Recent diagnosis - trying to decide what to do

[mimoore]

Hi Syl,
I have a question. If they left some tumour behind (as they did with me) how did they cut off blood supply? Not to be a pesimist but how would they cut off blood supply if it is still attached to the nerve?
Michelle 

[Kim Zingale]

UPDATE - I went to Johns Hopkins before Thanksgiving and met a new doctor who is much better at explaining things. I have much more confidence in him and the process overall at Johns Hopkins, so I think I will be going there for my surgery. I have an appointment next week to meet the neurosurgeon, have a new hearing test, and meet with the first doctor again. If everything goes well (I think it will) then I will schedule a date for the surgery. I'm also getting a new MRI tomorrow to see if there is any growth from August.

Catlover - I think we are in the exact same situation. I, too, am concerned about getting all of the tumor out of the IAC with the retrosigmoid approach. I am going to ask specifically about that at my appointment next week because I would hate for it to be able to grow back. I'll let you know how the doctor responds. Are you planning to have surgery soon, or are you still taking some more time to think about things?

Syl - I am also interested to hear how they cut off the blood supply. This is one of the things that is making me nervous about retrosigmoid.

Ron & Karen - Thanks for the info. I hope your son's surgery goes fantastically!

Hannie - That's interesting about the bone density test. Are you closer to making a decision?

Take care all,
Kim

[mk]

Hi Syl,
I have a question. If they left some tumour behind (as they did with me) how did they cut off blood supply? Not to be a pesimist but how would they cut off blood supply if it is still attached to the nerve?
Michelle 

OK, I have always been confused about that. The tumor grows off the schwann cells of the vestibular branch of the eight nerve (aka the acoustic nerve). So that's where it would get its blood supply from. Once it is removed from the acoustic nerve, its blood supply would be cut off, even if it touches the facial nerve. Surgeons do tend to leave some part behind, when it is "sticky" to the facial nerve, but it shouldn't have any blood supply, right?      Or is it that somehow other blood vessels feeding it grow in the process? Any experts on this out there?

On the issue of portions of the AN remaining in the IAC, I have never heard of this happening. The most common reason for not removing the entire tumor is to preserve the facial nerve and most patients specifically request this.

Marianna

[catlover]

Hi Syl and Kim,
Thanks Syl for explaining so well about the blood supply to the AN. What I heard from the doctors, my AN has grown out of the IAC canal, but it is not pressing towards the brainsteam and I am very happy about that. What I don't know is how/if the AN has streched any of the other nerves. I really hope that they can cut off the blood supply if they must leave a piece of the AN behind to save my facial nerve. I think I'd feel better if I knew that they could remove the whole AN, but I am very afraid of facial paralysis and double vision.

Kim, it is obvious that we both have the same concerns and thoughts right now. I'd be grateful if you could get as much kHere in Sweden we don't have the same system as you have when it comes to paying for the surgery. We pay for all medical care in our taxes and therefore we meet with the doctors who are as near your area as possible. But of course it has to be a big hospital with specialized doctors. Sometimes I think that you have a hard time both deciding which hospital and doctors to turn to, but also that you have to make decisions about which approach to use. Here it's simplier in many ways, but it is also scaring that the doctors decide which approach to use. I must say that I'd rather be SSD than having double vision and/or facial paralysis. Maybe, this is a silly thing to say, because I have 100% hearing in both my ears right now and I can't possibly imagine what it's like to be SSD.

Sooner or later I'll get an appointment with the neurosurgeons and then I can discuss the risks of getting the facial nerve destroyed or paralysed. I'm also concerned about if I would accept his proposal of doing the retrosigmoid and if I should do the translab instead. I'm sort of scared to dead about the facial paralysis,

Have nice day and don't think about your AN's!

Ha det bra i veckan!


Helene

[sgerrard]

I'll chime in here with what I think I know, but am not entirely sure of, about surgery and blood supply and stuff like that. The question of blood supply enters into radiation treatment, too. I'm no expert, though, so take it with a grain of salt.

The growing tumor cells are schwann cells gone bad, and the tumor will develop a blood supply as it grows, piping in blood through newly formed blood vessels within the tumor. As it is schwann cells, I believe the tumor can attach to and eventually feed off of any schwann cell covered cranial nerve, with the 8th, 7th, and 5th being prime candidates. Where it started is just that, not a limit on what else it may glom onto.

Surgery will cut most of the blood vessels within the tumor, as the bulk of the tumor is removed. If some of the outer part of the tumor is left stuck on a nerve, it will be a race to see if it can re-establish a blood supply before it withers and dies. One of the effects of radiation is to destroy blood vessels, with much the same consequence for the tumor, so those cells not toasted by the radiation in the first place starve to death instead. According to my ENT, this disruption of blood supply can also affect the nerves themselves, which may suffer when their blood supply is so rudely interrupted.

It is all rather gory and violent, in fact. 

Steve

[Syl]

I'm not too clear on that either, but I figure when the rest of the tumor is removed so is the blood supply of the remaining cells, like Steve explained. Another thing I'm not too sure about is that tumor cells are left behind only with the retrosig procedure. Depending on how sticky the tumor is, say to the facial nerve, some of it could be left behind with any of the three approaches.

Syl

[mk]

Thanks Steve for the explanation, this makes a lot of sense.

On the issue of the interruption of blood supply to the nerves, you are correct that this often happens, with surgery or radiation. This is the reason why people report that "hearing nerve is intact, but hearing was lost anyway". It is because the hearing nerve lost its blood supply. Same can happen with radiation, even if the nerves are spared from the radiation itself, they may suffer from the interrruption in blood supply.

Marianna

[dufreyne]

Kim:

I'm not sure of the specifics of your case, but you bring up some good points about leaving a 'tumor remnant'.  If your tumor is isolated to the IAC, then the fate of the tumor remnant is dependent primarily upon the location of the remnant and the amount left behind. If the tumor extends all the way to the fundus (ie the lateral most portion of the IAC), then the surgeon has to be particularly careful as the blood supply at the lateral aspect is most robust--which can lead to re-growth.  In general, the middle fossa approach is thought best able to visualize the lateral portion of the IAC, but may still require some 'blind dissection'--they use angled mirrors, fiberoptic scopes, etc for the lateral most end.  Also, because of the angle of approach, the translabrynthine approach is able to get the lateral most portion of the IAC, but hearing is immediately sacrificed.  Traditionally, the retrosigmoid has been least able to see the lateral portion(and there are papers out there that address this issue specifically).  However, there are some surgeons (primarily neurosurgeons) who feel that they can visualize the lateral portion well despite the anatomic obstacles. 

I empathize with your decision and situation as I recently went through it myself--October 22nd.  There were some issues that I was, frankly, unprepared for despite massive reading and research.  I can, however, state emphatically that I'm glad it is over and I have been recuperating at a good pace.  If I can be of any help, please don't hesitate to email, etc.  Good luck.

Dufreyne

[leapyrtwins]

There were some issues that I was, frankly, unprepared for despite massive reading and research. 

Dr. D -

you've piqued my curiosity.  Can you elaborate on this?

Jan

[Jim Scott]

Kim:

I believe the question of how the tumor's blood supply is cut off has been adequately explained. I'm grateful, because I couldn't have explained it nearly as well.   

In my case, my neurosurgeon 'de-bulked' the tumor, (via the retrosigmid approach).  That is, he cut most of it out ('resected') and left some behind so as not to disturb the facial nerves.  That was successful and following the surgery, my symptoms disappeared but I experiened no facial paralysis or other facial nerve-related issues.  As planned, I underwent post-op radiation (FSR) 90 days later, specifically designed by my neurosurgeon and a very talented radiation oncologist, intended to destroy the remaining tumor's DNA while, again, not damaging critical facial nerves or surrounding tissue.  This was also successful and I experienced no ill effects from the (26) FSR treatments..  My last MRI (August, 2008) showed a slight shrinkage of the remaining tumor as well as definite signs of necrosis (cell death).  I had 'lost' the hearing in the AN-affected ear some years before the discovery of my AN.  Unfortunately, my hearing nerve had already been irreparably damaged by the AN (that I probably had for years) so I remain SSD in the left ear, but cope fairly well.  My SSD isn't a life-altering problem, just an impediment.

I trust that your MRI scan won't show any growth, all of your questions are adequately answered and you can schedule your surgery at a convenient date for you. 

Jim

[dufreyne]

Jan:

I was referring to the tinnitus primarily.  I knew it existed as a post-op potential complication, but had no real understanding of how intense this sensation could be and the fact that it would be present 24/7.  I am happy that this has not been an issue for you.  I hope to be in that category at some point.  I will say that it has improved since about 4 weeks post op (I'm at almost 7 weeks now).  Also, I have learned to deal with it to some degree as well.  I try to avoid loud areas as it tends to intensify with loud ambient noise.  I emailed the neuro-otologist who reports that this will likely improve with time, yet I've talked to others who have had to deal with this constantly since their surgery.  I am in the hopeful stage.

D--

[mimoore]

Hi D,
I posted Ear Plugs under hearing, you might be interested in what I am using.
Michelle 

[Roger64]

Hi Kim,

Sorry that I am replying so late I've been off the forum for a little while. But, I just had my surgery on Oct. 30 of this year and I am more than willing to let you knoow what I've went through to prepare you more. However, it looks like everyone has told you the basic already. I am truely sorry that anyone has to go through this but, I must say this forum and the people on the forum are a great support group and they have help me with my AN and SSD.

Take Care,
Roger

P.S. Shelly, Hope, Josie, soon to be here baby Seth (Jan. 21) and I would like to send you all our warmest wishes for a bright and beautiful New Year.

[Kathy M]

Hi!

I am the current keeper of the magic scarf that passes from person to person (at least those of us having surgery to remove these tresspassers).  From the looks of the AN calendar, you are next.  I'd love to send this on to you so that you can enjoy the warmth and encouragement that I found with this little piece of fabric.  Can you send your mailing address to me?

My retrosig procedure was 1/13 and I'm doing really well.  I'm glad to send your way!!!

Kathy

[Sonja]

ZInger:

After reading your post I intended to suggest you consult with doctor Eiseman at University of Maryland and Dr. Tamargo at Johns Hopkins. I consulted with doctors at Georgetown, JHU and UM and felt more confdent with the doctors at UM and JHU.

I noticed from your signature that you have surgery today at Johns Hopkins.  Dr. Tamargo is a excellent choice. My prayers are with you. I know your surgery will be a success. Please keep us posted.

Sonja