Sleepless

[carmen g]

Hi everyone,

No news yet from Dr. Muckle in Denver.  I was hoping that I would be able to go see him this week.  I talked to a gal from his office yesterday, but he was in surgery.  She was going to put my info on his desk.  Hopefully today he will be able to review it and get me set up with an appt.  I am in Wyoming, so I can't just swing over to his office on a moments notice, it is a 4.5 hour drive. 

I can't sleep.  I am having a hard time shutting my mind off.  I am too stressed and need to chill out, but that is easier said than done.  I am not usually a very easy going person, but I think it is starting to take its tole.  I haven't had a good cry yet, just been holding it in.  I think it is coming and the release will be good.

I did turn one job offer down, but still have one more to talk to and couldn't get ahold of him yesterday.  My current employer is being supportive and worried.  They do have a good disability package for 3 months.  1st 2 weeks, full pay, next 6 weeks, 75% and 4 more weeks at 50%.  I am just wondering if they will stick to it as there are new owners as of March 1.  I think if I give them some kind of committment on staying on, they will do that. 

Well, happy hump day everyone!
Carmen

[jtd71465]

Carmen-

I felt the best after the first time I cried, I was on the phone with a woman who runs a local chapter of the ANA in New Jersey.  She may have said a total of 20 words in 30 minutes while I spoke and cried...mainly at the same time.  It does get better, this is the most trying stage....

This may sound funny but at about week 4 or 5 post-op, I needed / wanted to get back to work...only so much TV I could watch and only so many books I wnated to read...

If you have any questions regarding surgery(if that's the direction you decide) please don't hesitate to contact me directly.  Just remember that all people and tumors are not equal...my experience was great but as you can tell not everyone has had positive results.


Joe-

[TP]

Everyone reacts differently and not everyone may have the same level of pain. I had pain for a year in my neck and back and headaches the last few months before my surgery. Once I learned what it was, I really didn't get upset. I was happy to know that it was going to be over soon. I had to have surgery due to the size and placement of my tumor and knowing this I was forced to get my Living Will in place and do some things that I had put off. That may sound uncomfortable but it was something I didn't want to deal with until I was faced with this type of surgery.

I was out for 9 weeks (I had the AN removed plus two CSF leak repairs and had a home pic line for 10 days - which was the worse) but at the end of 8 weeks I was sick of laying in bed and watching tv. Fortunately I work out of my house so I didnt have to drive in traffic which was such a blessing!!

Hang in there. You live in a beautiful state! I hope the weather is nice for you so you can enjoy the beauty around you.

[Jill Marie]

Hi carmen,

I hope you have that good cry soon, it will really help the sleeplessness and the stress.  It won't change your situation but a good cry always seems to help me relax a bit and look at things clearer.  The waiting as you well know is always the hardest and on top of your waiting for info. on your tumor you are waiting to see what will happen in your job search.  A good and caring company will work with you and that always means there the kind of place you want to work at in the long run. I'm assuming that you are concerned about being able to work if you loose the hearing in your ear, hopefully you won't but if it does happen you will be just fine. I've been working for the same company for 12 years, started there 3 years after my surgery, they didn't know about my surgery until after I worked there a few months.  I didn't have an AN I had a Facial Nerve Neuroma so I also have a bit of facial paralysis and to top it off my eye doesn't water at all.  My boys were 10 and 12 when I had the surgery, they helped me get through it and your children will as well.  I know it was hard on them to see me go through it all but on the other hand they were on there best behavior and as helpful as could be throughout it all.  It made them feel good to be able to help Mom!  Take Care & good luck, Jill Marie

[Jim Scott]

carmen g:

As previously mentioned, we all react differently to the kind of far-reaching medical challenge that is entailed with a diagnosis of an acoustic neuroma tumor.  Some (unnecessarily) 'freak out', a few patients are relatively passive but most of us are somewhere between frightened and angry, depending on what day it is.  In your case, as sleeplessness has a deleterious effect on your overall health, I would think that a good cry would be therapeutic.  They usually are, but I can't speak from personal experience.

Your job situation is certainly a factor you have to consider but changing jobs right now may not be a good idea.  Often, it takes a few months of employment to qualify for a company health plan...and they almost never cover 'pre-existing' medical  conditions.   The disability plan you outlined (at your current employer) is fairly reasonable, if not extravagant.  New owners may not be legally liable to honor that disability plan - but that is something you would need to check with your HR department to be sure of your status.  They may make an 'exception' for you if, as you suggested, you give them a commitment to stay at your job.  Worth asking about.

I truly wish you all the best as you continue this journey.

Jim

 

[Jeff]

Hi Carmen,

Where are you located in Wyoming? I am in Douglas, WY. I am curious how you ended up dealing with Dr. Muckle. I go to House Ear Clinic for treatment.

Jeff

[carmen g]

Hi Jeff,

I am in Casper.  I went to Dr. Podrazik, he is an ENT here.  He referred me to Dr. Muckle. 

I have been in contact with Dr. Muckle's office and have an appt on April 3, with some additional testing, VNG and ABR.  I am going to get my MRI scans on disk and send them to House.

I tried to do some research on Dr. Muckle.  I did find a little bit about him and one thing that I did like was that he did a fellowship at House.  I figured that couldn't be too bad...  Dr. Podrazik said that if he had this, he would be going to Muckle.

Carmen

[Jeff]

Carmen,

Dr. Podrazik orders my MRIs for me. Also, he has help me with some swallowing issues. I have my films sent to Dr. Friedman at House, whom I highly recommend. A fellowship at House is a good thing. Let us know how your appointment goes.

Jeff

[Battyp]

Carmen the sleepless stage is pretty common.  I used xanax to get me through.  If you don't want a script try melatonin.  It's a natural sleep aid they will help you fall asleep.  Getting rest is important so your mind stays clear with all your trying to process.  Let us know how things go!