I am at a total loss. After 6 weeks of IV antibiotics for what was thought to be mastoiditis and possible meningitis after MVD 14 months ago and still having chronic pain and swelling in the mastoid bone area my new (2nd opinion) ENT is now concerned after reading 2 CT scans (ordered a 3rd yesterday) that my body is attempting to reject the titanium mesh that was placed over where the skull was removed or worse yet the Teflon patches placed between the 2 arteries and the trigeminal nerve. That the infection was actually caused by my body fighting these foreign items.
The pain was discussed with the surgeon the performed the MVD at 8 and 10 weeks after the surgery and he told me I was not giving it enough time to heal that the nerves in the incision had not healed. He actually started to charge me for office visits after 6 weeks as they were not considered follow ups. I felt as though I was interfering in his practice and that he was not concerned and was blowing me off as a "problem child seeking pain meds".
I completely trust my neurologist, internal med., and ENT doctors as well as my pain management team.
Has anyone else had this problem and what was done to correct the issue? Lord knows I do not what this "reputable" Houston surgeon back inside my brain.
Yikes, I had never even entertained the thought that our bodies could reject the little teflon pads which are meant to bring us relief. I do not have the mesh piece you do. My surgeon did not use that. You have certainly had an incrediblely rough ride of recovery. I am glad you have such a wonderful team supporting you in your ongoing recovery issues with MVD. I seey neuro next week and desperately hope he is still on my team. He has been nothing but wonderful so far.
I have the oddest ticking in my head, right temple to cheek area, since my surgery. My surgeon just brushed it off as bubbles in the mastoid bone. I feel like the alligator who swallowed the clock in Dr.Hook. It does not cause pain really, just discomfort. My TN I is much muted since surgery. I feel a definite improvement in this area. My TN II is worse but hopefully it will settle down.
Long and short of it is that I have written my neurosurgeon out of the picture and will deal exclusively with my neuro. He is the lone ranger on my team right now as my gp just moved. Please keep us posted as to how your recovery continues. We can all learn from your experience.
Thanks and good luck! Lean on your neuro as they seem to be the only ones we can count on for direction. I am quite frustrated as you can imagine and now anxious and would love to slap the surgeon! As soon as the ENT figures something out I will let you know - but the thought of rejection is not a pretty one!
i had the mesh too, and could not heal, so they took it out and used a membrane or something...i healed fast after that
OUCH. How long did it take them to figure it out for you? Did you have the pain behind the ear and headaches like me? I would love to put this thing to rest and get back to life ASAP! Let me know. And thanks for your input -- it will help me with the doctors.
OK...thanks. At least they moved fast on you my dear.
My surgeon was not very attentive after the MVD and completely washed his hands of me at 8 weeks. My ENT is leaning to the mesh being the problem, so I am not pleased at all. I will know more after he does the next CT scan next week. I just hope that the mesh is not embedded or "stuck" and is going to be horrific to remove if it has to be.
Mace said:
got a csf leak at 8 days. tried a couple things, then they pulled it out
it leaked at 8 days (aug7) then again the 11th, and on the 22nd. i had surgery on the 23rd where they took the plate out, dr said it went smooth. i remember asking about the mesh, but he said it was no big deal to remove, though i dont remember exactly what he did for that ( just that he used a 'membrane')..only that i was feeling so much better with the headache gone! lol the 23rd was friday and i was driving my self to school on thursday the 29th, went back to work the next week. i was terrified to have another surgery after feeling so poorly after the first one...but it really was a piece of cake and i wish they had done it at the first leak! see if you can get back in for some other method of sealing the hole. low or neutral pressure inside your head will make it hurt. plus the csf is made from protein, so your body is not healing while diverting resources to making csf.
Mace -- Thanks so much for the information. I will pass this on the ENT and also talk to my neurologist about it when I see him on the 11th. Do you know if there is any type of a blood test that will show them something out of whack? They have not been able to determine why I am having the headaches and now this is making sense to me. I am so glad that you had such a speedy recovery the second time around. Last night, I actually had about an hour with absolutely no pain. I was thrilled. I was laying on the couch, watching TV and just was really still. My husband though I was sleeping -- then the big dog, Ziggy, stuck his snoot in my face to check on me -- I moved and the pain started up again. But -- one hour -- I will take it any time.
Thank you once again for your reply. Any information I can gather to bring to the table is a HUGE help. Best of luck to you going forward. I will keep this updated as I carry on!
I looked up CSF Leak to learn more about it and now things are starting to make more sense to me. For instance -- it says that the headaches are worse when standing or sitting -- my main complaint from the beginning has been that when I get up (especially in the middle of the night) that the headache is so intense it will bring me to me knees and I have to steady myself and take a deep breath before I even think about taking a step. It is also that way in the mornings or after a nap. I take a class 2 narcotic for pain and it hardly scratches the surface and the Botox injections I had three weeks ago do not seem to be doing anything either. I do not know if any of the doctors have thought of this possibility -- especially since I have not seen the surgeon after he washed his hands of me as a trouble maker and drug addict!
Mary, Thank you for sharing your experience. I am 5 1/2 months out from having MVD surgery and I have been in terrible pain. My whole right side is numb (face/tongue/gum/ear) and then terrible pain under my scalp and skull. I also have a lump at the base of my surgical site. The surgeon said it wa leftover sugical cement that he "forgot" to sand down. Like you, my surgeon told me I was not giving it enough time and was a "delicate flower" who could not handle pain. He also forgot to call in prescriptions for the pain. I ended up finding a new neurologist who is wonderful. After an MRI he believe I am having an allergic reaction or infection and wants me to go back to the surgeon. The surgeon is out of the country and will not see me until March 17. In the meantime the pain keeps increasing the lump is painful if just the back of my jacket touches it. I was wondering how your neurologist was able to determine your body was rejecting the titatium? Also, have you had any other procedures since you posted this update? I am very nervous I will have to have surgery again. I did not do well after the last surgery, dehydration/bp drop and had to be re-admitted. I now wonder if my body was fighting the materials in my head. When I mentioned this to my surgeon in November he told me to get off google he was the expert and my "advocate". That was the last time I heard from him. Thank you again with any guidance you can give me.
Well, here is the issue. I went to the ENT and he agreed with my neurologist that I should go back to the surgeon that did the surgery. He did another MRI after insisting that "he had never had a patient experience the issues I was having". Actually he was insulted by a CT scan that questioned the placement of the Teflon pads and wanted to see the films himself. I complied, had the films sent to him, had the MRI and his assistant called and said that there was nothing wrong, "sorry and good luck in the future". In other words, he did not cause the problems I am having. Well, he is the only one that has been inside my brain. Needless to say, I am very bitter, my neurologist and ENT doctor are perplexed and I continue to have ear infection after ear infection and tremendous headaches and scalp sensitivity. I had Botox injections in October of 2013 and they reduced the headache by 70% after 7 weeks, however due to a change in insurance the January injections did not happen on time so I am back to square one and back on narcotics until the Botox kicks in if it does this time around. It has been 4 weeks since the injections and no relief yet. The incision site -- especially where the mesh is -- flares up occasionally but no one can figure it out. We are considering a trip to the Mayo clinic as soon as things thaw out up north. I also have a friend that had an appointment scheduled with the surgeon that did my surgery, after talking to me she cancelled and is going to Mayo where a friend of hers had a wonderful experience with the surgery. My surgeon has a reputation (come to find out) of being extremely arrogant in the medical world. Many physicians do not like to deal with him for that reason. He may be good at most of what he does, however like one of my doctors said "no one doctor is perfect -- and eventually they will error. It is the nature of the beast." Take care my dear and keep me posted. I will keep you in my prayers.
Nora said:
Mary, Thank you for sharing your experience. I am 5 1/2 months out from having MVD surgery and I have been in terrible pain. My whole right side is numb (face/tongue/gum/ear) and then terrible pain under my scalp and skull. I also have a lump at the base of my surgical site. The surgeon said it wa leftover sugical cement that he "forgot" to sand down. Like you, my surgeon told me I was not giving it enough time and was a "delicate flower" who could not handle pain. He also forgot to call in prescriptions for the pain. I ended up finding a new neurologist who is wonderful. After an MRI he believe I am having an allergic reaction or infection and wants me to go back to the surgeon. The surgeon is out of the country and will not see me until March 17. In the meantime the pain keeps increasing the lump is painful if just the back of my jacket touches it. I was wondering how your neurologist was able to determine your body was rejecting the titatium? Also, have you had any other procedures since you posted this update? I am very nervous I will have to have surgery again. I did not do well after the last surgery, dehydration/bp drop and had to be re-admitted. I now wonder if my body was fighting the materials in my head. When I mentioned this to my surgeon in November he told me to get off google he was the expert and my "advocate". That was the last time I heard from him. Thank you again with any guidance you can give me.
Had the mesh removed and surgery was a breeze to recover from compared to the first one. I could not heal at first and got a csf leak, so it was takem out