Who to believe TCI or local radiologist? Help please!

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Who to believe TCI or local radiologist? Help please!

Postby Photo Mom » Fri Feb 15, 2008 11:44 pm

I was able to get Dr. B at TCI to look at my 10 year old son's MRI results b/c my niece is his patient. His conclusion had various elements but basically was Tethered Cord Occult Variant w/ Syrinx and hypertonic neurogenic bladder. We have an appointment there on March 31.

Tonight we spoke personally with the radiologist who read the same MRI's back in September and gave my son a clean bill of health. He specifically went through everything Dr. B had set out and said he didn't see a tethered cord, he sees what he might be talking about on the syrinx, but it doesn't show up in all the views so it isn't a syrinx and that the bladder just shows that it is full of urine. He disagrees with Dr. B completely.

He seemed very confident. Now my husband is expressing confidence in this doctor and questioning the need to even go to TCI. He is expressing confidence in this doctor as a radiologist vs. Dr. B as a neurosurgeon.

My niece's tethered cord was missed by 2 sets of neurosurgeons and/or radiologists before she went to TCI resulting in a 2nd decompression for Chiari and Tethered Cord surgery after her 1st decompression and 2 separate shunt surgeries. So, my confidence is in TCI. My son doesn't have Chiari, but I'm still not persuaded by this radiologist.

Can anyone share their experiences with regard to general pediatric neurosurgeons and radiologists vs. the more well known Chiari & associated conditions doctors like TCI?
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Postby youngwife » Sat Feb 16, 2008 1:14 am

Our experience was that we saw many NS, NL, and had many radiologists read our daughter's films, but ONLY an expert new what to look for.

It was very hard to trust this one voice when there were so many others that were so adamant that she did not have chiari.

One option you have is to see if another chiari expert in the country will review your child's films and see if they see the same thing??

We covered our decision with a ton of prayers because we knew that only the Lord could know which way was up or down. :wink:
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Postby angie7 » Sat Feb 16, 2008 9:23 am

Without a doubt, TCI. They are true experts, know exactly what to look for and have seen these problems thousands of times. I would 100% trust TCI over anyone else.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby jordysdad » Sat Feb 16, 2008 12:07 pm

Photo Mom,

Your post hits close to home for me as we found ourselves in a very similar situation with our 11yo daughter. I'm not comfortable making recommendations because as you know this is such an important and personal decision. I just thought I would share our experience with you, to let you know you are not alone.

Our daughter was diagnosed late last year with cm(16mm) and sm(c2-t11). Highly respected NS #1 recommended PFD surgery, and it was scheduled for about 2 months out. We sought out a second opinion from highly respected NS#2, (a recognized expert in this field). Obviously we were hoping NS#2 would tell us surgery wouldn't be required, at least not now, unfortunately that was not the case. We were told our daughter needed a PFD and sugery for Occult Tethered cord.

Talk about a kick to the groin! Not only do we learn about these horrible things going on inside our little girl, now we find out that the Neurosurgical community is not even on the same page with all this stuff. In short, two high school educated parents, (one barely at that:)), are left to make the decission of which NS is correct. In essence, we have to tell one of these brilliant men who have devoted their lives to helping people that we believe they are wrong. How is this possible?

I spent literally hundreds of hours on the internet trying and trying to find the answer. One day at work, it hit me like a ton of bricks. If the Neurosurgeons don't agree how can we ever expect to know for sure. I realized then that as much as we love our daughter, it is not for us to try to diagnose her or to pick the surgical remedy to help her. It IS our responsibility to pick the Neurosurgeon(s) who will treat her.

Perhaps this was a cop out on our part, but when it came to picking the NS instead of the diagnosis, the choice became clear. (Trust me, it would have been easier to choose the diagnosis, one surgery sounds much better than two.)

I just realized how long this is getting, sorry. Perhaps our experience may help in some small way, if nothing more than to let you know you are not alone.

Joe
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diagnosis

Postby Sara » Sat Feb 16, 2008 2:00 pm

It is important to note that occult tethered cord is NOT a diagnosis that is made by films. Occult means HIDDEN, not seen. It can only be diagnosed by symptoms. If a doctor is telling you that you show signs of occult tethered cord on a film, I would ask what those are. How was the dx of hypertronic bladder made? Was a urologist involved? Was urodynamic studies preformed?

Occult tethered cord is seen as a controversial diagnosis by many. When my own daughter was diagnosed with it 8 years ago- you had to have lots of supporting evidence which did not include questionnaires. It involved objective findings such as abnormal urodynamic studies and a progression of her syrinx over time. I would encourage you to perform a literature search on pubmed. Here is one article to get you started:
http://www.ncbi.nlm.nih.gov/pubmed/1796 ... d_RVDocSum

Sara
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Postby lalaswihart » Sun Feb 17, 2008 5:18 pm

I would say trust DR.B ...here is why..and a brief of what we went through.

My sweet daughter who is now 8yrs old started having very bad headaches, tummy pain, bed wetting and many other problems at age 6, my Pedi. ordered a CT b/c headaches where waking her up at night, on CT it showed CM1, so on to nero, MRI showed 10mm herniation, SM from C1 to T12 taking up about 50% of spine, Found BEST and Head of Pedi NS at local BEST Childrens hospital( he saved my nieghbors sons life) He says need to do a symple surgery remove a little bone and her C1 should be fine, she was not kept getting worse ends up waiting 4 months and did MRI SM now taking up 75% of spinal cord and herniation 16mm and now she had scolliosis needs another surgery and we should not wait any longer than 1 week, [i]we at this point had an appt. for TCI about 4 weeks out[i], But still knew he was a great doctor and maybe finally he belived that she was worse and should do sometime.
She had the second Decomp. surgery, and was even worse!!! call TCI and they moved appt. up so three weeks after 2nd decomp we were head to New York, and found out all the news we feared and did not want, but we finally had anwsers.

She had a retro-flex adontoid bone, she had no flow she was not decompressed, her syrinx was larger, she had an occult tether cord, Her brain stem was VERY elongated, and to top it off she had something called Elhers-Danlos ......OUCH!!!

How could she not be decompressed she had just had surgery 3 weeks earlier???? He said b/c she has an occult tether cord we she was decompressed it just made it worse b/c it gave it room to pull more and for the syrinx to get larger.

So we scheduled her surgeries, 1st tether cord and then one month later 2nd revision of Decomp.

IT WORKED!!!!!! :D

She is able to color and ride a bike again, she no longer wets the bed, and as of the 3 month MRI her SM is almost gone DR.B was really excited about this!

I am not saying that our local NS is bad or not good by any means...I am just saying he is not a good Chiari Dr., and with this being a pretty rare thing you need to go to the one that only does CHIARI,

If a child had cancer we would seek a doctor, the best doctor who only dealt with the type of cancer he or she had....Why would we not seek out the doctor or doctors who only deal with Chiari.

I wish you all the best and will pray for understanding and direction for you, my heart aches when i read all of the stories, Know you are not alone and we will cover you with prayers.

So I was so long winded, I hope this helps :wink:

Ps. we head back for my twins Tether Cord surgery March 15th
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
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Radiologist vs Dr. B

Postby Photo Dad » Tue Feb 19, 2008 11:47 am

It is so great to have this forum to research and here of others' experiences. Here is a different and more reasonable perspective than Photo Mom's about our 10 yr old son's diagnosis by Dr. B. Firstly, Dr. B has not seen my son-only his MRI. From the images that our local radiologist reviewed his diagnosis was the following:

Normal post fossa
Tonsils are within the skull
Brainstem appears elongated (requiring morpho confirmation)
Thick clivus
Slit-like syrinx in the distal Thoracic segments
Conus at top 1/3 of L1
Postlat packing of cauda equina roots
Large bladder ++

Conclusion
Tethered Cord Syndrome, occult variant, with hypotonic neurogenic bladder

The radiologist addressed each of these items for us.
He said the thick clivus was not so and in fact only an opinion.
The elongated brainstem was not so and in fact there is a special measurement used to make sure and that his is perfect and absolutely normal compared to the thousands of others he has looked at. "Morpho confirmation" doesn't show up on google for some reason.
The slit-like syrinx is never diagnosed with 1 view because it could easily be a shadow or something else and that it absolutely did not show up in any other view and that it would have if it existed.
The conus was exactly where it should be.
The postlat packing of cauda equina roots is common and not a problem whatsoever.
The large bladder was meaningless because it was full and completely normal-again compared to thousands of others. He also said that any bladder issues such as hypotonic neurogenic bladder absolutely could not be diagnosed from an image but rather it needed a specialist, ie a urologist, to do a special study to determine this.

Additionally, he was NOT diagnosed with Chiari-Dr. B's specialty. There is a huge amount of debate about the occult variant of tethered chord among the finest neurosurgeons in the country, whether or not it actually exists, is a problem and whether surgery is beneficial or not (by those that say it does exist), etc. My son does NOT have any of the symptoms that most of the Posters have discussed. He has Tourette Syndrome and on occasion an uncommon bladder tic that behaves just like his occasional spitting tic-it only shows up once in a while and in his case is defined as after he empties his bladder he may stop back by the bathroom a few times in a short period of time and release a few drops. He may also release a tiny bit in his underwear but has only done this a few times and not in a long time. This does not qualify as a symptom. He has had on occasion some phantom leg pain but only a few times and because he is so ruggedly athletic and active he has quite a few bruises on both legs at any given time. This is a symptom of playing multiple sports year round. He has complained of arm pain a couple of times but who hasn't.

Nothing here is chronic other than his tics. I am going to have a world-renowned pediatric radiological specialist (he writes textbooks) review his MRI before I take him to NY and subject him to that process. That is not only reasonable but smart-especially in this case. He does not have back-pain, headaches, bladder problems or any other combination of symptons I don't question that Dr. B has been wonderful for each of you-only that my son has none of the terrible issues that you have dealt with. My niece having gone through such a horrible experience is awful but to me it does not at all mean that my son has any of the same issues.
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Postby pearland1 » Wed Feb 20, 2008 9:44 am

With any condition without much research, I would definitely trust the doctors/facilities with the most experience. With your choice, that would be TCI. Our first doctor (a chief pediatric neurosurgeon in Houston) had only seen 2 chiari malformations in one year. A specialized doctor or facility can see as many as one per day. Go with experience.
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