7:02 AM
    Hi... I (46 yo male) wanted to share my story also to give hope to anyone reading these forums for some answers. I was diagnosed also with Cervical Stenosis with advanced Myelopathy due to 2 slipped discs on my neck and had surgery on 31st of October 2014. I now have fused 2 discs C4-C5-C6. It's been 10 months since the surgery and I feel I am back to 99% of where I was before the problems started (my problems were on the left side with both left leg and left hand affected, loss of strength, problems with walking, problems with balance, severe muscle spasms and twitches etc). I went back to work after 3 weeks and I back to playing basketball twice a week 3 months later. My strength and coordination is getting better with every game and I am starting to be a good player again - I have played basketball all my life. I have now started doing weights on my hands and walking a lot hoping to get to 110% :)! The improvement didn't happen overnight. It took months and it was slow but with every month it got better and better. There were times that I felt I was going backwards with the symptoms coming back but ALWAYS the symptoms would go away and I would see a bigger improvement at the back of it. In time I turned the fact that the symptoms (primarily muscle spasms) were coming back into a positive as I knew they would go away in a few days and I would improve even more afterwards. My thinking about muscle spasms coming back but then going away and seeing an improvement is that my body was unlocking and fixing another part of my spinal cord.

    My most annoying symptom leading into and after the surgery was severe muscle spasms (both arms and legs but other places also).

    In my experience surgery works and makes a big difference. But you also need to exercise as much as you can and be patient which is not easy. My strength has come back and my muscle spasms have all but gone. DONT GIVE UP ON GETTING BETTER... It is possible and happened to me. My advice to everyone that is suffering from this condition is to have the surgery as soon as they can then try and get on with their lives. Remember that there is no one out there that doesn't have a problem of some description. There are other worst things that are happening to people but as annoying and unfortunate we all feel to have been hit with myelopathy, I feel we can at least do something about it. Stay positive and don't give up. God Bless everyone.

    Welcome to Spine-Health
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