Surgery v. Radiation

[doogey]

Thank you all for giving me some additional expert doctors to add to my consult list.  I'm glad to hear that some of them may be willing to offer the "free" advice.  I just went over to the www.skullbaseinstitute.com and viewed their animated videos for the normal "translab" procedure as well as the newer endoscopic procedure.  All I can say is "ouch"!  They both look they hurt.  This comes from someone (me) who has never stepped foot in a hospital before (except when my momma brought me into this world).

I am currently in the process of getting a CD made of my original MRI images, and will selectively CD's to some of the recommended experts you guys gave to me, as well as to the local neurosurgeon here in Dallas.  Again, thank you all very much.

I continue to look forward to sharing my odyssey with all of you, and to continue to read your feedback.

Jeff

[jerseygirl]

Evan,

Here are my thoughts on the bleeding during the ehdoscopic surgery. First of all, an overwhelming majority of schwannomas are not very vascular as opposed to some other brain tumors and therefore present less risk of bleeding to begin with. There are a  number of techniques endo neurosurgeons use to control bleeding. First of all, the endoscope carries an instrument that resects the tumor and cauterizes the small blood vessels at the same time. Secondly, an endoscope can carry other medications if necessary. In the worst possible scenario, they can administer something called factor VII. It stops bleeding as if by magic but is a very controversial drug because it can be associated with some long-term effects in a small percentage of people. It is the same drug that is given to the wounded soldiers in Iraq. It is very expensive and I do not believe it was given to anyone on our forum but correct me if I am wrong. I seriously doubt any of the endo surgeons routinely use it. I am not sure if you know it, but Dr. Sen and Constantino have a website
www.cranialbasecenter.org
where there are links to their work as described in one of the news magazine about a girl that was referred from Albany with a huge tumor somewhere deep in her brain. Drs. Sen and Constantino performed endoscopic surgery, could not stop the bleeding and administered Factor VII. The end result was beautiful. Unfortunately, they don't preform endoscopic AN removals. Let me know if you cannot find the article, it is a huge website.

If you are concerned, you can always ask a surgeon what his approach is and make sure you are satisfied with the answers. Good luck in your search and keep us posted.

                       Eve

[Evan]

Eve:

Thank you for your comments.  It is obvious you have done an extensive amount of research on the endoscopic procedures.  I had asked the question because it did not seem as if was discussed a great deal, and I believe you focused on the problems and the potential solutions.  Fortunately, I am not yet in the position of having to make such a decision, but for your benefit, it clearly seems as if you have done more than your fair share of homework.  I hope you continue to provide us with your knowledge while you move towards your last and successful surgery.

Evan

[ceeceek]

Right on with the info Eve,
I believe Ixta, has had endo approach at Skull Base and she can provide some great info as well. I was told by Moffit Cancer Center here in FL that they have not opted for the endo approach due to some of the mentioned problems of visualization and bleeding. I mentioned my concerns to Dr. Feilds and was told by him as well as staff at Tampa General whom is now beginning to perform endo approach, that generally bleeding is not a huge concern. As Eve stated, different types of tumors have different vascular situations which largely affects the approach in general.
In my particular case, Dr. Fields has had a pariticular type of equipment custom designed that is similar to a sand blaster, this helps with the lack of visualization as the traditional method involves a small spoon shaped scalpel and could accidentally cut through something behind the tumor itself...with the little "sandblaster" the tumor is broken into small pieces and suctioned out, if a vein or nerve is hit by the "sandblaster" they tend to tolerate it better and should not be damaged, henceforth eliminating some of the risk of lack of visualization.
I believe that this particular piece of equipment was designed by Dr. Fields and his staff when he was working at Pittsburgh.
Ceeceek

and as I have stated several times before, any surgery carries risk, with the advent and success of CK and GK which are really noninvasive, be sure to give them high consideration for treatment unless other factors are present.

[doogey]

I'm back after reading a bunch of new posts.

I keep hearing about "negative symptoms" from both microsurgery and radiation therapy.  I can certainly understand that surgery can have negative symptoms, and prolonged recovery periods, because it is such an invasive procedure.  I have not made a decision on my course of action yet, but can anyone who has had one of the forms of radiation therapy share some thoughts with me?  My questions are:

1.  What kind of treatment did you undergo (CK, GK, etc)?
2.  What was the size of your tumor?
3.  What were your symptoms prior to the radiation treatment?
4.  What are your symptoms after the radiation treatment?
5.  Has the tumor shown any signs of dying (and if so, how long after the procedure)?
6.  Have any of your symptoms started to go away after time?

My symptoms currently include minor tinnitus, sensitivity to loud noise on the affected side, minor loss of control of facial muscles (eyelid, lips), and occasional minor vertigo (even though I don't know if the vertigo is a symptom of the tumor, or whether it's just natural to feel somewhat "lightheaded" sometimes when getting out of a chair too fast or working out too hard).  I have no hearing loss as far as I can tell at this time. 

I am beginning to get concerned that the radiation treatment will actually induce more negative symptoms than I currently have.

Thanks for the input,

Jeff (aka Doogey)

[ppearl214]

Hi Jeff,

I will answer your questions as it pertains to moi

1.  What kind of treatment did you undergo (CK, GK, etc)?  CK, 5-day/dose, total 30Gy (6Gy/day)
2.  What was the size of your tumor? at time of diagnosis, 5mmx7mm, 9 mos later (at time of CK), 1cmx7mm (as you can see, mine grew heartily)
3.  What were your symptoms prior to the radiation treatment?  intermittent tinnitus, minor hearing loss, minor balance issues (also spurned by my Chiari 1)
4.  What are your symptoms after the radiation treatment?  What symptoms?   Actually, doing great. Minor bouts of vertigo, hearing same as it was at time of treatment (now 1 yr mark), still some balance issues (again, melded with my Chiari 1)
5.  Has the tumor shown any signs of dying (and if so, how long after the procedure)?  Yes, at my 8 month MRI
6.  Have any of your symptoms started to go away after time?  most definately.  Most see me now and have no clue what I have (and am) endure

I hope this helps.
Phyl

[doogey]

Hey everyone,

Update:  I finally got the MRI Lab to give me a hardcopy of my MRI pictures, as well as one CD containing all of the MRI images.  They did this for no cost. 

But, when I asked for an additional 4 CD's they wanted $25 per CD.  I asked if I could just take the CD they gave me and make my own copies on my own computer at home, and they said no.  Being the engineer that I am, I thought that was a bogus answer just so they could make some cash.  I have looked at the CD they gave me, and it appears that the CD contains a bunch of files that I could easily copy to another CD if I wanted to.

Question:  Am I missing something here?  Has anyone produced their own CD's of their MRI images?   If so, what program (application) on your personal computer did you use to create the copy?  I would think that you could just use the standard "Windows Explorer" program and cut and paste each file from the original to a new CD.

My concern is that I create my own copies of CD's, mail them to a doctor for consultation, only to find out that consulting doctor cannot "read" the CD for some reason.

Anyway, a penny for your thoughts and experience on this one.

Jeff (aka Doogey)

[Evan]

Jeff:

25$ per CD is cheap.  My MRI people wanted $100.00 per set, so I ordered one, figuring that I could copy the CD.  I do not think there is any magic to it. And remember it is your MRI, you paid for it (the insurance company) and it is yours.  So I do not think they can keep you from copying it.  You can also get the acutal images copies as you can an x ray which may be a bit cheaper.  If your doctor cannot read it somehow, then he will tell you and you can go to plan B.

Hope this helps.

Evan

[jimmy r]

I have decided to have "conservative" surgery by Drs Brackmann and Schwartz meaning that they may leave part of the tumor if there is a risk of damaging my facial nerves.  I have made this decision
based on the fact that my tumor is at the high end of the acceptable range for radiation at 2.8 cm. The best neurosurgeon in my town happens to be a friend of my brothers and he has advised me to take this action as have other surgeons who do both radiation and surgery.  I appreciate all the advice on this web site and urger others to carfully explore both options. If I had a smaller tumor, I would most likely go for radiation.

[Evan]

I sent a reply, but I don't think it was posted.  All I was going to say is that in my opinion, you cannot go wrong with the physicians at House.  More importantly, as you can see from the varied opinions and experiences that we all have had, the most important thing to do, which is what you did, is to explore all of your options, do your own research and then come to your own decision with the help of your doctors.  That is exactly what you did, and as a result, you came to the right decision.  All that matters is you have made the decision.  It is a good lesson for all of us.  While there may be different avenues, different treatment options, the only thing that matters is the decision that we each make for ourselves.  You did that.

Good luck and keep us abreast of everything that occurs.  I am sure you will be fine.

Evan