Daffodil
Senior Member
- Messages
- 5,875
since jenn announced her cfs is in remission, the surgeons are getting an onslaught of phone calls 
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
- Thread starter SK2018
- Start date
- Messages
- 28
I've collated some info about craniocervical instability (CCI) surgery which I posted yesterday on a blog post on the S4ME forum. I would like to share it here on Phoenix Rising as well, as I understand not all follow both forums. I have some concerns about this surgery in patients with ME/CFS and hope that the text will help to inform patients and to put things into perspective.
- Messages
- 28
Concerns about craniocervical instability surgery in ME/CFS
CCI/AAI has little in common with ME/CFS
Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI).
CCI refers to increased mobility and instability of the craniocervical junction, the transition between the spine and the skull. It normally develops as a result of physical trauma such as a car accident, an inflammation disease such as rheumatoid arthritis or a congenital disorder such as Down syndrome. [1] The main symptoms of CCI consist of severe neck pain, [2] and neurological abnormalities [3] that are quite different from the characteristic ME/CFS symptoms. Young et al. for example describe a case of CCI with chronic neck pain, headache, left-sided facial pain, and numbness. Another case example had progressive worsening of neck pain and frequent falls, which were attributed to balance issues. [4] The case report by Botelho et al. describes a man with insensibility to pain in the left hemithorax and paresis of the hands. [5] Kukrejo et al. report on 49 cases that underwent fusion surgery. The most common presenting symptoms were gait instability, motor weakness, numbness, neck pain and dysphagia (difficulties swallowing). [6] More severe forms of cervical cord compression and trauma to the spinal cord or the brainstem do not result in ME/CFS symptoms but in respiratory distress, pain, cranial nerve dysfunction, paresis and paralysis and in rare cases, sudden death. [7]
AAI refers to excessive movement at the junction between the superior vertebra of the spine. It also gives a symptom complex that is clearly distinct from ME/CFS. Clinical manifestations of AAI include neck pain, paresthesia, weakness and signs of myelopathy on examination. Other symptoms include difficulties with gait, neurogenic bladder and a lack of coordination. [8]
The EDS connection
The link between ME/CFS symptoms and CCI/AAI comes from research on patients with hereditary disorders of connective tissue such as Ehlers Danlos Syndromes (EDS). Following the publication of an influential paper on Chiari malformation and cranial settling in EDS patients in 2007 [9], there was an increase of surgeons diagnosing and treating CCI/AAI in patients with EDS.
It is worth highlighting that this research is still in its infant stages. There are very little scientific publications on CCI/AAI in EDS. According to a 2016 review by Fraser Henderson, an expert, and forerunner in the field, “there is a paucity of neurological literature referencing CCI in this group of disorders”. Opponents of these procedures argue that “radiological diagnosis of pathological instability at the cranio-cervical junction has not been clearly established in the literature for the hypermobility population.” [10]
The Henderson study
This year, Henderson and colleagues published a 5-year follow-up of 20 EDS patients treated with craniocervical stabilization surgery. [11] These were however not the average EDS-patients. They were required to have Chiari malformation, a clear indication of craniocervical instability, to suffer severe headache and/or neck pain and to have “demonstrable neurological deficits”. In addition, patients had to have a diagnosis of what is called “cervical medullary syndrome” a constellation of symptoms and signs that are thought to be caused by compression of the brain stem. According to a 2014 consensus statement [12], the clinical findings of cervical medullary syndrome are:
This is once again a symptom complex that is quite different from ME/CFS.
Although there were complications in some cases, the fusion surgery performed by Henderson et al. generally led to clinical improvement. Consequently, this study has been used as an example of why surgery for CCI/AAI might also work in patients with ME/CFS. The symptoms which improved most however such as vertigo, headaches, imbalance, dysarthria dizziness or frequent daytime urination were far from the characteristic symptoms of ME/CFS while fatigue, muscle pain, and IBS did not show a statistically significant improvement. The reported improvements in the trial were also not spectacular, given that this was a study without a control group. Patients improved from an average score of 53 on the Karnofsky scale to approximately 70. After 5 years there was only a small increase in work resumption: 60% of patients were still unable to work or go to school.[13] Interestingly, the reasons given by the participants for the lack of improvement in work or school status were other medical problems related to EDS such as musculoskeletal pain, fatigue, gastrointestinal issues, POTS, etc. So instead of given us an indication that CCI/IAA surgery might improve EDS-symptoms that resemble those of ME/CFS, this trial showed the exact opposite. Not only is there a lack of scientific evidence for the efficacy of CCI/IAA surgery in patients with ME/CFS, there is also no indication why this surgery would relieve ME/CFS symptoms.
Complications: occipitocervical fusion is no joke
While the benefits of CCI/IAA surgery for treating ME/CFS symptoms are unclear, the risks are obvious. This type of surgery, called occipitocervical fusion, is no joke. It reduces the range of motion of patients’ neck by approximately 30%. [11] The operation takes several hours as pedicle screws are inserted in the body to correct and stabilize the position of the cervical spine. Mattie reported that the surgeons put him on anesthesia for 14 hours and that the first days after the surgery were terrible, being in pain and unable to move or sleep. [14] Recovery is slow and estimated to last several months.
The complications of occipitocervical fusion can be serious and should be taken into consideration. [1,15] According to Choi et al. common complications include screw failure, wound infection, dural tear and cerebrospinal fluid leakage. [16]. In a large review of occipitocervical fusion by Winegar et al. 2010, “surgical adverse events data were recorded for 195 (24%) of 799 cases.”[7] Although the outcomes were generally good in the trial on atlantoaxial fixation by Goel et al., one patient died because of a vertebral artery injury incurred during the operation. [17] In the study by Henderson discussed above, two subjects had superficial infections, of which one returned to the operating room for closure of the rib wound dehiscence. Mild to moderate pain at the rib harvest site was common at 2 years, although substantially abating at 5 years. The study reported that "one to four years after the craniocervical fusion, some subjects developed pain over the suboccipital instrumentation (the "screw saddles") due to tissue thinning, and requested hardware removal (8/20 subjects)."
Jeff experienced a severe infection following his occipitocervical fusion. On the Phoenix Rising forum he reported:
Jeff needed another surgery to reopen and clean the incision site. Later he would need another revision surgery to replace 3 screws after a physical therapist twisted his neck too far. [19] Jennifer also experienced complications though it is unclear how these relate to the craniocervical fusion. She needed two extra surgeries in the lumbar spine to remove a hematoma that was compressing her spinal cord (a complication from a prior blood patch). [20]
It costs a lot of money
Another concern is the high cost. According to Jeff, Jennifer and Mattie there are only a few neurosurgeons in the world that can reliably perform these treatments. On the Phoenix Rising forum, Matt explained that it costs around 1800 euro’s to get an upright MRI-scan [21], that a consultation with one of these surgeons takes 250-300 euro’s [22] and that the actual fusion surgery costs approximately 70.000 euro’s in Spain and probably more in the United States. [23] Online fundraisers of patients trying to raise 100.000 euro for CCI/IAA surgery in the hope of recovering from ME/CFS, already exist. [24]
Are these surgeons reliable?
There is a third concern about these surgeries. If only a few neurosurgeons in the world are believed to perform the craniocervical/atlantoaxial fusion surgery in patients with ME/CFS reliably, one might ask what makes them so unique. Do they have unique skill and expertise, or are they more aggressive in pushing the limits of surgery? Most have private practices, meaning they likely experience a financial incentive to perform more surgeries.
In 2016, multiple media outlets reported that three patients had filled malpractice lawsuits against Paulo Bolognese, the neurosurgeon that performed Jeff’s fusion surgery. The three women claimed Dr. Bolognese either “gave them unnecessary surgeries or botched their treatment to the point they ended up in worse shape than when they first visited him.” According to mersonlaw, Dr. Bolognese had already been suspended by North Shore in 2010 “for allegedly failing to show up on time for a patient who was anesthetized for surgery — and has been sued at least 20 times over his medical care.” [25] I do not have the necessary information to judge these litigations. I do think it’s important that patients are correctly informed about the fact that some former clients think this neurosurgeon has performed unnecessary and inadequate surgeries on them.
A noticeable disclaimer
Given the information provided above, I would advise Jeff, Jennifer and Matt to add a noticeable disclaimer to the interesting and courageous blog posts they write about their past surgeries and current recovery process. The disclaimer should inform readers that:
(1) The clinical picture of CCI is quite different from ME/CFS
(2) There is no scientific evidence to suggest that CCI/AAI surgery relieves ME/CFS symptoms.
(3) CCI/AAI surgery costs tens of thousands of euro’s and has severe complications including screw failure, wound infection, dural tear and cerebrospinal fluid leakage.
EDIT 5: The sentence "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS." has been changed into "The clinical picture of CCI is quite different from ME/CFS” as some readers found the original version confusing (08/01/2019).
CCI/AAI has little in common with ME/CFS
Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI).
CCI refers to increased mobility and instability of the craniocervical junction, the transition between the spine and the skull. It normally develops as a result of physical trauma such as a car accident, an inflammation disease such as rheumatoid arthritis or a congenital disorder such as Down syndrome. [1] The main symptoms of CCI consist of severe neck pain, [2] and neurological abnormalities [3] that are quite different from the characteristic ME/CFS symptoms. Young et al. for example describe a case of CCI with chronic neck pain, headache, left-sided facial pain, and numbness. Another case example had progressive worsening of neck pain and frequent falls, which were attributed to balance issues. [4] The case report by Botelho et al. describes a man with insensibility to pain in the left hemithorax and paresis of the hands. [5] Kukrejo et al. report on 49 cases that underwent fusion surgery. The most common presenting symptoms were gait instability, motor weakness, numbness, neck pain and dysphagia (difficulties swallowing). [6] More severe forms of cervical cord compression and trauma to the spinal cord or the brainstem do not result in ME/CFS symptoms but in respiratory distress, pain, cranial nerve dysfunction, paresis and paralysis and in rare cases, sudden death. [7]
AAI refers to excessive movement at the junction between the superior vertebra of the spine. It also gives a symptom complex that is clearly distinct from ME/CFS. Clinical manifestations of AAI include neck pain, paresthesia, weakness and signs of myelopathy on examination. Other symptoms include difficulties with gait, neurogenic bladder and a lack of coordination. [8]
The EDS connection
The link between ME/CFS symptoms and CCI/AAI comes from research on patients with hereditary disorders of connective tissue such as Ehlers Danlos Syndromes (EDS). Following the publication of an influential paper on Chiari malformation and cranial settling in EDS patients in 2007 [9], there was an increase of surgeons diagnosing and treating CCI/AAI in patients with EDS.
It is worth highlighting that this research is still in its infant stages. There are very little scientific publications on CCI/AAI in EDS. According to a 2016 review by Fraser Henderson, an expert, and forerunner in the field, “there is a paucity of neurological literature referencing CCI in this group of disorders”. Opponents of these procedures argue that “radiological diagnosis of pathological instability at the cranio-cervical junction has not been clearly established in the literature for the hypermobility population.” [10]
The Henderson study
This year, Henderson and colleagues published a 5-year follow-up of 20 EDS patients treated with craniocervical stabilization surgery. [11] These were however not the average EDS-patients. They were required to have Chiari malformation, a clear indication of craniocervical instability, to suffer severe headache and/or neck pain and to have “demonstrable neurological deficits”. In addition, patients had to have a diagnosis of what is called “cervical medullary syndrome” a constellation of symptoms and signs that are thought to be caused by compression of the brain stem. According to a 2014 consensus statement [12], the clinical findings of cervical medullary syndrome are:
i) Headaches, suboccipital pain and neck pain,
ii) Bulbar and related symptoms: altered vision, diplopia, nystagmus, decreased hearing, tinnitus, imbalance, vertigo, dizziness, choking, dysarthria, dysphagia dysautonomia, postural orthostatic tachycardia, pre-syncopal or syncopal episodes disordered sleep architecture, sleep apnea,
iii) Symptoms of myelopathy: weakness, clumsiness, spasticity, altered sensation, paresthesias, dysesthesia, change in gait, constipation, urinary urgency and frequency.
This is once again a symptom complex that is quite different from ME/CFS.
Although there were complications in some cases, the fusion surgery performed by Henderson et al. generally led to clinical improvement. Consequently, this study has been used as an example of why surgery for CCI/AAI might also work in patients with ME/CFS. The symptoms which improved most however such as vertigo, headaches, imbalance, dysarthria dizziness or frequent daytime urination were far from the characteristic symptoms of ME/CFS while fatigue, muscle pain, and IBS did not show a statistically significant improvement. The reported improvements in the trial were also not spectacular, given that this was a study without a control group. Patients improved from an average score of 53 on the Karnofsky scale to approximately 70. After 5 years there was only a small increase in work resumption: 60% of patients were still unable to work or go to school.[13] Interestingly, the reasons given by the participants for the lack of improvement in work or school status were other medical problems related to EDS such as musculoskeletal pain, fatigue, gastrointestinal issues, POTS, etc. So instead of given us an indication that CCI/IAA surgery might improve EDS-symptoms that resemble those of ME/CFS, this trial showed the exact opposite. Not only is there a lack of scientific evidence for the efficacy of CCI/IAA surgery in patients with ME/CFS, there is also no indication why this surgery would relieve ME/CFS symptoms.
Complications: occipitocervical fusion is no joke
While the benefits of CCI/IAA surgery for treating ME/CFS symptoms are unclear, the risks are obvious. This type of surgery, called occipitocervical fusion, is no joke. It reduces the range of motion of patients’ neck by approximately 30%. [11] The operation takes several hours as pedicle screws are inserted in the body to correct and stabilize the position of the cervical spine. Mattie reported that the surgeons put him on anesthesia for 14 hours and that the first days after the surgery were terrible, being in pain and unable to move or sleep. [14] Recovery is slow and estimated to last several months.
The complications of occipitocervical fusion can be serious and should be taken into consideration. [1,15] According to Choi et al. common complications include screw failure, wound infection, dural tear and cerebrospinal fluid leakage. [16]. In a large review of occipitocervical fusion by Winegar et al. 2010, “surgical adverse events data were recorded for 195 (24%) of 799 cases.”[7] Although the outcomes were generally good in the trial on atlantoaxial fixation by Goel et al., one patient died because of a vertebral artery injury incurred during the operation. [17] In the study by Henderson discussed above, two subjects had superficial infections, of which one returned to the operating room for closure of the rib wound dehiscence. Mild to moderate pain at the rib harvest site was common at 2 years, although substantially abating at 5 years. The study reported that "one to four years after the craniocervical fusion, some subjects developed pain over the suboccipital instrumentation (the "screw saddles") due to tissue thinning, and requested hardware removal (8/20 subjects)."
Jeff experienced a severe infection following his occipitocervical fusion. On the Phoenix Rising forum he reported:
“Day 21 post-surgery, the swelling rapidly increased, and my incision site became bright red, inflamed, and the redness was spreading. I spiked a fever of 101.6 and went to the E.R. They admitted me for a week, got me on IV antiobiotics with a PICC line.”[18]
Jeff needed another surgery to reopen and clean the incision site. Later he would need another revision surgery to replace 3 screws after a physical therapist twisted his neck too far. [19] Jennifer also experienced complications though it is unclear how these relate to the craniocervical fusion. She needed two extra surgeries in the lumbar spine to remove a hematoma that was compressing her spinal cord (a complication from a prior blood patch). [20]
It costs a lot of money
Another concern is the high cost. According to Jeff, Jennifer and Mattie there are only a few neurosurgeons in the world that can reliably perform these treatments. On the Phoenix Rising forum, Matt explained that it costs around 1800 euro’s to get an upright MRI-scan [21], that a consultation with one of these surgeons takes 250-300 euro’s [22] and that the actual fusion surgery costs approximately 70.000 euro’s in Spain and probably more in the United States. [23] Online fundraisers of patients trying to raise 100.000 euro for CCI/IAA surgery in the hope of recovering from ME/CFS, already exist. [24]
Are these surgeons reliable?
There is a third concern about these surgeries. If only a few neurosurgeons in the world are believed to perform the craniocervical/atlantoaxial fusion surgery in patients with ME/CFS reliably, one might ask what makes them so unique. Do they have unique skill and expertise, or are they more aggressive in pushing the limits of surgery? Most have private practices, meaning they likely experience a financial incentive to perform more surgeries.
In 2016, multiple media outlets reported that three patients had filled malpractice lawsuits against Paulo Bolognese, the neurosurgeon that performed Jeff’s fusion surgery. The three women claimed Dr. Bolognese either “gave them unnecessary surgeries or botched their treatment to the point they ended up in worse shape than when they first visited him.” According to mersonlaw, Dr. Bolognese had already been suspended by North Shore in 2010 “for allegedly failing to show up on time for a patient who was anesthetized for surgery — and has been sued at least 20 times over his medical care.” [25] I do not have the necessary information to judge these litigations. I do think it’s important that patients are correctly informed about the fact that some former clients think this neurosurgeon has performed unnecessary and inadequate surgeries on them.
A noticeable disclaimer
Given the information provided above, I would advise Jeff, Jennifer and Matt to add a noticeable disclaimer to the interesting and courageous blog posts they write about their past surgeries and current recovery process. The disclaimer should inform readers that:
(1) The clinical picture of CCI is quite different from ME/CFS
(2) There is no scientific evidence to suggest that CCI/AAI surgery relieves ME/CFS symptoms.
(3) CCI/AAI surgery costs tens of thousands of euro’s and has severe complications including screw failure, wound infection, dural tear and cerebrospinal fluid leakage.
EDIT 5: The sentence "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS." has been changed into "The clinical picture of CCI is quite different from ME/CFS” as some readers found the original version confusing (08/01/2019).
Last edited by a moderator:
- Messages
- 28
References
[1] Ashafai NS, Visocchi M, Wąsik N. Occipitocervical Fusion: An Updated Review. Acta Neurochir Suppl. 2019;125:247-252.
[2] Bobinski L, Levivier M, Duff JM. Occipitoaxial spinal interarticular stabilization with vertebral artery preservation for atlantal lateral mass failure. J Neurosurg Spine. 2015 Feb;22(2):134-8.
[3] O'Brien MF, Casey AT, Crockard A, Pringle J, Stevens JM. Histology of the craniocervical junction in chronic rheumatoid arthritis: a clinicopathologic analysis of 33 operative cases. Spine (Phila Pa 1976). 2002 Oct 15;27(20):2245-54.
[4] Young RM, Sherman JH, Wind JJ, Litvack Z, O'Brien J. Treatment of craniocervical instability using a posterior-only approach: report of 3 cases. J Neurosurg Spine. 2014 Aug;21(2):239-48.
[5] Botelho RV, Neto EB, Patriota GC, Daniel JW, Dumont PA, Rotta JM. Basilar invagination: craniocervical instability treated with cervical traction and occipitocervical fixation. Case report. J Neurosurg Spine. 2007 Oct;7(4):444-9.
[6] Kukreja S, Ambekar S, Sin AH, Nanda A. Occipitocervical Fusion Surgery: Review of Operative Techniques and Results. J Neurol Surg B Skull Base. 2015 Sep;76(5):331-9.
[7] Winegar CD, Lawrence JP, Friel BC, Fernandez C, Hong J, Maltenfort M, et al. A systematic review of occipital cervical fusion: techniques and outcomes. J Neurosurg Spine. 2010 Jul;13(1):5-16.
[8] Lacy J, Gillis CC. Atlantoaxial Instability. StatPearls. 2019. Available at: https://www.ncbi.nlm.nih.gov/books/NBK519563/
[9] Milhorat TH, Bolognese PA, Nishikawa M, McDonnell NB, Francomano CA. Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and chiari malformation type I in patients with hereditary disorders of connective tissue. J Neurosurg Spine. 2007 Dec;7(6):601-9.
[10] Henderson FC (2016) Cranio-cervical Instability in Patients with Hypermobility Connective Disorders. J Spine 5: 299. doi:10.4172/2165-7939.1000299
[11] Henderson FC Sr, Francomano CA, Koby M, Tuchman K, Adcock J, Patel S. Cervical medullary syndrome secondary to craniocervical instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders: 5-year follow-up after craniocervical reduction, fusion, and stabilization. Neurosurg Rev. 2019 Jan 9.
[12] Consensus statement 2nd international SF dynamics symposium, June 24 & 25, 2013. Manhasset, NY, USA. Available at: https://csfinfo.org/files/1613/9665/4797/Final_Booklet_complete.pdf
[13] Video (minute 24.30) "Five-Year Follow Up of Craniocervical Fusions" - Fraser C. Henderson, MD.
[14] https://forums.phoenixrising.me/threads/cci-aai-fusion-surgery-scheduled.75221/page-2#post-2184898
[15] Garrido BJ, Sasso RC. Occipitocervical fusion. Orthop Clin North Am. 2012 Jan;43(1):1-9, vii.
[16] Choi SH, Lee SG, Park CW, Kim WK, Yoo CJ, Son S. Surgical outcomes and complications after occipito-cervical fusion using the screw-rod system in craniocervical instability. J Korean Neurosurg Soc. 2013 Apr;53(4):223-7.
[17] Goel A. Is atlantoaxial instability the cause of Chiari malformation? Outcome analysis of 65 patients treated by atlantoaxial fixation. J Neurosurg Spine. 2015 Feb;22(2):116-27.
[18] https://forums.phoenixrising.me/thr...-a-cause-of-your-cfs.56908/page-4#post-960342
[19] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-52#post-2186102
[20] https://medium.com/@jenbrea/health-update-1-a7029949a596
[21] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-25#post-1018414
[22] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-36#post-1025294
[23] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-36#post-1025317
[24] https://www.gofundme.com/go-fund-meine-schwester.
[25] https://mersonlaw.com/media-outlets-cover-merson-law-malpratice-lawsuits/
[1] Ashafai NS, Visocchi M, Wąsik N. Occipitocervical Fusion: An Updated Review. Acta Neurochir Suppl. 2019;125:247-252.
[2] Bobinski L, Levivier M, Duff JM. Occipitoaxial spinal interarticular stabilization with vertebral artery preservation for atlantal lateral mass failure. J Neurosurg Spine. 2015 Feb;22(2):134-8.
[3] O'Brien MF, Casey AT, Crockard A, Pringle J, Stevens JM. Histology of the craniocervical junction in chronic rheumatoid arthritis: a clinicopathologic analysis of 33 operative cases. Spine (Phila Pa 1976). 2002 Oct 15;27(20):2245-54.
[4] Young RM, Sherman JH, Wind JJ, Litvack Z, O'Brien J. Treatment of craniocervical instability using a posterior-only approach: report of 3 cases. J Neurosurg Spine. 2014 Aug;21(2):239-48.
[5] Botelho RV, Neto EB, Patriota GC, Daniel JW, Dumont PA, Rotta JM. Basilar invagination: craniocervical instability treated with cervical traction and occipitocervical fixation. Case report. J Neurosurg Spine. 2007 Oct;7(4):444-9.
[6] Kukreja S, Ambekar S, Sin AH, Nanda A. Occipitocervical Fusion Surgery: Review of Operative Techniques and Results. J Neurol Surg B Skull Base. 2015 Sep;76(5):331-9.
[7] Winegar CD, Lawrence JP, Friel BC, Fernandez C, Hong J, Maltenfort M, et al. A systematic review of occipital cervical fusion: techniques and outcomes. J Neurosurg Spine. 2010 Jul;13(1):5-16.
[8] Lacy J, Gillis CC. Atlantoaxial Instability. StatPearls. 2019. Available at: https://www.ncbi.nlm.nih.gov/books/NBK519563/
[9] Milhorat TH, Bolognese PA, Nishikawa M, McDonnell NB, Francomano CA. Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and chiari malformation type I in patients with hereditary disorders of connective tissue. J Neurosurg Spine. 2007 Dec;7(6):601-9.
[10] Henderson FC (2016) Cranio-cervical Instability in Patients with Hypermobility Connective Disorders. J Spine 5: 299. doi:10.4172/2165-7939.1000299
[11] Henderson FC Sr, Francomano CA, Koby M, Tuchman K, Adcock J, Patel S. Cervical medullary syndrome secondary to craniocervical instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders: 5-year follow-up after craniocervical reduction, fusion, and stabilization. Neurosurg Rev. 2019 Jan 9.
[12] Consensus statement 2nd international SF dynamics symposium, June 24 & 25, 2013. Manhasset, NY, USA. Available at: https://csfinfo.org/files/1613/9665/4797/Final_Booklet_complete.pdf
[13] Video (minute 24.30) "Five-Year Follow Up of Craniocervical Fusions" - Fraser C. Henderson, MD.
[14] https://forums.phoenixrising.me/threads/cci-aai-fusion-surgery-scheduled.75221/page-2#post-2184898
[15] Garrido BJ, Sasso RC. Occipitocervical fusion. Orthop Clin North Am. 2012 Jan;43(1):1-9, vii.
[16] Choi SH, Lee SG, Park CW, Kim WK, Yoo CJ, Son S. Surgical outcomes and complications after occipito-cervical fusion using the screw-rod system in craniocervical instability. J Korean Neurosurg Soc. 2013 Apr;53(4):223-7.
[17] Goel A. Is atlantoaxial instability the cause of Chiari malformation? Outcome analysis of 65 patients treated by atlantoaxial fixation. J Neurosurg Spine. 2015 Feb;22(2):116-27.
[18] https://forums.phoenixrising.me/thr...-a-cause-of-your-cfs.56908/page-4#post-960342
[19] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-52#post-2186102
[20] https://medium.com/@jenbrea/health-update-1-a7029949a596
[21] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-25#post-1018414
[22] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-36#post-1025294
[23] https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-36#post-1025317
[24] https://www.gofundme.com/go-fund-meine-schwester.
[25] https://mersonlaw.com/media-outlets-cover-merson-law-malpratice-lawsuits/
- Messages
- 28
I would immediately like to add some caveats to the information I posted above:
A) I am obviously no expert in these complex surgical procedures and it's possible that there are some inaccuracies in the text above. I simply did some research and read some studies. I hope the information I collected will be helpful for patients to interpret the recent ME/CFS recovery stories. I'm concerned about ME/CFS patients who are too ill to read much and desperate to try anything to relieve their suffering. I hope the skeptical view provided above will help them put things into perspective.
B) My blog post is not intended to question the CCI/AAI diagnosis of Jeff, Jennifer or Matt. The symptoms they experienced do resemble those associated with CCI/AAI I've read in the literature and I have no reason to doubt their diagnosis.
C) I've argued that there currently is no scientific evidence to suggest or think that CCI/AAI surgery relieves ME/CFS symptoms. That doesn't mean that it doesn't. Scientific understanding always has to start somewhere. I hope the stories of Jeff, Jennifer or Matt will indeed lead to a greater understanding of ME/CFS and related conditions.
D) I hope that Jeff, Jennifer and Matt will add the disclaimer to their recovery stories. That said, I realize the complex and difficult situation they are in given their abrupt change in health and the many people reading along or asking questions. I admire their courage to speak openly about this and their willingness to help others. I hope that they realize my text was intended to help others as well.
A) I am obviously no expert in these complex surgical procedures and it's possible that there are some inaccuracies in the text above. I simply did some research and read some studies. I hope the information I collected will be helpful for patients to interpret the recent ME/CFS recovery stories. I'm concerned about ME/CFS patients who are too ill to read much and desperate to try anything to relieve their suffering. I hope the skeptical view provided above will help them put things into perspective.
B) My blog post is not intended to question the CCI/AAI diagnosis of Jeff, Jennifer or Matt. The symptoms they experienced do resemble those associated with CCI/AAI I've read in the literature and I have no reason to doubt their diagnosis.
C) I've argued that there currently is no scientific evidence to suggest or think that CCI/AAI surgery relieves ME/CFS symptoms. That doesn't mean that it doesn't. Scientific understanding always has to start somewhere. I hope the stories of Jeff, Jennifer or Matt will indeed lead to a greater understanding of ME/CFS and related conditions.
D) I hope that Jeff, Jennifer and Matt will add the disclaimer to their recovery stories. That said, I realize the complex and difficult situation they are in given their abrupt change in health and the many people reading along or asking questions. I admire their courage to speak openly about this and their willingness to help others. I hope that they realize my text was intended to help others as well.
valentinelynx
Senior Member
- Messages
- 1,310
- Location
- Tucson
All surgeons are subject to malpractice suits. If they have not been disciplined by their state medical boards, the suits are likely spurious.
nanonug
Senior Member
- Messages
- 1,709
- Location
- Virginia, USA
Beautifully done. Your post deserves not only its own thread but a sticky as well!
Daffodil
Senior Member
- Messages
- 5,875
this will go the same way as the MS surgery, with people clamouring for it, demanding their governments pay for it, etc. that wont happen until a large trial or two i assume. and if isnt spectacularly successful, they wont pay. this could take years and years! all of us must attempt to marry insured americans now! lol
Daffodil
Senior Member
- Messages
- 5,875
@Michiel Tack do you know how long they followed hernderon's patients in the study? it is reasonable to think that someone who had CFS/ME for decades, would not recover quickly. perhaps improvements in IBS, fatigue, etc came much later, maybe very very gradually.
if there is improvements to be had by treating craniocervical instability, perhaps prolotherapy will help and at a far lesser cost for those of us outside US. dont have hopes too high for this but maybe
if there is improvements to be had by treating craniocervical instability, perhaps prolotherapy will help and at a far lesser cost for those of us outside US. dont have hopes too high for this but maybe
Daffodil
Senior Member
- Messages
- 5,875
@Jackdaw maybe it will result in more doctors being trained to do it.
after asking many people, including the admin people in some of these doctor's offices, i am still unclear as to how these doctors are unique. i know they specialise in EDS and so might use different surgical techniques for EDS or hypermobility patients, but what if you dont have those conditions? maybe we have severe ligament damage from a car accident or EBV doing something to those ligaments or something.....but no EDS or hypermobility....can we then go to any neurosurgeon?
i am always warned by people not to but no one can tell me why. surely it cant be that this happens only to EDS / hEDS patients
after asking many people, including the admin people in some of these doctor's offices, i am still unclear as to how these doctors are unique. i know they specialise in EDS and so might use different surgical techniques for EDS or hypermobility patients, but what if you dont have those conditions? maybe we have severe ligament damage from a car accident or EBV doing something to those ligaments or something.....but no EDS or hypermobility....can we then go to any neurosurgeon?
i am always warned by people not to but no one can tell me why. surely it cant be that this happens only to EDS / hEDS patients
In my experience a lot of the symptoms of the cervicomedullary syndrome described by Dr Gilete overlap with ME. Of course this particular surgical intervention will not be the fix in the majority of patients but it is definitely worth exploring even if just to rule out.
I am considering going ahead with surgery IF I can raise the money. My quality of life is very poor and I feel I have little to lose. I was offered C0-2 fusion, the same procedure Jeff and Jen had.
Assuming I survived the surgery, and they are used to anesthetizing some very unwell patients, I would still be glad I'd tried it even if it didn't improve things for me, rather than spend my life thinking what if I'd had that surgery & it helped. A little less neck movement would be nothing to me, although I am aware that there are significant risks around the time of surgery itself.
B x
I am considering going ahead with surgery IF I can raise the money. My quality of life is very poor and I feel I have little to lose. I was offered C0-2 fusion, the same procedure Jeff and Jen had.
Assuming I survived the surgery, and they are used to anesthetizing some very unwell patients, I would still be glad I'd tried it even if it didn't improve things for me, rather than spend my life thinking what if I'd had that surgery & it helped. A little less neck movement would be nothing to me, although I am aware that there are significant risks around the time of surgery itself.
B x
MEPatient345
Guest
- Messages
- 479
I have a few questions for the people who have done videoconferences or actual surgery with Bolognese and Gilete. Tagging a few... @mattie @jeff_w @bombsh3ll @JenB @CactusJilly @soti @NaxavisDragonLady @debored13 @brando
Bolognese wants people to first do 4 to 5 sessions of PT manual traction therapy, sometimes using a weight. What if it makes us worse? Does he want to see that it helps, or hinders? If it does nothing, does he then rule you out as a surgery candidate?
If you proceed to invasive traction test in hospital with Bolognese, again what happens if you cannot tell if it’s helping during that session? What does it entail?
I have watched the video on Bolognese’s website where he describes in detail the decompression and fusion procedures for complex chiari that he pioneered. What is different about this version of surgery and what Gilete does?
I saw @jeff_w reference choosing Bolognese for multiple reasons, one that he cited was that Bolognese does a surgery option that has less loss of range of motion. Can anyone speak further to that?
Bolognese wants people to first do 4 to 5 sessions of PT manual traction therapy, sometimes using a weight. What if it makes us worse? Does he want to see that it helps, or hinders? If it does nothing, does he then rule you out as a surgery candidate?
If you proceed to invasive traction test in hospital with Bolognese, again what happens if you cannot tell if it’s helping during that session? What does it entail?
I have watched the video on Bolognese’s website where he describes in detail the decompression and fusion procedures for complex chiari that he pioneered. What is different about this version of surgery and what Gilete does?
I saw @jeff_w reference choosing Bolognese for multiple reasons, one that he cited was that Bolognese does a surgery option that has less loss of range of motion. Can anyone speak further to that?
Last edited:
MEPatient345
Guest
- Messages
- 479
This video is a good explainer on Bologneses history, and the history of CCI and Chiari surgeries, and the limited number of surgeons who work on this, and why. He describes the surgery techniques that he pioneered after realizing the standard one was inadequate for EDS patients.
Last edited:
Exactly. I would not undergo anything like this unless it was done inside a specialist neurosurgical facility. When I saw Dr Gilete we discussed a trial of a halo brace, like Jeff had to see if this helped. I got the impression though that if it helped, they intended me to go to surgery straight away, not returning home to raise the money for the surgery.
I would be very concerned about having my head pulled up, then released to sink down again, possibly worse than before.
Because the halo would be 8000 euros & I would only be allowed it on for 48 hours which may not be long enough to tell, and I would be worried about doing more damage if I didn't end up having the surgery, I have decided against the halo trial.
He said I could try a Philadelphia collar, but that this is not generally sufficient to conclude someone wouldn't benefit from surgery.
B xxx
MEPatient345
Guest
- Messages
- 479
@bombsh3ll Agreed.. I am very concerned about trying PT esp weighted. I saw a new member this week @kiwiK posted that she made herself significantly sicker by pulling up on her head. Also it seems like @jeff_w and @JenB both became seriously more ill because of surgeries where their neck was extended. And a few others have posted about worsening symptoms from home door traction devices.
do you think that the digestive problems were caused by the neuro problems? ie, suppressed autonomic function due to inhibited neuro function?
Any specific type of scoliosis that goes along w these problems? I had scoliosis, but not the "S" shape in the spine
what other connective tissue problems besides EDS? I have the opposite - very stiff joints and spine.