Anyone with experience with Dr Lu in Orlando, FL

[myg8rs1]

Hello I am a 30 year old female. I was diagnosed back in 2005 with chiari I approx 13mm with the typical headaches, neck pain, dizziness, etc. Recently however, my symptoms have worsened and I have been experiencing severe neck pain and stiffness, excruciating back and shoulder pain, numbness in my hands and occ my feet, ringing and fullness in my ears, generalized weakness and fatigue, etc. I found out last week that I have a "small" syrinx on my cervical spine and bulging discs at c6-c7. I have an appt to see a NS, but not until Dec. Just curious if anyone had similar symptoms from a "small" syrinx and if anyone has seen Dr. Lu in Orlando for Chiari or syringomelia? And if so, what was your experience? Also, if there is anyone that could recommend a good NS near the Orlando area with experience in our condition, I would greatly appreciate it! Thank you in advance!  

[selmaS]

  Hi and welcome to the Chiari forum.

The member u addressed ur reply to has not been active for a few yrs, but may respond if u send a PM (private message).

May I ask what type of surgery u had on ur neck?

It is very important that ALL related conditions are ruled out and u have the right Dr.

U may want to post a new thread, more current date or create ur own to get more replies from the members.

Many of us find we do have to travel to  get to a true Chiari specialist....and  not all Drs that treat Chiari are Chiari specialists.

[healthisimportant]

I have been seeing Dr. Lu in Orlando since 2005.  I was diagnosed with Chiari in 2005 and my regular Dr sent me to see Dr. Lu, I ended up having Neck surgery.  After about 6 months the headaches came back and I went back to him and in 2007 I had another neck surgery, then again in 2009 and then again in 2012.  I have mentioned to him that I thought the headaches were coming from the Chiari and he told me no, they were coming from my neck.  He wants to do another neck surgery.  So please make sure you get second opinions.  There is another doctor in his group that is a little more up on Chiari, his name is Behrman.  See if you can get an appointment with him instead of with Dr. Lu.   Dr. Lu is well versed in neurosurgery but not Chiari.  Best of Luck.

[Missy131197]

you are very welcome, he was wonderful and I would recommend him to anyone who is going thru what we all are.

Good Luck

[myg8rs1]

Thanks for the recommendation Missy. I will definately look into him. Hopefully he's on my insurance. Tampa is only 4 hours from me, so that wouldn't be too bad:) I appreciate all of your responses and the info on this site. It's comforting to know you are not alone...

[selmaS]

  Thanks u Missy : )

[Missy131197]

I have added him to your list.

thanks  Selma

[selmaS]

  U can post to the thread like u do this one and add the info, I will have it added to the Health Page list....

  http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  I bumped the list thread up so u can find it easier.

[Missy131197]

How do I do that?

[selmaS]

  Please add ur Dr info to our Dr thread......

  I am glad u found a dr that was right for u, and we all have to see a few to find one that is the one that we r comfortable with.....

    "selma"

[Missy131197]

I am a 40 year old female and I would recommend Dr Eric Trumble here is his info :
Eric R Trumble, MD Director of Congenital Neurosurgery Walt Disney Pavilion at the Clinical Professor at UCF, FSU, & NOVA-SE  
615 E Princeton St  Suite 540 Orlando, FL  32803
[phone] Fax [phone] www.neurosurgeons4kids.com
I drove an hour and 1/2 from Tampa and would do it again. He see adults with Chiari Malformation.  He see 2-3 patients with this a week, he is very well versed in Chiari and he listened to me and made me feel like I was not crazy.   I went to see him this week and even though he is a Neurosurgeon he told me right now surgery is not the answer he wants to look at other options, but if he had seen something that required immediate surgery that would be the route we would be going with right now.  go to his website, read up about him, you can even email him and he will respond.  Good luck, I hope you find someone that you are comfortable with that is so very important.

[myg8rs1]

Thank you both for responding!  I'm sorry it has taken me so long to get back to this forum...I didn't realize anyone had responded to my question...thanks again!  Selma, My last MRI was about 2 years ago in Sept of 2009. I was having regular 6 month f/u's with my neuro, but he was one that really didn't believe that chiari would cause any of my symptoms and said I was suffereing from migraines, so The 2 MRI's that I have had since 2005 (one upon being diagnosed in 2005 and a repeat in 2009) were ones that I had to push for. I wasn't expereincing any changes in my neuro assessment, so in his eyes, all was well I guess. We have a new neurologist new to our area, who I am seeing now and I really like him. Although he may not be too experienced with chiari or syringomelia, he's at least honest with you about that fact and willing to do his research and refer you to specialist or people who are vs telling me I suffer from migraines. I plan on researching and getting a 2nd, 3rd or 4th opinion!!  It's all very scary, but I def don't want to live like this for the rest of my life!  I have  3 y/o and  6 y/o boys who are gonna need me for a long time:) I prefer to look at the bright side of things, there is always someone who is suffering worse than me!  I will get through this!!  Thank you all for your support and I wish you all the best as well!  

[linnielou232]

As Selma states it is very important that you have more than 1 doctor oppion before making any decision's.  Havng surgery is not a cure, but when you have sypmtoms as it sound's it is now affecting your every day life, that is the time to consider surgery.  I am not familiar with the Fl area, but seek a second opionion before making your decision.  It is a slow healing process, but the younger you are the better your chances are for a better healing time.  That is what helped me in making my decision because like my doctor told me that the symptom's that I was having was not going to get any better.  I have no regret's in having the surgery, but it is a life changing experience.  Once having Chairi we alway's have Chairi.
I wish you the best in your journey, but I just wanted to let you know your not alone.  We are here for you.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, have u been monitored since 2005? When was ur last MRI b4 they found the syrinx?

It appears u have a CSF obstruction, that is what usually causes a syrinx to form....if u had been monitored they may have caught it b4 the syrinx formed.

I am not familiar with that Dr, but have heard of others that went to Dr Green in Miami.....u may want to see a couple of drs b4 u choose 1.

  Surgery is to slow progression, and restore flow ...this helps eliminate the formation of a syrinx ....since u have 1 u just have to keep tabs on ur symptoms while u research drs.

   "selma"