On top of everything else after MVD, what was thought to be entrapped nerves in the incision has turned out to be mastoiditis. We went down that road several months ago yet the symptoms in the mastoid were minimal and the ENT blew it off completely. After 20 days of an antibiotic for an angry tooth, the stopped up ear started and the pain along the incision site became unbearable as the headache intensity got to the point where I maxed out on my pain meds. A trip to my PCP confirmed an ear drum that looked like "it was on fire" and swelling in the mastoid that was visible behind my ear. The mastoid is the "bone" like structure between the incision and the ear. It is so freaking tender that it brings tears to my eyes to roll over on it in my sleep and send shooting pain that can bring me to my knees. The good news is that we have gotten to the bottom of the mysterious "pain in the incision" that the pain management team wanted to do a nerve stimulator implant for (NOT) that my neurologist was dead set against and my PCP could not understand why when nerve blocks and steroid injections did nothing for the pain. -- they are so fired! The bad news is that I am allergic to the majority of antibiotics used to treat the "bug" that causes the infection. So, trial and error for the first 10 days. If, it clears and stays away -- mission accomplished. If it comes back I have to go the route of an infectious disease doctor and possible hospitalization for infused antibiotics since it is a bone infection. I am glad that we got to the bottom of the mystery pain, but am concerned about the infection looming around in my head for over a year. My PCP is concerned that the infection has settled in my skull bone so I will be having a scan done in the near future to determine if the infection has homesteaded in the skull and if it has also infected any part of the brain tissue. I thank God for this site when things like this crop up as I have a place to vent to people that can understand the frustration. I do not want the conversation here at home to revolve around the negative aspects of what I am dealing with moment to moment and try my best not to dwell on it as I can see how upsetting it is to my husband. I pray for all of you each day, whether you are debating to undergo MVD, or are living with TN controlled with meds or what ever your case may be. It is not easy. Mine is and was an unusual case and the issues following my surgery are NOT typical. My MVD was successful...for that I am grateful and there is a light at the end of my tunnel. I will start Botox injections next week for the residual headaches next week. I have now found an answer to the mystery pain. Never give up hope and remember that each case is different. I just needed to vent a bit this morning so that I can move forward through the day and enjoy my husband, my pups and the humming birds that are now showing up in droves to entertain me. Hugs and much love to all in a Texas sized portion.........
Yes, loving the humming birds here in TX and have a lot of butterflies too, love my garden time and so love time with my furry kids :) So sorry you are going through the complications and we are always here to listen as you know. I truly hope the antibiotics will be the answer. With that said if needed, I truly believe during my husbands 2 1/2 years in the hospital the infectious disease Dr saved his life. Of course it was a group effort, but a good ID doctor is a blessing! Not sure what part of TX you are in, but if anywhere near the Houston area I could give you the name of his ID Dr. Again hoping not needed though!
Betsy
I am in Houston near Cypress actually. If the pain is not noticeably better by Monday I am suppose to call the PCP back and go from there. So, the ID Dr. name would be appreciated. I have one but I think the PCP may have another one in mind and I like to research before the initial visit anyway. Thanks Betsy.
OH - the hummingbird battle was wonderful this morning. There were as many as 5 of them "air dancing" with one of them sneaking a sip every once in a while. LOL
We are not that far apart, maybe we can get together sometime on one of our better days, support meeting :) I am in North Spring. His office is on 249, just North of 1960, so that would be kinda close for ya. His name is Sharaf Diwan, 832-604-0005. He has a nurse named Linda that is the best nurse and truly one of the nicest, most compassionate people I have ever met. When she used to visit hubby I didn't want her to leave, we also hit it off because we are over the top about loving our dogs :) But seriously, this Dr. is also so kind and caring and takes the time to listen. You feel like you are his only patient and I sure have found that to be a rarity anymore!