Re: Tethered Cord/Lipoma/?

Posted By Heather on May 03, 1999 at 09:46:21
My son was born in December of 97 with a few defects, partially related to the VATER syndrome.  He has imperforate anus, which has been corrected through three surgeries, cross-fused kidneys, and what was suspected to be a tethered spinal cord.  Through a series of MRI's, this diagnosis was changed to a lipoma, then to a fatty tissue deposit at the base of the spine.  My first question is what the name of the fatty tissue deposit is - his neurosurgeon mentioned it at our appt last Friday, but I didn't get it written down.  The doctor also told me that he will most likely have to have surgery to separate the tissue, so that the nerves won't be damaged as he gets older and more active.  My second question is this - how long before the damage starts to be incurred?  My son is already extremely active - walking, running, climbing.  Do we need to have this surgery done quickly to prevent damage?  His doctor has recommended that we have a uro-dynamics study done in June to check bladder function.  Then another MRI in September and we'll go from there.  Is this the standard practice?  I just want to make sure that waiting is not going to cause any permanent damage.  Also, what is the prognosis after a surgery such as this?  Sorry this post is so long.  I was kind of in shock at the appt, not expecting to hear about surgery, and did not ask enough questions.  By the way, my son's doctor is Hugh O'Donnell, at AI Dupont Hospital for Children.
Thank you in advance for your reply and advice.   Heather.

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on May 04, 1999 at 08:40:29
Dear Heather:
I am very pleased to hear that your son seems to be doing so well.  That is great.  It sounds like your son is functioning very well with his lower extremities.  I think I would agree with the neurosurgeon's suggestion of watching and repeating the MRI in september.  Most surgeons will wait for awhile even for a tethered cord.  So, even though it sounds like one ought to operate sooner than later, I would suggest you follow the advice of the neurosurgeon.  It is good news that it is only a fat deposit.  Lipomas, although benign do grow, albeit slowing.  How is your son's anal function? I hope that his urodynamic test will be fine.  It is good that you are trying to stay on top of things.  Keep it up, your son is very lucky.
Sincerely,
CCF Neuro[P] MD

[Heather__0__0]

Posted By Heather on May 04, 1999 at 09:14:33
Thank you for the response.  It makes me feel better to have a second opinion of the procedure.  Dr. O'Donnell's office called yesterday to tell me that they have scheduled the urodynamic study for next Thursday, as well as a renal ultrasound and a VCUG. ( I don't think I mentioned that Kyle has cross-fused kidneys as well).  I was kind of worried that they wanted to do the tests so soon, but they told me they just want to do them now so they can get the results before our appt with the urologist in June.
Kyle's anal functions seen to be okay, although he still has bm's quite frequently and the rash has never quite gone away.  But it's getting better.  His surgeon seems to be confident that he will have near-perfect bowel control.  It's just a matter of wait and see.
Thank you again for the response.

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on May 04, 1999 at 10:29:39
Dear Heather:
You are welcome.
Sincerely,
CCF Neuro[P] MD

[Keli-DAdeta]

Posted By Kelli D'Addetta on May 19, 1999 at 14:44:18
I am a 27 year old female.  I had a fatty tissue lipoma removed from my spine at 6 months.  The doctor was only able to partially remove the lipoma.  He left part of the tumor.  I have a noticable lump on the outside of my spine that would remain with me always.  He told my parents he was in a hard put position and not able to take it all.  My parents were told by the surgeon that I had a birth defect that occurs in 1 out of 1500 babies.  No name was ever given to it.  Growing up the only problem I had, as a result was with my bladder.  As I started to grow up and develop I noticed that my right leg was much bigger and stronger than the left leg.  Since I was a very active child the leg was kept strong.  Only recently within the last 5-10 years I have become less active.  I have now started favoring the right leg and have begun to limp.  The other recent development that I have noticed is that I started to have what the doctor called "anxiety attacks" - this is very strange for me since I am the type of person who worries about nothing.  Only recently has this changed.  I decided to see a doctor.  I have gone to see two excellent neurosurgeons in the last month.  No one is really able to give me an exact diagnosis.  I was told spina bifida, tethered cord, mylomenigocele (spelling)....I would really like to know exact what I do have??  What is the cause of this?  I was even told that if I have children I could pass this on to them.
Any suggestions.

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on May 20, 1999 at 17:15:10
Dear Kelly:
Sorry to hear about your condition.  Without seeing the MRI and path reports, it is really difficult to give you a diagnosis and prognosis.  Just some general facts first.  A tethered cord, if very mild is a possibility but in my opinion unlikely.  Although you describe a limp and having one leg larger than the other, you would likely have more deficits such as bowel, bladder, and lower extremity problems than you describe.  Although, if the tethered cord was minor, it is a possibility but I am not too convinced by what you are telling me.  In the spectrum of congenital malformations with tethered cord is mylomenigocele and spina bifida.  These are usually manifest worse symptoms than tethered cord so I wouldn't expect these to be present in your case. Certainly a lipoma is a possibility.  If not completely removed, it would remain and even grow (although very slowly).  Most of the cases of all of the above are congenital, that is they just happen and are not genetic.  There are types of syndromes that would include these but you would have other symptoms of that particular syndrome, which I am not hearing.  My guess is that your problem is congenital and not genetic.
There must be a pathology report that you could find that would give you the diagnosis.  I would request your records and find out what the pathologist had to say.
I hope that you find out the correct diagnosis.
Sincerely,
CCF Neuro[P] MD  

[Elizabeth__0__0]

Posted By Elizabeth on June 03, 1999 at 17:06:10
Dear Doctor, Just a short(I hope),note on Lipomas! I have multiple lipomas throughout my system; including, within my muscles which cause pain!! I have had a biopsy done; lipoma..Could you tell me why I am developing lipomas throughout my system? No doctor can tell me this; just that it is a benign condition and not to worry..However, pain,lumpy arms and legs are a concern..to me! They do cause problems when sitting for a long time ie on a plane, doctors waiting room, etc...produces cramping as they are within my muscles.. Why and what can I do about them..? Is it caused by cholesterol or a high fat diet? Try not to eat high fat as I do have high cholesterol periodically; from 190 to 300 with hdl over 10yrs/HDL=45..Could this chl problem be causing these dumb lipomas to develop? I know I said this would be a short note but...sorry! Elizabeth

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 07, 1999 at 17:23:39
Dear Elizabeth:
Sorry to hear about your lipomas.  As you know basically lipomas are fat, and carry little chance for turning into malignancies.  They can grow and often will have affects due to impinging on an important muscle, artery, or other structure.  From my understanding the only way to rid the body of a lipoma is surgery.  They can occur in groups throughout the body or as a single entity.  I am not sure how to decrease their growth.  
I am sorry that I can't give you more information.
Sincerely,
CCF Neuro[P] MD

[Christine-R]

Posted By Christine R. on July 25, 1999 at 16:50:34
My son was 6 years old when he had a laminectomy of L5-S1 and his tethered cord u un-tethered at the Hospital for Sick Children in Toronto, Ontario.  He has been symptom free for 10 years other than having one leg and foot a little larger than the other.  Last week I noticed that one hip was a little higher than the other.  I don't know if this is a leg length discrepancy or if his cord has re-tethered.  Anyone out there with some suggestions for me or experience with this?
Thanks,
Chris, Ontario, Canada










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