If you had to do it over again ....

[Sue]

Hi Nancy,

I had Gamma Knife and that was the only option for radiosurgery that I had, in my area, at that time.  Now there is CK.  If I had to do it all over again and had the option of the two, I would have really done more homework and compared them very carefully.  I like some of the aspects of CK, in that there is no headframe and other things that I'll try to explain, if I may take a minute here.  I had just turned 60 years old when I had to do this junk, so you have to consider that I'm *ahem* more mature (at least in age!) than most of the rest of the group on here. So perhaps that made a difference in how I responded to the treatment.  I really didn't have too much trouble with the headframe.  My doctors/nurses were pretty good in delivering the necessary ointments, injections, pills to ensure that I was fairly well numbed up, and whacked out, so I pretty much had a good time through the actual procedure. The decadron afterward was not a pleasant experience for me.  Not horrible, but not pleasant either.  That's because of the insomnia effect that it has on you.  It took me about 3 weeks to feel relatively "normal" again.  The radiation and the meds really wiped me out and I was very tired.  My facial nerve was not happy with being so close to the radiation bombardment and let me know about it those first few weeks.  Even though I'm grateful I didn't have to go through microsurgery and the possible side effects from that, I found GK to not be a "cakewalk".  Now, one thing we know for certain from this Forum, is that everybody is different and one person's GK experience is not like the next person's.  I have the impression that CK is a little bit gentler on the system.  But, since I've already had my treatment, this opinion is only my opinion and does not come from in-depth evaluation.   However, if given a choice between surgery and radiation, I would do the GK over again in a New York Minute.   The facts are that killing a tumor growing inside one's skull can be traumatic, no matter how it's done.   There are different levels of trauma, and I think I came away as best as I could, under the circumstances.  I certainly wish things were better and I was hoping that some of the symptoms would go away forever and ever, but since I am 2 years post-treatment, what I have is what I have and I'm darn lucky it isn't worse.  

Hope this helps.  

Sue in Vancouver, WA USA

PS
I was lucky that my doctor is a younger man and was trained in surgery and radiosurgery.  Many surgeons, especially older ones, were trained only in microsurgery.  That's what they do best and they probably aren't going to send you down the street to the guy who does radiosurgery.  This is his business, after all.   It's just like an auto dealership saying, Hey, this Ford isn't right for you, but the guy down the street sells Honda's.  Go check him out."  Yeah, right.

Also, Nancy, my hearing was already down the tubes by the time I got to my treatment.  I've lost most of my useable hearing in my left ear.   GK didn't save anything for me. Drat the luck!!

[Nancy Drew]

Sue, That is funny that you would bring up the car issue.  This is rare!  My son was just home for two weeks on leave from the Air Force.  I have a friend who sells Fords, and my son went to see him to buy a car, but the Ford just wasn't working for him.  So my friend sent him down the street to look at the Toyotas, and my son found what he was looking for.  My friend was still able to get my son a pretty good deal through a friend of his.  But, you know that is what friends are for (isn't that a song?).  And, the same here.  We are all becoming friends in some way or the other, and we help fill in the holes that the "professionals" don't always do for us.  That's my thought for the day!  Nancy   

[MaryBKAriz]

Hi Nancy,  

Perhaps the CK machine has a long wait there. They use the CK for so many areas in the body. The GKs only do upper spine (on the new Perfexion GKs) and the head.

I know if you have hearing worth saving, CK gives you a better chance to do so. I think it is something like 45% chance with GK and 65% with CK? I do not remember exactly the statistic, but for me they were worth considering, until my hearing was shot, anyway. If you should decide CK, there may be other areas not too far that have an available CK.

Again, Good luck with whatever your decision is!

Mary  

[Nancy Drew]

Mary,
The more and more that I am hearing about the good results of CK, I beginning to feel more open to checking this option out.  I am not sure what the limits are on my insurance so I will have to check that out as well.  If I have some flexability with my insurance benefits, then it would be worth going out of area to give it a try.  I just have a bad feeling about the new CK center they have in Boulder, CO.  The commericals on the TV and radio make it seem like taking your care in for repair.  I want to feel better about CK before I commit.  I will have to investigate if there are other CK centers closer by.  Thanks for your input.  Nancy

[fbarbera]

I had CK and would definitely choose the radiosurgery (either GK or CK) again if given the choice.  

I think the CK doctors will tell you GK and CK are equally successful at killing the tumor, but you have a better shot hearing preservation with CK, plus you will not have to endure the headframe.  The Stanford team believes that CK is a more accurate machine as well, but I think there is a debate about that among neurosurgeons.  I think there have been some advances in how they deliver the radiation with CK (in terms of avoiding damage to the cochlea) that have improved hearing retention rates even more.

In my own research, I came across a couple of medical abstracts on Pubmed.com comparing the post-treatment quality of life of persons who had surgery v. radiation.  I just located one of the abstracts.  Here it is:

1: Neurosurgery. 2006 Jul;59(1):77-85; discussion 77-85. Links

Patient outcomes after vestibular schwannoma management: a prospective comparison of microsurgical resection and stereotactic radiosurgery.

Pollock BE, Driscoll CL, Foote RL, Link MJ, Gorman DA, Bauch CD, Mandrekar JN, Krecke KN, Johnson CH.
Department of Neurological Surgery, Mayo Clinic College of Medicine, Rochester, Minnesota 55905, USA. pollock.bruce@mayo.edu

OBJECTIVE: The best management for patients with small- to medium-sized vestibular schwannomas (VS) is controversial. METHODS:: A prospective cohort study of 82 patients with unilateral, unoperated VS less than 3 cm undergoing surgical resection (n = 36) or radiosurgery (n = 46). Patients undergoing resection were younger (48.2 yr versus 53.9 yr, P = 0.03). The groups were similar with regard to hearing loss, associated symptoms, and tumor size. The mean follow-up period was 42 months (range, 12-62 mo). RESULTS: Normal facial movement and preservation of serviceable hearing was more frequent in the radiosurgical group at 3 months (P < 0.001), 1 year (P < 0.001), and at the last follow-up examination (P < 0.01) compared with the surgical resection group. Patients undergoing surgical resection had a significant decline in the following subscales of the Health Status Questionnaire 3 months after surgery: physical functioning (P = 0.006), role-physical (P < 0.001), energy/fatigue (P = 0.02), and overall physical component (P = 0.004). Patients in the surgical resection group continued to have a significant decline in the physical functioning (P = 0.04) and bodily pain (P = 0.04) subscales at 1 year and in bodily pain (P = 0.02) at the last follow-up examination. The radiosurgical group had no decline on any component of the Health Status Questionnaire after the procedure. The radiosurgical group had lower mean Dizziness Handicap Inventory scores (16.5 versus 8.4, P = 0.02) at the last follow-up examination. There was no difference in tumor control (100 versus 96%, P = 0.50). CONCLUSION: Early outcomes were better for VS patients undergoing stereotactic radiosurgery compared with surgical resection (Level 2 evidence). Unless long-term follow-up evaluation shows frequent tumor progression at currently used radiation doses, radiosurgery should be considered the best management strategy for the majority of VS patients.

PMID: 16823303 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/16823303?ordinalpos=41&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

[Nancy Drew]

fbarbera,

Thanks for the info and websites.  I have pretty much convinced myself that I will be going with the radiosurgery insteady of surgery.  Not to be disrespectful to those who have or plan to have surgery.  I only have access to local GK info at this time, and I will have to put some time into CK centers somewhere else since there is not one in Denver area.  There is one in Boulder, but they don't seem to be pros with ANs.  Thanks much for all unput.  Nancy

[MaryBKAriz]

Insurance, is of course, a great importance. The doctors here said I would have no trouble getting for what ever approach I chose. I don't know if it is a factor of having an insurance that covered it or if they have such a track record, that insurance accepts them, or a little of both.

I live near Phoenix. They do have the AN center I went to at Barrow Neurological Institute. Then there is te one at Stanford. Dr. Chang answered all emails I sent to him directly and thoroughly. Also the Cyberknife support site's Docs are great answering.

Good luck and I don't think I would, regret CK or GK. I did too read the partical below.

Mary

[Sue]

Nancy, that is funny how I picked a car analogy, and then the exact thing happened to your son!  Well, I guess that proves that anything can happen. 

Take care,

Sue in Vancouver USA

[ppearl214]

Hey Nancy,

Like many, I was opting for microsurgery first..... and as I did my research... and had to factor in my Chiari situation (head placement during surgery is a tough one in trying to remove an AN with a Chiari -- cerebellum/brain stem malformation -- made my decision (for me) a bit easier to decide to go radio (I was leaning that way, anyway, based on my AN treatment research I was doing). 

Well, like Sue, I would do (in my case) CK again in a Boston minute... and one reason I did choose it (as previoulsy noted) is that CK can be done again, gawd forbid.  Now, after over 2 yrs post treatment and based on my past 4 MRI's and my hearing retention (I had over 80% hearing at time of treatment... and is the same as of today)...... yes, I'd do it again.

You will know in your soul of souls what will be best for you.  Both CK and GK are VERY viable, proven treatment options in the world of AN treatments.  In speaking to many and listening also to what Drs Medbery and Spunberg note on the CK Patient Support Board, it really can boil down to a few things.... 1.  Hearing retention (CK has a slightly higher % of hearing retention odds), 2.  comfort level (ie: head frame vs. mesh mask) and most of all... 3.  the proven track record of each for AN's.  GK has longer term data available (its been around for over 35 yrs and newer versions of GK (Perfection, as noted by Mary ) is available.... CK is also proving its value on multiple ailments that it treats (can be used all over body vs. GK is head only).  "Total" accuracy is also key... much written on this site (if you do a search, esp. in the "Radio" forum), as both of close in "total" accuracy..... but again, both are very viable options.

Go with your gut.... intial reaction with gut and stick with it.. and never question that decision, as you will know what is best for you.

Hang in there!
Phyl

[GRACE1]

I had GK.  I would do it over again without any hesitation.  The doctors and staff at Wake Forest were wonderful.  I knew right away that I made the right decision.  I like GK because it is a one-shot wonder.  There are a lot of comments about the headframe; it was no big deal.  That should not be a consideration when one chooses between GK and CK.   

[Betsy]

Nancy, I think you'll reach a point in your research that you'll "know" what's right for you.  A lot of other folks on this forum came to that point as well; I know I did.  My final choice was between a well known big-city AN doctor or a less experienced yet highly acclaimed radiologist.  The radiologist won out because he saw me as a whole person who just happened to be attached to an AN.  As it turned out, his perspective led to other tests, and the discovery that not all my symptoms were AN related.  Maybe the AN specialist would have discovered that too, but I just didn't "get" that when I met with him.  The important thing is to find a treatment and a doctor that you're comfortable with.

Keep posting and let us know how you're doing.

Betsy

[leapyrtwins]

The important thing is to find a treatment and a doctor that you're comfortable with.

Nancy -

I agree 100% with Betsy.  I also agree with her when she says "you'll reach a point in your research that you'll 'know' what's right for you". 

I know I did.

Jan

[Nancy Drew]

Thanks all for the posts.  Just wondering Grace1.  Did you have any hearing before GK?  If you did, did you retain, get worse of lose it?  This is my most important question about GK, and it seems the CK people are really advocating it to preserve hearing--better odds.  I was really hoping gamma knife would pretty much be the same as far as hearing retention because now I have to explore the CK, and I will have to go out of area, and that could be hard if I don't have insurance that will cooperate.  I will be getting my recommendation from the panel of doctors Friday or next week.  This waiting is about to drive me crazy.  I can't sleep, and I have headaches almost every day.  I'll let you guys know what happens.  Nancy

[MaryBKAriz]

You are in my thoughts, Nancy. Hang in there. Waiting is NOT fun! We are waiting with you.

Mary

[ppearl214]

Thanks all for the posts.  Just wondering Grace1.  Did you have any hearing before GK?  If you did, did you retain, get worse of lose it?  This is my most important question about GK, and it seems the CK people are really advocating it to preserve hearing--better odds.  I was really hoping gamma knife would pretty much be the same as far as hearing retention because now I have to explore the CK, and I will have to go out of area, and that could be hard if I don't have insurance that will cooperate.  I will be getting my recommendation from the panel of doctors Friday or next week.  This waiting is about to drive me crazy.  I can't sleep, and I have headaches almost every day.  I'll let you guys know what happens.  Nancy

Hi Nancy,

From my understanding pertaining to hearing preservation.... most of the time, in order to preserve serviceable hearing... CK is "fractionated"  (as can be others but this discussion has been CK vs. GK) as it is dosed out over a number of days (typically 3-5) vs. GK which is typically 1 dose/day.  By fractionating a treatment, it means surrounding structures/tissues have a bit of a chance in between treatment doses to help "recuperate", thus trying to help maintain a higher level of serviceable hearing.  Based on conversations with my docs, others here and the drs on the CKPatientSupport Board, it seems that in order to do all you can to preserve hearing (that was my primary concern as I had over 80% serviceable hearing going into CK), fractionating the treatment would give better odds to save hearing (again, individual results may vary......).  I also have an understanding that when the hearing level is quite low in %, then the 1 dose (whether CK, like MaryAZ had or GK as many GK patients here have had) is chosen.

You're doing great... and I know this part of the decision making process is a total pain in the petunia.... but truly.... you are doing everything right, you are asking questions and doing your homework. For me (and many), once the decision making process is done, you will feel that monkey off your back........

Hang in there!
Phyl