Syringomyelia surgery by Dr. Bolognese

[angie343]

Can anyone help me find a great doctor in NewYork city that specializes with CM and Syrinx?
My child (20 yr old) is waiting to have Dr. Bolognese go back inside her for a syrinx that she  developed after her tethered cord surgery in March 09. She is in so much pain and the hospital she is at will only wait for Dr. B to come and say yes or no if he will help her. He has so many leagal issues going on right now and the stories that are surfing about him I am really starting to worry. If he is not board certified does that make him less qualified, even though he has had a lot of good out comes from some of his surgeries. Any advice right now I would really appreciate it very much. God bless. Thank you  

[selmaS]

Hi Steve and welcome to the Chiari forum.

Hospital stays in general are at the digression of the dr and how u r doing.U should be in ICU for at least 1 day...I was there 2.

Everyone responds differently as well...I was in the hosp a total of 5 days...others have been in 3.

Do u have a chiari /syringomyelia specialist?

Is ur surgery scheduled?....

"selma"

[steve1215]

how long is the hospital stay after central cord syrinx surgery and what happens after surgery do you go to icu????

[selmaS]

Hi Angie,

I am so glad Dr B was able to get in to see ur daughter.
Do u know who he reffered?? I am curious.....

Hopefully they will find some meds or combo of meds to help her until he can intervine surgically.

I pray all will work out
"selma"

[angie343]

Hello everyone, thank you for your support. She is still in the hospital and in horrible pain. I think her body is imune to those meds already. Dr B has seen her twice. He has been very concerned, I think that if he could have done the surgery, he would of by now but because of the circumstances all he could do is be there and offer some advice. He asked if she is willing to wait for him he could do it by next week but if she cannot and he sees that her symtoms are getting worse than he will select another NS for her surgery. She is really trying to hold on for him but her pain right now is getting to much to bare. She may consider his referral. She trust Dr B. He helped her walk again from the last surgery. She's hanging in there.  
I hope that more doctors follow the doctors like Dr B and M and like Dr Oro, i think he's from CO in finding a cure and learning more about CM and TC. I have seen my child with all this pain and weakness in her body, try to explain to other doctors what is wrong with her. This should be the other way around.
CM and TC like Autism have along way in finding answers, I pray more doctors keep trying. Awareness.
Maybe my kids will become doctors one day and join the research. Thank you again and I will let you know how she does post surgery. God bless

[selmaS]

Hi...Dr Insinga was the Dr that did my eval at TCI..I was there March 31st...Dr B was not available then.

I do believe the Tethered cord surgery in question is Occulta Tethered cord- the occulta means it is hidden- this TC does not show up in the MRI's but, all the symptoms point to TC and they have to do surgery to find out.

Tethered cord dx as tethered cord that is visable on an MRI is not in question.

I know if these drs did nothing, these people would be just as upset......this is the root of all my current stress.

We do have a thread concerning these issues.

Angie, I pray u found an answer to ur daughter's current need.

"selma"

[gzaimsdad]

My 22 yr old son was scheduled for PFD on 5/12 but Dr. B was suspended from the hospital.  A Dr. Salvatore Insinga called us on 5/09 to see if we wanted him to do the surgery.  He said he is associtated with the Chiari Institute although his name is not on their web site.  We decided to wait for the storm around Bolognese and Milhorat to settle down.  Milhorat has "retired" from surgery and will only do reseach.  We saw another NS Dr. Winfree at Columbia Presbyterian who said not to have surgery because my son is relatively symptom free and there is no indication for surgery at this time.  If anyone is interested in reading more on this story I will attach the link.  There is also a lot of talk going around about "unnecessary" thethered cord surgery.  I think that Dr. B will not be back in the OR for a good while.  Good luck with your situation. gzaimsdad.

http://www.nydailynews.com/ny_local/2009/05/06/2009-05-06_brain_surgeons_thomas_milhorat_paolo_bolognese_suspended_for_abandoning_anesthet.html

[selmaS]

Hi Angie,

I was wondering if you heard from Dr B today?.....I pray this all works out for u and ur daughter.


"selma"

[Shane99]

It's important to understand that with Tethered cord, the standard procedure is to do the Tethered Cord surgery first. This often releases the Chiari Herniation. Generally, only after seeing if this works, do they decide about doing the decompression surgery.

Most likely at this point, they will put your daughter on a neurological pain blocker like pregabalin (Lyrica) while they decide the next step.

Dr. B. is your daughter's doctor. It's important to stay with him until either she gets to see him or he tells you to see someone else. If he can't continue her case for whatever reason, he'll recommend someone to take over.

[selmaS]

I totally understand ur frustration...I am scheduled on the 27th and was not told who is doing my surgery....I wonder if I am even going to get it.....

Did u see the dr's name I posted above ur post?.....I do not know nething about him, but maybe he can help u out....

It is bcuz of the ER and the immediate need to get her into surgery that the chiari info was not addressed. As I was informed when issues from TC are so prevelant that it is addressed first.And that it is possible that the chiari could get worse after the TC surgery.

Try and call this other dr and see if he is able to help u...I saw they extended the suspension which was suposed to have been lifted this week.....

Did u try to e-mail Dr Bolognese instead of calling the nurse?

"selma"

[angie343]

Thanks for the doc and # at that spine institute I will call him tomorrow. I need a plan B here since Dr B has so many issues going on right now. She has been in the hospital since last Tuesday on pain meds only. Thank you so much for your support. I forgot to include this on my last long commment:)

[angie343]

She did not have the surgery at  TCI, it was done at a hospital in east meadow, Hempstead because she was bought in thru the ER department when her legs went completely numb and she was suffering a lot of chronic back pain. No doc in that hospital could diagnose her symtoms until a NS did some tests and a urodynamic test to find that her condition was tethered cord. So he told me about Dr. B and all of his excellent experience and stufff and everyhing was just going so fast. He suggested the surgery because she was getting worse and I even asked the NS If this was a procedure that could be done by laser or some other way and he said no that Dr. B was the best in this tethered cord. So we went and had Dr. B do the surgery.
We never knew anything about this syndrome until then, they did not even tell us she also had CM we found this out with an MRI done in FL after her surgery.
Now I am really scared because tomorrow we will know IF D. B is willing to follow up with her or not. If not the hospital wants to get another NS to take her case and they could not even diagnose her when she first went in there. So we difinetly will have to find another qualified DR for her to see and hope that that DR is willing to treat her since Dr B already did the surgery. I feel like we have been left in limb to fen for our selves. Like no one cares. A on call Doc from TCI called my daughter at my request ( I was told Dr B was the one going to call) and he basically told her that Dr B is very backed up bc he has been out of town and a lot of his patients keep calling. He made it sound like it could be a long time before she can see Dr B.
Now we are in a world of @&#? because unless he calls the hospital tomorrow we are left pretty much alone to find another NS for Chiari and the syrinx that developed after surgery.
Sorry for the long comment but I am so upset and worried    

[selmaS]

Angie a member added this dr to our chiari specialist  list....please research and see what u think....let us know!!!


Dr Chanland Roonprapunt (Formerly of The Chiari Institute)
Spine Institute of New York
Ph: 212-523-6720
Title: NS

[selmaS]

Hi Angie,

Oh my I forgot ur DD is in NY....did u ask to talk to one of the other Drs at TCI???

I just read that Dr B is not board certified...I wonder if that is true.....

Maybe u can try Dr Oro...I know he is in CO, but he is one of the best.....maybe he can help or suggest someone.

I wish I knew what to tell u ....ur poor daughter....how long is she in the hospital?

May I ask did Dr M assist in ur DD's surgery?I was under the impression the Dr M did the TC surgeries....

I pray u find someone soon

"selma"