Author Topic: My 1 Year Healthy Anniversary and Reflections  (Read 1882 times)

ColleenS

  • Full Member
  • ***
  • Posts: 142
  • I have learned to watch birds and smell the roses.
My 1 Year Healthy Anniversary and Reflections
« on: May 02, 2018, 12:00:31 pm »
What a year it has been. I had an almost 3 month time period from the diagnosis to my 18 hour surgery on May 2, 2017. Those first couple of months were very stressful as my faith was tested, my resilience and my courage. I learned so much here in preparing for the surgery, knowledge on my options, from reading so many others journeys, both positive and negative experiences. That helped prepare me for the things that came up and the things that could have (but didn't ) and everything in between. I went into my doctors offices prepared because of those who came before me and shared. So I am paying it forward. Please feel free to pm me if you want to.  So my journey began at 6 am. My surgery finished about 18 hours later. Wow - my poor support team. I fondly called them my "Dream Team." I will post some pics. My surgery was at Vanderbilt - wonderful unit, surgeons, nurses, the whole team was tremendous. I came out of it very nauseous and threw up for a few hours in recovery. From so much anesthesia I am sure. They delayed wheeling me down for the MRI because of this. Around 6 am. they could wait no longer and wheeled me to the MRI room - feeling so sick which made that trip a ride from hell. Anyway, I made it through that and then back to the room. Still very nauseous. I had this pain in my side that I told the nurse about and turns out I had was hemorrhaging from the wound where they extracted the fat in my belly for my skull. So back to surgery - 2 1/2 hours. That was taken care of and I settled in - sorta - lots of meds, needles etc. On day 3 I started walking down the halls a bit and things were looking up. I was thankful to be alive. Thankful to not have any facial paralysis. Thankful to not be nauseous anymore. And thankful to my Dream Team which consisted of all guys. I felt special. My husband, son & brother. I was released on day 5. We had planned to stay in Nashville for a few days since we  live over 5 hours away. So my first night in the hotel I walked a bit in the hall - ate some real food and slept! No needles, no interruptions. It was wonderful. The next morning I noticed while sitting in the bathroom a drip out of my nostril - not the AN side. Oh no. I knew what it was from reading on this forum. I did not tell my Dream Team right way. We went out to the pool and I felt the sun on my face for the first time in a long week - bliss. I sat by the pool and dangled my feet in the water. I bent my head down to pick at  the tape on my leg and the dripping was constant. I put my head erect again and told the guys. I said hey this is Sunday, I am going to wait until tomorrow to go back in. I called my doc and he said unless you have some big plans - ha! I was barely walking. He said you need to come in now. So I did. I then had the dreaded spinal lumbar drain inserted (holy cow) and had to lay flat for about 5 days except when using the bathroom. As they worked to regulate the flow I was either in pain - severe headache or nauseous. This procedure did not work for me. So on Sunday, six days since I went back in the hospital I had my third surgery to repair the CFL (went through the same incision - uggg). That surgery took about 5 hours. My doctor said he stuffed everything in there except the kitchen sink. Gotta love that humor. It worked. No more leaks. I left the hospital the next day. Left Nashville for home two days later. The first month was hard, but each day, then each week it got better. At the one month point (from the last surgery) I was in rehab working on my balance and dizziness. I lost full hearing and the balance nerve on my left side with my Translab approach. At the two month mark I was preparing to go back to work. Life was so much better. I had quite a bit of brain fog those first couple of months - due to all of the anesthesia and surgery in my brain I suppose. I was so worried it was there for good. Mainly short term memory issues. I will say every month since then it has gotten better. If I had to be honest, I would say that I still have about 10% of brain fog. It may stay, but I hope not. I barely notice my SSD unless I am in a crowd or a noisy situation. I have learned to position myself at a table with my good ear facing the most people. My balance issues are almost not noticeable - the brain is a beautiful thing. I still feel "stuff" on my scalp, my scar - bone, scar tissue, not sure what else, but bumpy. It does not hurt at all though. My hair has almost caught up with the rest of my hair. The metal mouth was completely gone at about the 6 month point. The first couple of months were awful though.  I do not have any fluid out of my AN side eye in the way of tears but the drops and salve I used to have to apply many times a day has lessened to maybe twice a day, so that is much better. Maybe someday I will have tears again? That is about it. Today, I am happy. I am healthy. I am thankful to be alive. All is good in my world. I hope this was helpful to any of you awaiting surgery or recovering. Cheers,

Well I am trying to attach pics but not having any luck. Will try on a separate post.
« Last Edit: May 02, 2018, 03:34:00 pm by ColleenS »
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

ColleenS

  • Full Member
  • ***
  • Posts: 142
  • I have learned to watch birds and smell the roses.
Re: My 1 Year Healthy Anniversary and Reflections
« Reply #1 on: May 02, 2018, 12:09:53 pm »
Still no luck - not sure if there is a trick to uploading pics?
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

Krisjm

  • New Member
  • *
  • Posts: 3
Re: My 1 Year Healthy Anniversary and Reflections
« Reply #2 on: May 02, 2018, 02:33:42 pm »
Thanks for the honest account of your journey.  Your faith and resilience shine through. Getting a glimpse of someone‚Äôs path from surgery through the first year of recovery is helpful and hopeful.  I wish you continued recovery and happiness.  Thanks for sharing.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: My 1 Year Healthy Anniversary and Reflections
« Reply #3 on: June 08, 2018, 09:51:07 am »
Congrats on the 1 year milestone.

I just celebrated my 11 year milestone!  Woo hoo!!!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Patti

  • Sr. Member
  • ****
  • Posts: 361
Re: My 1 Year Healthy Anniversary and Reflections
« Reply #4 on: June 08, 2018, 06:15:28 pm »
Thanks for sharing! It is amazing that everyone seems to react differently. You just never know!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Crazycat

  • Hero Member
  • *****
  • Posts: 791
  • Self-Portrait/ "Friends, Romans, countrymen...."
Re: My 1 Year Healthy Anniversary and Reflections
« Reply #5 on: April 23, 2019, 06:00:38 am »
Colleen,

About uploading the pictures: You have to post the pictures online at a separate location, such as Photobucket and then paste the link here.

Also, how big was your AN? If you were in surgery 18 hours it must have been huge! Mine was 5cm x 5cm and I was in for 15.5 hours. I was in the hospital for three weeks for that! One of those weeks was in a rehab hospital. I was in the month before for a separate shunt surgery for about two weeks! This was 14 years ago.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

 


anything