All Done! Time to go home!

I had my follow-up appointment yesterday, and it's official: I'm done with this mess! I have another follow-up at the end of November, but this weekend I can go home to Vermont. And once I'm better, I can go back to work and we can pick up our lives where we left them back in May. Yay!

My voice is still normal, although slightly froggy, especially today after all that talking yesterday. But the doctor said that's normal, although I won't get the range back. No opera singing for me, folks.

I look forward to seeing all of my family and friends back in Vermont!

Ouch.

I slept through the night, but waking up eight hours after my pain meds wore off was not fun. I am definitely in a lot more pain today than yesterday, and my voice sounds froggy, but the rest of me feels good, which is much nicer than the last surgery. Hopefully I can feel a little better so I can eat something more substantial than ice cream.

Looking forward to FINALLY going back to work in a few weeks!!!

Surgery's Done!

My surgery lasted about four hours last night, they ran late and had some trouble getting my vocal cord in the right spot. It would sound good, so they'd secure it, and then it would sound like nothing. I got a little worried, but in the end, I sounded like me!!!!!!!!!!! Unfortunately, I do still remember the whole thing, but with the nice drugs they gave me, it didn't seem so bad.

So I am not in nearly the pain they thought I would be, and as for now, my voice sounds like my voice. It may get hoarse after the steroids are done, but it will come back to better than it is even now. I am already eating all things soft, and plan on moving to more normal foods in a few days.

I just want to say that I am so grateful for all of the thoughts, prayers, etc that have been sent my way. I look forward to finding out the positives this difficult time has brought into my life!

Surgery Today!

After a wonderful anniversary in NYC yesterday (and a doctor's appointment) I am gearing up for surgery today. My doctor yesterday said while it will take a while, all of the changed I have noticed from the first surgery will disappear over time, with the exception of my ear remaining closer to my head. Which I am fine with.

We are heading out around noon today, we have to be at New York Eye and Ear Infirmary around one forty-five, and surgery is at four. I am really hoping for some medication to help me stay calm and care-free as I listen to them operate on my throat (ew!). And they better put up a barrier, because I certainly can't watch this. (ew again!)

I am looking forward to having a more normal, hopefully more me, voice, complete with the ability to talk loudly enough to teach!

Dan will update you all next, and I am (unfortunately I think) headed back into the land of oxycodone. Thanks everyone for your care and support!

Getting Ready

After weeks of back and forth, my surgeon's office still does not have the paperwork it needs from my gp's office. But that will most likely be straightened out today, as I have to go to my gp. I've had a cold for about five days, and actually am mostly over it today.
However, I woke up very SWOLLEN. I'm concerned I may be infected, or something is wrong, and I do not want to drive five hours down to NJ, another hour into the city, and be told, sorry, no surgery for you. So instead we are adding a doctor's appointment to our list of things to do today.
I am really hoping they say I will be able to go through with surgery. I will be very disappointed if I have to wait longer, especially since my surgeon is booked for months in advance. Hopefully, this is God's way of helping me be thankful for the opportunity to have surgery now, instead of being anxious about it. The more challenges in getting something, the more you appreciate it.
I will keep you all updated!

Here we go again...

Thank you everyone for your support over the last few months! I currently have these symptoms left over from the surgery:

-Horner's Syndrome
A condition in which my right eyelid droops slightly and my right pupil is constricted. The right side of my tongue and bottom lip are weakened, as is my right shoulder muscle.

-Complete numbness in my right earlobe, and topical numbness of the area surrounding my right jawline.

-Indentation around the back my right ear where bone was removed.

-A hoarse and sometimes non-existent voice.

-very slight first bite syndrome, which can best be explained as an extreme bitter reaction on the right side of my tongue to the first bite of any non-bland food.

-A scar that I am proud to wear as my proof of having major surgery and surviving such a long, drawn-out ordeal!

All of these things are a wonderful trade for no longer coughing or throwing up!!!

We are currently looking forward to October 13th, two weeks from today, when I will be returning to surgery for a type I thyroplasty. This procedure will medialize my right vocal cord and place a prosthetic into it to keep it in the proper shape. I should expect a voice close to my own, with the ability to control pitch and volume. (Yay!)

This should mean I can get back to work after a recovery of about a month, which is the one thing I have not yet been able to do.

Vermont

Home sweet home!

Dan and I arrived yesterday late afternoon to find our apartment filled with banners, food, and gifts (Thank you everyone!)

My friend Shannon also magically brought one of our dead plants back to life! Now if we could only keep it that way.

Recovery continues, and I am doing well, although my voice isn't getting any better. I am so sad to not be going back to school tomorrow! I hope everyone has a great first day!

Continued Recovery

So because I wasn't taking the steroids anymore, my head was very swollen and uncomfortable, so the doctor prescribed five more days of steroids, so I am much happier.

Dan and I plan on driving back to Vermont Monday, and we are very excited to sleep in our own bed, eat our own food, and see all of our friends and family in Vermont!

More Surgery

So, I saw the laryngologist on Tuesday, and was given the bad news: I will be needing surgery to repair my vocal cords. My weak voice and lack of propulsion when swallowing is due to nerve damage caused by the surgery, and will not get better without surgery. Bummer. While unfortunate, they had expected it, so it's not a surprise, although I was hoping it wouldn't be necessary.

Surgery is scheduled for October 13th, so we will be driving back down to New Jersey in October.

Recovery is going pretty well, but now that I'm done taking the steroids my swelling is up quite a bit, which causes more pain and discomfort than I had before, on and off. I definitely have more energy most days, but not as much as I'd like.

Dan and I will be staying in New Jersey for about another week; my dad turns sixty on Saturday and we'd like to be here to celebrate with him. :)

No More Stitches!

I went to see the neurosurgeon today, and he took out my stitches! He was very impressed with how well I have been healing (I'm very talented.), and said my neck looks beautiful. If you say so. I think it looked better before he covered it in betadine and left like a hundred tiny pin-prick holes in it, but alright. Healing is good.

Tomorrow we go into NYC for the second follow-up with the neurotologist and his laryngologist partner, who will tell me how my swallowing is and if it will get better or if I will need additional surgery.

My voice is doing pretty well, and I think it's getting better, or at least lasting longer, each day. If I need surgery, it isn't dire, which would make it more frustrating to go through since I'm not that bothered by the swallowing/voice issues. Although I guess if it didn't improve it would bother me more.

Hopefully a return trip to Vermont is in the near future (two weeks or so? maybe?)! I am looking forward to sleeping in my own bed and laying on my own (new) couch. I also am missing all that Vermont food, like Als and Ben and Jerry's!

Yesterday I went shopping! It was my first (and only so far) non doctor related outing. My aunt and cousin brought me to Kohls and I bought new sneakers, since Dan has misplaced the bag of stuff I wore to the hospital, and I only brought one pair of sneakers.

All these outings are exhausting, but I'm resting resting resting in between.

Thanks for checking in everyone!

ER day for my Hacklioma

Yesterday we called the doctor because my right pupil was constricted. The neurosurgeons insisted on my meeting them at Westchester Medical Center's emergency room, where we spent seven hours.

All in all, the pupil is part of Horner's Syndrome, a nerve weakness that often occurs on one side of the face following nerve surgeries or even just nerve damage. They did a CAT scan and found nothing wrong, and gave me some eye drops, because if the eye is too dry it can have trouble dilating.

They also prescribed me lots of ear drops, because the pressure in my head is due to a large amount of clotted blood in my ear canal. It's all hydrogen peroxide based drops, so every few hours I have to deal with bubbling and tickling, trying not to make faces that will make my stitches hurt later.

My aunt, uncle, and cousins from Vermont came down to visit! It was great to see them yesterday and today, although my poor cousin Jonathan got sick. :( Hopefully not something I will catch. My cousins have decided my tumor should be named after me, a Hacklioma. I love it! Especially since they are still undecided as to what it actually is/was.

We have decided I need....Ben and Jerry's! I've lost almost twenty pounds! I haven't been this tiny since college!

Thanks for the continued cards gifts etc!

Road to Recovery

Hi everyone!

Thank you for the continued cards, flowers, calls, and visits! I'm still kinda groggy from pain meds but it's nice to break up the day with little conversations. :)

The swelling has gone down immensely; I can tell because I can feel parts of my face I couldn't before.

I'm not sure if I've told you all (I can't remember what I've written and it would take a while to try to go back and read) but the tumor is all out, and they are nearly positive they didn't do any damage to any nerves, even the one it was on. I can talk and swallow really well, although my voice is still a little weak and its hard to eat because of the swelling. But I can feel the numbness receding each day (my head is just so swollen on that side that I can't feel anything in the general area of the surgery), and my tongue is almost back to completely normal motions.

We are still waiting to hear what type of tumor it was, as it was neither a paraganglioma or a schwannoma. But they still think it was not cancerous, based on the shape and make-up.

My ear continues to make a purring sound as the pressure reduces in my head, every so often it pops a little which is exciting. I'm still on lots of steroids for swelling and pain meds and pills to keep my stomach working and pills to stop me from being sick because of all the other pills...

Oh yeah, and I'M NOT COUGHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well, when I breathe in a little spit then I do, but other than that, NOT COUGHING! It makes me really happy.

I'll continue to update you on my recovery, but I'm guessing it'll mostly be the same, just slow and steady. I keep reminding myself that they still expected me to be in the hospital today, even best case scenario, so I am ahead of schedule.

Taking too many naps to be bored yet, so that's good!

Talk to you all soon! Thank you for the love and support!!!!!!!!!!!!!!!

Hi Everyone!

What a crazy ordeal. (I apologize for any typos now; I am having some typing difficulties due to the meds.)

After the throwing up, I wisened up and refused morphine, which made my stomach feel a lot better. They also gave me dilaudid (sp?) which was some good pain medication. I miss it...lol.

While I was in neuro ICU, some guy who shot himself in the face was on the bed across from me. In the middle of the night they called in the priest and gave him his last rights. The next day some kid coded in the hallway, causing a huge problem because people had illegally moved equipment from rooms and not followed procedure. It was very dramatic.

Thanks to everyone who called, texted, messaged, and visited! It was so nice to feel surrounded with love and support.

I am currently watching Cake Boss S 1 Via Netflix (Thanks, McAuliffes!!!) Trying to keep my mind off the pain and pressure.

Talk to you all soon!

Heather

Heather has left the building

This afternoon, roughly at 1:45pm, Heather was released form the hospital. Actually she was released around 11:00, but we could not find someone to bring her downstairs, so my grandmother eventually commandeered a wheelchair and off we went. The pressure from going up and down hills has definitely been a cause of pain as she cannot yet regulate the pressure in her ears. She is home and well drugged with pain meds and sleeping.

No More Tumor!!

Hi all! The tumor is all gone!! But let me back up.

First, on Monday Heather was admitted at 6:30am to Westchester Medical Center, and was setup for her angiogram. It went well, and they embolized it with no issues. The morphine or the anesthesia made her throw up and cough, which hurt her puncture wound in her thigh, which made them want to give her more drugs... it was a vicious cycle.

She survived the night, and so did I... on two chairs pushed together in a waiting room. Oh well.

This morning (what day is it again?) she went into surgery for the tumor-ectomy. She went in at 7:45am. At 1pm they told me that they had "reached the tumor" and I groaned thinking I was in for a long afternoon of surgery. To my surprise she was all done by 4pm and I could go in to see her by 5:30pm. She looked like she had just gotten done with a long surgery (surprise surprise, huh?) and was very groggy and squoze my finger kinda hard, but was heavily drugged.

She went to PACU (post anesthesia care unit) and then to Neuro-ICU where she was given far too much morphine, which made her throw up, which started a who new vicious cycle. Eventually Valium won the day and she went to sleep. Then I cam back to her parents house, showered, shaved, became more like a normal person, and am now blogging with you nice people.

Night Night! (or goodmorning)

New Jersey

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!

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!

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.

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.

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!

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.

NYC Neurotology Appt.

In the interest of keeping up-to-date:

I received the results of the blood tests ordered by the Otolaryngology Surgeon in VT, they were normal with a slightly low level of PTH, which is consistent with having the blood drawn at 2pm without fasting beforehand.

On Monday, June 14th I went down to New York City to NY Ear and Eye Infirmary to meet with Dr. Christopher Linstrom, the chief of Neurotology.

Dr. Linstrom tested my cranial nerves and determined that the tumor is mostly affecting the Vagus nerve, as had been suspected by the doctors in VT. After ordering a hearing test, which came back perfect I am not ashamed to say, he went over the MRI and CT Scans with Dr. Holiday (I kid you not), a top radiologist and film reader. Together the doctors concluded that they believe the tumor was misdiagnosed as a Vagal Paraganglioma, and is in fact a Vagal Schwannoma. This finding basically means that they think the tumor is not vascular and does not need embolization before surgery. Besides taking out the risks associated with embolization, this means little to me. On the practical side, however, it does push back my surgery by a month or so as they order more tests to determine with absolute certainty which type of tumor it is. One concern was that by looking at the cross sectional views of the tumor, it looks as though it has a different density in the middle as it does on the outside, which is inconsistent with either a paraganglioma or a schwannoma.

Anyway, I have an octreotide scan scheduled in VT for Monday and Tuesday, and will be following up with Dr. Linstrom and his associate Dr. Murali, chief of nuerosurgery at Westchester Medical Center in NY, and chairman of neurosurgery at NY Medical College, in order to hopefully schedule surgery.

I have definitely found the experts! *Oh, and Dr. Linstrom said he would NOT cut my jaw in half (I like him better already!).

Thanks for your thoughts and prayers!

~HH

Hi Everyone!

Dan and I just got the internet in our apartment, so as you might have guessed, I am not that technologically savvy. That said, this is my first attempt at publishing things online.

I am hoping this will be an efficient way to help keep everyone connected with me and my current medical situation, as well as the latest news from tests and doctors, and later this summer, surgery.

As most of you know (thus, why I have this blog) I was finally diagnosed with a tumor this May after having a chronic cough for 3.5 years and seeing numerous doctors. *See tab above marked "Timeline..." if you really want the details.

Anyway, I will try to stay up-to-date and I appreciate any feedback, especially just to know that there is someone reading.

~HH