Extended care following Gamma Knife

[Vincent87]

Mom had a gamma knife treatment in May...began showing symptoms of swelling almost three months to the day later.  (Unstable gait, slurred speech, blurred vision, deafness and she never was prior to treatment.)  Went on Decadron...had a psychotic episode from the steroid and hospitalized for a change of mental status.  Was tapered off the Decadron.  18 days later released to a rehab hospital for less than 20 days of intensive (3.0 hours M-F) OT and PT.  Is now in a nursing home.  Debilitating dizziness and nausea.  Is trying her second anti-vert drug this weekend.  Medicare will only pay if she's showing progress in PT; she has good days and bad.  If not for the vertigo she wouldn't be there.  (Mom is 69 and prior to the swelling she was working six days a week and living independently.)  Has anyone out there convinced Medicare that gamma knife patients should be exempt from their rules...We've been told this is temporary-but no time line.  The family will have to start private pay as early as this coming Thursday.  Help!

[ShanaBee]

I am sorry to hear about your mother.  I was diagnosed with a 2.7 cm AN two months ago , I am 27 years old. I saw 8 top doctors, it was not until meeting all of these doctors that the last two doctors I met with Dr. Chang and Dr. Jackler actually measured my AN and found that it was actually a 3.1-3.2 cm.  Dr. Chang informed me that the cut-off for radiation was 3.2 cm and he has radiated larger tumors on occassion.  Dr. Jackler recommended I avoid radiation due tot he size of the tumor.  After meeting Jackler I thought this is it I made my decision and then 10 minutes later I met with Chang.  I am worried that with significant brainstem compression I will experience more problems with radiation.  Did your mother have brainstem compression before radiation? I was told by Dr. Chang that he has only seen 1 failure in the last 600 patients, and the success rate of CK is 99.2%.  But, I beleive they use some date to support CK by analyzing data from GK treatment.

[Mark]

Shanabee,

I think the longer term studies associated with GK are used by the newer machine makers ( CK, Trilogy, etc) for general statistics related to biological control of AN's. However, the 600 figure Dr. Chang referenced would be specific AN's treated by CK at Stanford. I was something like 100 in 2001 , they were averaging 100 per year on CK the last few years so I'm sure that's right given it's 6 years later.

As Dr. Chang said, 3.2 cm is right on the cusp of what can be treated safely, so it is a real tough call. I'm not surprised that jackler would recommend surgery in this situation given the size as he is more prone to go with surgery on much smaller ones since that is what he does. I'm unclear what Chang's recommendation was from your post. He does both options and I have a lot of confidence that he makes recommendations based on what he would do if it was a member of his family. I also know that he prefers to give the patient all the information and let them decide what they are comfortable with as opposed to pushing one option over the other.

Either way, you certainly do have a tough decision given the size issue and I wish you the best of luck in making it. Both of these docs are "world class" in my view, so you're in good hands either way you go.

Mark

[Mark]

Shanabee,

One other thought, did either Chang or Jackler discuss the option of "debulking" the AN to a smaller size and using CK for the remainder? The studies are pretty clear that facial nerve and hearing preservation results decline with Surgery the larger the size of the AN. In any AN surgery 90% of the skill and work is in the last 10% of the ressection as the surgeon has to work around the nerves. If someone with a larger AN has good hearing prior to treatment, I'm under the impression that this dual treatment approach is becoming popular in an effort to improve hearing and facial nerve function outcomes as opposed to trying to remove the whole tumor in surgery.

I believe Jim Scott who posts frequently on this board went that route and had an excellent outcome. perhaps he will add his thoughts or you can PM him for his experience

Mark

[ShanaBee]

Thank you for your response.  Dr. Chang recommended radiation with excellent outcomes.  But, Dr. Jackler said that he would prefer to remove as much as he can without causing damage, just as you mentioned, and radiate the remainder if needed.  I am concerned though at 27 years old with such a large tumor I may have NF2, but it is diificult to know the answer to this.  Chang did inform me that radiation and/or surgery is always more difficult with NF2 and regrowth is more common.  I want to save my hearing and would do retro but Jackler stated that the hearing will most likely be destroyed with surgery.  My tumor has compressed a large amount of the brainstem, is pushing on the cerebellum, and my 4th ventricle is distorted badly.  6 out of 8 doctors I personally met with said to do surgery and they were all using my radiation report at 2.7 cm except Chang and Jackler.  I think I may circle back with those that recommended radiation and see if they would still say to radiate.  I met with Dr. Jackson (Mission Viejo, CA), Dr. Gionotta (USC), Dr. Friedman and Schwartz (HEI), Dr. Pollock and Link (Mayo Clinic), and Dr. Pitts at UCSF.  I also mailed my MRI scan to John Hopkins and they had agreed with the 3.1 cm size and recommended radiation.

[lori67]

Vincent, I'm sorry to hear about your Mom.  It must be difficult for her and the whole family.

I used to work as a PT at a rehab and at a nursing home, so I know how hard it is to deal with Medicare.  Our facilities had a team approach to these type situations where we would involve everyone - the patient, the family, the doctors, the therapists, the nurses - everyone in coming up with a good solution.  We had a social worker that would work on behalf of the patient.  I'm sure there must be one where your Mom is too.  Have you contacted them to explain the situation?  I'm sure the nurses and therapists would be able to document that your Mom is making progress and should be able to convince Medicare of that.  it's a tough situation - I don't know what they expect families to do - who can afford that kind of care - and the other option of sending her home right now is not safe.  I'd also get the doctors involved.  It's crazy to think you can just send her out to fend for herself, have a fall because of the vertigo and wind up in the hospital again with a whole new set of problems.

Good luck to you and your Mom.  Unfortunately, sometimes you just have to keep plugging away at the silly games insurance people can play before you get results. (and I'm allowed to say that, because I used to be one of those insurance people).   Hang in there.
Lori