So had MVD on 09/17/13, things were going well until 10 days later, during this time had headaches and low grade fevers less than 100 and heachaches, then on 9/27 and 09/28, fevers spiked to over 102 in the evening. Went to ER and was admitted for a series of tests. MRI of brain, ultra sound of legs for blood clots, and more blood tests then you can imagine. Infectious Diease doctor was brought in to evaluate, Everything was negative, Then 10/1 had a spinal tap to see if there was an infection in the fluid, Spend a week in the hospital on IV antibotics and another 6 days at home to finally get the results back from spinal fluid, all clear. Surgeon feels it is my brain having a negative reaction to the pads he placed there to decompress the veins from the nerve. Then Surgeon placed me on treatment of steroids and started to feel better no fevers minimal headaches, now after finishing the treatment roughly 48 hours- fevers are back. He told that i would get the headaches but never expected the fevers. I am told this may take a while for my brain to adapt - even months, I am almost 5 weeks pos op and thought I be going back to work next week. Has anyone experienced this type of situation and if so, how long it take for your body to adapt?
Wow ,in 3 years I don’t know I’ve much seen about this…if Teflon continues to be a problem… I believe there is another type to put on there! Put Teflon in search box!
Hi John,
From my research, if i remember correctly…only 5-8% have that allergic reaction to the Teflon.( don’t quote my statistics)
So sorry to hear about the delay in your recovery and all the tests / hospital visits…
Have you tried googling “aseptic meningitis/ allergic to Teflon”?
You might find other stories of people who have experienced the same thing.
Hope you start feeling better soon, stay positive!!
Thinking of you, (( hugs )) Mimi
Thanks for the support and well wishes, just started my 2nd round of steroids, hope this round resolves the issue.
John
Let us know if it "sticks" !!!
Hi john! I’m sending up some prayers for this mess to clear up for you!
All the best-- tiffanie
John so soprry to hear of your problems. I have never heard of this type reaction to the teflon pads but Mimi seems to be more knowledgeable then anyone. This was never mentioned as a potential side affect when I had my MVD. Good luck hope this does the trick for you
I also don’t recall hearing that as s possible reaction, sorry to hear its been a rough recovery John. Will keep you in my prayers.
I was just told yesterday I may be trying to reject either the titanium net or the Teflon pads by my new ENT doctor. My MVD was 14 months ago and I have had swelling and chronic pain behind the ear since the surgery that they have not been able to figure out. The surgeon blew me off at 8 weeks telling me I did not give things time to heal. I just finished 6 weeks of IV antibiotics so there is not a living bacteria in my body. I am also having tremendous headaches which I got Botox injections for 3 weeks ago -- no luck there. Hopefully you have been "fixed".
sorry to hear you are still having issues over a year later, My issue have not been resolved yet, I am going to begin repeating a series of tests again next week, starting Monday with a 2nd Lumbar spinal tap. Are they making any recommendations to you?
Mary N. said:
I was just told yesterday I may be trying to reject either the titanium net or the Teflon pads by my new ENT doctor. My MVD was 14 months ago and I have had swelling and chronic pain behind the ear since the surgery that they have not been able to figure out. The surgeon blew me off at 8 weeks telling me I did not give things time to heal. I just finished 6 weeks of IV antibiotics so there is not a living bacteria in my body. I am also having tremendous headaches which I got Botox injections for 3 weeks ago -- no luck there. Hopefully you have been "fixed".
Not yet. I am waiting on a CT scan to be done next week by the new ENT doctor. My Mastoid bone is in question. This will be the 3rd CT scan this year. 1st one does not mention "mastoidectomy" (which I never had) and the 2nd one does and the ENT wants a 3rd detailed one. He thinks the bone got messed up during the MVD. However, the ENT has promised to work with the neurologist, infectious disease, PCP and pain management doctors to find the answer. I truly believe that we have the correct mix of physicians. I just hope I do not need a neurosurgeon -- I refuse to go back to the one that did this! I did IV antibiotics for 6 weeks so they know there is not a living bacteria in my body. They treated for meningitis "just in case" without the tests because of the pain I was already dealing with.
Please keep me posted on what they find out. Are they still leaning toward a reaction to the Teflon? I will let you know as I find stuff out but it will be at least a week or two.
Hang in there!
@ Ed, I did a lot of research prior to my MVD…probably more than most, I had a lot of time on my hands…unfortunately. It’s very rare and my NS never mentioned it either, but I asked about it, since I had read about it, and he said he had never encountered it but its a rare possibility.
John & Mary,
Thinking of you and hope answers and relief are forthcoming!!
(( hugs )) Mimi
Thanks Mimi. As you can imagine, after 14 months I am quite frustrated. Having a NS wash his hands of you after 8 weeks is terrible. We shall see what the ENT can come up with in the coming week or so. For now it is hoping my patience holds up - so far so good. LOL It has to because the family is coming for Thanksgiving this year. Life goes on and I have chosen to go on with it. It certainly beats the alternative and I know that the team of doctors is TRYING and they ARE listening now. Also having a loving spousal unit helps too.
We are going to have some beautiful weather here in Houston today, so I am going to take some pain meds and try to enjoy it the best I can. I busy myself with crafts to keep my mind occupied and I feel a new "sun-catcher" in my backyards future. LOL You can never have too much stuff hanging from the patio cover.......or at least I think so. Not sure the neighbors or my husband feel the same way but .............. such is the way it is.
Finally after 8 weeks, it appears my reaction to the pads has resolved itself, gone almost a week with a very slight fever to no fevers . Now on to meet will Headache specialist in a few weeks to begin cutting back on the meds and see how much the MVD has helped.
John
John,
I am rather floored by the idea that the Teflon pads can cause a allergic reaction. I had talked to at least 5 surgeons about the MVD prior to my surgery and none had mentioned that possibility. My surgery did not help ease my TN pain at all. I would hate to think the teflon pads left in my head could some day cause an allergic reaction.
I had headaches and fever after I was discharged from the hospital after the MVD. I had a complication from my surgery where the sealant that the surgeon applied to cover the wound had a pinhole leak in it, this was underneath the titanium mesh plate he screwed over the sealant and wound. The CSF leak caused me to have headaches and fever. The headache would get really bad when I went from sitting to standing. Turned out I had "air in the head" as seen on imaging. I had been discharged by the hospital and a day later was very sick. I spent about a week in another hospital without the doctors diagnosing the cause of my extreme sickness caused by the CSF leak in my skull. 10 days later when I was able to travel to the surgeon, he did some more imaging and figured I had the CSF leak somewhere. He saw I had "air in the head" that he thought was caused by a CSF leak. It was not confirmed for sure that I had this issue until the surgeon performed surgery again to fix the problem. CSF leaks can vary as to the level of pain and discomfort they cause. I think I read somewhere that some CSF leaks can be very debilitating while others are minor and the patient is sometimes told to wait to see if the leak stops by itself.
John,
Crossing fingers & toes that with the reduction in meds you’ll find success !!
John … Don’t forget it takes up to a year!,!
For your head to be screwed back on , it got rattled!
I too have to go back to my surgeon. My MVD was done in Aug. of 2012. After a year of tremendous headaches and pain behind my right ear my team of doctors has suggested returning to the surgeon. Six weeks of IV antibiotics ensures that there is NO infection anywhere in my body, but they cannot determine the root cause of the headaches or "mystery" pain. My problem is that the surgeon blew me off and told me that I was not giving everything time to heal and sent me back to my neurologist! Needless to say I spent the evening in silent tears and my husband is furious! My appointment is the Tuesday before Thanksgiving -- the day our daughter and her family come in from TN. Our son-in-law has just returned from deployment -- so this should be happy times.......I will suck it all up, deal with the pain and pray for the best.
John -- best of luck to you as you go forward. Hang in there and as they say -- make sure you give it time to heal. After that my dear, raise hell if it did not work! I am sure we will be raising the roof in my surgeons office in a week or so.
Hi John- you had your MVD a few days before I had mine. I haven’t been on the site much lately (taking healing time) so didn’t see that you had such big issues with fever, headache and allergic reaction to the Teflon. So sorry it’s been such a mess for you. Hoping continued healing for you and that the headache doc gets that part sorted. Go gently.
And Mary, also so sorry you’ve had such bad issues post MVD as well. Wishing you the best Thanksgiving despite all the pain and questions.
Keep Heart
Bellalarke
Thank you for the well wishes -- I need them as we are hosting my in-laws family gathering this year. We will have our kids and our 5 grandchildren also! Hopefully my issues will be resolved and I can move on down the road as such.
I wish you and your family a blessed Thanksgiving, a speedy recovery and great success after your MVD.
HUGS!
Bellalarke said:
Hi John- you had your MVD a few days before I had mine. I haven't been on the site much lately (taking healing time) so didn't see that you had such big issues with fever, headache and allergic reaction to the Teflon. So sorry it's been such a mess for you. Hoping continued healing for you and that the headache doc gets that part sorted. Go gently.
And Mary, also so sorry you've had such bad issues post MVD as well. Wishing you the best Thanksgiving despite all the pain and questions.
Keep Heart
Bellalarke