Hi everyone…I had my Right PCOMM anuerysm clipped April 2014. I have had three surgeries on the brainstem since then to try and correct compression…totally unrelated but hence why I am now asking about this other situation…yes…been a little busy trying to stay live…but so far so good.
Anyway…back to my original reason for posting…I had a pterional incision that has caused significant atrophy of the Temporalis muscle…which I know happens to a lot of us…that I can deal with, but my jaw has been dislocating anything up to 30 times a day. I had images taken and have been sent to a maxillofacial surgeon by my neurosurgeon as he said this does happen and the atrophy creates a situation that causes the jaw to not be able to stay in place. I will see what the surgeon says, but the neurosurgeon seems to think that a reconstruction or a muscle graft will be necessary. Has anyone that has had a Pterional cut had this happen to them or know of anyone it has?
Thank you in advance…I like to gather as much info as I can to be well informed as the doctors speak to me about things. Given I have had four surgeries in 12 months, I’m not too keen to go back on the table again…but it is VERY painful so think I will have little choice.
I actually have been having severe TMJ clicking post MVD surgery. This is a surgery to alleviate pain due to Trigeminal Neuralgia. I realize many of you are not familiar with this ailment. I suffer from it along with having a 3mm annie. Anyway, the surgery was also behind by rt. ear and by my brainstem. I now cannot open my mouth without hearing a very loud click and actually feeling my jaw "shift". I just asked last night about this at a seminar with another neurosurgeon and she was not aware of this being a problem but...I have to think there is some connection, especially after seeing your question!
I don’t have the TMJ issue on the left side. the left side is where I have had the retrosigmoid approach done for the brainstem and have had this done three times. Where the Temporalis muscle atrophy has occurred is on the right side at the top of my face extending downward due to the Pterional incision where it was required to cut thought theTemporalis muscle. Some people don’t have the atrophy as the muscle is able to repair from where the neurosurgeons try to put it back in place…in some…like myself, the muscle did not repair and basically died form want if a better description…which then compromised the stability of the jaw. The atrophy of this muscle sometimes will only cause a significant dent in the temporal area (which I have also) but in my case it has extended down past the TMJ and caused my situation. Not overly common but is considered a complication of the Pterional incision. If not for the pain, I would leave it alone…but the neurosurgeon said it will not improve and in fact, will worsen.
I’m sorry you are having discomfort with your jaw after the retrosigmoid MVD? I have got major discomfort still on that side as well as occipital nerve damage…but no TMJ issues there. I hope you get some relief soon.
Gosh, this seems a good place for a complementary medical approach. Just as a trial maybe you could locate someone with cranial sacral body work training as in a Rolfer or Chiropractor. I have had fantastic results from both. The other thing that seems like it might help is taking the enzyme, serrapeptase. I used Serraflazyme which is a brand name. It dissolves scar tissue that locks up muscles. The atrophy in my forehead was fixed by that. Now I have equal muscles on the untouched side and the surgery side. I also had PComm clipping. My 4th ventricle was not draining well and that seems to have been alleviated by my Rolfer. While these things cost and aren't covered by insurance, they also aren't invasive.
I have had TMJ problems for most of my adult life. I used Chiropractic and acupuncture, as well as a special bite plate called NTI, to keep me from grinding my teeth at night. (It's very small) After my skull was removed due to vasospasm, I noticed my ability to chew hard things was very painful. I gave it time- I mean a year before I began to chew gum. At first it was a bit painful, so I'd back off for a few days and then try again. I still hear the grinding of my right jaw but feel no pain. However, unless I am lying down, my ears are perpetually clogged. This can be nerve wracking.
Troy...thank you so much for sharing this...I was treated w/the minimally invasive procedure which is not at all minimally invasive to the internal arteries, cranial nerves and the tissue....mine, begins w/multiple stents for the procedural dissections and from the extravasated contrast dye, which is termed encephalomalacia (softening/shrinkage of lobe tissue) and gliosis...the scarring of tissue. Where the lobe tissue shrunk, the adjacent ventricle expanded...in a term called hydrocephalus 'exvacuo'...which means was my God-given (maintained?) normal CSF flow...I have not yet needed a shunt. I will definitely check out Serraflazyme ... for anything it may help prevent / overcome.
I am so open to sharing, because it displays the damage via the minimally invasive procedure...has not been reduced to injury/damage than may occur in open-surgery. the diff is the open surg is visible..
I also did the activator (light touch) chiropractic, acupuncture, craniosacral therapy, massage therapy, vision therapy.
Troy, your sharing is grand...thank you, again...
Troy said:
Gosh, this seems a good place for a complementary medical approach. Just as a trial maybe you could locate someone with cranial sacral body work training as in a Rolfer or Chiropractor. I have had fantastic results from both. The other thing that seems like it might help is taking the enzyme, serrapeptase. I used Serraflazyme which is a brand name. It dissolves scar tissue that locks up muscles. The atrophy in my forehead was fixed by that. Now I have equal muscles on the untouched side and the surgery side. I also had PComm clipping. My 4th ventricle was not draining well and that seems to have been alleviated by my Rolfer. While these things cost and aren't covered by insurance, they also aren't invasive.
Anita...thank you for all you have shared here...I was coiled...so we have that difference...with so much commonality inside the brain...ours is just not visible publicly...except our eyes, our hearing, our cognition, and more. We with coils, also may have a number of stent implants; some off-label and some off-record...except for billing and some angio imaging.. the tiny bit of images maintained...
This all makes me wonder about the skill/experience of the neurosurgeon doing the procedures. I had the full on cut a little window in my skull and dig into find the bleeding artery and clip it. And yet my ongoing issues seem so small compared to what many of you have to cope with. Is anybody doing research and keeping statistics on what happens after the various procedures and what the outcomes are for different surgery centers? I think I lucked into one of the best and super-highly experienced neurosurgeons, Dr. Lawton at UCSF (Univ. of CA at San Francisco).
Thanks you everyone for your responses…it is so nice to feel less alone when we share our experiences…albeit it slightly different or a lot different for each of us…the common thread remains and it is lovely to have a soft place to fall or to simply ask questions and interact…again thank you.
I am certainly looking into less invasive measures for sure and thanks to you Troy, I know how far more information than I started with. fantastic!
The imaging I have had done recently is showing that the jaw is chronically dislocated…I am able to move it back into a semi functional position after each time is comes out of the joint…but this is becoming harder and harder to do. The Neurosurgeon explained to me that to clip the Pcomm aneurysm, they have no choice but to cut through the Temporalis muscle for access and although for a great many, this repair they do will be sufficient to promote further healing and then full function without atrophy…and for some…it will not. He mentioned that due to the fact that the imaging is showing the extent of the damage, that it would be virtually impossible for the muscle to regenerate and function normally as it has very little remaining…without giving attention to the jaw, then I am possibly going to end up breaking Areas of the jaw due to gently yet quite forcefully putting the jaw back into place…which as I said, is becoming less and less easy to do… But I’m encouraged by Troy’s experience that there may well be a less invasive way to deal with this…and avenues I intend to explore…thank you again.
Interesting. I don't think my surgery cut into the temporalis muscle. I guess for you that has already happened and the damage is done. I keep talking about my forehead because that is where the action happened for me. My atrophy was above my eyebrow. The area that used to look collapses started around the inside beginning of my eyebrow out to my hair line. As I understand my surgery an incision was made just behind my hairline at more or less the midpoint of the top of my head and extending toward my ear. That skin was peeled down to expose my skull. A window was cut out of my skull above my eyebrow at about the midpoint. There were also 2 "boreholes". One is just to the outside of my eyebrow and the other is at the top of my forehead near where the incision started. I call these divets because that is what they feel like, sort of a small crater. The window was covered over with a metal plate that is screwed into my skull. It is pretty small, maybe about 1/2" x 3/4". I know my discharge papers say its exact size, but that is in metric. So based on a picture of the temporalis that I just looked at, I don't think mine was cut. I think that back when I was trying to learn about what happened to me I saw two things that P Com might mean. Mine meant posterior communicating artery toward the front of the Circle of Willis. This just makes me feel more strongly that a database on the different surgical approaches and outcomes would be really, really nice to have, especially for people who get to choose the time and place of their surgery. I just lucked into my good fortune of going to UCSF because the smaller, regional hospital where I was first taken told me I had to have brain surgery and they were "willing" to do it there or I could go to UCSF where there was an excellent surgeon who had done 3000 of those surgeries. It's a marvel that I could answer them and say UCSF, please. I was amazed that they were willing to let a patient go elsewhere, but now I think that they didn't want to do a surgery that might give them bad statistics.
