Chiari Malformation Community
Second Opinion & 3 days to Surgery!
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Second Opinion & 3 days to Surgery!

Aaah. That is so weird to say! I can't say if I am terrified, or exhilarated by thought of being symptom free. Its such an overwhelming time of my life. The weather today is absolutely beautiful today, which is contributing to my good mood. Its a clear skyed and breezy 73 degrees. I am thankful for this day because I am so ruled by the weather. The waning mood is probably contributing to my good mood as well :)

So I saw Dr. Batzdorf at UCLA yesterday. He is a Chiari specialist I have read about a bit, and also the only one within 500 miles. I called him to get a second opinion. But since my first meeting with my neurosurgeon was only 4 weeks ago and my surgery was scheduled pretty soon after that I could only see him as a reassurance that I was on the right path. And that he did. After a thorough investigation of my symptoms and check up and review of my MRI's he said that he definitely reccommended sugery in my case. Scary and reassuring. He said the stay on the same path Im on and continue with my surgery on Tuesday. He said that he usually does the Craniectomy, Laminectomy and then a bipolar shrinking of the cerebellar tonsels before putting on the dura patch. My neurosurgeon, Dr. Golshani doesn't do the shrinking. But Dr. Batzdorf said it only quickens the lessening of symptoms because your tonsels slowly ascend up into the correct place eventually but this electric treatment quickens the process.
What are your guys' experiences with this treatment? Who has had this done?

I am still pretty happy with the procedure that I am going to have done though as I am confident with my NS and feel I am doing the right thing.

After our long day at the Doctors I got to go to Barnes and Noble and buy some books for my convalescence. I feel that I couldn't have picked a better time of year to be bed ridden. I got Ray Bradbury's The October Country, Stephen Kings Skeleton Crew (Short Stories), and H.P. Lovecrafts Great Tales of Horror. These are so fitting for the month of October! Such a beautiful time with the changing of the seasons and the increase of ancestral energies. Looking forward to recovering from this minor set back in my life. The learning experience to connect more with my body and the people I love has been invaluable.

I hope you are all having a good day as well. I know this experience can have so many ups and downs. I will send good energy out there to all who are one their downs. It will get better :) Imagine life without restrictions! I cannot wait.
21 Comments Post a Comment
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Avatar_f_tn
Good to hear that you are reassured.  Im glad that you are going into this with the best attitude!

(I questioned having my tonsils cauterized, but my NS said that I didn't need them, so.... I decided not to micromanage his job, lol).
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620923_tn?1413427272

  I echo Viv's sentiments  I am glad u got a 2nd opinion....and that u r more relaxed about the decision.....

  I pray u get the outcome u imagine : )

  BTW- I had my tonsils cauterized.....for me it was necessary to get them out of the way as my odontoid was not totally retroflexed but was causing an issue itself so they needed as much room as possible.
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After i had my tonsils snipped, i couldnt spel or cpitalize anymore.
:)

This made me think of how they used to yank out the other tonsils, for "prevention".  I used to get horrible sore throats afterwards anyway; I can still remember hallucinating from a high fever when I was 8.

I didn't want this unnecessary procedure for my children, and doctors in the next generation did not recommend it routinely.

So, go figure, then BOTH children had to have tonsillectomies, as adults.  My DD's dr said her tonsils were "giant pus-filled sacks". Sorry, gross.
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620923_tn?1413427272

  I had a tonsillectomy and my adenoids (adenoids) removed when I was seven...for breathing with my mouth....I still remember that hospital stay.....no fun....and I was a mouth breather until I had my PFD...I can breath better thru my nose since that...not sure y....but I can, I do not feel like I am smothering ne more.

My cerebral tonsils were not snipped....just shocked in order to shrink.....
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1823499_tn?1370093889
Good to hear the positive attitude. I had one tonsil electro cauterized, dr said when he opened me up it was necesary. We did not discuss it beforehand but they don't really know til they get in there, so I didn't have a choice. I haven't noticed any additional issues due to it. Make sure you have someone update us on your post op status if able. Hugs,Dana
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3219959_tn?1346010119
Ummmm... I don't mean a tonsillectomy I was talking about the cerebellar tonsils for Chiari Malformations. But I did have my tonsils out when I was 14!
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620923_tn?1413427272

  No I know, I was responding to someone else that mentioned it on this thread...

  If u re read the above posts u will see I had my cerebral tonsils cauterized....and it was necessary as I had overcrowding....

I was replying to Viv about a comment she made, sorry if u were confused.
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Sorry I derailed your thread.
(If you didn't know, they used to remove throat tonsils from most children in the 1950s).

My cerebellar tonsils were cauterized, not snipped, but I don't know by how much.  Your NS may find it necessary to do that, but it's not that big a deal, in the big picture.
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Gla to hear u r in good spirits! U sound like me as far as ur attitude as surgery approaches! I was beyond ready as it sounds like u r too. I too got books from B&N but I went with the 2 newest John Grishams (my fave author) and a few Janet Evanovich (not sure if I spelt that right?) books. Unfortunately for me, I couldn't read post-op because my eyes have felt the effect of my surgery. BOOOOOO!!! I love to read and was so looking forward to curling up with a good book. Oh well, C'est la vie! I hope I get to snuggle and read ur books..u'll have to let me know how the S.King one is, I've been eye balling it myself...
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I couldn't read pre nor post op. Still can't. I don't comprehend what I read unless I read out loud and then I still don't. I find myself reading one paragraph a million times before giving up. I have had this issue my whole life. I think its part of my cognitive issues?! Now that I know so much about chiari I def know I struggled as a kid due to it. At least it makes sense now ;) sorry to get off topic. Hope you are enjoying friends and family this weekend before surgery. It will help take your mind off it, hugs, Dana
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I am reading Much less these days; it makes me too tired.  I thought that I would mourn this loss too, but Ive adapted--audio books, old time radio shows, films, watching the birds at the feeder (which I had moved on the deck).
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@ Viv, ur so awesome...love how u just go with the flow and make due with everything...u remind me of my Mom she has had Breast Cancer and Leukemia and she spent so much time in the hospital with the Leukemia. She just dealt with it and did what she could.
She's an inspiration and so are you!!!
We r so close in surgery dates that I love to hear how u r doing because I know we r dealing with a lot of the same things at the same time! Thanks for always lifting my spirits and being so positive!
<3 JEN <3
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Aw thank you; that is so nice to hear, especially after getting knocked on my A** for the last couple weeks.  Sometimes its so hard to be upbeat!
I have to hope that this too shall pass.  
I planted peonies today--i ordered them months ago, so that I would have something to look forward to--even though I really wasnt in the mood.  But it actually took my mind off me for awhile.
Id rather feel sick from gardening than feel sick from doing nothing, lol.

Did your mom recover from both conditions?

Maybe the only perk of aging is developing a whatev demeanor?  :)
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3219959_tn?1346010119
OOOh interesting! How were your eyes effected? I haven't heard anything about eyes being effected.
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Yeah sorry I didn't mean to sound rude!! I was just super confused. But upon re-reading it i see the flow of the conversation. Thank you for the comments!
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I am enjoying friends and family this weekend thanks! Yeah I have those same problems with re-reading paragraphs! I hope I am able to read. That would be unfortunate if I was unable. But I appreciate you guys letting me know because better to be prepared than not.
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@ selma,.viva i was wondering how does the tonsils in the back of the throat relate to.chiari.. I was constantly sick as with sore throats and high fever as a child... it was my thing, always had a sore throat and chloraseptic spray ( if you guys ever used it ) was my prized possession next to barbie dolls... Is just coincidental that we all had the same.issues.. by the way i still have my tonsils and they are HUGE...
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@ Mac - for me it was just my eye sight isn't as good as it was pre-surgery. I go see the Optometrist on Wednesday to see if my eye sight is deteriorated or if it is all in my head...lol (sorry I couldn't resist). Back to serious matters...when I attempted to read or spend any extended time in the computer I could feel the strain and it would start to give me a headache and my eyes would hurt and burn/sting. I have pretty much 20/20 vision and the Optometrist say I have astigmatism so I have sensitivity to light and she said my eyes r lazy. So mainly my glasses r for driving at night and for long periods of time on computer and/or reading.
Hopefully u won't experience any vision issues, my NS said it isn't something that happens all the time but its not a shocking side effect either. He just told me to wait 3-6 months to see the Optometrist.
Oh!!!! I just remembered that when I first came out of surgery my eyes were very blurry. I remember my parents coming to see me and my dad was wearing a t-shirt with some writing in it and I remember I couldn't read it...so just a heads up in case that happens. By the time I was released (48 hours I spent in the hospital) the blurriness was basically gone.
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I was speaking in general. One of my issues has always been vision even tho my eyes are perfect, lol. And I've never been able to understand things I read, not even growing up. Can't concentrate either.
Sorry I threw your post off track again, lol.
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Avatar_f_tn
I would believe anything is related to Chiari at this point!  
In the book "Contents under Pressure", the author finds out that his sore throats/ earaches are due to compression on the 9th cranial nerve.  (My NS loans this book out, it is so good).

The pain in my ears & throat would be so bad, that I could just not believe that there was nothing to see.

My NS thinks that Chiari may have been implicated in my detached retina & eye pain.  
Of all the drs Ive seen, it was the neuro-ophthalmologist who "got it" about the Chiari impacting my vision.

@ Jen, I hope your next appt goes well.  I had every eye test available, & my eyes are fine, according to the tests!  I expect that to continue now that Im decompressed.  I didn't have a reflex in 1 eye. I still have eye pain though; my NS said it's due to nerves waking up.
A numb eye-- who would believe it.
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Avatar_f_tn
Not sure our conversation "flows", lol.

I can follow a novel or article, but I'll be darned if I can keep people--& their symptoms--straight.  It's embarrassing.  I don't know how selma does it!

Oh, I also rent movies that Ive already seen.  Duh.  Im not real fond of the cognitive impairment.

Anyway, Ive found that I needed to rest my eyes, a lot, maybe to rest my brain?  I found that frequently looking into the far distance helps.
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