Author Topic: It's starting to really hit home...  (Read 12621 times)

Mimispree

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It's starting to really hit home...
« on: November 20, 2014, 08:47:49 pm »
Hi Everyone:

Thank you everyone who posts questions and answers, or just shares their feelings in this forum:  It's a place to go.

I live in a very rural town in the southern Utah desert, so it's very hard to get to a doctor.  In fact, I haven't seen a doctor since I left the hospital post-op August 5.  My surgeons have been urging me to go back for two months now, but during the six hour car ride home I developed double-vision and it still isn't completely gone three months later.  Just going six miles in the car elevates my head pressure and I have to lay down and take a pain pill. 

Hopefully, on December 2 I'll be seeing a neurosurgeon only three hours away.  It will still hurt, and I'll pay for it, but I think I need to go.  I wanted to contact this forum ahead of time to see if you can suggest any questions about procedures you think I should consider. 

Some of the issues I'm dealing with three-and-a-half months later:
1.  Daily bad head pressure.  By 4:00 p.m. I'm DONE.  Even if the only thing I do all day is sit upright.

2.  Complete right-sided facial paralysis.  I've been reading posts and I think I have to wait another few months before worrying.

3.  Leakage out of "bad" eye.  I don't tear out of my right eye when I cry, but a thin stream of water leaks out of my eye when I bend over, especially when my head pressure is great.

4.  Memory black-outs.  Is this normal?  I feel like my memory was better right after surgery, but lately I'm having these black-outs when trying to think of blocks of time earlier, yesterday or within a few days.

5.  Word substitutions or searches.  I often find myself verbalizing a sentence that absolutely doesn't make any sense.  When people react awkwardly, I realize I just said something incoherent instead of what I meant to say.  For instance:  "There were deer all over downstairs," instead of "There were deer all over downtown."  If it happened once-and-a-while I wouldn't worry, but it happens a lot.

6.  Insomnia:  I'm taking an over-the-counter sleep aid every night, and if I don't take two, I'm up until 4:30 a.m.  I get up early to try to make myself tired at night, but nothing but two sleep aids work.

7.  The EYE:  Okay, is the only answer putting a ton of Refresh PM ointment in your eye all day and night?  The eye drops sting and don't relieve the pain, so is ointment the name of the game?  I need so much my my surrounding eye always looks greasy (but I guess that fits with the rest of the look these days...).

8.  Last but not least:  DEPRESSION.  I really don't want to start taking anti-depressants, but I'm so depressed that I may need help.  Any input would be helpful.  Today, I really hate that I had the surgery.  The doctor told me I was about six months away from having the tumor becoming fatal because of it's location and size, but I often think maybe that was God's plan for me and now I went against God's will.  I feel like I made a mistake and I have become a burden to my family and friends.

Oh my gosh, that's a long list!  I'm sorry for rambling on.  I didn't include the hearing loss, because that doesn't really bother me.  I have a very noisy Pug, who snores and snorts all day and night, so now I just turn my head over on the pillow and my noisy Pug becomes a silent Pug--Silver Lining.

Thank you in advance for sharing with me and I wish everyone a meaningful Thanksgiving.  I am forever thankful for my husband who looks at me with more love in his eyes than ever, my wonderful little town of Escalante, Utah, and my new friends here on this site that allow me to write this terribly self-centered post to alleviate some stress. 

THANK YOU!

Michelle

2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

ayse81

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Re: It's starting to really hit home...
« Reply #1 on: November 20, 2014, 10:01:41 pm »
7.  The EYE:  Okay, is the only answer putting a ton of Refresh PM ointment in your eye all day and night?  The eye drops sting and don't relieve the pain, so is ointment the name of the game?  I need so much my my surrounding eye always looks greasy (but I guess that fits with the rest of the look these days...).

Mimispree,

I use Refresh Pm ointment day and night as well.  That is my favorite one.  I have tried plenty of eye drops and have had the same problem except for a couple.  Refresh Liquigel are extra strength gel drops that work for me during the day when I can't or don't want to use ointment.  I used to use Genteal gel drops and that also worked.
The refresh liquigel drops are good to have on hand because I find that sometime the drops lubricate the eye in a way that the ointment doesn't and vice versa.  It is also like a mini cleaning in case you get something in your eye as opposed to doing a saline flush.
Hope it works for you.
3.1 cm tumor
.first 15 hour surgery 3/4/2014
.surgery for mrsa/headclamp site,3weeks later
.second 15 hour surgery 4/17/2014, 95 percent removed
.7-12 nerve graft surgery, 3 weeks later
.left side facial paralysis, left side deafness

Mimispree

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Re: It's starting to really hit home...
« Reply #2 on: November 20, 2014, 10:41:29 pm »
That's great!  I never heard of either of those products.  I'll check with my pharmacy tomorrow.

Thank you for your experience.

Be well,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Cheryl R

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Re: It's starting to really hit home...
« Reply #3 on: November 21, 2014, 10:28:58 am »
Celluvisc is also a heavy Refresh product which is an individual vial and less heavy than the tube gel and preservative free.       I use the gel tube at night but rarely need daytime use and do use the liquigel one if needed.  it is maddening to try various brands to see what is best.     An eye dr sometimes can give sample sizes to try.
I have  been lucky that the one with preservatives does not bother me while it does some people.   
                                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Echo

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Re: It's starting to really hit home...
« Reply #4 on: November 21, 2014, 07:52:15 pm »
Hi Michelle,

I use Alcon Tear-Gel during the day and Refresh Lacri-Lube at night. Both products were recommended to me by my neuro-opthalmologist and are preservative free.  I have good results with both.

As for those funny words coming out of sequence, I did not go through that, but I did have moments during my first 6 months post GK, where I would stop dead mid sentence and just couldn't think of the word I wanted to say.  Thankfully that didn't last to long. During the same period I found that I often would transpose words when typing and it drove me crazy - thankfully it rarely happens now.  I have heard from others on this forum who had the same issue.  Personally I think the brain is just trying to cope with our recovery whether surgery or radiation and it just takes time.

Reach out to your Dr.s, for some help with depression. Given all you are going through, you sound like some form of help would be worthwhile and it may not necessarily mean taking anti-depressants. 

Let us know how you make out.
Cathie.



 

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

v357139

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Re: It's starting to really hit home...
« Reply #5 on: November 21, 2014, 08:45:26 pm »
If you have daily head pressure you absolutely should be seeing a doctor to get it checked out.

As for facial paralysis, it would be good to check with a facial rehab specialist to see how long to wait before starting.  Most doctors do say wait a while, but I've heard different things on how long.  The best I've heard of for facial therapy is Jackie Diehls who I think is in Wisconsin.  You may want also to ask her how long she thinks you should wait.  Best of luck and keep us posted.

Get to the doctor.  Your health is more important than the money spent to get there.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Mimispree

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Re: It's starting to really hit home...
« Reply #6 on: December 11, 2014, 03:26:10 pm »
I thank everyone for your replies. 

I went to a new neurosurgeon last week because it's three hours closer to my home and I just can't do the six hour drive to my surgeons in Salt Lake City.  The new surgeon told me my MRI looked great, but that I may never get better than I am right now.  Wow.  I've decided not to take that statement in until the end of January, which will be six months after my surgery.

I'm now reading your posts about eyelid implants and the nerve jump, because the doc recommended both. 

I'm also looking into neuroplastisity (sp?). 

If you have any comments on the eyelid implant, the nerve jump, or neuroplastisity let me know.

Thank you,
Mimi 
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Cheryl R

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Re: It's starting to really hit home...
« Reply #7 on: December 12, 2014, 10:09:17 am »
Mimi, was your nerve severed?     Then you can look into possible surgery types.     If you just had damage to an intact nerve then waiting till close to 18 mos is what is frequently recommended.       It can take longer than one wants to have the nerve heal and start to come back.      The gold weight in the eye can be done now if that is what you meant by implant.               Jackie Diels like to wait a year even for facial training unless there is a good amount of movement back.     Doing too much too soon can cause the nerves to cross and cause the wrong muscles to work.        No electrical stimulation.       Mild massage of the face is ok.        I have been thru the wait and know it is hard.   I had a facial neuroma with the nerve severed and at same time had nerve graft done with nerve from by the ear.    In my case not complete movement but look ok at rest.       My profile pic is from after.     
              Hang in there and hope it works out well for you over time.               The website www.bellspalsy.ws has info from Jackie and good to see.                       Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mimispree

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Re: It's starting to really hit home...
« Reply #8 on: December 12, 2014, 04:10:38 pm »
Thank you Cheryl, that's just the type of information I was looking for.  I've been practicing closing my eye, and my sweet husband would watch and be happy for me because I was experiencing my first facial movement.  But at the doctor's last week they asked me to close my eye and smile, and then said, "Yup, nothing.  Nothing there."  I said, "What about my eye?  I can close it a bit," and they informed me that I was simply rolling my eyeball back into my head and my eyelid wasn't moving at all.  My first thought was, "What a sweet husband I have!"

A friend told me about, Anat Baniel's book “The Brain That Heals Itself.”  Have you ever heard of it?  I'm going to read it. 

I have an appointment next Thursday for the eyelid weight implant.  I don't know if I should do it or if it's going to invite more problems.  I don't have patience for any more complications.  Maybe I should just wait until at least a year has gone by.

Thanks for all of the feedback!


2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Cheryl R

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Re: It's starting to really hit home...
« Reply #9 on: December 13, 2014, 09:37:59 am »
Mimi,  I would keep the eye wt appt.       I never had one but many who do are very glad they did.     That is  important as the eye care is a big deal to keep the eyes from damage.      Most people are able to get rid of the wt in time.                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mimispree

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Re: It's starting to really hit home...
« Reply #10 on: December 13, 2014, 05:50:07 pm »
Thanks Cheryl, I may keep that appointment for an eyelid weight.  I'm trying the TheraTears Gel Drops, and I'm finding anything less than the ointment isn't working.  I just feel so reluctant to have another surgery or even a procedure.  It seems that one things keeps leading to three things with this tumor mess.
 
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

SDTom

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Re: It's starting to really hit home...
« Reply #11 on: December 18, 2014, 08:41:37 pm »
Hello,
I really don't have anything to add to this but please don't give up hope. I had my first operation over three years ago and I feel I am still healing. I know what you mean about word substitution. That seems to have gotten better over time. At my worst I think I would have been good on The Walking Dead.
Probably one of the hardest things for me is that I look perfectly normal from a distance. If you get up close I have such balance problems that I look like I'm drunk! Also Dr Edwards in Bemidji MN is very good with eye issues. You may not be able to see him but he recommend someone close to you.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

lorigasper

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Re: It's starting to really hit home...
« Reply #12 on: December 19, 2014, 03:02:27 pm »
Hi Mimi -
Just a couple of thoughts....Have you looked into using a scleral lens for your dry eye?  I had my eye closed for 13 months before I had it opened and started using the lens.  It was life changing!  When it's not in, I use Refresh PM.  Being able to see all day with the lens is wonderful!  I do have an eyelid weight, and highly recommend it.
If you read through strands of this forum, you'll be encouraged to wait patiently (or not!) for the facial nerve to heal.  I have total paralysis and just had a 12/7 nerve graft done, but wanted to let mother nature have every opportunity to do the work.  From what I read, MANY people regain some movement even after a year.  Therapy can begin there.  Jackie Diehl (sp?) in Wisconsin was a great resource for me.  You can e-mail her.  Her schedule is busy, but she'll answer.  Send selfies along, if you can.
I sympathize with the word-finding challenge.  It is getting better though, so hang in there.  I'm a teacher and talk a lot, and sometimes I just have to correct myself when crazy things come out of my mouth.  I am finding that this problem is interfering less over time.
We wish you continued healing.
Lori
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

Mimispree

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Re: It's starting to really hit home...
« Reply #13 on: December 26, 2014, 07:12:26 pm »
Hi Everyone:

Well, my ENT cancelled my appointment for an eyelid weight implant, but I rescheduled for Jan. 22.  I am going to look into the Scleral lens as well. 

This week has been tough:  I seem to have plateaued in my recovery and the plateau is far too low; Had two of three disability exams (third tomorrow); and, my eye is killing me!

I think I have to get some PT to help my balance, because it is still really bad:  I have bruises all over my arms and legs from bumping into counters, walls and doorways.  I don't feel any progress has taken place this month.

Because I am currently unable to reopen my tiny wholesale bakery, I applied for disability.  They require three health exams:  Eye exam (last week), mental evaluation (Christmas Eve) and physical exam (tomorrow).  It takes six hours in the car to travel to these appointments and because I still have double-vision and the car enhances my dizziness my husband has to do all of the driving.  I couldn't believe how bad my eye sight was in my affected right eye, and having a mental evaluation on Christmas Eve was a real bummer.  It was in a Holiday Express Inn conference room with a doctor who was equally bummed to be there, but he was very nice afterwards.  It just sucks that disability has to put us through mental evaluation after major brain surgery.  Geez, I can't work, I can't drive, I have to hold my eye closed most of the day and I can't even smile--I might be a tad depressed about filing for disability and having a mental evaluation three hours away from home on Christmas Eve.

Nonetheless, I still have my sense of humor, believe it or not.  But now while writing this post, Healthcare.gov called me and I think they just messed-up my insurance for 2015.  I had it all taken care of:  Same plan in 2015, but because of a problem with the website not being able to enter my county's name (what?  I had no problem) caused them to call me and redo the whole thing.  I already received a confirmation email but now I can't even find the plan the woman said she signed me up for on my insurer's website.   

My sense of humor is under attack, but I shall prevail.

Anyway, I'm personally looking forward to a better 2015.

Happy New Year!

Mimi
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Kathleen_Mc

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Re: It's starting to really hit home...
« Reply #14 on: January 06, 2015, 03:30:15 am »
Michelle: About that #8 on your list.....DEPRESSION
I also fell into depression, in fact I developed PTSD from this whole experience but first the depression hit. I noticed it before my 6 week post op check and attributed it to my facial changes and drop in self esteem, when I mentioned it to my surgeon he explained when people have intercranial surgery a "chemical" depression often occurs and one that may never re-balance....hence the only help would be taking anti-depressants.....I ended up trying to cope for like two years and finally went on anti-depressants and basically have stayed on them ever since (except during pregnancies/post partum periods) and haven't looked back.....yes I also got treatment for the PTSD and that resolved but the chemical depression hasn't ever went away. Is there a reason you don't want to take anti-depressants? Just wondering 'cause often people have mis conceptions about them
I hope things are generally getting better
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

 


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