Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
Medical advice, investigation and surgery for a 7-year old boy
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Medical advice, investigation and surgery for a 7-year old boy
by Pavel Bogdanov, Jan 01, 2001 12:00AM
Good day,
We are looking for a medical advice, investigation and surgery for a 7-year old boy Alan with a multiple developmental defects including inherent deformations of cervical C1-C2 vertebrae, leading to a dramatic compression of a spinal cord's cranial portion and different neurological disorders.
Alan was subjected to surgery on July 21 2000. At present, Alan’s condition is grave, he is conscious, maintained on artificial ventilation of the lungs as the spontaneous breathing, although existing, proves to be ineffective.
Alan has been consulted and treated by doctors from Children’s Municipal K.A.Raukhfus Hospital of St.Petersburg (Russia). His doctors recognize his case extremely infrequent and difficult. At present he receives only symptomatic treatment, as the doctors really do not know what to undertake further.
Below is a detailed excerpt from the Case history of Alan.
We would be highly appreciated for any helpful information on abilities of medical investigation and surgery in USA or somewhere else for Alan. If you are aware of this kind of pathology or you know a suitable doctor, surgeon or hospital for him, please let us know.
We would also be grateful for an Internet consultation, as we have got all an appropriate medical documents to send.
We really need your help.
Best Regards,
On behalf of Alan's relatives,
Pavel Bogdanov,
St.Petersburg, Russia.
Children’s Municipal K.A.Raukhfus Hospital # 19
Department of Neurosurgery
Excerpt from the Case history # 7639
Alan TAUTIEV, 7-year old, was admitted to the Department of Neurosurgery of Children’s Municipal K.A.Raukhfus Hospital # 19 on 11 July, 2000, with the diagnosis: Multiple developmental defects; Hypoplasy of the C2 dentiform process with the Atlas-occipital assimilation; Atlas-axial instability; Inherent stenosis of the spinal canal in the Oo-C1-C2 area; Compression of the spinal cord’s cranial portion at the C1-C2 level; Progressing cranial-cervical myelopathy of a mixed compression-ischemic genesis; Dysplasia of the left lung; funnel-form deformity of the chest; Scoliosis 3rd degree; Inherent dislocation of the left femur.
The patient has been ill since birth. In the city of Vladikavkaz, a diagnosis was made: Infantile cerebral paralysis. The treatment was ineffective. Since the age of 2.5 the child was started walking but, at the age of 4, a progressing weakness appeared in legs and arms. The patient was treated by osteopaths and manual healers but the weakness in the extremities became worse. The child was referred to the Tourner Institute where the MRI of the brain and spinal cord was performed. The investigation revealed: magnetic-resonant tomographic signs of the basilar impression, platybasia and hypoplasy of the C2 dentiform process. The C2 body was shifted cranially and positioned in the great foramen lumen. The great foramen lumen was deformed and sharply reduced to 0.3 cm; it was only visible in its posterior-left portions. The spinal cord was sharply thinned and compressed.
Neurological examination has revealed that the cranial-cerebral innervation is not abnormal; there is a lower spastic paraparesis up to clonus; an upper flaccid paraparesis; sensitivity is preserved in all the segments; there is a dysfunction of pelvic organs.
Considering the duration of neurological disorders as well as the signs of the spinal cord atrophy within the upper-cervical area, advancing neurological deficiencies, instability of the spine cervical portion, a surgical treatment is indicated.
Surgery on 21 July, 2000: Posterior craniovertebral decompression of the spinal cord’s cervical portion; occipito-spondilodesis.
In the post-operation period: artificial ventilation of the lungs as the spontaneous breathing proves to be ineffective. Left-sided atelectasis. On 24 July, 2000, a tracheostomy was performed as well as repeated therapeutic fibrobronchoscopies. Decubiti have been formed in the occipital area and near the operation wound, the sores demanding a constant doctoring.
At present, the patient’s condition is grave, he is conscious, maintained on artificial ventilation of the lungs as the spontaneous breathing, although existing, proves to be ineffective. Daily training of the respiratory system is performed. During this period, the child has been administered a course of Rocephin, a course of Tienam, a general supporting therapy (neurotropic drugs, vascular preparations); the neck has been immobilized with the aid of a head support. The respiratory therapy is to be continued as well as a symptomatic treatment.
The patient has been consulted by Prof. Yu.A.Garmashov, Head of the Dept. of Children’s Neurology and Neurosurgery of the Medical Academy of Postgraduate Education. Purchasing of an autonomous device for activating the diaphragm breathing has been recommended.
Head of the Department N.B.Korshunov (Signed)
We are looking for a medical advice, investigation and surgery for a 7-year old boy Alan with a multiple developmental defects including inherent deformations of cervical C1-C2 vertebrae, leading to a dramatic compression of a spinal cord's cranial portion and different neurological disorders.
Alan was subjected to surgery on July 21 2000. At present, Alan’s condition is grave, he is conscious, maintained on artificial ventilation of the lungs as the spontaneous breathing, although existing, proves to be ineffective.
Alan has been consulted and treated by doctors from Children’s Municipal K.A.Raukhfus Hospital of St.Petersburg (Russia). His doctors recognize his case extremely infrequent and difficult. At present he receives only symptomatic treatment, as the doctors really do not know what to undertake further.
Below is a detailed excerpt from the Case history of Alan.
We would be highly appreciated for any helpful information on abilities of medical investigation and surgery in USA or somewhere else for Alan. If you are aware of this kind of pathology or you know a suitable doctor, surgeon or hospital for him, please let us know.
We would also be grateful for an Internet consultation, as we have got all an appropriate medical documents to send.
We really need your help.
Best Regards,
On behalf of Alan's relatives,
Pavel Bogdanov,
St.Petersburg, Russia.
Children’s Municipal K.A.Raukhfus Hospital # 19
Department of Neurosurgery
Excerpt from the Case history # 7639
Alan TAUTIEV, 7-year old, was admitted to the Department of Neurosurgery of Children’s Municipal K.A.Raukhfus Hospital # 19 on 11 July, 2000, with the diagnosis: Multiple developmental defects; Hypoplasy of the C2 dentiform process with the Atlas-occipital assimilation; Atlas-axial instability; Inherent stenosis of the spinal canal in the Oo-C1-C2 area; Compression of the spinal cord’s cranial portion at the C1-C2 level; Progressing cranial-cervical myelopathy of a mixed compression-ischemic genesis; Dysplasia of the left lung; funnel-form deformity of the chest; Scoliosis 3rd degree; Inherent dislocation of the left femur.
The patient has been ill since birth. In the city of Vladikavkaz, a diagnosis was made: Infantile cerebral paralysis. The treatment was ineffective. Since the age of 2.5 the child was started walking but, at the age of 4, a progressing weakness appeared in legs and arms. The patient was treated by osteopaths and manual healers but the weakness in the extremities became worse. The child was referred to the Tourner Institute where the MRI of the brain and spinal cord was performed. The investigation revealed: magnetic-resonant tomographic signs of the basilar impression, platybasia and hypoplasy of the C2 dentiform process. The C2 body was shifted cranially and positioned in the great foramen lumen. The great foramen lumen was deformed and sharply reduced to 0.3 cm; it was only visible in its posterior-left portions. The spinal cord was sharply thinned and compressed.
Neurological examination has revealed that the cranial-cerebral innervation is not abnormal; there is a lower spastic paraparesis up to clonus; an upper flaccid paraparesis; sensitivity is preserved in all the segments; there is a dysfunction of pelvic organs.
Considering the duration of neurological disorders as well as the signs of the spinal cord atrophy within the upper-cervical area, advancing neurological deficiencies, instability of the spine cervical portion, a surgical treatment is indicated.
Surgery on 21 July, 2000: Posterior craniovertebral decompression of the spinal cord’s cervical portion; occipito-spondilodesis.
In the post-operation period: artificial ventilation of the lungs as the spontaneous breathing proves to be ineffective. Left-sided atelectasis. On 24 July, 2000, a tracheostomy was performed as well as repeated therapeutic fibrobronchoscopies. Decubiti have been formed in the occipital area and near the operation wound, the sores demanding a constant doctoring.
At present, the patient’s condition is grave, he is conscious, maintained on artificial ventilation of the lungs as the spontaneous breathing, although existing, proves to be ineffective. Daily training of the respiratory system is performed. During this period, the child has been administered a course of Rocephin, a course of Tienam, a general supporting therapy (neurotropic drugs, vascular preparations); the neck has been immobilized with the aid of a head support. The respiratory therapy is to be continued as well as a symptomatic treatment.
The patient has been consulted by Prof. Yu.A.Garmashov, Head of the Dept. of Children’s Neurology and Neurosurgery of the Medical Academy of Postgraduate Education. Purchasing of an autonomous device for activating the diaphragm breathing has been recommended.
Head of the Department N.B.Korshunov (Signed)
Doctor's Answer
by CCF Neuro[P] MD, RPS, Jan 02, 2001 12:00AM
Cear Pavel:
I am very sorry to hear about the child Alan. I am not sure what I can add. Without seeing the imaging studies, (the pre- and post-op), complete knowledge of the past medical history, etc. it is almost impossible to tell you much besides some generalities which you likely already know. First, I am not sure what disorder Alan has. His condition seems like it is slowly progressive as his muscle strength has declined. It is abit unusual to see lower extremity spasticity and upper extremity flaccidity. Any management issues would be helped by knowing the syndrome that Alan has and things one might be able to do to improve things. I am sure that the group in Russia are fine medical doctors and things have been done well. The issue of weaning from mechanical ventillation is always a tricky issue, especially if the syndrome makes independent ventillation difficult. I am assuming that the muscle weakness is part of the ventillation problem. I am at a loss to add much medical help without knowing more about the syndrome that Alan has, metabolic? strictly congenital? chromosomal? I am really sorry that I can't help.
Sincerely,
CCF Neuro MD
I am very sorry to hear about the child Alan. I am not sure what I can add. Without seeing the imaging studies, (the pre- and post-op), complete knowledge of the past medical history, etc. it is almost impossible to tell you much besides some generalities which you likely already know. First, I am not sure what disorder Alan has. His condition seems like it is slowly progressive as his muscle strength has declined. It is abit unusual to see lower extremity spasticity and upper extremity flaccidity. Any management issues would be helped by knowing the syndrome that Alan has and things one might be able to do to improve things. I am sure that the group in Russia are fine medical doctors and things have been done well. The issue of weaning from mechanical ventillation is always a tricky issue, especially if the syndrome makes independent ventillation difficult. I am assuming that the muscle weakness is part of the ventillation problem. I am at a loss to add much medical help without knowing more about the syndrome that Alan has, metabolic? strictly congenital? chromosomal? I am really sorry that I can't help.
Sincerely,
CCF Neuro MD
