Robin: Dr. Heffez

[Guest guest]

,

Have you had the appt with Dr. C at s Hopkins yet? It is a shorter

distance and maybe you will find you like what he says just as well. For me

, it

was an easy decision for the mmost part.

take care,

[Guest guest]

,

Have you had the appt with Dr. C at s Hopkins yet? It is a shorter

distance and maybe you will find you like what he says just as well. For me

, it

was an easy decision for the mmost part.

take care,

[Guest guest]

,

Have you had the appt with Dr. C at s Hopkins yet? It is a shorter

distance and maybe you will find you like what he says just as well. For me

, it

was an easy decision for the mmost part.

take care,

[Guest guest]

Dear Robin,

I have seen Dr. Heffez (neurosurgeon) twice, and he is still doing diagnostics

to see if he feels that I can tolerate a second fusion w/laminectomy (had the

first fusion in 1999 at c-4 through c-6; 40% of c-5 was removed). ,

another list member was operated on by Dr. Heffez several months ago with good

results. I believe she was at a point with spinal cord impingement that surgery

was the only option left. I was at a similar point in 1999 when my first fusion

was done. Dr. Heffez, very familiar with EDS and its many attendant medical

issues (I also manifest POTS, IBS, osteoporosis, osteopenia, severe arthritis,

hypermobile joints, and several other things which debilitate me), is not yet

convinced that the benefits of another cervical spine surgery outweigh the

considerable risks for me. I know, though, that the time will come when the

surgery cannot be postponed or avoided any longer. I am impressed enough with

Dr. Heffez that not only have I flown twice from my home in northeast TX to

Chicago to see him, but if and when he recommends further surgical intervention,

I will go to Chicago just like did to have him to it. Dr. Heffez was also

highly recommended to me by Dr. Blair Grubb (of the Medical College of OH in

Toledo), who my sons and I see for treatment of our severe Post Orthostatic

Tachycardia Syndrome (which I believe also has). I do have a very good

orthopedic surgeon of the spine here in nearby Dallas who practices at Baylor

University Hospital who did my previous fusion. He did a very thorough job, and

Dr. Heffez has also said as much. I am making sure that I share any and all

information concerning my EDS, particularly my cervical spine issues with both

Dr. Heffez and my Dallas ortho (Dr. Craig Callewart) so that they can confer.

Dr. Callewart periodically sends me to the Baylor Pain Management Center for a

series of 3 cervical epidural injections spaced over about 8 weeks. He also

prescribes my daily pain meds and monitors them. Though Dr. Callewart and his

wonderful physician's assistant, Joe Nagey, were not familiar with EDS when they

first met me in 1998, they have been more than accommodating and willing to

listen and learn and read along with me. If you want the phone #'s for any or

all of these very good drs, please let me know and I will be happy to share them

with you if you'll email me privately. I don't recall if you've posted anything

about having autonomic nervous system dysfunction (POTS, Neurocardiogenic

Syncope, sleep disorders, etc.), but many of us EDSer's manifest these things to

some degree. I firmly believe there is no better qualified cardiac

electrophysiologist on this planet (bar none) than Dr. Blair Grubb in Toledo.

He is utterly familiar with EDS as well, and one of the most compassionate

physicians I've ever met (and that's saying something). My sons and I see Dr.

Grubb every 6 months, and it's well worth the trip for us. Hope I've helped

some. I don't think I had to have a referral for Dr. Heffez, though Dr. Grubb

did mention and recommend him to me.

~LoneStarRose~

(~~)