Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Karina had to have surgery on the left side twice because the first time they didn't get all the tumor. The doctor here in CO decided to be very conservative and wasn't able to get all the tumor due to the fact that it was wrapped around the facial nerve and he felt that would give her time and he felt the tumor wouldn't grow back for many years. That was 95 and then in 99 they put in ABI #68 and they cut the facial nerve and did the nerve switch. They did the other side just last Sept. 2000 and I know both vestibular nerves were dissected (I believe is how they put it). Karina now has some pretty bad balance but they seem to come and go. Is this normal? Some days she is great and other days she needs the use of a cane? Another item I am concerned about is the fact that she is possibly going to have to undergo back surgery but I am not completely sure just when. She is starting to have more and more back problems and falls a lot more. I try to let her make her own decisions but then again she is developmentally disabled and looks at life totally different than many others. I try to respect her decisions as much as I might not like it. I would love to see Karina on her own some day but I know that isn't possible. Karina is easily victimized and has been in the past. Karina recently had a electrical short from a lamp in her room and it was lucky she just had some smoke and not a very big fire. I believe her sense of smell saved us, since she has become deaf her sense of smell is heightened. Karina is now suffering with her eye(the one damaged during the second AN surgery). It is infected and the whole cornea is affected. The doctor said it is pretty bad and we have to put Ocuflox in every two hours. Are these eye problems common once the eye has become so damaged? Karina is still getting back the feeling from that surgery in 99 on that side of her face and eye. Is this something we will always have to worry about and deal with? If she sees something in the eye she will take a kleenex and wipe across the eye and then the whole cornea is scratched. I keep trying to get it across to her it does damage. I'll keep trying! Tom, Karina and I will be at the HEI on the 15th of March and we'll stay at Seton Hall on the 14th. Look for us if you happen to be there too. Art(from housekeeping can tell you what room we'll be in) and you can visit us. from Colorado-no snow today! P.S. I am still getting the authorizations from Kaiser to see all these different doctors in CA. I am still working on two of them and I have to bug Kaiser constantly. Kaiser CA and Kaiser CO fight with one another to see who pays. Since I am in the middle I have to go after both of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 The vestibular nerve has two branches. When I said one branch was removed it means one part on one side. What is " ubulaerve " ? Important question to this whole debate..... > > > > > >> My reading of research tells me that removing vestibular nerve (in AN > >> surgery, to avoid regrowth) is now the recommended course of action from > > the > >> more cluey nf2 surgeons. This approach is also reasonably recent. > >> > >> Question: > >> > >> Has anybody experienced regrowth of AN's after having vestibular nerve > >> removed as well as AN? > >> > >> Question: > >> > >> How far back does this approach go, in other words, who was the first > > person > >> to have vestibular nerve removed as well? Perhaps a it was in UK, > >> because I recall Gareth being an early advocate. > >> > >> If this approach is more than a few years old, and there has been no > >> regrowth worldwide, it is a strong recommendation, and a great leap > > forward > >> in permanently dealing with AN's. > >> Rosemary > >> > >> > >> > >> > >> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 on 21/2/01 2:06 PM, Jon Kantor at kantor@... wrote:> I had one branch of my vestibular nerve removed during AN surgery 13 years> ago. From what I understand this is very common and has been so for quite> some time. I only recently became aware of them removing one branch recently> when my daughter's surgeon told me that he did so with her. I immediately> called my surgeon of 13 years ago to ask him and he said he definitely did.> I do however have very good balance and am an avid skier. Loss of vestibular> nerve on one side may be compensated for by the other side as well as your> vision and general body muscle control.> Important question to this whole debate.....> > >> My reading of research tells me that removing vestibular nerve (in AN>> surgery, to avoid regrowth) is now the recommended course of action from> the>> more cluey nf2 surgeons. This approach is also reasonably recent.>> >> Question:>> >> >> >> Question:>> >> How far back does this approach go, in other words, who was the first> person>> to have vestibular nerve removed as well? Perhaps a it was in UK,>> because I recall Gareth being an early advocate.>> >> If this approach is more than a few years old, and there has been no>> regrowth worldwide, it is a strong recommendation, and a great leap> forward>> in permanently dealing with AN's.>> Rosemary>> >> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 > I had my first AN removed in 1979. I had hearing in that ear prior to the surgery, however with the removal of the tumor, I lost the hearing. So, I'm sure that the vestibular never was cut and perhaps sections of it removed when the tumor was excised. Then in 1985, the surgery was repeated to remove regrowth. However, once again tumor has regrown, but doctors feel that it should remain and not be removed third time unless it's causing a problem elsewhere. That is one reason why, when 6 years ago, when a new AN grew in on the other side nothing was done, in part bc the tumor had grown into the cochlea, but also because of the strong possibility that there could be regrowth on that side, if the tumor were to be removed. Also, like Jon, my balance is very good. I'm still able to enjoy the outdoor activites that I like to do. Greg >> >> Question:>> >> Has anybody experienced regrowth of AN's after having vestibular nerve>> removed as well as AN?>> >> Question:>> >> How far back does this approach go, in other words, who was the first> person>> to have vestibular nerve removed as well? Perhaps a it was in UK,>> because I recall Gareth being an early advocate.>> >> If this approach is more than a few years old, and there has been no>> regrowth worldwide, it is a strong recommendation, and a great leap> forward>> in permanently dealing with AN's.>> Rosemary>> >> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Vestibular nerves probably been removed for long time as it is often very difficult to separate it from the AN. Sometimes all or part of it cannot even be seen by the surgeon as the AN engulfs the nerve . Re: vestibular nerveon 21/2/01 2:06 PM, Jon Kantor at kantor@... wrote:> I had one branch of my vestibular nerve removed during AN surgery 13 years> ago. From what I understand this is very common and has been so for quite> some time. I only recently became aware of them removing one branch recently> when my daughter's surgeon told me that he did so with her. I immediately> called my surgeon of 13 years ago to ask him and he said he definitely did.> I do however have very good balance and am an avid skier. Loss of vestibular> nerve on one side may be compensated for by the other side as well as your> vision and general body muscle control.> Important question to this whole debate.....> > >> My reading of research tells me that removing vestibular nerve (in AN>> surgery, to avoid regrowth) is now the recommended course of action from> the>> more cluey nf2 surgeons. This approach is also reasonably recent.>> >> Question:>> >> >> >> Question:>> >> How far back does this approach go, in other words, who was the first> person>> to have vestibular nerve removed as well? Perhaps a it was in UK,>> because I recall Gareth being an early advocate.>> >> If this approach is more than a few years old, and there has been no>> regrowth worldwide, it is a strong recommendation, and a great leap> forward>> in permanently dealing with AN's.>> Rosemary>> >> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
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