Tethered Cord Patients: Ever have a bulge at your surgical site??

[youngwife]

Hey all!  I will apologize in advance for the lengthiness, and I have been wanting to sit down and write a post about Rachael's recent visit with a neurosurgeon.  In the event that a patient or potential patient of this doctor should read this, I will refrain from posting this doctor's name.  

Well, since I can't say anything good about her, and I probably shouldn't say anything at all....but, oh my word!  She told Rachael that she just needed to exercise more, get injections, and lose weight!!  Oh yeah!  And Rachael didn't need to turn into one of those "junkies" that she sees all the time...so NO PAIN MEDICATIONS whatsoever.  She wouldn't even prescribe Topomax (which she felt could be helpful) because she didn't want to have to follow up with Rachael on it.  She said some one else could do that! :shock:   So, basically, we wasted one of Rachael's last doctor visits until July! :|  It was not a good day.

So, some of you may remember the sudden, intense back pain that Rachael has started having.  We were so perplexed when this started, and are even more so now that it is progressively getting worse.  Now, Rachael also has shooting pain down her legs.  She can't sit without pain, she can't pick up her leg with out pain, she can't bend with out pain.  (Oh, and the neurosurgeon said it was just myofacial pain!)  

Recently, Rachael has had more episodes of this stabbing pain.  It just hits suddenly, out of the blue.  She thinks it is when she moves the wrong way or do something that causes this, but we are not exactly sure what brings this on.  But during and after these episodes (that feel like ripping and pulling, and stabbing, and all kinds of painful things), she has a [b]bulge at her scar! [/b]  And it is exactly where her pain originates from!  Then, hours later, it will go down and look mostly normal.

I have attempted to attach a photo, but I know it's small and not very clear...sorry.

Any one else ever have this?  

This area of her back hurts during:

laughing
coughing
crying
raising her arms
going to the bathroom
squatting
bending
picking up her legs
putting on her shoes
putting on her socks
laying the wrong way
sitting the wrong way

I am really concerned about this, and at a loss.  I don't feel we can go back to the neurosurgeon that she saw, and don't know if Rachael has any more visits to see another doctor.  :x

Any thoughts I'd appreciate!

Blessings to you all,

Rebecca

[selmaS]

  I felt the same my 2nd week of Topamax....u do get weird side effects that do subside after u get past that point .....I am not sure it is really helping me....but, for now I am still on it.


Hope u get past the side effects

    "selma"

[youngwife]

Rachael has state funded insurance.  The do NOT make exceptions, based on what a representative told me, unless you are out of state and have an emergency.

[selmaS]

  I agree, but not willing to be charged with slander or defamation....all they have to do is search their own name and boom, they will find the link.....and who ever posted it...and it is not good for MH either.

PM's will have to be the way to go...mayb a code word  on the threads so they know something is up and they need to PM someone for more info????

[pamk5]

I know Selma... but it sounds so good to be able to call some of them out!  They desperately need it.  

[pamk5]

Have you tried contacting the insurance company and telling them she has a rare condition and ask for an exception?  I had to do that and it worked!  They have approved my doc in network for me.  I appealed to their pocketbook... the risk of complications would be alot less if I was with a doc who knew this disease.

[selmaS]

  I will PM u the info.....

[youngwife]

Hey, Selma.  I did talk to Wendi, and she really couldn't help a ton, though she really wanted to be able to.

Whom else do you have!?!  :)

Rebecca

[selmaS]

Hi Rebecca, I am so sorry to see Rachel is no better.....I have not had this surgery as of yet and hope to post pone it as long as possible.....only bcuz I can deal with my issues at hand for now....

May I ask, did u talk with Wendi?....I know of one other person......let me know....

   "selma"

[selmaS]

  re: a bad Drs thread.,..since this is a public forum, we would face liable ...so, if u have info regarding a dr, offer info via a PM...that is the best suggestion other than naming names on the public forum.

I hope u all understand, and it is really the best way to go about this, and y we stress to much for members to make sure that they indeed have a true chiari specialist.

  "selma"

[Spaceystac]

Sorry to hear you both are going through all of this! I am no expert, but is sounds to my that she has scar tissue re-tethering her somehow, or they missed some while they were in there? I am not sure but the scar tissue sounds like it is going to get worse, if it is swelling like that, it couldnt be a good thing. I hope she can see a different specialist soon!  Good luck to you both!  Stacey

[youngwife]

Thank you, Pam.  Right now, Rachael does not have a Chiari specialist.  Her insurance will not let us travel out of state, and we have no one here. :(

I appreciate your compassion and understanding.  This is so very hard! :(

Rebecca

[pamk5]

It sounds like it was a bad day.  I just dont understand what makes some of these docs so dismissive of us.  I will say again when they waste our time they should have to pay us.  Does Rachel have a Chiari specialist?  It sounds as though she needs to see one.  It certainly doesnt sound as though this doc was one.  

My son is having issues with his back as well.  I have recently found out that the Zoloft that I took when I was pregnant may have affected his spinal cord development. Back then it was considered safe.  I know in the past that when he has had back pain and spasms they didnt want to give him anything either.... I just had to go to another doctor till I got him some relief.  

I know alot of us want to not mention the names of the bad doctors but maybe we should make a list and save some time for those that are searching for answers.  Maybe it is time!  We will let Selma make that call and she can start the thread... I have a few to add as well.  

I am sorry she is going thru all this and I hope you do get her some relief.

Pam