ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: Mimispree on November 20, 2014, 08:47:49 pm

Title: It's starting to really hit home...
Post by: Mimispree 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. 



Title: Re: It's starting to really hit home...
Post by: ayse81 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...).


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.
Title: Re: It's starting to really hit home...
Post by: Mimispree 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,
Title: Re: It's starting to really hit home...
Post by: Cheryl R 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
Title: Re: It's starting to really hit home...
Post by: Echo 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.


Title: Re: It's starting to really hit home...
Post by: v357139 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.
Title: Re: It's starting to really hit home...
Post by: Mimispree 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,
Title: Re: It's starting to really hit home...
Post by: Cheryl R 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 has info from Jackie and good to see.                       Cheryl R
Title: Re: It's starting to really hit home...
Post by: Mimispree 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!

Title: Re: It's starting to really hit home...
Post by: Cheryl R 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
Title: Re: It's starting to really hit home...
Post by: Mimispree 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.
Title: Re: It's starting to really hit home...
Post by: SDTom on December 18, 2014, 08:41:37 pm
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.
Title: Re: It's starting to really hit home...
Post by: lorigasper 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.
Title: Re: It's starting to really hit home...
Post by: Mimispree 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, 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!

Title: Re: It's starting to really hit home...
Post by: Kathleen_Mc 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
Title: Re: It's starting to really hit home...
Post by: Mimispree on February 13, 2015, 12:20:51 pm
Hi Kathleen:

Thank you for sharing with me. Since your post here, I did try antidepressants that were supposed to help me sleep as well.  I didn't give them much of a chance.  I have PTSD, but after a couple of years therapy with a VA specialist and medication, I have experienced a new life for the last five years.  But I will note that post-surgery, because of feeling a bit more vulnerable, I am aware of some old behavior creeping back.  I think the depression I'm feeling is probably more post-surgery anxiety.  Fortunately, after two years of therapy I have some coping tools. 

On the difficult side, some of my coping skills are difficult to do now:  Hiking was a great tool; so was freelance writing and my work.  Unfortunately, I have been very dizzy 24/7 since my surgery and it makes it next-to-impossible to do any of these things and that is what creates my anxiety-depression. 

I hate complaining, but this forum is the place to do it.  I don't let my husband know how bad I'm feeling because I make an effort to remain positive around him. 

Anyway, I am happy that I have an eyelid weight and as of today I can blink my eye.  That's a great thing!

Thank you!
Title: Re: It's starting to really hit home...
Post by: CHD63 on February 13, 2015, 03:19:53 pm
Hi Mimi .....

Just a comment about not hiking because of the 24/7 dizziness ..... It may seem counterintuitive, but actually walking (starting in a very safe place, like back and forth in your hallway at home) is the best vestibular therapy.  At first you might not be able to turn your head at all, but after walking back and forth numerous times, try turning your head from side to side (slowly at first), then up and down.  All of this should be done slowly at first, then increase the speed as you are able.

I about wore out the carpet in my hallway doing the above until I felt comfortable walking outdoors.  My case is a bit different than most, in that I have no vestibular function on either side.  I woke up from my first AN surgery not having a clue where up or down was.  I used a walker for a couple of weeks, graduated to a cane, and finally on my own.  You can overcome this too!

Ask your doctors when you go for your evaluation, but if I were in your situation, I would work very hard at getting back to hiking (two walking sticks are wonderful security).

Thoughts and prayers.
Title: Re: It's starting to really hit home...
Post by: Mimispree on February 13, 2015, 05:39:07 pm

Thank you, Clarice!  I do walk at least three or four blocks everyday, but I haven't been doing the head exercises you mentioned, so I'll start tomorrow.  Today I walked both dogs (one-at-a-time) and then gardened for an hour, then walked to the market.  I almost didn't make it home because my legs started shaking because of being dizzy, but I did it. 

My surgeon said walking was the best exercise, but it hasn't done a thing for the dizziness.  I am very much looking forward to consulting with everyone on March 9 & 10. 

Today I'm just happy that I was gardening (albeit while sitting) and I can blink my eye!  Major progress as far as I'm concerned.  But now, REST!

Thank you again!

Title: Re: It's starting to really hit home...
Post by: v357139 on February 24, 2015, 08:28:10 pm
I admire your spirit.  You will prevail.  Sorry if I missed it, are you working with a vestibular therapist for your balance?  That seems like a must.
Title: Re: It's starting to really hit home...
Post by: Mimispree on February 24, 2015, 09:28:34 pm
"I will prevail," I love that.

I am having four hours of balance testing on March 10, and then my medical team will create a customized, specific vestibular therapy for me.  They are going to work with the Physical Therapist who comes to my town twice a week, and then he's going to work with me.  I live in a tiny town in the middle of nowhere, so I haven't had any therapy yet.  After reading many posts, I am sure the therapy will work.

I tried the suggestions that Clarice provided me and failed horribly (but I'll keep trying).  That is hard!  What's really a bummer is that I was a professional dancer for years and you would think that I could pull it together on keeping my balance; I was a pirouetting Queen!  But I'm totally lost with this 24/7 dizziness.  I am counting on the therapy working so well I'll be able to reopen my bakery in April.  Keep your fingers crossed for me.

My eyelid weight is working out pretty well.  It's not too heavy so I have to concentrate to close my eye, but that way my eyelid doesn't droop and obstruct my vision.  He tightened my lower lid so now my drops and ointment don't run out of my eye.  I'm very, very happy and grateful.

I did start taking my anti-anxiety medication that I took for PTSD last Monday.  I'm not anywhere near as critical has I was before participating in a two-year study with a VA doc, but now that I know the medication will not change who I am or make me feel high, I'm willing to take it before my anxiety wins. 

They say to be thankful for everything that has happened to you because you will see how your experience can help others--but you can help yourself too.  Thankfully I learned how my PTSD can creep back into my day-to-day life, and about a year before my surgery I noticed some symptoms, probably as a way to deal with the Trigeminal Neuralgia pain.  Post-surgery my recovery has been difficult, mostly because of the 24/7 dizziness, so the creeping continues.  I am grateful because I've already learned that the medication works and I don't have to distrust it.  I would like to do a bit of talk therapy, but unfortunately that's not available where I live.  I learned great coping skills with the VA I'll lean on.

Thanks for letting me share.  I hope sharing my experience is helpful to others.

Be well,
Title: Re: It's starting to really hit home...
Post by: v357139 on April 02, 2015, 07:59:23 pm
Your experience will surely help others.  You have made progress.  More progress will come.  It might or might not be linear progress, but you will have more progress, I am sure of that.  I admire your perserverence.  Keep posting if it helps you.
Title: Re: It's starting to really hit home...
Post by: AJFunk on February 07, 2018, 06:46:06 pm
Hi Michelle,

Your 2+ year old post here hit home for me.  If you're still active on the forums, I'd love to hear an update on how you are doing now that a lot of time has passed.