Inoperable

[blondeballerina07]

I was in the hospital two weeks ago or so for nine days. The problems started with extreme pain and vomiting and progressed into loosing consciousness because of oxygen levels falling. After 2 ct's and 4mri's I was told my herniation is back descended farther than before no exact measurement given to me this time and that I am inoperable that we will have to "play damage control". I won't even get started on the bedside manner. For now I am more worried about finding help, another doctor was very concerned because with the oxygen levels falling it has now become life threatening she suggested looking into tertiary care centers and mentioned UCLA, Cornell and UPMC. I live in the southwest so UCLA is definitely the closest to me, but I was wondering if anyone has had any sort of experience--positive or negative? I also plan on sending my films to Dr. Oro in the morning.

I feel more lost than ever right now. To be told my condition is life threatening and that it is inoperable, I just don't know where to turn.

[selmaS]

  So sorry u have to put ur schooling on hold...will it wait a bit?

  I know this is frustrating and pray u find a workable solution soon.

     "selma"

[blondeballerina07]

I had some problems with oxygen levels dropping prior to surgery they were showing up as seizures it took them forever to figure out that is what it was at the time, and since surgery have had only two instances where I blacked out, they couldn't say if it was from oxygen being too low, so it started pretty abruptly the night I was admitted to the hospital 07/23. hasn't been a fun experience, I really enjoy my alone time which I now have none of and I am suppose to be starting my master's program today. very frustrating!

[selmaS]

  I am glad u r on a monitor and that u r being watched. Sleep apnea is an issue we all have to be mindful of.

Yes and with that info I understand that it is well established.....goodness when did this start, u did not mention having this b4??

   "selma"

[blondeballerina07]

Right now I have an oxygen saturation monitor with a really loud alarm and I am not aloud to go anywhere alone or be home alone. I have not done the sleep apnea testing mainly because they had me on a monitor 24hrs a day while I was in the hospital and I would stop breathing through out the day and while asleep so they said it was not needed since it was already established, which makes sense to me.

Zygy2 earlier I was being sarcastic in the fact that the hospital was nationally ranked and was telling me there was nothing they could do. I am not taking that opinion seriously an giving up, but thanks for the encouragement to keep going.

[selmaS]

  Hi....I know there is  much going on, but I want to direct attention to the low oxygen levels ...this is what is life threatening to u at this point. What was done or given to u to help?

Do u have a machine to help ur oxygen levels?....There r companies that will come into ur home...NovaSom is one of them....they do in home sleep apnea testing, and testing for low levels of oxygen.
I re-posted as I spelled the name wrong.....
Address this first, then deal with the rest...

  Please keep us posted

    "selma"

[zygy2]

I think lots of people hear "it was done right the first time"  who knows, I guess that for some that is right and for some it is not true.  How to figure that out I just don't know!  Something must be weird to have it still herniating further!  That might be the question I would want answered, is it more fluid, is it too much bone out the first time?  I have only read a little about the bending brainstem issue, I am sure that complicates things.  I would have to research a bit to understand it more but I know they do the removal of the back of c1 to make space, some get c2 I think also??? So it seems weird not to have that removed, otherwise what opens that space??? Did they try retracting the herniation with the electricity or cut the tonsils?  Did they open the dura?  I continued to have issues because my bovine dura patch had a leak and was stuck to the cerebellum.  Even if it seems you got good opinions, I would still try to find more, especially if they are saying it is so dangerous!  I had a wonderful surgeon that I love do a knee surgery and I knew it was wrong but no one would listen... I couldn't get back to the surgeon because of the system and everyone seeing me just kept telling me that he did a great job.... I went elsewhere and I was right, the new surgeon agreed with me and I had to have an additional knee surgery. My first surgeon did do a great job, he just missed part of the problem.  I am not mad he missed something, I was mad that they would not listen to me.  If you are in a dangerous situation you need to keep fighting to find answers about how they are going to take care of you now!  I agree that February is a long long wait, I hope you find someone to listen that does not back out the door slowly! -zygy

[blondeballerina07]

I got two opinions while in the hospital. One NS would not answer my questions and instead slowly backed out the door as I was asking. The others explanation was the surgery was done right the first time; if they are to try to take out more bone the likelihood of the brain to continue descending is very high, and because of the basilar invagination (bending brainstem with some bone stuck init) they can't do a lamenectomy because they had to fuse my skull to cervical spine to correct the bend. These doctors are from a nationally ranked Neurology and Neurosurgery hospital but my previous surgeon who was the expert has moved and will not start at his new job until the end of february. That is a long time to wait given the circumstances.

[zygy2]

That sounds terrible and frightening!  I would want more information WHY they think you are inoperable.  I just finished surgery number three to get things right and I don't understand what they are unable to fix.  I would look for a second opinion as fast as possible.  I would not want to mess with something life threatening!  I would also get the MRI's and reports so that you can read for yourself what the radiologist is saying... perhaps you can see that way what is going on!  I hope you find some answers quickly.  -zygy