How long is long enough?

[Patsy109]

My husband had decompression in FL for 11 mm herniation 10/23/09 and all symptoms returned within six months (he did great inbetween.) We relocated north and started looking for doc.  After a year and much disappointment of Mayfield Clinic in Cincinnati and Cleveland Clinic telling us it's not Chiari (expcept movement specialist said it has to be and NS refused to see my husband again) and Goodman Campbell Brain and Spine basically telling us they did not know enough about Chiari to help us and telling us we should go to The Chiari Institute in NY, we did...go to TCI.  We saw Dr. B on 6/22.  He was four hours late to see us, spent maybe 30 minutes tops telling us he had Chiari and sent us home to do 7 tests.  We did this in one month, and they have been on  his desk  for almost four  weeks now.  His office staff is rude, his nurse is remiss in getting back to us so I finally started emailing Dr. B directly.  He did get back with me within a few hours both times and I appreciated that very much.  However, since he said he started reviewing his case about 10 days ago he has still not giving us his opinion and from what I understand he leaves on the 15th (tomorrow) and will be gone for the rest of the month.  Personally I feel  like this is completely rediculous.  We waited a couple of months  to even see him and now a couple of months to find out if there is light at the end of this tunnel.  How long is long enough to wait?  I finally sent everything to Dr. Oro in CO and we have an appointment with him at the end of the month.  At least hoping to leave there with is opinion.  We are drained.

[selmaS]

  I am so glad Dr B got in touch with u...He was always good at replying to me as well b4 I was even a patient at TCI...and then he was not my Dr, but always took time to reply to my e-mails.

As I said for us the time goes so slow and the Drs do not have enuff time and the good ones want to get it right...

Please keep us posted on how ur DH is doing and what u do find out

        "selma"

[Patsy109]

Thank you for your encouragement. I did send Dr. B an email yesterday to which he replied today.  I do not begrudge the man a vacation, in fact all the better he should be rested should he be doing a surgery on my husband's brain!  And he is excellent about getting back to me.  (Unlike the nurse. If such a doctor can find the time to shoot off a response, you'd expect the same from the nurse.) There are a couple of things I wanted to ask him, but just thanked him for his reply, because he is on vacation.  He said he did review the case further and that all the new information was quite negative.  This was confusing to me, because I'd like to know what that means. He further stated that the 3dct scan added great insight to underdecompression.  This  would lead me to believe that it is not a case of cellebellar ptosis, but rather not enough bone was removed.  Or that the doctor who did the surgery initially did a  text book decompression.  He did a good job, but just did not remove enough bone.  These are my  assumptions.  He has to discuss this with the movement specialist and then with his team  and possibly redo  the decompression.  Whew...And to blondeballerina07:  While at the Cleveland Clinic the neuro on the floor thought that my husband might have Progressive Supranuclear Palsy.  This is the doc that would also test for MS or Parkinsons.  He tested my husband  in the room, watched him walk, did all the other standard neuro tests  with the eyes and strength, and had him write  his name and a few key phrases on paper with a pen.  Based on all of this he said  that Darin does not have any movement disorder, and that he feels it is all cellebellar  and to return to the NS.  However, the NS at the CC refused to see Darin again.   Truthfully, the CC knows very little about Chiari.  As I asked the nurse there before we left, "So  what you are telling me  is that your expertise with Chiari ends with one MRI?"  And that's about it with the CC.  I'd not recommend them for Chiari.  I'm sure they are great with things like heart issues, a field where there is more known, but with Chiari we have to seek out TCI or Dr. Oro.  Thanks again for the encouragement.  And yes, better to take a month to do the right thing than to be hasty and rush in only to have to do it again next year or six months from now.  And honestly, if the nurse would just help me understand the process with simple replies then we  would be so much more at ease.  And, a second opinion from Dr. Oro can't hurt.  It will be even  better if  they come to the same conclusion  and it will be worth the espense of either trip.

[blondeballerina07]

Patsy if you don't mind me asking why was your husband seeing a movement disorder specialist. I ask because I was seeing one prior to surgery and have know been sent back to one and he is saying that my symptoms are not related to the chiari and wants to test for other things.

[actressmouse]

Don't lose hope...my first set of papers to TCI were lost along with the scans, so I had to re-submit.  I would check regularly to see what the status is of your husband's case with TCI.  When I was sitting waiting for my appt., I can't tell you how many calls the secretaries were fielding from people who thought they could do "walk in" appts....the phone rang off the hook.  If you have Dr. B's email, that is his preferred method of communication (as per what he told me last week).  Hope this helps.

[selmaS]

  Hi...I replied to this on the other thread, and I understand ur frustration. As I mentioned b4, at TCI the entire board of Drs at TCI must review the case not just Dr B...so it does take time...I know it took a while for my info to get reviewed and even after surgery was scheduled it was reviewed again and changed....from my vantage point they seem to want to do what is best, and it may not be the fastest ....unless it needs to be.

Not knowing how ur DH's first surgery was done...duraplasty, lamenectomy..etc...it is hard to know what the stumbling blocks may be for the TCI team....

There r many things that can happen after one has had a PDF....and it is not as clear as the first surgery, especially when u r going in after a different surgeon...it can be tricky.

And u want it done right....I pray u get in to see Dr O, but do not lose hope, that a good NS will given time figure the best way to help ur DH.

  Please keep us posted

  "selma"