Lipoma/Neurosurgeon Update (tethered cord Q's)
realisticdreams
member
So, the email I got said that we needed to follow up with neurosurgery & that Peyton's neuro was on maternity leave and that her spinal MRI showed a lipoma. '
I knew that generally a lipoma was nothing, but the fact that it was on/in her spine and had the word tumor in it, did not make me warm and cozy.
So we get to Arlington yesterday morning, and speak with the NP/PA first, and she asks questions and gathers that Peyton has 5/5 of the things that children with spinal tethered cords can have.
recurrent UTI's (kidney reflux ruled out), diarrhea/constipation alternating for no reason, tippy toe walking, sacral dimple & inverted foot/feet.
So in my head i'm kind of flipping out a little bit,i thought we were meeting because of a lipoma when really it's because the radiologist thought the lipoma was indicative of a tethered cord.
Dr. comes in, looks at her tethered cord..says oh i've already reviewed this MRI they thought she had a tethered cord, but I don't think so.
He shows us ONE image from the MRI, where her cord is not even clearly defined and tells us where it's supposed to end and says she is within normal limits & to have a good day. Oh and not to forget to read his huge publication on tethered cords.
They didn't even ask if we had any questions and that was it. I was so out of it I left a bottle & paci in the room lol.
So now, of course, as I tend to over analyze everything i'm doing research online and I'm second guessing his "don't worry about it attitude"
This is the 2nd neurosurgeon we've seen so I know that they are kind of abrupt and not good with bedside manner, they cut open babies brains, I get it. (we had to see one for her plagio/brachy in WV)
He said that 10 years ago he WOULD have operated on Peyton but from his experience we wouldn't get anything fixed except the toe walking.
I asked Dh to recap for me what he said in the office and he said that he was saying her's wasn't quite right but not enough to worry about.
He also said these babies act like they are in pain, etc. When she sleeps she cries ALL night in her sleep & wakes up multiple times. In fact I can count on 1 hand the number of times she's slept through the night & I'm sure it's less than 3. She wakes up between 10-20 times, and I notice that if I do give her tylenol/motrin before bed she sleeps a few hours straight atleast. (we do have a sleep study scheduled, she also has night terrors & has started sleep walking!)
I want a copy of the report but I mean, he's a good dr...he works for Children's Hospital out of DC I just feel like he didn't even review her whole MRI and brushed us off.
I know Dh is thinking i'm crazy right now not trusting the dr's opinion but I want to know FOR SURE.
Re: Lipoma/Neurosurgeon Update (tethered cord Q's)
Ask for a copy of the report. It would be good to have for future reference, anyways.
My sister had jaw surgery done by a guy who taught the surgery and worked at Cleve Clinic. He kept no records of her progress after the surgery, and she ended up having to have another doctor rebreak her jaw and go through the whole recovery process again. The second doctor used much better methods, too (The first surgeon wired her shut for 6 weeks, while the second one had her use special rubber bands instead and had her in PT, too).
Even good hospitals pick up a few duds every now and then. And even good doctors have bad days. Don't disregard your feelings.
Hang in there!
Why the heck would a Dr give you a handout on tethered cord if your DC doesn't have it? That sounds wack to me. I would get another opinion. Especially since she is having all of the symptoms and seems to be in discomfort.
Another option is to request a copy of her medical record. You should be able to at least get a copy of the MRI and it's radiologist's report from the facility that preformed it.
Also, when they send you the "How was your visit" questionaire you need to put a copy of this post in it. You left with way more questions than answers. For that facility, which is highly regarded, this is unacceptable IMO.
thanks, you too.
Dh says he gave us the report to prove that he has a vast knowledge on the subject, etc. Dh doesn't care that I want a second opinion, but he doesn't get why i'm confused about what the dr. said. I told him because we went in there thinking she had a lipoma (and she does, which wasnt really even't discussed, except, "oh look there you can see the chunk of fat at the end of her cord") but then they started talking about tethered spinal cord & my brain couldn't process it.
It's all a blur!
I have an appt feb 11th with a dr from VCU who comes to Fredericksburg (since i'm on bedrest I don't want to be driving all over the East Coast right now to find a good dr). However, this dr & another from VCU both wrote the article with the Dr I saw from Arlington, lol. Soooo hopefully they're not all BFF's and I don't look like a jerk.
DD's cord was tethered at L4 - L5 and she also had a large amount of fat (they never termed it a lipoma though). He told me on a scale of 1 to 10 that she was a 1 but that her cord needed to be snipped because as she grew the pressure would cause her to lose all function below the waist. He recommended the surgery be done now so she wouldn't remember it. The only "symptom" she had was the dimple, otherwise she was moving just fine and had no UTI's, etc.
I hope the second opinion is objective and gives you peace of mind
ETA: the scale was 1 being the least complicated and 10 the most. At 10 there is a fistula with all the nerves wrapped together and they basically can't do anything.
I'm a little late in seeing this post, but my DD was detethered (lipomyleomeningicle) at 17 months. She cried ALL the time as a baby. I have no doubt that she was in pain for the 17 months prior to surgery.
Have you had a urodynamics test done?