advice?

[Guest guest]

Hello,

I am now six months post-op and am looking for guidance. I am jumping through

hoops trying to get appropriate medical care. The problem is that there are two

Pediatric Neurosurgeons where I live. One who will not see adult patients and

the other who has a policy of not attending to patients that he did not operate.

I had my surgery out-of-state when I had Kaiser insurance which I was paying via

COBRA. Therefore, I cannot see the drs who performed my surgery.

I was finally seen by the doctor whose policy is not to attend to patients who

he did not perform surgery. He cannot (or will not) advise me to what to expect

in my recovery. He would not prescribe any medication or extend my disabled

parking permit. He tells me this must be done through primary care. Therefore,

I am seeking a primary for further care.

My concern is this: I don't even know what questions to ask. And if I cannot

get advice from a doctor who is knowledgeable about spina bifida conditions, how

am I going to get medical advice from someone who is not?

I am not even close to my pre-surgery state. I cannot walk for more than 10 to

15 minutes without severe muscle fatigue. My perineum is still numb from the

surgery. My legs/feet are significantly number than they were pre-op. I have

constant pain level 2-3, like having sore muscles all the time. This discomfort

is present all the time but not necessarily interfering with my abilities and

adls (though I delegate unloading the dishwasher and laundry to my children as

these tasks and occasionally needing assistance with my shoes from my husband).

I do have shooting burning pain down my legs and occasionally in my feet –

though I had this before, it is more constant. My sacrum hurts most of the

time, especially after sitting. But my legs aren't strong enough to keep me

standing, leaving me to suffer through my work day. Is this all to be expected?

What medications should I discuss with my new primary care physicians? Should I

get fmla documentation to cut back my work hours so I am not " pushing through

the pain " ? What on-going treatment options should I look into? In addition, I

am having troubles with bowel movements. I am very dependent on fiber

supplementation to help bulk and move my bowels. I do not have the muscle

strength or proper sensation to push smaller movements out and am straining a

lot. I am managing this through psyllium fiber and am not constipated.

Any insight for questions I should ask my new primary care physician is

appreciated. I think it is definitely time to consider medication.

Thank you, Carol