Saw my neurosurgeon 3 weeks ago who thinks I may have craniocervical instability based on CT. Clivo-axial angle showed too much movement from flexion to extension. However, he feels limited in experience with the amount of patients he’s had with it, as well as surgery (possible limited fusion). Suggested wearing a cervical collar on weekends to see if it helps. When I wear it, I feel less bobbly and when I take collar off, I feel like my head is sinking into my spine. I am very bobbly for several minutes. If I don’t wear collar, I am bobbly with most head movements, especially left head turn and flexion. I have other symptoms, too. Long story short, he recommended I consult with Dr. Juan Uribe or Dr. Fraser Henderson. I saw Dr. Uribe and he is not convinced that I have CCI, but thinks I should be evaluated for a disease process. honestly, I was not impressed with him. He was very dismissive and did not explain anything. The more research I do, the more I think I might have basilar invagination. Does anyone have this diagnosis? Doers anyone have experience with either physician I mentioned?
Julie, that NS you saw is great… He knows enough to recognize CCI and knows enough to know he, well, may not know. Henderson is great, he did my cCI fusion 6 mos ago. I highly recommend him. But… He has a very long waiting list. I waited 8 mos for a consultation and another 6 mos for surgery and that was a long time ago. Send him your stuff with a note you were disgnosed with CCi and see what happens. Dr Sandhu, also in Baltimore, should be another great option. I believe he understudied with Henderson- but not 100% sure on that. I have also heard good things about Dr Patel in SC specifically regarding CCI. Keep wearing your collar, especially at night. Also VERY important get a sleep study if not already. Many of us CCIers have apnea and that is serious. Keep going with this and don’t settle, it’s a long road but worth the travel.
Hugs, Jenn
BI is usually pretty clear on MRI or even plain film. It can be confused with CM at first glance. Physical exam is usually pretty clear as there is almost always some neuro involvement. Have you ever noticed when swimming a distinct difference in water temperature above and below your navel? CCI is serious enough that your doc should be able to help cut through any waiting list. Uribe has the personality of a three-legged jenny mule but knows his stuff. But yeah Henderson is the guy. Dr. Barth Green University of Miami for consult is also excellent if he is still seeing patients
If Dr. Uribe is very skilled and doesn’t think that I have CCI and didn’t mention basilar invagination, then should I assume this issue is something different?
Julie, I would not assume it’s something different. If I were you I would get to an NS who specializes in Chiari and CCI to make sure. There are many NSs who are very skilled, but this skill does not always include ALL areas of neuro surgery. There are many, many NS who are not educated on the dynamics, and different types, of instability of the cranio cervical junction. There are many radiologists who are also unawares. We have to be very vigilant about who we get our info from and trust. If you think you have any type of CCI get to the bottom of it.
Jenn 
Not necessarily. If it was me I would be looking for a tie breaker opinion. At the end of the day what you are looking for is a treatment plan that makes sense. If the consensus is that surgical intervention is whats necessary whether it it is BI or CM is pretty irrelevent as the surgery is pretty much the same They will know for surgery once they get inside. CCI complicates the surgery a bit.
The question I would be asking is it better to be aggressive with the initial surgery and stabilize, or wait and see after the reduction if PT and non invasive stabilization is sufficient. Stabilization for CCI can (emphasis on can) actually be quite simple. There are a number of centers now doing it through a scope as any other fusion is. With the many new adjustable devices they can actually tune the fusion up, if there is post operative nerve pain. Thats harder to do if there is a big surgery overlaying the CCI stabelization.
The other question you might ask, because you are in great area for innovation is if it is CCI, to try a properly fit aspen brace. Its sort of like a trial surgery without the blood and sharp instruments...... If it gives you relief, then you could save yourself a lot grief and go with a lesser surgery for permanance. This could be what Uribe was referring to........
I have a great NS in my opinion. He thinks there is CCI but then Dr. Uribe, who is supposed to be very skilled with it, says he’s not convinced. I had decompression in 2010 at the Cleveland Clinic and revision with Dr. Oro in 2011. The symptoms of bobbly are all new in last 4 months since a throat surgery I had. I do have a hard cervical collar that I’ve worn as a trial per Dr. Oro, which does seem to help. Dr. Uribe didn’t recommend continuing it nor did he give me any restrictions with activities. He just said to return to my neurologist to look for a disease process. I am becoming discouraged. I don’t really want to have surgery if not necessary, but I also want a definitive reason why I am bobbly when I turn my head.
Each one of us are different in our journey with Chiari. At the end of the day, we have to weigh out all the factors and work with our insurance companies. Some of your theory is correct, TJ1, but some of it is left to us as the patient and with our doctors and insurance companies. When it is time to have fusion surgery? BCBS is a good example of this procedure and when it is time. If you wait to long there might be some damage that cannot be fixed.
Spinal Surgery Prior-authorization Guidelines
Subject CERVICAL FUSION (arthrodesis)
Next Review 06/2014
Cervical fusion refers to neck surgery during which two or more vertebral segments of the cervical spine are fused together with the goal of eliminating painful cervical neck motion, instability and providing additional space for the decompressed spinal cord and nerves. Cervical fusion may be a necessary treatment for degenerative disc disease, and can be approached either anteriorly or posteriorly.
General Requirements for Cervical Spinal Fusion:
- Prior-authorization is required for elective procedures and physicians should submit requests to Blue Cross of Idaho`s Medical Management Department at least two weeks prior to the anticipated date of an elective surgery.
- The patient must have an appropriate indication for Cervical Spine Fusion as defined in the Indications for Cervical Spinal Fusion section below
- The minimal documents necessary to accurately and expeditiously evaluate prior-authorization requests for spinal fusion are:
- Specific procedures requested with CPT/ICD-9 codes and disc levels indicated
- Office notes, including a current history and physical exam
- Detailed documentation of extent of and response to conservative therapy, including outcomes of any procedural interventions, medication use and physical therapy notes
- Most recent radiology reports for MRI`s, CT`s, etc. Imaging must be performed and read by an independent radiologist. If discrepancies should arise in the interpretation of the imaging, the radiologist report will supersede.
- Medical clearance reports (as indicated)
- Documentation of nicotine-free status – see Tobacco Cessation requirement below.
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The patient must have significant symptoms that correlate with physical exam findings AND radiologist-interpreted imaging reports including:
- Significant functional impairment or loss of function resulting in inability or significantly decreased ability to perform normal, daily activities of work, school, or at-home duties.
- Persistent, debilitating pain is defined as: Significant level of pain on a daily basis defined on a Visual Analog Scale (VAS) as greater than 4. Pain on a daily basis that has a documented negative impact on activities of daily living despite optimal conservative therapy as described below.
The following guidelines may not apply to patients with traumatic spinal fractures or dislocations, primary infections, neoplasms of the spine or those with “red-flag” symptoms*.
- The requesting surgeon should have personally evaluated the patient on at least two occasions prior to requesting surgery.
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Patient has participated in optimal conservative care for the indication-specific duration as required above. Conservative care must include the following:
- The use of prescription oral analgesic medications, preferably anti-inflammatories AND
- 6 weeks of documented participation in a formal, active physical therapy program as directed by a physiatrist or physical therapist.
- Other conservative measures which may not be substituted for those above but which may be used adjunctively can include:
- § A home exercise program
- § Activity modification, as appropriate
- § Bracing
- § Facet or epidural injections
- § Other measures
- The purpose of performing conservative measures is not to simply fulfill surgical pre-requisites or add complexity to the pre-authorization process. According to best-practice guidelines and evidence-based medicine, initial and preferred long-term treatments for back pain are conservative in nature. It is recognized that some individuals with back pain will require surgery. Many patients will obtain lasting benefit from conservative treatments and thus avoid more invasive procedures. One of the primary goals of this policy is to help identify and most appropriately manage these patients.
- All members should be screened for medical co-morbidities and undergo thorough medical clearance as indicated.
-
Tobacco Cessation
- Because of the high risk of pseudoarthrosis, a smoker anticipating a spinal fusion will adhere to a tobacco-cessation program that results in abstinence from tobacco for at least six weeks prior to elective surgery.
- Documentation of nicotine-free status by lab result (cotinine level) in patients who have been documented tobacco-users is required. Labs are to be performed after 6 weeks tobacco cessation and ample time should be afforded to submit this confirmation and complete the prior authorization process.
Indications for Cervical Spine Fusion
The following indications for cervical fusion are considered Medically Necessary
- Unstable traumatic spine fracture or dislocation
- Primary or metastatic tumor causing pathologic fracture, cord compression, or instability
- Spinal infectious disease
The following indications for cervical fusion with or without decompression may be considered Medically Necessary when all other reasonable causes of pain have been ruled-out and all other requirements have been met (as described in the General Requirements for Cervical Spinal Fusion portion of this document):
-
Multilevel spondylotic myelopathy, as evidenced by 1 or more of the following:
- Clinical signs and symptoms of myelopathy which may include: Clumsiness of hands, urinary urgency, new-onset bowel or bladder incontinence, frequent falls, hyperreflexia, Hoffmann sign, increased tone or spasticity, loss of thenar or hypothenar eminence, gait abnormality or pathologic Babinski sign
- Herniated disk or osteophyte which has failed to improve with 6 weeks of coordinated conservative therapy as described above.
- Ossification of the posterior longitudinal ligament at 1 to 3 levels associated with myelopathy
- Degenerative cervical spondylosis with kyphosis causing cord compression
- Disk herniation associated with myelopathy
- Multilevel spondylotic radiculopathy which has failed to improve with 6 weeks of coordinated conservative therapy as described above
-
Spinal segment degeneration adjacent to a prior fusion with 1 or more of the following :
- Symptomatic myelopathy corresponding to the adjacent level
- Symptomatic radiculopathy corresponding to the adjacent level and unresponsive to 6 weeks of coordinated conservative therapy as described above
*Red flag symptoms may include; severe or rapidly progressive symptoms of motor loss, bowel or bladder dysfunction.
I have almost all of symptoms listed under myelopathy, including hyperreflexia, Babinski on left, Hoffman on left according to both Dr. Oro and Dr. Uribe. I will present information to my neurologist at upcoming appt.
I can understand why you are getting discouraged. It would seem reasonable that there could be something else going on having suddenly shown up following a surgery in the area and 4 -5 years after decompression. I'm curious if there has been any nerve conduction studies done or an SSEP? In terms of difficulty of surgery believe it or not ENTs surgery is considered to be the most technically challenging. You are definitely on the right track. You have one vote for CCI,and one maybe. Just hang in there. Meaningless I know, you are on the right track.
Julie said:
I have a great NS in my opinion. He thinks there is CCI but then Dr. Uribe, who is supposed to be very skilled with it, says he's not convinced. I had decompression in 2010 at the Cleveland Clinic and revision with Dr. Oro in 2011. The symptoms of bobbly are all new in last 4 months since a throat surgery I had. I do have a hard cervical collar that I've worn as a trial per Dr. Oro, which does seem to help. Dr. Uribe didn't recommend continuing it nor did he give me any restrictions with activities. He just said to return to my neurologist to look for a disease process. I am becoming discouraged. I don't really want to have surgery if not necessary, but I also want a definitive reason why I am bobbly when I turn my head.
)Julie there are some great videos about CCI and Chiari
CSFinfo.org
Videos
Metropolitan area
Watch anything about CCI with Chiari or complex Chiari parient
I had major hyperreflexia too. I had very minimal BI, but sharp clivo axial angle -worse with flexion and severe amount of movement front to back sliding) of skull on C-1. Since my CCI fusion I no longer wear a collar during the day and have average pain level of 2. I’m very happy with my results.im sorry, you have been through two Decompressions already that is a lot to go through. If you want to continue on the “journey” to know just what your dealing with CCI -wise you have my support.
Do you know what your clivo-axial angle was? Dr. Oro said my brainstem had a sharper angle than he liked to see. Flexion was 123 and extension was 146, I believe. From research I’ve done, both angle are lower than normal.
If you like statistics Julie, this is a great study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/
Yes your numbers are low. But you also want to know what they are in the neutral position. If you look at figure 5, you can see the effects. (Note the parts on BI as well) In general even if you don't want to play the numbers the article may be a great addition to your library.
They are recommending a 2 week bracing. Its sounds like, the more I read what you have said, Dr. Oro should be the Bus driver here. He wants answers. Thats more than cool.
Julie those are sharp angles you have, dr Oro is awesome that he recognized that. These are my measurements. These are the same measurements talked about in the video I mentioned.
Clivo axial Ang: flex 130 deg, ext ? Can’t remember around 145 (now after the fusion my neutral is 162!)
Grabb Oakes: flex 8 mm
Harris Line: flex 10.6, ext 4.5 this is the one that measures front to black sliding/translation)
Palato atlanto angle neural 16 deg
Basion dens interval 9 mm
This is a non video quick link about these same measurements too
Jenn
Yes, I do like statistics. I am a medical speech-language pathologist and work with physicians all the time. I know what questions to ask (generally) to get answers. I actually have this article printed, I believe, which is why I keep thinking I have BI or CCI. Since seeing Dr. Oro, I found a great power point presentation online that describes several different measurements to take when looking for BI/CCI. Dr. Oro has sent a written letter to Dr. Henderson. He is fantastic, but was honest that he feels he does not have as much experience with CCI as the specialists he recommended.
If anyone is interested, here is the link to the presentation:
http://ihiwg.org/wp-content/uploads/2013_henderson_recognition-of-cranio-cervical-instability_san-diego.pdf
Jenn, thank you for the measurements. I did not see that you listed them before responding to another post. Those are the measurements that I read about from Dr. Henderson. I am going to take the presentation information to my neurologist. I believe he will be willing to review and measure, hopefully. I thought the measurements Dr. Oro gave me were low after looking at the research. I do not believe a neutral image was obtained.