Today its been exactly two months since my wife had retromastoid craniotomy surgery with the micro vascular decompression (MVD) procedure to treat her geniculate neuralgia. The surgery was successful in treating the deep ear pain associated with the geniculate neuralgia, but she has had difficulties with recovery from the actual surgery. During the first four weeks after surgery, the surgical wound healed well and overall she seemed to be recovering well. However, since then the area between the surgical incision and her left ear has become swollen and it quite painful. The swollen area is hard rather than soft. CT scans with and without contrast have shown no sign of infection, the incision has healed well with no redness, swelling, or heat at the site of the incision. The current swelling is well below the incision. Her physician has felt that this type of reaction post-surgery is not that unusual and feels with time it will go away. However, the degree of swelling has not changed in four weeks and she is still in substantial pain ranging from level 5 to 8. She takes oxy as needed to relieve the pain. She also has pain above the incision line where she swears she can feel the titanium screws. Has anyone else suffered these kinds of effects this long (8 weeks) after the surgery and if so what was the cause (especially the swelling), and what was done about it, if anything. Are you now better? Your comments would be appreciated. We have another appointment with her physician in two days.
Hello,
I read that your wife's surgery was performed by Dr. Horowitz. Since he is no longer at UPMC, you may want to follow up with his former associate, Dr. Paul Gardner,
at UPMC. He does answer email and is a wonderful, caring surgeon. Is it possible that a screw has come loose and is causing the swelling or she is allergic to the titanium?
Thanks for your response Mimi. Dr. Horowitz has actually been responsive to my e-mails even after he left UPMC. He did suggest we call Lois and make an appointment to see another surgeon. The problem is that we live in CA. We're hoping that we can find a solution without another trip to PA.
MimiK said:
Hello,
I read that your wife's surgery was performed by Dr. Horowitz. Since he is no longer at UPMC, you may want to follow up with his former associate, Dr. Paul Gardner,
at UPMC. He does answer email and is a wonderful, caring surgeon. Is it possible that a screw has come loose and is causing the swelling or she is allergic to the titanium?
I don't know the answer to your question so I'm kinda just throwing this out there: could it be a CSF leak? I remember someone commenting here that they had some kind of swelling that was mushy near the incision site and it ended up being CSF leaking through the surgical site and it was accumulating under the skin. Again, I did not experience this myself and I am trying to go by what I remember reading. Hopefully this person will read this and give you more insight. I'm sorry your wife is suffering. I hope she finds an answer and feels better soon. :)
Thanks for your comment. We considered the possibility of a CSF leak, but apparently it is not a painful condition. Also, my wife's swelling is hard, not mushy. Thanks though.
ihold said:
I don't know the answer to your question so I'm kinda just throwing this out there: could it be a CSF leak? I remember someone commenting here that they had some kind of swelling that was mushy near the incision site and it ended up being CSF leaking through the surgical site and it was accumulating under the skin. Again, I did not experience this myself and I am trying to go by what I remember reading. Hopefully this person will read this and give you more insight. I'm sorry your wife is suffering. I hope she finds an answer and feels better soon. :)
Yup, I did- and my surgery was also performed by Dr. Horowitz. I was allergic to the titanium plate AND a screw had worked its way lose causing the pain. I had my MVD september of 2011, and the plate and screw removal a year later. He put nothing in place of it once he took it out. She needs an MRI not a CT to show the screw :) . I swore up and down for an entire year that what I had behind my ear was a screw and surely, it was. The back of my head swelled so large at times, my incision would start to open up.
A CSF is a VERY painful condition!
I have not experienced this and only had my MVD at end of Oct last year so hope all remains settled. However, I just wanted to say how sorry I am to read of your wife’s pain and swelling. I hope this is soon resolved and with a positive outcome for her.
Sending you both my best wishes Mandy
Thanks Mandy and Audarah for your comments. We saw a local neurosurgeon yesterday. He is colleague of Peter Jannetta, and very familiar with the MVD surgery, so we are confident we are getting the right answers. According to our new neurosurgeon, it is not a problem with the titanium mesh or screws. Turns out its a neuroma caused by one of the nerves that was cut when the incision was made. Apparently, the nerves tries to reattach itself but instead just runs into the scar tissue caused by the incision. The continuous irritation caused the neuroma. It will require a out patient minor surgery to fix. By the way Audarah, the purpse of the CT scans was too look for signs of infection. There were none.
Again, thanks for your comments.
Thanks Mandy. Is the ear pain completely gone?
Mandy said:
I have not experienced this and only had my MVD at end of Oct last year so hope all remains settled. However, I just wanted to say how sorry I am to read of your wife's pain and swelling. I hope this is soon resolved and with a positive outcome for her.
Sending you both my best wishes Mandy
Unfortunately I’m still getting the full TN pain, the Trigeminal nerve itself is damaged from adhesions that were wrapped around the nerve so I think this is the reason why I’m still getting the pain and I’m not sure if this can repair itself given time. So the answer is yes I do still suffer with ear pain if I get a bad attack!
I’m pleased to read that finally you have answers for the swelling etc, I’ve never heard of anyone suffering from neuroma before so it was interesting to read what it was, although not nice for your wife having to suffer from it!
Good luck with the outpatients appointment
Mandy
Ihold I remember the exact same post, you may be on to something.
Santa Rose Steve my heart goes out to you and your wife...big hugs for you both. I hope this comes to an end very quickly.
Linda
Santa Rose Steve,
If you don’t mind my asking, with Geniculate Neuralgia, is the nerve they decompress the 5th cranial/trigeminal nerve? The same one that causes Trigeminal Neuralgia? Or was it a different cranial nerve? I ask because I wasn’t diagnosed with GN, just TN and ATN, but one of my biggest issues was deep, stabbing ear pain with noise sensitivity (I don’t know how to explain it except noise actually hurt me) and dizziness. The back of my throat would hurt too. When I had my MVD in Nov the NS fixed 3 nerves: 5th, 7th and 8th. The ear pain is gone and noise isn’t an issue anymore. Yay! Just wondering if any of those are the ones that cause GN and that they decompress. Thanks in advance. I’m glad an answer has been found for your wife’s post-op issues. I hope it’s over soon and she can recover and feel good.
-i
For geniculate neuralfia, the neuorsurgeon that we had generally decompresses several cranial nerves including the 5th carnial nerve if there is evidence of a blood vessel compressing the nerves and even if there there has been no trigeminal neuralgia symptoms. He also cuts the nervus intermedias which is the nerve that actually causes the ear pain. You can see a video of the surgey here http://www.youtube.com/watch?v=s7fUqg2aEkc . I think he discusses which nerves he is decompressing. My underdstanding would be that if you have facial pain and you also have deep ear pain, then you likely have both TN and GN. It sounds like they compressed the same cranial nerves for you as they did for my wife. Do you know if the cut the nervus intermedias? By ATN, I think you mean atypical trigeminal neuralgia. We had a hot shot neuralogist at UCSF that for a year and half told my wife had ATN. Turns out the neuralogist only called it ATN because he didn't know what GN was. I first learned of GN on this web site and from there learned the rest. My understanding is that you will not get ear pain any kind of TN, only from GN. By the way, the 8th cranial nerve is for hearing, so decompression of the 8th is maybe what cleared up your ear pain, though I've been told it the nervus intermedias that causes ear pain....sorry about the ramble.
ihold said:
Santa Rose Steve,
If you don't mind my asking, with Geniculate Neuralgia, is the nerve they decompress the 5th cranial/trigeminal nerve? The same one that causes Trigeminal Neuralgia? Or was it a different cranial nerve? I ask because I wasn't diagnosed with GN, just TN and ATN, but one of my biggest issues was deep, stabbing ear pain with noise sensitivity (I don't know how to explain it except noise actually hurt me) and dizziness. The back of my throat would hurt too. When I had my MVD in Nov the NS fixed 3 nerves: 5th, 7th and 8th. The ear pain is gone and noise isn't an issue anymore. Yay! Just wondering if any of those are the ones that cause GN and that they decompress. Thanks in advance. I'm glad an answer has been found for your wife's post-op issues. I hope it's over soon and she can recover and feel good.
-i
Hi Ihold,
I thought I responded to you yesterday, but maybe not. With GN they did decompress the 5th craniel nerve, not because it was the cause of the pain becuase it was this neurosurgeons standard procedure to just decompress the 5th, 7th, and 8th cranial nerves, as the did you, as long as they were in there. However, my understanding it is compression of the nervus intermedias that actually causes the ear pain, not one of the cranial nervers. For this they simply cut the nerve. I would guess they did that for you but you night not know that.
Steve
Thanks for your replies Steve. I was told I had Atypical Trigeminal Neuralgia because the face and ear pain was constant. “Regular” (or TN1) TN also because I would get shocks on top of the constant pain. I was also under the impression that TN or ATN did not include ear pain but my Drs didnt’t say anything about GN. But it’s taken 10 years to finally get a diagnosis so I don’t trust what they say 100% anyway. When I told the neurosurgeon about the ear pain he said he’d check an area that was not the 5th, but he didn’t really elaborate more on that. After surgery he told me that he identified a compression of the 7th and 8th cranial nerves and worked on them. I’m looking at the operative notes and I don’t see anything mentioning the nervus intermedias. What I see is “there was significant vascular irregularities in the region of the left vestibulochochlear complex. … I identified what appeared to be a AICA loop that was splitting the vestibulochochlear complex.” He pulled the loop and placed shredded Teflon felt to keep the vessel away.
Sorry this was so long. I was just very curious. Like I said, the pain and sensitivity and dizziness is gone, and that’s what matters. I was just wondering if my initial diagnosis was correct or if I had GN.
Thanks again for taking time to answer my questions.
-i
Ihold - I would guess that you had both TN and GN since TN is specific to the 5th cranial nerve. It may be that your ear pain was cause by compression of the 8th cranial nerve which is for hearing. In everything I've read in the literature, it is not possible for TN to cause ear pain. It may be that at the level we are discussing the neurosurgeons don't really care, they just go in a fix whatever looks to be wrong. So, fortunately in your case, they did fix the ear pain.
ihold said:
Thanks for your replies Steve. I was told I had Atypical Trigeminal Neuralgia because the face and ear pain was constant. "Regular" (or TN1) TN also because I would get shocks on top of the constant pain. I was also under the impression that TN or ATN did not include ear pain but my Drs didnt't say anything about GN. But it's taken 10 years to finally get a diagnosis so I don't trust what they say 100% anyway. When I told the neurosurgeon about the ear pain he said he'd check an area that was not the 5th, but he didn't really elaborate more on that. After surgery he told me that he identified a compression of the 7th and 8th cranial nerves and worked on them. I'm looking at the operative notes and I don't see anything mentioning the nervus intermedias. What I see is "there was significant vascular irregularities in the region of the left vestibulochochlear complex. ... I identified what appeared to be a AICA loop that was splitting the vestibulochochlear complex." He pulled the loop and placed shredded Teflon felt to keep the vessel away.
Sorry this was so long. I was just very curious. Like I said, the pain and sensitivity and dizziness is gone, and that's what matters. I was just wondering if my initial diagnosis was correct or if I had GN.
Thanks again for taking time to answer my questions.
-i