Spina bifida with lipoma

[Weichoong83]

Hi , first I would like said sorry on my English . We are Chinese from Malaysia . I had my twins baby born last 11 may 2011 , one of my twins born baby girl born with spina bifida . Last month we go for MRI , found out it was lipoma are pulling spina cord . We had visit for 4 neuro surgeon , 2 said need to do surgery as soon as posible before it got symptom and 2 said that need to wait for the symptom only go for surgery . We need to know which better for my kid and what is the effect for this surgery . Now my baby can walk and as normal baby as her sister . Any one here with this experience long time ago and got a good result and worst result . We just need some idea and standby what will going to happens and the fact we will face after the surgery . Please advices us .

Thanks slot in advance .

[Lifeisgood]

Congratulations on your little girls! And welcome to the forum!

There are indeed different schools of thought on this issue. Here in the USA, I believe that for a first time detethering, it is recommended to do it before neurological symptoms arise. However, there are still some doctors who recommend waiting until kids become symptomatic.

Once, a child has already had their first detethering, doctors will typically not perform another one unless the child has symptoms. (Note: MRI scans will typically continue to show that your child's spine is tethered even after the surgery - so that is why they will wait until symptoms come before doing additional surgery).

I am 32 years old. I was not diagnosed with SB until I was 9, and my spine was also tethered by a lipoma. I had my surgery then. My symptoms were increasing numbness and weakness in my legs and bladder issues. The goal of detethering surgery is not to repair issues that have occured, but to prevent further issues from happening (although occassionally people do have some improvement in symptoms - I did).

It is a difficult decision to make. There is actually another thread on this forum where others are discussing this very topic. I will try to find it and post the link for you to read. However, one of the most important things is to make sure that you trust and feel confident in the doctor that you choose to treat your daughter and that you can ask all of the questions that you need to and talk with openly. If possible, find a neurosurgeon who specifically has a lot of experience with Spina Bifida and tethered cord due to lipoma. The lipoma makes it more of a complicated surgery that a typical detethering.
So experience with this particular condition is important.

Another thing that you should consider doing if you have not already done so, is to bring your daughter to a urologist, even if it appears that she is not having any bladder or kidney problems. Many times a kid with SB may appear not to have bladder issues, but they are only apparent with special testing that the urologist can do. This is very important to make sure that her bladder and kidneys stay healthy.

This is a difficult decision, I am sure. But we are here for you! Ask any question you may have and someone will be sure to answer. Welcome!

[Lifeisgood]

Here is the link. Good luck!
http://www.spinabifidaconnection.com/showthread.php?t=3640&highlight=lipoma

[jveprek]

We were told it is best to wait, but I know that many do it before anything happens. Madi is tethered (aren't all kiddos with SB?) but since it's not problematic yet, they don't want to do anything yet.

[Lifeisgood]

We were told it is best to wait, but I know that many do it before anything happens. Madi is tethered (aren't all kiddos with SB?) but since it's not problematic yet, they don't want to do anything yet.

Does Madi have a lipoma? That may be an important distinguishment that could impact a neurosurgeon's advice. Just guessing though. Not all kids who are tethered are tethered from a lipoma, and lipoma makes it more complicated from a detethering standpoint.

[dahliafaolan]

I was tethered pretty much from birth, but I was made to wait. I didn't have my detethering surgery done until I was 7 years old and I was having bladder spasms so bad everyday that I would have to be taken out of class so I could scream and not disturb everyone. This was despite being on the highest dosage they could give me of Ditropan, which was the only medicine available for bladder spasms at the time. I also had a lipoma when I was born. In fact, I have five on my spinal cord at birth that were removed when I had my spinal closure surgery. It was found during my detethering that I had tethered so badly that my spinal cord had ceased to pulse. As soon as he released it from whatever was holding it up, it started to pulse immediately. For myself, I believe I am tethered again right now, but the symptoms are bearable at this point in time so I refuse to have the surgery. Then again, I have a broken screw somewhere in my back from my rods due to scoliosis and I refuse to have surgery to have it removed. I look at it this way, it's not causing any pain and from the doctor's explanation of its location, it's not causing me any neurological issues so I'm not going under the knife for something that's not hurting me.

[Weichoong83]

We decided to have surgery at this coming Saturday for my little baby girl. Hope everything going to be fine !:)

[Betsybell]

Praying that all will go well for your daughter.

Betsy

[n3rdchik]

Best of luck to you and your baby girl!

My son had a very large lipoma at birth and he had surgery at 6 months old and healed remarkably well.

Let us know how you are doing?

[lovemykidos]

first off congratulations on your twins! I too have twins,mine were born Oct 26th of 2010. My daughter too was diagnosed as one of your twins was. She is 7 months and 3wks now, she will be having her first surgery next month. From what my doctors here have told me, it is better to do the surgery now, rather than later, before the problems arise. Because what ever bladder, or bowel issues that arise now will not be able to fix after they happen. So I feel rather than wait to see if she ends up with these problems, it was a better choice for us to detether now so we can spare her any other difficulties. I truly believe if it gets done sooner, she has a better chance at notseeing different from her twin sister.Hope this bit of info helps, and I wish you the best of luck!

[Weichoong83]

Having surgery right now ! 4 hour to go and thanks all the regard from you all . Hope everything goes well !

[Weichoong83]

Thanks god. Is done and all thing goes well .

[Dodger67]

I'm happy for you! :happy065:
Hope the recovery goes well too.

[Betsybell]

I'm glad to hear that everything went well!

Betsy

[n3rdchik]

I am soooo happy to hear things went well. Speedy recovery!

[Weichoong83]

hi all, after a weeks recovery , my little girl consider fully recover , SHE CAN WALK VERY WELL AND VERY ACTIVE RIGHT NOW! thanks to my Doctor , thanks to all of you support ! :)

during surgery , doctor are test all the function like leg , urine ,bower function ,and told us that all the function are still in very good condition and baby can glow as normal .

attach with to photo before and after surgery !

[Lifeisgood]

I am so glad to hear that she is doing so well!!! Keep us posted on her recovery. :) I hope that you are able to rest easy now that her surgery is behind her now.

[Dodger67]

Very happy that it went well! :happy065:

[miefeong]

Hi , first I would like said sorry on my English . We are Chinese from Malaysia . I had my twins baby born last 11 may 2011 , one of my twins born baby girl born with spina bifida . Last month we go for MRI , found out it was lipoma are pulling spina cord . We had visit for 4 neuro surgeon , 2 said need to do surgery as soon as posible before it got symptom and 2 said that need to wait for the symptom only go for surgery . We need to know which better for my kid and what is the effect for this surgery . Now my baby can walk and as normal baby as her sister . Any one here with this experience long time ago and got a good result and worst result . We just need some idea and standby what will going to happens and the fact we will face after the surgery . Please advices us .

Thanks slot in advance .
hi wei choong, i m from malaysia too and my daughter 6 months is diagnosed a lipomeningocele at S1/L5 since birth. can i know which hospital you underwent for the surgery and which doc? how is ur daughter now? hope she getting recover and fine.
i had consulted a doc and he is advised me not to do the surgery until the symptom is come. I am very confusing coz when symptom is come and surgery is done, is there any side effect after the surgery?

[Weichoong83]

did you received my PM and all the contact i did send to you ?

[Dodger67]

Hi Weichoong
How is your daughter doing?
It has been a long time since we last heard from you.