I had my MVD about 20 months ago in Northern California.
I woke up with this horrible pressure on the right side of my head where I had the MVD.
Since my MVD pressure on the right of my head has not gone away. I have constant head pain, numbness on right side of my face, feel like the numbness after visiting the dentist office, stiff neck, jabbing pain behind right eye. Only on the right side I have tearing eye and watery nose.
I have seen many neurologist in Northern CA. but, no one is able to diagnose my condition. They keeps prescribing medication for headache. I have had two MRI and both came clear.
In my research I have found out about two possibilities: CSF leak or Anesthesia Doloroa.
Does anyone suffer from similar symptoms?
How can I diagnose my condition?
What tests except MRI should I ask my neurologist?
The "horrible pressure" just after an MVD might indicate some form of nerve damage incurred during the procedure. But after 20 months, I would have expected more development or elaboration of the pain pattern. CSF leak would have shown up in a spinal pressure check by spinal tap, and I doubt it would have persisted for more than a few days at a steady level. If a check of spinal pressures hasn't been done, then it probably should be.
The right-side watery eye and nose might be called "SUNCT" headache. Has anyone used this term in describing what is going on? Indocin and other anti-migraine meds are sometimes prescribed for this type of headache, generally with somewhat mixed results. They help some patients, but not others, and it's not always clear what distinguishes the two groups.
The numbness in your right face is not that unusual following MVD. Numbness is a fairly frequent side effect of the procedure. The common profile for Anesthesia Dolorosa, however, is a surface numbness and insensitivity to light touch, with deeper burning pain below the surface in the same area. You don't mention the burning pain component, so I'm uncertain if that's what is going on.
I've shared your posting with a specialist MD friend of mine for a second opinion. I'll let you know if he comes upl with anything...
I have not been checked for Spinal pressure or leak. I brought it to my Neurologist attention couple times and she says MRI doesn't show anything related to it so, it probably is not CFS.
At the headache clinic of nearby hospital once I was diagnosed for Migraine headache and then a year later with Hemi Crania Continu which, is really a chronic headache. I was put on Indomethacine which, I could not tolerate the horrible abdominal pain. I stopped taking Indomethacine and I am back on Gabapentine.
I read about SUNCT. I have not been diagnosed with this condition. I am puzzled because I don't have headache. I have this constant pressure on the right side of my head. My head feels like being in a vice that gets tighter and tighter.
I have jabbing pain right behind my eye, droopy eye, insensitivity to the light touch, runny nose and runny eye all on the right side. I don't have deeper burning pain but every so often I have this shooting pain on the right side but with the jabbing behind my eye I cant really differentiate between shooting pain and burning pain.
I feel there is swelling near the incision. The pressure and tightness on the right side of my head really concerns me. I have constant tightness on my neck which travels down to my shoulders and back.
Do you think a CAT Scan would be helpful?
What should I ask for from neurologist in regard to Spinal Leak. Is there a test?
I appreciate any help you can provide.
Thanks
Richard A. "Red" Lawhern said:
The "horrible pressure" just after an MVD might indicate some form of nerve damage incurred during the procedure. But after 20 months, I would have expected more development or elaboration of the pain pattern. CSF leak would have shown up in a spinal pressure check by spinal tap, and I doubt it would have persisted for more than a few days at a steady level. If a check of spinal pressures hasn't been done, then it probably should be.
The right-side watery eye and nose might be called "SUNCT" headache. Has anyone used this term in describing what is going on? Indocin and other anti-migraine meds are sometimes prescribed for this type of headache, generally with somewhat mixed results. They help some patients, but not others, and it's not always clear what distinguishes the two groups.
The numbness in your right face is not that unusual following MVD. Numbness is a fairly frequent side effect of the procedure. The common profile for Anesthesia Dolorosa, however, is a surface numbness and insensitivity to light touch, with deeper burning pain below the surface in the same area. You don't mention the burning pain component, so I'm uncertain if that's what is going on.
I've shared your posting with a specialist MD friend of mine for a second opinion. I'll let you know if he comes upl with anything...
CAT scan doesn't have the resolution of MRI, and probably doesn't contribute much to diagnosis of TN and related medical problems, apart from eliminating sinus blockage or bone deformities as an issue. If your neurologist has advised that there is no good evidence to support further spinal tap pressure checks, then I wouldn't recommend that you have one. There are always risks in spinal tap, however small. Primarily spinal meningitis or other infection-related problems introduced during the tap. The swelling near your MVD incision bothers me in this connection. After 20 months, you shouldn't have that issue from the operation itself. Do you have elevated white cell counts or other bloodwork that indicate inflammation or infection?
About your head feeling like you're in a vice, there is a question to ask your neuro: has he or she positively eliminated blockage of the ventricles and elevated CNS fluid pressures in the brain? AKA Hydrocephalus.
The jabbing pain "behind" the eye, however, is pretty classic for Type 1 TN, so I'd say that regardless of whatever else may be going on, that diagnosis seems pretty much confirmed.
The constant tightness in your neck and down into your shoulders could be a form of "referred" pain that is related to the way you hold your head or "flinch" from the jabs you experience in your face. Alternately, I would think your neuro might want to evaluate for Complex Regional Pain Syndrome, even if only to eliminate it.There are no conclusive tests that I know of for CRPS, but the overall pain pattern might fit the diagnostic criteria there.
I'll let you know what I get back from my MD friend. Meantime, for your own safety, be advised that although I do a lot of reading in medical literature on behalf of patients, I am not a licensed physician. My doctorate is in systems engineering and my wife is the TN patient in our household.
CAT scan doesn't have the resolution of MRI, and probably doesn't contribute much to diagnosis of TN and related medical problems, apart from eliminating sinus blockage or bone deformities as an issue. If your neurologist has advised that there is no good evidence to support further spinal tap pressure checks, then I wouldn't recommend that you have one. There are always risks in spinal tap, however small. Primarily spinal meningitis or other infection-related problems introduced during the tap. The swelling near your MVD incision bothers me in this connection. After 20 months, you shouldn't have that issue from the operation itself. Do you have elevated white cell counts or other bloodwork that indicate inflammation or infection?
About your head feeling like you're in a vice, there is a question to ask your neuro: has he or she positively eliminated blockage of the ventricles and elevated CNS fluid pressures in the brain? AKA Hydrocephalus.
The jabbing pain "behind" the eye, however, is pretty classic for Type 1 TN, so I'd say that regardless of whatever else may be going on, that diagnosis seems pretty much confirmed.
The constant tightness in your neck and down into your shoulders could be a form of "referred" pain that is related to the way you hold your head or "flinch" from the jabs you experience in your face. Alternately, I would think your neuro might want to evaluate for Complex Regional Pain Syndrome, even if only to eliminate it.There are no conclusive tests that I know of for CRPS, but the overall pain pattern might fit the diagnostic criteria there.
I'll let you know what I get back from my MD friend. Meantime, for your own safety, be advised that although I do a lot of reading in medical literature on behalf of patients, I am not a licensed physician. My doctorate is in systems engineering and my wife is the TN patient in our household.
I am 27 days post op and I have extreme pressure on my left temporal area and extreme ear fullness and tinnitus. I am hoping these symptoms subside because I can't go on like this. I am so afraid of staying like this that I have been having panic attacks. I am also almost deaf in the affected ear. Every day I wake up and I feel no better than the day before. If I am better, I do not notice it. I see my surgeon in two days for my post op visit.
I am 27 days post op and I have extreme pressure on my left temporal area and extreme ear fullness and tinnitus. I am hoping these symptoms subside because I can't go on like this. I am so afraid of staying like this that I have been having panic attacks. I am also almost deaf in the affected ear. Every day I wake up and I feel no better than the day before. If I am better, I do not notice it. I see my surgeon in two days for my post op visit.
Hi I'm Liz I just had mvd surgery 4months ago,I had the same post op experience...I am still healing and it can be slow but the pressure fullness and vertigo got better for me and the deafness as well....I also had terrible anxiety over it such a terrible feeling to have hang in there ! Sending you good thoughts.
I was wondering if you ever got any answers. I am 2 years post MVD and feel very much the same as you do. I have been diagnosed with SUNCT.... but have found nothing to relieve symptoms. I also have HFS. Right now I am trying Trokendi, but it doesn't seem to be helping . I am at my wits end.
Hi Kelly I hope your feeling better I’m not used to this new web site . I still have no t improved from m v d surgery vertigo is gone but I’m left with pain that is same as before surgery … My biggest nightmare . I have type 1&2 t n . I don’t know what to do at my wits end also. I’ve tried everything latest oxcarmazapine on top of gabapentin doesn’t do anything for me but make me pass out can’t function . Do you have support? I’m sorry so late getting back to you.