Treatment at Last

[okiesandy]

Hi All,

After 9 months I have a treatment date. (I have produced children in that length of time).
Many of you know of my struggles with my insurance company, my AIED and my discomfort with my original surgical choice. I canceled my Nov. 8 surgery date with Dr. Brackmann at HEI. Yes, we are in the fortunate position that I could have had the surgery without depending on insurance payment or their reduced version of out of network payment. However I just said NO!

I  have been approved by my insurance company for Cyberknife treatment. I will go with Dr. Medbery in Oklahoma City. Mask fitting Dec. 28  and treatment starting Jan. 4th. I both look forward to this and dread it at the same time. I gave up on waking up and finding out the AN was by some miracle gone. It had its chance and now it will be zapped.

I want to thank everyone who answered all of my million and a half questions about every form of treatment. All of you are wonderful. This was not an easy choice. When three doctors tell you that surgery is the only way to go and the only cure, it is hard to fly in the face of such advice. After reviewing all information it looked to me like Cyberknife would be something I could live with. (No pun intended). Remember, it is never to late to change your mind.

Sandy

[Sheryl]

Sandy - My best wishes to you.  Please keep us updated.  I'll bet you feel much better already having made a decision and knowing that all is set to go.  I have followed Dr. Medbery's comments on another board and it sounds like you are in good hands.
Sheryl

[jamie]

Good luck Sandy! I'm sure everything will go just fine, Dr. Medbery seems like a great doc, you're in good hands. No reason to dread the treatment, you'll be amazed your having anything done at all. I've had teeth cleanings that were more uncomfortable. Keep us posted.   

Jamie

[okiesandy]

There has been a slight glitch in my treatment plans. The neuro surgeon willl see me the day after the CT's, MRI's maskmaking and cisternagram .  Because of her surgery obligations I will start CK on Jan 5th, 6th and my last one on 9th. that is unless they do 5 treatments instead of 3 that are planned now.

I think my fuse is a little short by now. After all, I have been tring to get this thing treated since July. Neurosurgeon thing kind of got me a little miffed. I thought I would have seen her before this. Any thoughts this? I am a Type-A+ personality and don't like last minute changes.
I also worry about the gap in treatment. I want this to work, in fact I want to be the poster child (old lady?) for CK.

[jamie]

I'm not sure why the neurosurgeon's obligations would interfere with your treatment, I never saw the neurosurgeon who helped plan mine during the procedures, and I only saw my rad onc the first day. The rest of the time it was the tech who ran the program, the machine did the work. Strange. If you feel uncomfortable with the amount of time between the 2nd and last treatment, let Dr. Medbery know of your feelings. Your the patient and you are just as much part of your treatment as they are. Good luck!

[okiesandy]

Jamie,

Thanks for the reply. I have found out it does not make a difference if I skip a couple of days. It is sometimes done with patients who become ill during treatment. However, I don't think Dr. Medbery knew I was having treatment and there was no planning. No neuro involved, no Dr. M involved. Dr. M. is a neuro-oncologist and a radiation oncologist. He always involves a neurosurgeon. The neurosurgeon is there for treatment. They see you in person and evaluate your health and examine all records and film. I think Dr. M is a pretty cautious guy. One of those situations where the staff setting up, turning in to insurance and just did not communicate with the doctor. Maybe it was my fault because I just assumed it would all be taken care of. Holidays may play a part also.

I am sure it will all work out, just not in quite the same time frame. See how calm I am? Far cry from the Phsycho Woman I was two days ago. After all I have confronted and won against the Wicked PMSing woman at the imiging center who refused to let me have an extra copy of my MRI's and then gave me a copy of my ex-husbands wife's MRI's. That will teach her to mess with a woman with a brain tumor. And I may become famous as the only person to have radiation done on their big toe for an AN. All kidding aside, I do have complete faith in Dr. Medbery and the new neuro. she sounds like a winner from her bio. (Yes, I do check these things out)

Blessings,

Sandy

[okiesandy]

The neurosurgeon I saw yesterday was the most open minded and informative doctor I have seen to date. She fully covered why I needed one and did extensive tests on me as far as facial and reflexes. Also balance and other things. I feel so comfortable knowing she will be involved. She is passionate about her work. I think the combination of Dr. Medbery and Dr. Gumerlock is a wonderful combination.

She used to do AN's with surgery and now firmly believes radiation is the better option for smaller AN's with or with out hearing. She talked to my family after my exam and told them that radiation is a very serious step and answered all of their questions. 

I am finished with all of my tests and will start treatment the 5th. I did have a little problem with the mask during the Ct scan. I had a lot of meds and should have been relaxed. However, the feeling of being penned down was over whelming to me. I put myself in Paris for the cisternogram and that was fine. Being held down by the mask was panic time. I should be interesting to see how I do that for an hour and a half with that.

Sandy

[wind6]

Sandy I am so very happy that your treatment is finally moving forward. Sounds like you did end up with a winning team afterall. I believe you will do just fine when treatment is actually being performed. You are so strong and such a fighter that I refuse to believe anything less.
Know that I am with you in thoughts and prayers.          As Always, Sherry