My day at the NS

[sleepypea]

Hi everyone,
I just wanted to give everyone an update as to how my appt. with the NS went today.
I went in with my folder full of CM info. But I chose not to mention anything until I heard the Dr all the way through first.
I was sceptical of going because he is very new and in his last year of residency and I was scared he would only read my MRI report which states I only have cerebellar ectopia not a true CM.
However I chose to go in hopes that a new fresh Dr. would be eager to learn and search the condition out for himself and hopefully have some answers and/or a treatment plan.

He came in sat down at the computer and read and studied my MRI and finally said. Ok so here's what I see. You have something called a Chiari. Ahhhh the magic words I was so excited by this point!!! I see a silver lining...
He then goes on to explain it and has a very good bit of knowledge of it.
After he finished he said he chooses to let the patient decide rather they want PFD surgery or not. He said if I wanted it he would do it.
I was set aback a little and said well, do I have a csf blockage?? The report says no flow in the 4th ventricle?
He explains that if it was flowing to fast or too slow the cine MRI wouldn't pick it up and that he didn't believe I had a blockage.
I then ask, well do I have over crowding? He said not really I can see where the csf flow is clear through the passage. The CM is not putting pressure on your brainstem or spinal cord.
I followed by asking if It was possible that I had a syrinx in which he replied. Nope if you had one it would be in you upper cord area because that is where your herniation is.......I didn't want to be a know it all but I did wan't him to know that I know that's not neccessarly true. So I said, well I know other people who have a CM sometimes have a syrinx on further down, he just smiled and not you if you had one it would be easily seen on this MRI (Brain MRI only).
I then asked well have you performed this surgery before? He said Oh yes many times. I said and....what was the success rate? He said well it just depends. It either works or it doesn't.
Number one I wouldn't let such a young pup do brain surgery on me neway but I was curious to see what he would say.

All in all I feel like he was very honest. He did stress to me that at this point they just dont really have a lot of answers so they try and base rather surgery is a good option by how much the patient is suffering. He told me it was my call. If I felt like I just couldn't take it anymore then I could call him and he would schedule the surgery. He said he felt my chances of feeling better were less then 50/50. He specifically said. It's a crap shoot. It's hit or miss. and then went over all the things that could possibly go wrong.

For the most part I felt like he was definitely more educated in the condition then all of the other NL and NS I have seen, but there was still some things I didn't quite agree with.
So needless to say he didn't order a full spine MRI or more testing of any kind.

I'm wondering now. Should I send my scans over to TCI for a second opinion or take it for what it's worth and just try and hang in there as long as I can and pray and hope a better treatment plan is dicovered in the near future.
I'm scared that the risk out weighs the possible benifits and he was just too unsure of himself to make me feel like PFD at this point was a good option.

If you have an opinion please feel free to give it to me...I am so torn. I hate feeling this way. I hurt all the time, but I sure don't want an unneccessary surgery either!!!

[selmaS]

HI...so u got a little good , with a little bad from this guy, but go with ur gut and how u feel.

He is educated enuff to know surgery is not a fix or a cure, but I am skeptical about the syrinx issues...too many have  had one in the thoracic or lumbar region of the spine.

Deff get a few more opinions and see what they say.....

Keep pushing until u feel comfortable.

"selma"

[n40066]

as long as you are still asking questions, you are not yet ready to have surgery.  nor have you found the right dr for you.  send your films off to a few specialist.  the very first thing they will tell you they need is a full spinal mri.  it's a given in the field.  ergo, this man, while young and eager, is no specialist.  please, keep looking.  you will know immediately when you have found the dr that is right for you.  you only get one shot at your first surgery.  if it's good, it's really good.  if it's bad...you will pay for it the rest of your life.  there are many on this forum that can tell you their stories. listen closely to them.... learn from them....and choose wisely.  many specialist will charge you nothing at all to have a look at your films and many will call in the order for you to have the additional testing you need to have done.  you are on the right path, my friend...
don't stop now!

elizabeth

[xmelax35]

I am not actually sure what to tell you, but I guess in my opinion sometimes a 2nd, 3rd, 4th to 6th opinion doesn't hurt.  I think it is all in what you can handle and how bad your symptoms are. If you feel like crap every single day or rather most of the time, then I would send them where you feel is the best place to do so. I hear the Chiari Institute is wonderful.

Anyway you had mentioned about him being young and the knowledge he has. I have noticed that the younger they are seems some of them really know a good bit about the condition...however a lot of them I have come across are not neurosurgeons or anywhere near that field. One of the ER Physicians who sent me by ambulance to another Hospital to be on the safe side, was a young lady who was I believe probably in her last year of resindency too and she was quite knowledgeable on Chiari and even suggested I see a surgeon, which is more than I can say about the other ER doctors where I live!  So anyhow, I totally get what you are saying though about him being to unsure of himself and not wanting to have him do your surgery.  Even as old as the surgeon was that did my original surgery, I will never go back to him - he claimed to have experience with Chiari and well...I am back at square one well sort of.