ANA Discussion Forum
General Category => AN Issues => Topic started by: Crazycat on October 25, 2009, 02:10:04 pm
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I find it remarkable that of all the people I've come to know who have had surgery with Drs. Barker and McKenna at Mass General in Boston (myself included), I've yet to see one person with any facial nerve problems. I think there is something to be said for that.
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Interesting - where is that?
Michelle ;D
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Michelle,
Mass General is in Boston, MA and is rated as having one of the top neurosurgery departments in the world.
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If i remember right... you did have some the first couple months then got better - right?
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Hi Joe!
Actually, my problem was feeling and sensation. I never lost control of facial movement. There is still some residual numbness on the left side of my face like lingering Novocaine after a dentist visit.
This is more trigeminal nerve-related than facial nerve.
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I have heard that Mass General is at the top of the list for this too. Living in MN and not having extra cash, I went to Iowa City. Surprisingly enough, they are #3 in the nation this year, although they have been #2 in other years. I have some facial nerve issues, but it's nearly back to normal after just 2-1/2 months. I had a sticky tumor that grew up into the facial nerve.
I found someone in MN who has helped me a lot with my facial nerve issues. He even helped someone whose facial nerve was completely severed! My was just stretched out a bit.
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Lucky you, I have 6, 7 and 8 Nerve problems...they're intact but severally traumatized still 12 weeks after surgery.
;)
Doc
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I find it remarkable that of all the people I've come to know who have had surgery with Drs. Barker and McKenna at Mass General in Boston (myself included), I've yet to see one person with any facial nerve problems. I think there is something to be said for that.
Dang should have gone there!
Really,I have the utmost respect for my surgeon from Madigan.( He trained at HOUSE.) I just had a large bloody AN which had smashed the facial/hearing/balance nerve. Face nerve was anastomosed end to end. I'm happy I didn't stroke out...... Still mad that I can't smile but I'm accepting it a bit better now, past the 3 year mark! Acupuncture is helping a tad too!
Maureen
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Yes, it's a touch and go situation with nerves. This is why nerves are referred to as being "insulted" if they are touched or altered in the slightest way. It can take years for nerves to recover from being tampered with.
It's also a different situation with each person regarding what nerves are impinged on as the tumor grows out. The twelve cranial nerves on each side of the skull base are close together like a wire harness. In my case they left some of the growth behind so as not to tamper with the facial nerve. The growth was 5cm x 5cm. In spite of everything I endured (including two shunt surgeries) I cannot believe how well I came through it all!
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But miracles do happen! I had my facial nerve severed 10 months ago and just yesterday I got some movement back in my eye. I can almost completely close it, with effort. I also have a pretty good smile going, not a big smile, but it's not a scary pirate smile like I had just a few months ago. Of course along with all this new movement is a fair amount of synkinesis but I guess that just goes with the territory. I know plenty of people who would take the synkinesis to have some movement so I am grateful for what I have. When I was told the nerve was cut the surgeons basically told me not to plan on much movement returning and to just go get a gold weight put in because they eye wouldn't ever come back. Thanks to lots of prayers, a great neuromusclar retrainer, and lots of work I think I'm going to prove them wrong!!!
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I'll chime in one more time here...I'm so jealous :-\...I still make small children cry with my patched left eye and goofy right side only smile...! My nerves were left intact but haven't given the slightest hint thus far that they're ever going to function again :( That's so disheartening as I'm sure my fellow ANer's can attest!
Take Care!
;)
Doc
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Doctor B,
I know how disheartening it can be to not have any movement. I had no movement at all after my surgery. At just over 3 months I had the tiniest of movement at the corner of my mouth. It's been progressing ever since. I'm just over 4 years now and have a decent smile. My pic is of me post-surgery. Never give up hope. Nerves can taKe ever so long to come back.
Jean
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Doc,
You got hit hard. I'm sorry to hear (no pun intended) what you're going through.
Did you have double vision? I had it before surgery and especially when I looked to the left side (side of tumor). After surgery though, the double vision was full blown; so bad that I had to wear an eye patch for months. It eventually eased-up but not entirely. I still have problems with it.
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Doctor B,
Don't give up hope yet!!! I went to my six month post-op appointment and had absolutely no movement. The doctor just looked at me and said, well we'll see, but I wouldn't get my hopes up if I were you. We should have seen SOMETHING by now. I was crushed! But a couple of months later I started noticing the tiniest bit of movement around my mouth and cheek. After I talked to people here and hearing the stories I knew that doctor was wrong. Six months or before is possible but many of us will tell you that longer is probably more normal, expecially for a severed or badly damaged nerve. Believe me when I say I know how easy it is to get down. I had plenty of my own down days. Hang in there. I will be praying for you.
Julie
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Crazycat- you had a monster of a tumor. Like you said, you are doing extremely well, with your complications you had.
And DOC- don't give up! You are still pretty fresh post op. It takes MONTHS.......I know there are downer days, I myself just gotta stay focused on tasks and such.....
Just take it one day at a time, it WILL come back. Think HAPPY thoughts!!! I WILL smile again, I WILL smile again. It will happen. ::) (I know, I'm a Polly Anna)
Just keep trying to make the best of every day. I should be the one talking! Sometimes I just get fed up with the looks I get, the sympathetic nods.......
My smile was ME. I had a huge one with dimples to boot. It's what kept me going. I would smile on bad days, just to help me get through the day.
Ah well, I haven't given up and won't give up. I bet you'll beat me to the smile stage, and I'll say "Good for you." and think "Jeez, I'm jealous!"
:-\
My right sided smile,
Maureen
YOu can see pic of me at this site, if you want- I don't post a lot of photos.......
http://anausa.org/forum/index.php?topic=9252.msg103667#msg103667
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Wow Moe!
I have to ask, you mentioned that they cut the facial nerve. Why did they do that? Did they have to do that? Why wasn't it done to me? They left some of mine behind so as not to tamper with the facial nerve. Subsequent MRI scans have shown the residual grown to have shrunk. Even though the facial nerve had become entangled with the growth, I never experienced any facial pain or paralysis either before or after surgery. Strange. I don't know how to explain this.
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HI Crazycat,
Only thing I can think is that it was such a bloody mess in there, and controlling the bleeding so that I didn't stroke out probably took precedence over "saving the facial nerve." (I lost 2 pints of blood :o )
I asked the surgeon prior to the surgery about just that, and his response was he has never had to cut the facial nerve. Never say never........
I also never got an exact answer from the doc. But then I didn't pursue this. My situation was extremely CRAZY surrounding this surgery. (different thread). I had to go back to TX after 6 weeks to be with my kids. Husband was stationed at Bremerton and I was back at home in TX when all this happened. One of those military geographical separation scenario. It was insane.
Anyway, I was just sooo happy to be alive, but really mad they had to cut the nerve.....Life goes on....At least I have no headaches, and the cognitive issues are OK so I'm happy about that.
Always looking at the glass half full ;)
Maureen
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Moe,
In the interest of sharing information with you and other newbies that may not have seen it before, I'm posting a transcription of one of my surgical reports. In it you will see this sentence, "Of note, the tumor was extremely hypervascular and the entire operation was hindered by copious hemorrhage from the tumor at every step." in the fourth paragraph down.
In other words, I as well experienced copious bleeding around the growth. While I came through without any facial nerve damage, I was afllicted with left-side impairment that seemed to simulate a mild stroke. I used to be quite an illustrator. After my surgery I could barely write or even print, never mind draw. It's slowly coming back but it's taking years to do so.
As far as the care you received. You mentioned that you had been treated at an Army/ military hospital. I was wondering how you felt about that.
Here is the report......
OPERATIVE REPORT.
PREOPERATIVE DIAGNOSIS: Large left acoustic neuroma (5cm).
POSTOPERATIVE DIAGNOSIS: Large left acoustic neuroma (5cm).
PROCEDURE: Left suboccipital microsurgical craniotomy for radical subtotal resection of acoustic neuroma, abdominal fat graft harvest, cranioplasty.
SURGEONS: Frederick Barker, M.D. and Michael McKenna, M.D.
ASSISTANT: Ziv Williams, M.D.
INDICATIONS: This man presented with a history of a large left cerebellopontine angle lesion, 5 cm in diameter. with moderate-to-severe hydrocephalus. A ventriculoperitoneal CSF shunt had been placed several weeks prior to operation to allow normalization of gait and to prepare for the tumor resection., which was undertaken today.
DESCRIPTION OF PROCEDURE: After the induction of satisfactory general endotracheal anesthesia, the patient was positioned supine with a blanket under the left shoulder and the head facing straight lateral toward the right in the Mayfield headrest. The left suboccipital area was widely clipped, prepped, and draped as was the left lower abdomen. We took care not to penetrate the CSF shunt with the Mayfield headrest.
An S-shaped extended suboccipital craniotomy incision was opened., pericranial graft harvested, suboccipital musculature stripped. A burr hole was placed and the subocciptal craniotomy was turned. The craniotomy was enlarged with Leksell and Kerrison ronguers to give a very generous exposure in the posterior fossa including the posterior edge of the lateral sinus, nearly down to the jugular bulb, and the inferior edge of the transverse sinus for several centimeters. The dura was opened in a stellate fashion. We accessed the basal cisterns easily because of the inferior extent of the craniotomy and drained CSF.
The operating microscope was used for the entire intradural operation. We defined the exposed tumor capsule, electrocoagulated it and incised it under the frozen section diagnosis., which was schwannoma. Of note, the tumor was extremely hypervascular and the entire operation was hindered by copious hemorrhage from the tumor at every step.. We did a radical intracapsular debulking of the tumor and began to separate it from the lateral cerebellum and lateral penduncle. The tumor could be separated from the lower nerves, which were markedly distorted and displaced by the tumor. The tumor was not not adherent to the hypoglossal nerve, but was in contact with the vertebral artery. Rostrally, the tumor was separated from the IVth nerve, which was displaced in a remarkable fashion over the tentorium.
The trigeminal nerve was not yet seen, although a region of the brainstem in the normal region of the trigeminal nerve was encountered.
Dr. McKenna entered the operation and removed additional tumor from the petrous face, then electrocoagulated and reflected the dura of the of the petrous face and drilled the temporal bone to reveal the internal auditory canal.
I reentered the operation and continued a prolong process of debulking and tumor removal. In all, the microsurgical portion of this case lasted for approximately 9 hours. At the conclusion of the dissection, a clean plane could no longer be maintained either laterally, or medially, where indeed we did not locate the origin of the facial nerve on the lateral surface of the pontomedullary junction because of dense adherence to the medulla. However, the remaining tumor fragment was quite thinned and the brainstem was pulsatile throughout the exposure. The origin of the VIth nerve was well seen and the VIth nerve was intact as was the IVth nerve. The trigeminal nerve was freed from compression over a significant portion of its course. It had been displaced quite far inferiorly from its normal position. The remaining tumor fragment appeared quite thin, as we could stimulate the nerve through it with 0.3 mA in more than one place. The brainstem was pulsatile, although it had not come entirely back to its normal position.- it was displaced across the midline at the beginning of the operation.
We placed a piece of Surgicel in the exposed portion of the residual tumor, harvested a fat graft in the left lower abdomen. This incision was closed with deep Vicryl sutures and an undyed Vicryl subcuticular stitch. The fat graft was placed into the internal auditory canal, which had been carefully waxed under microscopic control. The fat graft was held in place with a pledget of Surgicel. After thorough irrigation of the posterior fossa free of blood products, and instillation of 5mg of intrathecal vancomycin and 5mg intrathecal gentamycin because of the presence of the shunt, we closed the dura in a watertight fashion using the previously harvested pericranial graft. The bone plate was replaced into position and the 4.5 residual cranial defect was occluded with a titanium mesh cranioplasty. After further irrigation and hemostasis, the incision was closed in layers using Vicryl for the deep layers and a nylon running skin stitch. A sterile dressing was applied. The patient was released from the headrest and taken to the Blake 12 ICU, intubated, for further monitoring. The anesthesia service felt that because of facial and airway edema, extubation was not prudent. However, the patient demonstrated the ability to move all four extremities before resedation.
ATTESTATION: I was present or immediately available throughout the operation and performed its key neurosurgical portions personally. All material implanted during this operation is MRI compatible.
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Yes, that's definitely an interesting report. It didn't say how much blood you lost.
I WOULD like to get a report of the operation. Like I said, my life was a blur at the time, but now I am settled in WA in our home. But then the other part of me thinks, "Why do it at this point?" It is what it is........
As far as the military care/hospital, Madigan is the hospital that does these surgeries on this coast. I was originally going to have my surgery in San Antonio at Wilford Hall, but timing didn't work.
I received excellent care and do not doubt my surgeon's expertise. The thought of "shopping around" and trying to get to a well known civilian doctor just didn't even enter my mind. When I found out about the tumor, I was in Corpus Christi, TX in our home with our kids (one just entered college, one a junior in high school, and one in middle school).I was just trying to survive and just had faith that it would all work out..... It was insane....We had to work something out so that my husband could be with me through the ordeal.
There was another gal who posted for a while- she had the same surgeon and hospital. Hers was a monster tumor. They had to break it into two surgeries. She came out without any facial nerve issues but dropped from the forum. I've always wondered how she is doing. Another gal who I had email contact with prior to my surgery had the same doctor and came out fine without facial problems. Both docs in TX and WA recommended surgical removal through the translab approach.
Anyway to answer your question, I felt FINE about having my surgery at the military hospital. :) I follow there with the oculoplastic surgeon for eye issues, UW in Seattle for post 7/12 surgery issues, and will probably go back to one or the other hospitals for more surgery. My ENT did not do many of the nerve grafts, so TRI CARE did cover the surgery at UW. More fun to come!
Maureen
r
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Interesting Moe. The more we learn, the less we understand. I really don't know what to make of it.
However, it is a good idea to obtain a copy of your operative report. It's something that you should have for your records regardless. I know that having my own report in my possession has made some things much easier for me. It's there for the taking; all you have to do is request it.
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Moe,
Have you had any luck with acupuncture?
DHM
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YES I have! It is slow in coming, but I have noticed more movement and incredible tingles around the upper lip and mid cheek area where it is pretty dead. It's going to be a 4 month deal, couple of times a week, just attacking that area over and over.
It has also helped my well being, anxiety, depression, fatigue, so it's a win/win situation. :)
I have a feeling I will still need some sort of face lift work, but the movement is improving. Thanks for asking!
Maureen
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I am now 9 weeks post-op and have anxiety over everything. My double vision, wobbly head, ringing in my right ear, iright facial paralysis - all starting to cause anxiety. I've read allot on the forum about nerve regeneration and I know it can take a long time. I have sensation, but no movement. Good news that my right eye started to move from center out to the right this week. It was stuck just left of center, and with visual therapy, it now moves. This is a good sign. Maybe the other nerves will follow. Can anyone explain what it feels like to have the nerves come back. Maybe this is a dumb question - I'm sure this varies from person to person. Having a rough day and trying to stay positive:(
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swhite,
While I haven't had any problems with facial paralysis, I've had numbness on the left side of my face and around the areas on my head where incisions had been made. The numbness around those surgical areas was so complete that when I touched or rubbed my head in those places it didn't feel like my own; but this is normal for most surgeries anywhere on the body.
Then, one day months later I touched my head and it felt perfectly normal; all feeling had returned and it had done so without me noticing it. That's the way it seems to work, in a very gradual manner. My facial numbness is still there but much better than it was just after surgery. It's strange how some people experience great pain from problems with the trigeminal nerve whereas others (as myself) only have numbness.
Those AN surgeries really short-circuited my nervous system. For instance, my feet had always been intensely ticklish. After surgery I could receive full foot massages and not even flinch. My handwriting was shot but is gradually improving—albeit very slowly.
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swhite,
Out of curiosity, was your facial nerve stretched or did it have to be cut? If cut, did they do a direct reanastomosis?
Yes, the facial nerve does take quite a while to "come back" and patience is the order of the day (or months). It is soooo hard to just sit there and do nothing but that is what is recommended for the first 6 months at least.
I will sometimes feel a nerve "spasm"-it comes and goes really quick- right now around my upper left lip and around the mouth. A tingly sensation. I love the feeling- I wish I had it more.I
'm over 3 years post op and as you can see by my sig, it is a work in progress.
The anxiety, depression or whatever is completely normal, especially with all your symptoms.
Hang in there- there are those on the forum who got antidepressants ordered to get over the "hump", and it is nothing to be ashamed about.
And remember, no question is a dumb question! That's what we are all here for ;)
Maureen