Dan and I made it safely to New Jersey this afternoon, after navigating around/through some roadwork.
We plan to be having a quiet day inside tomorrow, and will go down the shore Friday with some friends. Afterwards, we'll do, well, whatever I feel like, since I'll have two days before going into the hospital. :)
I am still really looking forward to not coughing! It has been too long!
Thanks everyone for the comments and positive thoughts! I am so thankful to have such a wonderful community supporting me in Vermont!
Wednesday, July 28, 2010
Saturday, July 24, 2010
Getting Closer!
Dan and I will be leaving for New Jersey in four days, on Wednesday! We hope to get some fun in down there before I check into the hospital.
I am really excited to stop coughing and throwing up. REALLY EXCITED.
Some of my church family is working on a "Prayers and Squares" quilt for me, and have invited me along this weekend. I am so excited and touched to be receiving such a meaningful gift! http://www.prayerquilt.org/
I will probably be posting a few more times before I check into the hospital, and afterwards my husband, Dan, will be using the blog to update you on the surgery and recovery, especially while I am in the hospital. He will also be answering any phone calls and text messages that I receive.
As a few people have asked, my address while down there is:
Heather Hack
c/o the Grossmann Family
74 Mtn Glen Rd
Ringwood, NJ 07456
We will be having our mail from up here forwarded, but they will only forward bills, letters, and cards (and possibly magazines).
Thank you for your continued support!
I am really excited to stop coughing and throwing up. REALLY EXCITED.
Some of my church family is working on a "Prayers and Squares" quilt for me, and have invited me along this weekend. I am so excited and touched to be receiving such a meaningful gift! http://www.prayerquilt.org/
I will probably be posting a few more times before I check into the hospital, and afterwards my husband, Dan, will be using the blog to update you on the surgery and recovery, especially while I am in the hospital. He will also be answering any phone calls and text messages that I receive.
As a few people have asked, my address while down there is:
Heather Hack
c/o the Grossmann Family
74 Mtn Glen Rd
Ringwood, NJ 07456
We will be having our mail from up here forwarded, but they will only forward bills, letters, and cards (and possibly magazines).
Thank you for your continued support!
Monday, July 19, 2010
Pre-op
I had my pre-op exam today. They took blood for multiple tests, did an EKG (twice because i coughed during the first one), and a physical. Then went over to Fanny Allen and had a chest x-ray. All of which took only an hour and a half! Not too bad.
Now we are making lists, making plans for being in NJ, and enjoying the next two weeks.
Now we are making lists, making plans for being in NJ, and enjoying the next two weeks.
Sunday, July 18, 2010
The News
The surgery is officially booked for August 3rd, with check-in at 6:30am on August 2nd and the angiogram and possible embolization at 8am.
This week was insurance company week. On Wednesday I found out that the neurosurgeon was not in my network, and the insurance company may not pay for him. After a lot of back and forth between the insurance company, the hospital, Dr. Murali, and Dr. Murali's office, I received a letter in the mail yesterday stating that the insurance company would cover my appointments with him, as well as his services for the surgery. *****A special thanks to L.S., who greatly improved my chances of this being covered!*****
Today we buy a couch! It's necessary for recovery, you see.
Tomorrow I have a pre-op appointment with a GP (not mine, who was booked past the surgery), and I need a full physical, EKG, chest x-ray, and blood work. All starting at 3:15. I may be at the hospital til Tuesday if they want to squeeze that all in in a row.
This week was insurance company week. On Wednesday I found out that the neurosurgeon was not in my network, and the insurance company may not pay for him. After a lot of back and forth between the insurance company, the hospital, Dr. Murali, and Dr. Murali's office, I received a letter in the mail yesterday stating that the insurance company would cover my appointments with him, as well as his services for the surgery. *****A special thanks to L.S., who greatly improved my chances of this being covered!*****
Today we buy a couch! It's necessary for recovery, you see.
Tomorrow I have a pre-op appointment with a GP (not mine, who was booked past the surgery), and I need a full physical, EKG, chest x-ray, and blood work. All starting at 3:15. I may be at the hospital til Tuesday if they want to squeeze that all in in a row.
Tuesday, July 13, 2010
Surgeon's meeting
Hi Everyone! I had a relatively uneventful appointment yesterday. I suppose it went well, in most respects.
The doctors were much less concerned about swallowing and other nerve functions after the surgery. They did agree with the Vermont doctors original views that I would have difficulty swallowing and a hoarse voice, but not nearly to the extent the doctors in Vermont thought. They have a swallowing institute in NYEEI and said that they may need to teach me to cough, swallow, and cough again to avoid choking, due to the vocal cord being weak, but they did not say I would need a feeding tube. (Yay!)
They also do not readjust the right vocal cord during the first surgery, as many people's vocal cords recover and surgery is unnecessary. They also said it is possible to over adjust, so they wait to see exactly how much adjustment is necessary before performing the operation, which they said is rather simple. Therefore, the surgery will take only six to eight hours.
The one catch: Even after the extra scan, Dr. Linstrom now thinks the tumor is a paraganglioma (the original diagnosis) while Dr. Murali continues to think it is a schwannoma (the nonvascular type of tumor). So they will do an angiogram and check out the blood flow for themselves by threading a catheter from my leg up through my veins into the area where the tumor is. This will not happen until right before surgery, and they will use anesthesia so that they can embolize the tumor then if necessary.
They only do one surgery a day, and only on Tuesdays (I don't know why only Tuesdays). So I am tentatively scheduled for August 3rd in Westchester, depending on if the insurance company comes through and the doctors can schedule an operating room, anesthesiologists, etc. Which, since Dr. Murali is the chief of neurosurgery at Westchester, I'm thinking he has some pull.
I will also need to be in New Jersey for two or three weeks, because Dr. Linstrom takes out the stitches himself at that point. They plan on making an incision from behind my ear all the way down to my hyoid (about the middle of my neck), along the line where the scar would show up the least. Which, according to the doctor, "Everyone has a crease where their neck starts. Yours is riiight [pointing to my neck]-Wow you're young." Thanks, Doc. He did eventually find it though, or where it will be, when I am more wrinkly.
So that's the news, and I should hear within the week if the surgery is definitely scheduled and when I need to come in for the angio and possible embolization.
Thank you all for your continued thoughts and prayers!
The doctors were much less concerned about swallowing and other nerve functions after the surgery. They did agree with the Vermont doctors original views that I would have difficulty swallowing and a hoarse voice, but not nearly to the extent the doctors in Vermont thought. They have a swallowing institute in NYEEI and said that they may need to teach me to cough, swallow, and cough again to avoid choking, due to the vocal cord being weak, but they did not say I would need a feeding tube. (Yay!)
They also do not readjust the right vocal cord during the first surgery, as many people's vocal cords recover and surgery is unnecessary. They also said it is possible to over adjust, so they wait to see exactly how much adjustment is necessary before performing the operation, which they said is rather simple. Therefore, the surgery will take only six to eight hours.
The one catch: Even after the extra scan, Dr. Linstrom now thinks the tumor is a paraganglioma (the original diagnosis) while Dr. Murali continues to think it is a schwannoma (the nonvascular type of tumor). So they will do an angiogram and check out the blood flow for themselves by threading a catheter from my leg up through my veins into the area where the tumor is. This will not happen until right before surgery, and they will use anesthesia so that they can embolize the tumor then if necessary.
They only do one surgery a day, and only on Tuesdays (I don't know why only Tuesdays). So I am tentatively scheduled for August 3rd in Westchester, depending on if the insurance company comes through and the doctors can schedule an operating room, anesthesiologists, etc. Which, since Dr. Murali is the chief of neurosurgery at Westchester, I'm thinking he has some pull.
I will also need to be in New Jersey for two or three weeks, because Dr. Linstrom takes out the stitches himself at that point. They plan on making an incision from behind my ear all the way down to my hyoid (about the middle of my neck), along the line where the scar would show up the least. Which, according to the doctor, "Everyone has a crease where their neck starts. Yours is riiight [pointing to my neck]-Wow you're young." Thanks, Doc. He did eventually find it though, or where it will be, when I am more wrinkly.
So that's the news, and I should hear within the week if the surgery is definitely scheduled and when I need to come in for the angio and possible embolization.
Thank you all for your continued thoughts and prayers!
Thursday, July 1, 2010
Octreotide Scan
So I had the Octreotide scan done Monday and Tuesday. It was LONG (3hrs altogether), but I was able to listen to my Ipod, which made it bearable. In any event, I picked up the scans already and found two key things:
1. The tumor shows up on the scans. This means (I believe, based on research) that it is a paraganglioma, which is what the doctors in Vermont thought originally. Paragangliomas are typically very reactive to the dye in octreotide scans.
and
2. The tumor is the ONLY thing that shows up in the scan. This type of scan shows any other tumors of this variety, as well as cancerous tumors. So, I am cancer free! The tumor also isn't cancerous, or its metastases would show up in the scan as well.
I have an appointment on the 12th to meet with Dr. Lindstrom and Dr. Murali, the two surgeons, to discuss the results and the details of surgery, and hopefully set a date for the surgery.
1. The tumor shows up on the scans. This means (I believe, based on research) that it is a paraganglioma, which is what the doctors in Vermont thought originally. Paragangliomas are typically very reactive to the dye in octreotide scans.
and
2. The tumor is the ONLY thing that shows up in the scan. This type of scan shows any other tumors of this variety, as well as cancerous tumors. So, I am cancer free! The tumor also isn't cancerous, or its metastases would show up in the scan as well.
I have an appointment on the 12th to meet with Dr. Lindstrom and Dr. Murali, the two surgeons, to discuss the results and the details of surgery, and hopefully set a date for the surgery.
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