Appt. w/ Dr. Oro Today

[denverluv]

So, somehow my herniation went from 11mm to 16.5 since December. How the heck does that happen? Anyway, he said my syrinx isn't that thick, but it is long on the top part, and a smaller one one the bottom, but he doesn't think it is wide enough to be causeing any issues. He said my shunt is working, and he will be able to tell after surgery if my cord is tethered again, becuase it looks like it might be in a couple of areas, but he wants to wait and check after the decompression surgery to look into that, because the decompression should make the syrinx shrink and then he will be able to tell. If I am still having issues of numbness and arm and leg issues and incomtinence, ten he will check for tehtred cord. If not, it is probably all Chiari related.  

You know the deal- be in the hospital for about three days, rest, he will see me a month after to assess. He said most people in jobs like office workers can return to work in a month, so I am hoping with God's help and positive thinking I can be back to a semi-normal state by Sept. I know, take it easy, which I plan to, but I am really thinking that since my sypmtoms are not entirely debilitating I can feel better after the surgery.

Pray that I can have a life again, it will be amazing to see how it feels to not be on anything, not have constant pain-I can't wait to feel better!

[selmaS]

I didn't think u were...just took the opportunity to explain it as many read the threads....

No worries : )

"selma"

[denverluv]

OMG- I am sure brain slump cannot be as funny as it sounds. I can't imagine. I wasn't trying to make light of it at all. :)

You guys do a really good job of answering things, because I feel sometimes real-world answeres are better. Thank you so much Selma.

[selmaS]

No worries, I believe there r others that also had their tonsils cauterized too...
no worries, I did see the other thread u did...too many times we forget our limitations with this condition, and when we have pain we know all too well.

And no matter how funny brain slump sounds, it is no fun to have it....once dx with it u face a 2nd surgery to correct the mistake of the first NS.....

The one question u should always ask at a dr appointment is- How can I contact u if/when I formulate questions regarding this visit...we r like deer in headlights most time...even having a list may not help if the list is directed at surgical questions  and then u get a curve ball and told u have a few other issues...then u may as well not have the list as the questions can not cover the unexpected....

I hope u feel better, ..



"selma"

[denverluv]

Brain slump - that always makes me laugh :)

Sorry it took so long to reply, having a terrible couple of days. My kids were messin around and I got hit in the back of the head the other day and man- the pain is intense. I told my husband that I cannot beleive people have this condition with this kind of headache and the doctors blow them off. I am lucky to have not been having this kind of headache the whole time, otherwise I would have gone mad. My only relief is knowing I am going to have the surgery soon. To those of you who had to go through this kind of pain for a long time I am so so so sorry for your pain.

Selma- Thanks for telling me you had yours cauterized- I was kind of freaking out about that and thank you for explaining it to me- I was in no mood to ask ?'s the other day. I was just like- ok ok - do what you gotta do LOL

[selmaS]

HI congratulation on a good visit with Dr Oro..even if u were not up to all the details...I said the same to my NS the AM of surgery....I deff could not hear details just b4...lol...

I did have the tonsils cauterized....it is mush better then what some do...so cut them off...while others do nothing with them.....ne tonsil that is blocking CSF may need to be moved somehow, the only other option is the dr removes too much bone and then u could end up with brain slump....there isn't always enuff room with the amount of bone that is considered safe t remove.

"selma"

[*Stormy*]

I'm happy to hear that your visit went well with Dr. Oro and that your surgery date will be coming up soon!

I never had the cauterization done but it sounds like a good plan judging by the size of your herniation.

Good luck
Carolyn

[denverluv]

It was a different radiologist who read it, but this time Dr. Oro did not have the rad. report back yet he just measured himself. But last time I saw him he said 11mm, but that was based on the other report. So who knows/ I did not know it was a cause for concern, he didn't act like it or maybe he just didn't have too much faith in the other report since he ordered his own. I don't know LOL! I do know, however, I have been going down hill fast so maybe it has grown. I don't know if they are long and thin, he said it was completely crowded and he was going to cauterize it. So, you guys that know about this stuff tell me LOL!  I was having the worst HA ever yesterday, he was trying to talk to me and tell me about cauterizing and I grossed out and he said "ok- you don't want all that information!" and I said "no- I don't LOL- I am listening to you but my head hurts and I really want to just go home" He started laughing. Afterwards I kinda felt like a jerk but at that point I didn't feel like listening to anyone even if it was Dr. Oro.  

Oh! Sorry! My surgery is sch. for July 6th.  I have to get a CT on the 28th, and he told me why and now I don't remember. Oh well I guess I will find out, that is my pre-op appt day.

Thank God for pushing my medicaid through and for sending people like Dr. Oro! Pray that everything stays on the up and up - that nothing falls through with the medicaid- thank God there was an opening for surgery so soon.

(the typos on my OP? - that is how I type when I haven't proofed it LOL- I thought I had but apparently not well enough!- I know how to spell, it's just Chiari brain LOL)

[stephanie_C]

I was originally told that my herniation was only about 7mm, then several years later I was told it was 13mm, so I asked the doctor to explain that. He went thru my MRI image by image and should me on some slices it was a lot smaller than in other slices. I think that radiologists measure it at a specific spot (ie right in the center) But the NS needs to see the whole thing so they look out more lateral and tend to measure it larger. But like others have posted it does sound like cause for concern.

Also like Selma said their shape can be a big cause for differences in sx. Mine were actually long and pointy which was one reason why my NS thought my surgery would be helpful cause when they cauterize them they go back to their natural (non-chirai people) shape. He explained it to me like a wedge that just gets jammed down or like a door stopper.

I have a pretty physically demanding job and I am only taking 4wks off work. My NS thinks thats pretty typical for a straight forward chirai so I don't know what additional "stuff" needs to heal when a syrinx or TC.  Good Luck!!!

[selmaS]

Hi..I believe it was in '08 we had a member got from a relatively small herniation to a very large one in just a few months....they can remain the same for yrs, grow very slowly or very rapidly.That is the biggest issue we face with drs not really being aware of all this.

[sheila53213]

I'm so happy to hear(not that this is good news) that someone else has had a difference in herniation in a short time span. I went from 5mm to 11mm from Oct. to May. I did not think that a herniation could get worst. But obviously it does.

Thoughts and prayers are with you that your surgery and recovery is smooth sailing.

Sheila

[selmaS]

Good luck with Dr O !!

Sounds like ur tonsils r bilateral in size.....and r long and thin...many times those with this type have fewer symptoms than those with a 4mm fat herniation....the wider they r the more blockage....but, with TC already released, it does sound more like a re-tether to pull the tonsils down....unless u were very active....lifting and what not??

I pray the PFD does allow the syrinx to shrink as well...goodness....u have quite a bit going on.....

"selma"

[Sweetpea32]

When is the surgery date? Thoughts and prayers being said that all will work out!

[rod44]

Is it the NS that has seen the differenced in your herniation or is this two different people reading this (NS v Radiologist) as different doctors read the MRI's differently. Either way it is a cause for concern.

I hope and pray that everything goes well and you get the answers you need and that you can get back to a pain free life.....


Ray