I saw a neurologist and had a MRI and a 5 mm capillary telangiectasia on the anterior midline of the pons of the brain stem was discovered with no evidence of MS. I have had an EMG and Evoked potentials which were normal and will have a lumbar puncture. The neurosurgeon tells me my AVM is untreatable due to its location.
Over a year ago, the symptoms began as just a tingling under my left eye and progressed to tingling on the entire left side of my face, then a numb feeling on much of the left side of my face which continues. I also have ringing and a shooting pain in my left ear and occasionally in my right ear. My balance is impaired and I have dizziness. I have had an occasional feeling of weakness in my limbs on the left side. My memory/thought process seems somewhat impaired also.
I now experience a prickly-like feeling in both my hands and feet as well as other areas and shooting/stabbing, electrical-like sensations in the ends of several fingers and toes. I have developed intermittent headaches unlike any I have ever experienced that will last from 10 min. to a day. I also have shooting pain on one side of my head at a time sporadically. One form of sensation or another is going on almost continuously.
Do my symptoms sound like they are totally related to the AVM or could this be MS even when a negative MRI for MS? (My neurologist feels it is all stress!) If these symptoms are caused by the AVM, am I having hemorrhaging? Can I expect these symptoms to worsen? If the AVM is inoperable, what treatment options do I have?
The symptoms you describe that happened over the past year concerning the left face/hearing/body, balance and dizziness could very well possibly be due to the AVM depending on its exact location in the pons. Unfortunately, there is some high real estate area in the brain in which a small location could hold very elegant functions, one of these being the pons. If you ever experience exacerbation or recurrence of these particular symptoms (first ones described) this could be due to local mild hemorrhage. We actually had a patient in the hospital recently with a very similar clinical picture including a pontine AVM. We showed the MRI to our neurosurgeon who said the location was too risky for any kind of intervention. (Please keep in mind that I have not examined you nor personally reviewed your films.) However, you could consider bringing your films to a major academic/clinical center for a second opinion.
As for the prickly sensations and headaches, they do not sound typical of the AVM in the current location nor do they sound like MS, especially with a normal MRI. (if you're having active symptoms due to MS, they should theoretically show up on the scan) It could be due to stress, but perhaps routine labs should be checked such as diabetes and thyroid as well as a formal neuro exam. GOod luck
Thank you so very much for responding. I feel you have confirmed my suspicion that I have had all along of possible hemorrhaging going on due to the persistent symptoms I have been having. I KNOW there is something more going on than just stress, although my neurologist does not seem to think so. I do realize the seriousness of my diagnosis and the prognosis is not very encouraging but I do plan to pursue further medical advice. I will be seeing my neurologist the end of the month and after I have a lumbar puncture and any other tests/labs that may be indicated, I will send all records, MRIs, and tests for review to a neurosurgeon who, from my understanding, has done surgery on AVMs on the pons in more than 200 patients.
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