Leaky head

[Debbi]

Trish-

Pretty unfortunate that both of us seem to have gotten "dud" opthamologists.  I think I'll ask my neurotologist when I see him tomorow (for the spitting sutures and incision check) if he can recommend someone who has worked with other AN patients.  I was hoping to find someone out here where I live in NJ, but if I have to drive into NYC to find someone competent, I'm in.  Like you, Trish, I think there is more I could be doing!

Meanwhile, Tammy, I hope that all of us leaky headed folks dry up SOON! 

Debbi - still spitting sutures, but at least soon-to-be- picc-less!

[Tamara]

Ya know, sometimes you really do have to shop around for someone competent.  Unfortunate but true.  The opthamologist I saw was OK, and doesn't really "do" lid issues, but he was going to hand off my chart and request to the one who does - and you can bet I'll be on the phone first thing tomorrow tracking on that.  Barring getting the eye weights, I'm going to take one or more (however many necessary) of the little leftover weights from my sons' Cub Scout Pinewood Derby days, and some medical tape, and there ya go.  My husband was concerned when I mentioned this as he thought I might be serious (heh heh, I AM)

I'm still hanging in here, still non-leaky, though my head feels really tight and can be uncomfortable that way.  On the plus side, no headaches (I was worried about that, as I've had maybe 2 headaches in my life), and no tinnitus.

Tomorrow will hopefully be a great day all around - Debbi will be picc-less, and my son (the one with 2 broken arms) gets one of his casts removed, and the other one shortened to a below-the-elbow one.  Then he can bathe himself, which I think everyone will be happy about!  AND, I hope to get a good report from my incision check.  I do think it will be awhile before stitches come out though....Happy enough to not be leaking CSF (hey, don't I NEED that stuff??)

Hugs to all,
Tam

[leapyrtwins]

Trish -

sounds like you need a new eye doctor - someone a little more familiar with the issues you are having who will be more helpful.  But, it sounds like you already realize that    Sometimes you have to be your own advocate, so it's a great idea to ask your surgeon for a referral; surely he's had other AN patients with eye issues and can point you in the right direction.

Tamara -

while it's unfortunate you are having eye problems, it's great to hear that you are keeping a good attitude.  I have a few of those Pinewood Derby weights you talk about; I'd be glad to send them your way if you need them 

Debbi -

you've got to be SO thrilled to be hours away from being picc-less 

Wishing all you guys the best in the days ahead,

Jan

[4cm in Pacific Northwest]

Trish,


Re: quoting you
    “I too am frustrated (Debbi) that the opthamologist i visited last week was SO unhelpful.â€?

You need a “Neuro-Ophthalmologist�

I have been in Canadian waiting rooms anticipating to see a doctor before- and even in Ontario  :-\…  HUGS

Nystagmus
Here in the USA I too had double vision and this is why I was prescribed the Diamox -as I had swelling causing this. The nystagmus was temporary and was caused by post AN surgery swelling affecting the cranial nerves- thus the nasty Diamox  prescription.

Here are more details on “nystagmus�
http://en.wikipedia.org/wiki/Pathologic_nystagmus

Here is a video of what it looks like as the eye involuntarily vibrates or jiggles from side to side
http://video.google.com/videoplay?docid=7594210740186980863


RE quoting you
“For the double vision she said... oh you have to wear an eye patch for that (as i sit across from her with an eye patch on). And she said you just have to wait and hope it clears up or get surgery after 6 months…�

Here in the USA (I am a Canadian residing in Oregon) I went to my ophthalmologist, and his partner, as soon as I returned to Oregon from my surgery in California with the eye issues.  They did not prescribe the eye weight but promptly referred me to a “Neuro-Ophthalmologistâ€? who specialized in Oculofacial Plastic Surgery (I did not have surgery). It was the Neuro-Ophthalmologist who fitted and ordered an eye weight for me. He had a hunch that once the swelling went down, and with time, this issue could be waited out without surgery - thus the eye weight.

This is my #1 “eye guy� for my post AN treatment complications
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302

A Canadian Neuro-Ophthalmology I suggest you contact
His Neuro-Ophthalmology department there has a woman on the faculty who also is a CANADIAN   
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13290
I understand she  specialized in nystagmus.
I suggest you call her directly and see if she can recommend you a “Neuro-Ophthalmologist� there in Ontario.

I actually found my neurotologist (my #1 surgeon and team leader) through calling reputable academic Canadian neurotologists- for highly recommended surgeon down here. My experience is that in the neuroscience medical field of professionals their world is small- and they often all know of each other as they meet at conferences, symposiums or simply went to university together.  Try to not be upset with your current ophthalmologist as she just may not be in-the-know … I think this might be just out of her league. However she should have identified her limitations and referred you to someone more specialized in this. Put aside anger and frustration and keep moving forward to get the best care for YOU.

The eye weight
Here is the temporary eye weight product link
http://www.fci-ophthalmics.com/pdfs/blinkeze.pdf
Print this up and take it into your specialist

Here is the on-line ordering page that also is for Canada
http://www.medcompare.com/OphthalmologyWeb/moreinfo.asp?ltid=2&type=product&id=34993&cbid=5

Eye bubble bandage
The eye patches from the store do have elastic and I too could not wear these as it pinched the incision from the surgery. I was given these eye bubble bandages.
http://www.medcompare.com/details/31030/AfterCare-Eye-Bandages.html
These stick on. If you wash these in cold water you can reuse these. (hot water messes up the glue) The glue looses the adhesiveness after a while and I just taped mine on with tanspore tape once these lost their stickiness.
Here is a random Canadian link; I pulled up on Google, on that product,
http://solutions9.3m.com/wps/portal/3M/en_CA/Nexcare/Home/Products/FirstAidSupplies/Tapes/FlexibleClearTape/

Eye patch option idea
While I was still in the nystagmus stage (which did eventually clear up) my husband covered the outside of the eye bubble bandage with back electrical tape to block the light. This made a huge difference- and I could walk and balance better too. However this is a temporary solution.

The black patch was not so bad- as I joined the Captain Deb pirate club  , here on the forum, for a short time ....as I walked like a "drunken sailor in the wind."
http://anausa.org/forum/index.php?topic=5183.0
&
http://anausa.org/forum/index.php?topic=5182.0



The eye weight will help with dry eye and will allow you to blink but it will NOT help the nystagmus (and double vision). The nystagmus does take time and a reduction of swelling- before it resolves.

Healing Happens
Know that yesterday I went on a huge all-day rigorous hike here with the family
http://www.oregonstateparks.org/park_211.php
My vision is now great! I did have to wear sun glasses… but so did many other hikers.    I scaled the steep hills with no balance issues ...  less than a year after I was going through what you are going through. Healing does happen… Neurological things take longer to heal ...lets say than something like mmmm  … a knee surgery, etc. Hang in there. 

You are you best advocate
You must be the #1 person hounding these doctors for good follow up care. Write a polite and gracious letter to your ophthalmologist (now matter how mad   you are at them right now) and print up the products sheets from the links I have given you- above and enclose. If you are having double vision I am suspecting that you are experiencing “nystagmusâ€?… and you really should see a “Neuro-Ophthalmologistâ€? ASAP. You need a referral as that is the way the Canadian Healthcare red-tape-system works  . If the ophthalmologist does not write this for you - then ask your neurotologist to write one.

I really think you will get results with this approach… PM me if you still have issues. I am sure we can point you to the ANAC group and they can also help advocate for you "IF" you continue to have issues with getting referrals to qualified specialist for your post op care.
http://www.anac.ca/aboutanac.html
They have some excellent people on their board.
http://www.anac.ca/boardofdirectors.html
Register as a member so you can get their literature and booklets.
http://www.anac.ca/membership.html

Our ANA has an eye booklet- but I think it needs some updating with the counsel of “Neuro-Ophthalmologists�
https://secure.baxinternet.com/~anausa/for_sale.html

In the meantime be sure to keep your eye moist with all the blinding goop and drops as you do not want your cornea to dry out. We do have a drinken sailors in the wind club     here on the forum for those attired with a pirate patch  ... arby dar!


Hang in there- we are here for you.

As smiley PEARLY whites says "Huggles!"

Daisy Head Maizy

[Debbi]

DHM-  You are a Goddess!!!  Your post has a treasure-trove of information and I am going to spend time tonight reading through all the great links you posted.  Teh pictures of the eye weights and bubble bandages are particularly interesting - thanks so much!

Debbi (off to get spitting sutures and picc line removed)

[4cm in Pacific Northwest]

Oh you are welcome- it is just a google royality queen thing  ... look what our google KING is up to


OK  AKA Steve...

Now this thread is cool and releveant to be added here too ...as it is a great eye patch resource
http://anausa.org/forum/index.php?topic=6745.0

Daisy head Maizy

[Tamara]

DHM -
  I second Debbi's commendation of your efforts.  Thanks so much.  I've got the Blinkeze eye weights ordered through the opthamologist and expect to get them by Thursday.  My lid is closing a little better on its own, so feels a bit better.
  Deb - hope you are enjoying being picc-less!

  My news isn't so hot - my head is leaking again, and the sealant doesn't seem to be working.  I go in tomorrrow afternoon for some additional stitches/staples, and an industrial-strength coating of sealant.  If that doesn't work, I have to go back to the hospital for 5-6 days and have a lumbar drain.  And if THAT doesn't work, I get to have my head reopened and repacked.  I can't tell you how awful those last two options sound at this point...I've pretty much decided on avoiding hospitals for the rest of my life.  So, please pray that this procedure tomorrow works.  Sigh.  So far staying off the ledge, but I can see the appeal at this point.....

Tam

[lori67]

Tam -

NO LEDGES!

I'll keep my fingers crossed for a good coat of glue this time - and I hope that's all you need.  No more hospitals!!! 

Keep us posted!
Lori

[leapyrtwins]

Tam -

I'm so sorry to hear you are leaking again 

I hope the doctor's "patch" job works tomorrow and that you can stay away from the hospital.

Keeping you in my prayers and hoping for the best,

Jan 

[Debbi]

Oh, Tammy.  I am sending extra prayers for you - and I REALLY hope you won't have to return to the hospital.  As I know from personal experience, not only is it hard physically, it is also very hard emotionally.  I will hope that the exrra strength sealant does the trick. 

I know this feels awful, but please try to relax as much as you can.  Also, try to get as much rest as you can.  I know this next bit of wisdom is pretty pointless, but I'll say it anyway - try not to get discouraged and stay away from the ledge.  (I've been out there on the ledge - it isn't really a very nice place.)

warm wishes and hugs coming your way,
Debbi

[leapyrtwins]

The ledge is never a very nice place 

Keep the faith, Tam.

Jan

[4cm in Pacific Northwest]

Tamara,

I pray that overnight, and spontaneously, your CSF leaks stop.

Between now and seeing your doctor stay clear of all persons with cold or illness- as currently you are vulnerable. Keep tabs on your body temperature.

Praying for you…

HUGS

Daisy Head Mayzie

[Pooter]

Bleh Tamara!  I feel sorry for you!  My "leak" never came out so aside from the swelling and headaches (both better now with a new med) is the chief concern for me right now.  I hope your head stops leaking and/or the new staples/sutures plus the sealant work for you!  Both of the other options are yucky! 

I'll pray that the leak gets better for you!

Brian

[wendysig]

Tamara -
Sorry I fell behind on this thread!  I'm so sorry for what you're going through and pray that everything will be okay.  I hope any or all measures short of having to go back to the hospital do the trick.  I'll be watching for your posts and you'll be in my prayers.

Wendy

[Tamara]

Well, I now have additional stitches or staples, and a whole lot of adhesive. I have a truly lovely bonnet with a huge bandage over the left, but don't appear to be leaking at this point    I go back to the dr tomorrow to have him check it so will keep you posted.

I'm wondering if the fact that my original bonnet was removed only 24 hours after surgery might have set me up for this...??

I am getting a bit bored and antsy so I think I must be feeling better, so that's good news! (Don't worry, I'll still take it easy)

Thanks for all the support, guys, I really appreciate it!

Tam