ANA Discussion Forum
Archive => Archives => Topic started by: Cheryl R on February 27, 2006, 02:21:35 pm
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I got the distressing news this past week of having to have a second surgery. My first was mid fossa 11-01-01 and did well post op with a 3 1/2 mo recovery from facial paralysis. I was found to be NF2 in May 2003 when a small AN was found on the other side with only slight growth so far. My MRI a year ago showed possible growth on the surgical side but my doctor coudln't say for sure with comparing trhe MRI's. I do my MRI's at the hospital where I work and take with me to Iowa City where I go to the Univ of Iowa. The radiologist report had said growth but it wasn't till I saw the MRI that saw how much. My doctor was quite surprised as I don't seem to be the typical older adult onset pattern of NF2. He does not believe in radiation for NF2 tumors. I also have been having facial symptoms for the last 3-4 weeks. He is not sure if this is a regrowth or a whole new tumor since am NF2 and won't know till get in there. If it is on the facial nerve then likely will sever the facial nerve and do a nerve graft at the same time and the gold weight in the eye. I hope this does not have to happen. The surgery is March 23rd. I am over the initial shock but wish this was not having to happen, Once was quite enough.
Cheryl R.
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Hi, Cheryl. I am sorry you are facing this again. Don't know if you remember me, but you helped reassure me before my huband's surgery. :-[ I know how hard it must be, having gone through it once. We're kind of in the same boat, but not looking at surgery. Looking at radiation for my husband, who had his large tumor partially resected and dr. now wants us to get radiation for the small remainder. I don't blame the doctors, as I think we had great docs & they did all they could, but sometimes I still feel like I'm living a bad dream. I'll send you a PM later. Jennifer
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Cheryl,
Sorry to hear about the tumor regrowth. I agree, once is certainly more than enough! Sending good thoughts your way.
Regards,
Rob
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Cheryl: Is the surgery in March to be done on the regrowth? I had surgery in Sept. to remove my regrowth (so they suspect, highly unlikely I grew a new tumor on the same side) and I must say the recovery was much easier than the first time around (likely due to a smaller tumor= shorter surgery and also I had already lost the hearing/balance and facial nerves the first time around so I didn't have as much to adjust to post-op). The only thing I had to get through was some vertigo that was unexpected (likely due to swelling) and the pain of the surgery itself (leg from fat graft hurt more than the head). Needless to say brain surgery the second time around wasn't as bad as the first, at least not for me. Kathleen
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Cheryl,
Seems to happen a fair bit with Middle Fossa. I have regrowth and am contemplatmg options. Maybe why my surgeon has now elected to not do any MF again.
Larry
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Larry, it was thought that the tumor was entirely removed the first time. I was told at that time that he had only had one mid fossa regrowth on a pt in many years of doing AN's. We are thinking this is caused by the NF2 as those tumors can be more aggressive. Won't be able to tell till get in if is regrowth or a whole new tumor due to the NF2. Cheryl R.
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I am hoping this time goes as well as I did very well the first time. No dizziness,little pain, was up and walked easily right away. I never realized had the spacy balance issue till walked outside.
I am just scared over the possibility of losing the facial nerve. I had facial paralyis for 3 1/2 months last time. Is the nerve graft part painful?
Cheryl R.
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Hi Cheryl,
I just read of your news regarding your impending second surgery. You will be in my thoughts and prayers. I have heard that a second surgery is sometimes easier than the first and I certainly hope that is the case for you.
vjh
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Cheryl
Sending you hugs and good wishes as you work through this...
Phyl
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Cheryl: Are you asking if the nerve graft involving removal of nerve from your leg to fix your face is painful or the one where they attach your remaining 7th nerve to your 12th? I have had both done and I understand in some they do the 7-12 before they close when they remove the tumor. When I had nerve taken from my leg and put in my face it was painful but heck "it ain't brain surgery". I think all things are relative and since the very first surgery I ever had in my life was brain surgery the others weren't all that bad. The one to join the 7th and 12th nerves wasn't a problem. In fact all the "plastic" surgeries I have had to fix my face since the loss from the AN haven't been all that bad (looking back on it now) and I always recover fairly quickly. Kathleen
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Sorry to hear about your upcoming second surgery.
My nerve graft came from my stomach. The first one they did was taken from an area around my waist line. It was sore when I tried to wear pants. My second one came from a little lower and did not bother me. I had two grafts since they had to go in a second time and repair a CSF leak.
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I wasn't exactly sure what I meant when asked how painful nerve graft is. I have since found some info. He said he would take it from the neck and I did find some info on this. I go back in a couple weeks for my pre op work up so will ask more questions then.
Cheryl R.
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Cheryl, Hang in there, you'll be in our thoughts and prayers.
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Cheryl, be strong, my thoughts and prayers are with you. Patti
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Hey Guys. I am back from round 2 and going strong. Surgery was Thurs and home Sun. I did end up with the nerve graft and hopefully willl start to show some results in 8 mos or so. Surgery was trans lab this time and had a approx 2 cm tumor on the facial nerve which has mostly grew over the past year. I was not real sleepy this time like last and no new balance issues to contend with so up and around faster. Am getting stronger every day. Alittle more pain than last time but I got to take off the dressing today which will help and have took a few pain pills. The old appetite is slowly coming back. I feel very lucky and hope the nerve graft does give some return to my face. Post op this time it seems to look better than it did last time. May have to get a gold weight once the swelling improves but eye isn't doing too bad and can close it most of the way. Time will tell how it all goes and will keep my fingers crossed for the small tumor on the good side which makes me NF2.
I appreciate everyones pre surgery good wishes! Cheryl R.
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Hi Cheryl - Glad to see you are back home, you are such an inspiration.
Stay stong, take care and keep us posted and if you need a laugh, check in at "the good morning" thread and join our cruise". Guaranteed to make you feel better. ;D
Hugs to you!
Matti
P.S. I am a Cheryl too
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Sounds very promising Cheryl, most importantly - keep up the good spirits.
Larry
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Happy to hear things went well. Here's hoping you have a very speedy recovery!
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Cheryl,
Sending you hugs and good vibes for a very speedy recovery! :)
Phyllis
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I have been doing so well but had a small speed bump in my progress. I noticed swelling Tues pm in the neck incision line where the nerve was taken from so calledl U of Iowa Weds am and 2 hrs later decided they wanted to see me so off on the150 mi trip. I had a collection of fluid in it which was not CSF related and some drawn out. it is still swollen but less so and now have to wear a dressing again till next week and will go back there to get the stitches out instead of here locally. Hopefully this willl be it for problems. Cheryl R.
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Cheryl,
continuing to send those hugs and prayers and terrific healing wishes! :) Hang in there hun! We're here for you!
xo
Phyl
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Good Luck Cheryl!
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Cheryl how are you doing?
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Have had a bigger speed bump. Having a second surgery wasn't enough,we had to go for round 3. After my surgery I had the fluid filled seroma develop in my neck incision area of my nerve graft, I have had to make 2 trips to Iowa City to get it drained some,with the 2nd time being last Weds. At a stop at rhe grocery store as we got home, I began having a runny nose. It was a warm day so wasn't alarmed as with my very first surgery 4 yrs ago I had it big time. When I would do the head over test none ever dripped out of the nose. We got home and tried the test and this time it did drip,drip,drip. Rested a while and tried again and more drips. Called IC and they said was ok to wait to come back on Thurs as had no fever or other symptoms. Went back Thurs and was admitted and put on bed rest for 24 hrs. Fri still had the drip so Fri eve had a 3 hr surgery to drill some of the bone and more fat packing and a absorbable pad in place to further hold things. Also the eustachian tube is blocked. I came home Mon and now am feeling ok but back to the tired off and on, Very frustrating. I got to take the dressing off today and go back the25th for stitches out. The stitches this time are larger to hold well. The surgery was done as opposed to the drain since I was 2 weeks out from the last surgery and they think the drain might not do it. I am just glad to be home again and hopefully now can recover.
An added note to Karla who was asking about driving. I have drove in 2 weeks past my surgeries. It will depend on how much dizziness you have when you turn your neck and how stiff it may be. I am in a rural area also. Cheryl R.
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Cheryl, how are you holding up? Sounds like a bad nightmare on this end! My prayers are with you for a speedy recovery!
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I am doing ok. Since I was just back to feeling good ,it is maddening to start all over. I am up and around quite well but do tire easily. I am a nurse so should know better about it all but it is hard to be on the other end! I do get achy at times but the pain meds help. I am eating better and some things taste weird,others don't. Chocolate never did taste weird this time, drat! Having the dressing off is a big help so easier to sleep.
I am hanging in there! Cheryl R.
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Cheryl,
After reading what you have recently been through, you just show an amazing amount of strength and courage... and I so, so commend you on it. Know that I'm sending hugs and wishes for ongoing speedy recovery. And trust me, chocolate WILL taste great again! I just know it.
Please hang in there and keep us updated. Sending you best and oodles of wishes!
Phyl
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Hang in there Cheryl. You're like RoboCop or something, they keep trying, but they can't knock you down! Keep it up!