Does anyone have a sunk in temple?

I was wondering if anyone has experienced a sunk in temple?? After my second cyberknife, I am experiencing so many more problems. I now have anesthesia dolorosa, no longer producing tears in my TN side left eye, severe burning, etc. I guess all the problems to come with a damaged trigeminal nerve. For months now, I have not been able to touch my left temple and now it has sunk in. I don’t know if it is just atrophy or what. I don’t know to schedule a follow up appointment with my neurologist or ophthalmologist who is helping with my vision disturbance due to this 2nd cyberknife. I should of never had my second CK. Please let me know if anyone is experiencing this problem. Thank you in advance for responding. I don’t know what I do without everyone in this group. I read everyone’s post daily. I have learned more here than anywhere else. Thank you for everyone’s support!! Hope all is having a good day!!

Hi Donna, I’m so sorry to read of the problems you’ve been experiencing…
If it were me, I would first and foremost call whoever performed your CK, as well as your neurologist. Between the two of them they should be able to discuss and address your concerns. I wish I could advise you in terms of the symptoms you describe, but I have no experience with CK.
If you haven’t already done so, go to the Groups section, we now have an anesthesia dolorosa group.
Thinking of you, ((( hugs ))) Mimi

Thank you!! I will do that. I am also so sorry to hear about your setback. I have read all your post and I hope things are going better for you!! :slight_smile:

I'm so sorry to hear about your problems. I hope that you find relief very soon. May I ask how long you waited between cyberknife procedures? I had MVD in March and gammaknife in July. With every procedure things just seem to get worse. It is like TN is a living beast and it is fighting back. I am scheduled to see my neurosurgeon again on the 24th and am afraid that they will be pushing for me to have a second gammaknife. Thank you for sharing your life with us so that we may all make better choices regarding our own treatments.

I had my first MVD in August 2011, 2nds MVD November 2011, then first cyberknife in June of 2012 and 2nd cyberknife in December of 2012. I figured if I went for the more invasive procedure first, that I would of been pain free for a while. Boy, was I wrong! I have a hard time with these meds and just wanted to attack it with all I had. I never thought in a million years that I would be sitting in the position that I am in now. You work so hard to get the kids all grown up and then it is suppose to be time for you and your husband. Well, with TN it doesn’t work that way. I am so angry at times with this situation. I should of never had the 2nd CK. If I were you, I would not receive the second gamma knife. You have a good chance of it permanently damaging you nerve, then you will be helpless at that point. I am so sorry for being negative, but since I had my second CK, it has been one thing after another. I just thought it was bad before, I had no clue what was about to hit me. It was the biggest mistake of my life. I wish I would of been told not to have it. Did you have any good results with you GK? Both times I had about 30% improvement, which I loved!! Both times, it came back with a vengeance! It is such a hard decision and that makes it worse because we are so desperate and that is where it gets us. I wish you all the best of luck and hope this helps you make a little better decision. I know we are all different but sometimes we end up with the same result!! Good luck to you and I wish you the BEST of luck!! Let me know what you decide. :slight_smile:

Thanks DonnaS - Thank you for responding. I am already thinking that I will not have the second GK. The first did no good for pain, just brought on more numbness. My MVD took care of the pain in my nose and cheek but I am still having horrible daily pain in my forehead, sclap and ear. I had so many side effects from both procedures that I am leaning toward just letting things settle down a litte. Also since they can only do the GK twice, I kind of want to keep that option open for hope in the future should the pain get so bad I just can't take it anymore. Right now Tramadol and baclafin are controling the beast to a tolerable level. I am working only part time and am on LTD from work to fill in the gap. I am afraid that LTD will not continue to pay if I choose not to do the second GK if the doctor reccomends it. We'll see where it all takes me.....

I’m so sorry to hear you suffer from TN and Anesthesia Dolorosa. I do too, and have had for 15 years. I had a seriously sunken temple and drooping eye that developed after surgery to remove a tumor on the trigeminal nerve. The ice cream headache pain from TN is horrible but AD is almost more troubling because it restricts my activities so much. It’s constant and everything I like to do sets it off. I’m hypersensitive to complications from the many meds my Dr’s have put me on so now I’m just taking Gralise, Codiene, Aleve and being very careful not to do the things which I know will make it worse. I had surgery to correct the sunken temple and eye issue 4 years ago. The surgeon found that the skull bone that had been removed and then screwed back in place, during the initial brain surgery, had atrophied as had the muscle in my temple. I look more like myself now.

Omg its almost as if your describing me when you speak!! This is the first time ive ever heard of anyone else with this issue

My neurosurgeon says my temple is caving in due to the fact I have TMJ so bad I cant open my mouth more than 1/2 inch I cant chew, est meat, I live off soft vegetables, soups and yogurt etc… atrophy has set in he says if my jaw isnt corrected soon my temple will continue to cave and I will eventually loose all jaw function. Problem is im on medicare and it doesn’t cover oral surgeons

I also have problems opening my mouth normally. The neurosurgeons tell me my caved temple and jaw problem was caused because the nerves and muscles they cut in order to access my brain tumor never reconnected fully and therefore atrophied. They didn’t realize how much the bone had atrophied until the reconstructive surgery 4 years ago…I now have a plate screwed to my skull where the bone “died”. Was your TMJ a result of surgery?

I have never been diagnosed with TMJ. My jaw also doesnt open all the way anymore. I really feel that this problem is from my second cyberknife. I haven’t seen a doc for it yet but I need to. My mom is very sick so I have had to put me on the back burner for now. Thank you so much for responding. I’m not sure if it is from MVD or CK now. I figured it was atrophy, I just don’t know what they can do for me to help. I am worried about it spreading to my eye or face.

I think they can fix bone structure behind if that is what you need!

I don’t know much about cyber knife surgery or how that would cause atrophy. My tumor was initially considered to be in an unreachable place and therefore inoperable. They thought surgery might blind me. I was the sixth patient in an experimental new way to reach it. They used the traditional tempular craniotomy (8 inch scar) and esentially peeled the left side of my face off to cut through all the muscles and nerves. I’ve been told that’s what caused all my TN and Anesthesia Dolorosa problems. I’m not convinced now after reading of the similar problems so many of developed from other surgical methods.