Intro and NS appt today

[chiarimommy]

Hello.   I'm 29 years old.   I had an MRI last week which showed a 10mm herniation so I went to see a NS today for consultation.   He didn't recommend any additional testing for me and said surgery is based soley on my symptoms so that if my symptoms get to the point where I can no longer deal with them, he will do surgery.   He is an excellent surgeon, and I trust him.  It's just that I've seen so many of you here who have had additional MRIs of your entire spine and CINE MRIs so I just wanted to get some other opinions.  He's on the recommended list for Ohio.  I've had exertional/pressure headaches for the last 10 years but didn't do anything about them til last week and only cuz I had a bad episode after bending over.   I have palpitations, dizziness, and fatigue.   That's about it though in terms of symptoms.  The headaches have progressed in intensity and frequency recently so I'm concerned.  

[selmaS]

In addition to looking for a syrinx with the full spine MRI's they r checking for tethered cord as well....which can get worse after decompression depending on how tight the cord is.

Just wanted to add that : )

[BigJim_in_NY]

I would tend to agree that more testing should be done. Surgery based on your three reported symptoms alone and an MRI indicating you have a herniation would be foolish IMHO. If your NS recommended any kind of therapy for Chiari I would thank him for his time and move along.

Selma has some good advice. Interestingly enough I had my first flow study and CINE done yesterday on my 1yr post op anniversary. A lot of Chiarians I have spoken with also have full MRI's of the spine to look for a Syrinx.

I did (and maybe still do) have a syrinx and in combination from my symptoms was the deciding factor for surgery.

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Here is a link to the list...all drs do need to be researched, as the list is compiled by members here of their drs .

[heather704]

You mentioned that Dr. Di is on the "recommended" list for Ohio.  Was this a list you accessed through this forum?  

[selmaS]

Hi...Dr Di is very well respected in chiari circles...we have a few members that have had surgery by him...one is ChiariWolf...and he loves him.

What u have to understand is u can wind up with more symptoms after surgery then b4...u can have a reaction to the meds, u can develop other related conditions and issues that may require more surgery...the dr must look at ur current symptoms and determine whether or not the benefits out weight the risks... right now, he does not feel surgery is for u , looking at ur symptoms.
I know it feels like a lot, but one u begin with vision issues, drop attacks, and numbness, gait disturbances, sleep disturbances...including sleep apnea,breathing issues,  along with the many u mention it may appear to leave it alone for a while.

Symptoms indicate CSF blockage....and the CINE is done to locate that blockage...a blockage can cause a syrinx to develop...which surgery is one means to help avoid.

Pain management would be  more inline for u.For the most part meds do not touch the HA's from chiari, but altering what and how u do things and avoiding certain activities may help....we do have a list in our Health Pages.

I know it is frustrating to have a condition and not a plan on how to manage it. Finding a good NL(neurologist) to help monitor ur symptoms and condition and even look to see if u have ne related issues is more along their line...NS's only operate..they do not dx...

I hope this makes sense to u....and I hope u do not lose faith in Dr Di as he is a very good choice for when u do require surgery...and I would rather have a Dr say no surgery now, then one that says ok lets go, and u have sooo many complications or added issues u didn't have b4. Knowing the risks involved with this surgery is how the dr makes this decision.

"selma"

[chiarimommy]

Thanks selma.  :)    Does anyone know who has any experience with Dr. Xiao Di from the Cleveland Clinic in Ohio?     He's on so many respectable lists and that's who I saw.  

[selmaS]

Hi and welcome to the Chiari forum.

First, there r many well trained NS with great reputations, but they r not well informed on chiari and will do surgery but r not equipped for surprises....

A CINE MRI should be done to see if u have a CSF blockage and overcrowding...then symptoms and quality of life are looked at next.

Please consider getting a second opinion from a true chiari specialist,
U know ur body and how much longer u can deal with these issues, and to go to PT , there just are none designed for chiari patients...and it is possible that it may do more harm than good.

This is a life altering condition, and surgery is not a cure or a fix...just a means  to slow the progression of the condition.

We r happy to have u join our little family here, but not happy for the reasons u had to seek us out.

"selma"

[chiarimommy]

Caregiver, he actually recommended against surgery for me since my symptoms aren't bad.   I'm not sure what physical therapy would do for me though as I don't have any deficits anywhere.   I have no neck or shoulder spasms or any exremity issues so I"m not sure that PT would make a difference or what they would even treat during therapy.   I"m just so confused right now.  :(

[caregiver222]

My opinion is to find someplace else to be evaluated.

Square two was to have physical therapy. Not to "wait and see if it gets worse".

Sometimes it works, sometimes it does not.

But the failure to recommend such therapy give your health care provider a "F".

Under no circumstances should you have surgery without first undergoing physical rehabilitation therapy.