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Diagnosed with CM 1. Have burning sensation on head and numbness on face. Eyes feel swollen. Have cyst in sinus cavity. Help?

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I have been diagnosed wtih CM 1, however, I have a burning sensation on the left side of my head and numbness down the left side of my face. My face - jaw, teeth hurt all of the time - I feel like water is draining from my ear - I already looked at TMJ - no relief - I am generic form of Nurotin - low lose because of sleep handover but it has not touched this pain. I don't feel as bad in the morning but by mid-afternoon the burning and face pain get to be bad - my eyes feel swollen - sensitive to light, noise and heat - My face skin feels really tight,but does not look tight - Is this related to CM 1 or is something else wrong. I do have a cyst in my sinus cavatity but have been told it is not a problem - Any help would be appreciated -
Posted Sun, 28 Jul 2013 in Brain and Spine
 
 
Answered by Dr. Sandhya Manorenj 2 hours later
Hi,

Thank you for writing in.

Your symptoms are consistent with left sided trigeminal neuralgia (nerve which supplies face, forehead region,jaw and mandible).Symptoms are mostly due to chiari malformation type 1.

In chiari malformation type 1 there is herniation of cerebellar tonsil of more than 3mm beyond foramen magnum.Sometimes medullary kinks and brainstem herniation are also seen associated with it.This stretches nucleus of trigeminal nerve located at brainstem and produce such symptoms.

It is worthwhile to consult neurologist for clinical examination and further plan.She may also require repeat MRI at cevicomedullary junction to confirm it .

Meantime,avoid strennous activities.You may require neuralgic drugs (like pregabalin or gabapentin or carbamazepine ) for facial pains, along with vitamin B12 preparation.

Hope I have answered your query.Please get back if you require any additional clarification.If you are satisfied with my answer ,kindly rate my answer.

Regards

Dr Sandhya Manorenj
Neurologist
Hyderabad, India

Above answer was peer-reviewed by
 
Follow-up: Diagnosed with CM 1. Have burning sensation on head and numbness on face. Eyes feel swollen. Have cyst in sinus cavity. Help? 15 hours later
My tonsils are 8.3 mm below the magnum and I don't have any flow on the posterior side of the tonsils but have flow on the anterior and inferior side as determined by the Cine MRI. What is the cevicomedullary junction? I have been taking B12 - how much should I be taking? I also have been on gabapentin (400 mg) and it has not helped the pain. Will strennous activities make my condition worse - I have not seen an improvement or worsening of syptoms when exercising - I am just too tired and in pain to want to work out. Why would my neurologist tell me on my first visit that the CM 1 was the cause of this pain and on the second visit say no and wants me to see another neurologist for other explanations?
 
 
Answered by Dr. Sandhya Manorenj 15 hours later
Hi

Q)What is the cevicomedullary junction?

A)It is the junction between cervical spinal cord and medulla (lowermost part of brainstem).To look for medullary stretching and syrinx (cavity in the centre of cervical cord)

Q Dos e of B12 ?

A)500 microgram daily.In some patients of trigeminal neuralgia injection methylcobal (Vitmanin b12) alternate days has relieved their symptoms along with neuralgic drugs

Q) Gabapentin 400mg /day ?

a) It is minimal dose can be hiked as per your symptoms to XXXXXXX 1800 mg

b) Combination of nortryptine along with gabapentin is useful to control neuralgic pain not responding to gabapentin alone

c) other drugs like carbamezipine, baclofen also can help you to relieve your symptoms

All has to discussed with your treating doctor

Q) Will Strennous activities make my condition worse?

A) Yes strennous activities can worsen neuralgic pain secondary to chiari malformation.

Q) Why would my neurologist tell me on my first visit that the CM 1 was the cause of this pain and on the second visit say no and wants me to see another neurologist for other explanations?

A) Based on history you have trigeminal neuralgia.There are many causes for it. CM can produce it,other causes are idiopathic, vasculitis , demyelination. May be he want to make sure that vasculitis has produced it ( Inview of raynauds phenomenon,? sjogren, ? may be MRI does not reveal medullary compression)

There are many treatment options for CM1.If neuralgic symptoms are related to CM1 and not effective by medical treatment as mentioned ,then surgery is required.If neuralgia is secondary to vasculitis then steroids are indicated

Surgery (For CM) is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. Most individuals who have surgery see a reduction in their symptoms and/or prolonged periods of relative stability. More than one surgery may be needed to treat the condition.

Posterior fossa decompression surgery is performed on adults with CM to create more space for the cerebellum and to relieve pressure on the spinal column. Surgery involves making an incision at the back of the head and removing a small portion of the bottom of the skull (and sometimes part of the spinal column) to correct the irregular bony structure. The neurosurgeon may use a procedure called electrocautery to shrink the cerebellar tonsils. This surgical technique involves destroying tissue with high-frequency electrical current

Hope this will help you

Regards
Above answer was peer-reviewed by
 
Follow-up: Diagnosed with CM 1. Have burning sensation on head and numbness on face. Eyes feel swollen. Have cyst in sinus cavity. Help? 12 hours later
Thank you for your responses. I do have a few more questions: The one MRI says that my tonsils are rounded not pointed, the tonsils extend below the foramen magnum to the superior margin of the posterior arch of CI - The fourth ventricle is normal - signal intensity within the brain normal and no focal prior infarction, demyelination or mass effect. The ventricles are normal. Does this mean I don't have compression? -I don't see anything else in the reports related to compression. If I don't have the decompression surgery will my symptoms get worse - nervous system, blurred vision, confusion etc?
 
 
Answered by Dr. Sandhya Manorenj 11 hours later
Hi,

Based on your MRI there is nothing suggestive of compression at the brain and brainstem .There is no comments on cervical cord on your MRI reports.

Blurred vision and confusion cannot be explained based on your MRI brain reports. CM1 does not produce blurred vision and confusion unless it is associated with hydrocephalus (enlarged ventricle).There is no role of decompression surgery if symptoms are not related to CM1. This is the first time in your discussion you mentioned blurred vision and confusion.

There are many causes of blurred vision ,One can exactly find the cause, based on fundus examination and acuity of vision testing.

Detailed higher mental function and meningeal signs to be tested and based on it further tests needed to know the cause of confusion (blood sugar, serum electrolyte,and thyroid profile.

Regards
Above answer was peer-reviewed by
 
Follow-up: Diagnosed with CM 1. Have burning sensation on head and numbness on face. Eyes feel swollen. Have cyst in sinus cavity. Help? 35 hours later
Thanks for your reply. So are you saying that surgery will not help my symptoms of the trigeminal neuralgia - because the MRI does not show compression? I know of other people with CM 1 that complain of my same symptoms including blurred vision and confusion - This occurs with me later in the day - around 3-6pm - not really bad until then. Can you explain what tells you that I don't have compression (is it because the tonsils are rounded?) - I don't have a syrinx - C2-C3 adn C4-C5 are unremarkable - C5-C6 There is disc-osteophyte complex with effacment of the vertral thecal sac and deformity of the ventral aspect of the cord. There is mild bilateral neural forminal stenosis. C6-C7: There is a disc-osteophyte complex with uncovertebral hypertrophy. There is mild-moderate neural foraminal stenosis. There may be mild left neural foraminal narrowing. C6-C7: There is a disc-osteophyte complex with effacement of the ventral thecal sac and mild deformity of the ventral aspect of the cord. There is right neural foraminal stenosis. There is possible left neural foraminal narrowing. C-T1: Unremarkable. I have been tested for all of the other items you mentioned - eyes, thryroid, blood sugar (not sure what serum electrolyte is - can you explain)
 
 
Answered by Dr. Sandhya Manorenj 17 hours later
Hi,

Based on the details of MRI brain and cervical cord you seems to have chiari malformation type 1 with out any compression at the brainstem and cervical spinal cord (in view of MRI showing normal brainstem and absence of syrinx).

Though your cervical spine does not show syrinx secondary to CM1 but it shows features of spine degeneration leading to disc osteophyte and mild to moderate spinal canal stenosis with mild cord compression.This might also cause damage to descending tract of trigeminal nerve resulting in sensory loss , facial numbness,and facial pains . Hence you may get benefited with short course of steroids in view of cord compression. Blurring of vision in evening can also be produced by cervical cord edema impinging the cervical sympathetics that supply pupils of eye ( leading to condition called horners syndrome)

Hence it should be emphasized that clinical examination for horners , pattern of sensory loss will help one to confirm it.

Discuss with treating doctor regarding same.You may require opinion of neurosurgeon also.

I apologize for delay in response

I hope this helps you.

Regards
Above answer was peer-reviewed by
 
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