Has your child had the spinal surgery for their syringomyelia and if so, does their back STILL hurt?

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Ranger - posted on 04/05/2014

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Hi, I have syringomyelia and chiari. I had spinal surgery in 2006, still have issues like back pain, weakness and headache. I tried TCM(massage, herbal medicine, acupuncture) in Beijing, china. Now, I feel better and can back to school again.

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Depending on your location I can recommend several places to take your daughter to for a second opinion. I have heard MANY good things about Children's Hospital of Philadelphia, there is also a good doctor in San Diego, and Orlando - I can get the info for you depending on how far she is willing to travel.

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Heather - posted on 04/08/2015

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My 7 year old son has been recently experiencing numbness in his leg and foot. This was causing him to fall. Last spring he was having falling incidents and was diagnosed with drop seizures. This time a MRI wa ordered and a syrinx was discovered at T4-T8. Our first neurosurgeon does not feel that anything needs to be done at this time as it appears idiopathic. Although my concern is that he is having symptoms-everything you read says this can eventually lead to permanent nerve damage if left untreated. I would love any thoughts or ideas? Did you have to limit your child's activity level due to the syrinx?

Magicmomi - posted on 05/24/2013

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What is the doctor's name in Orlando. She did have tethered cord surgery performed by Dr. Trumble. He was excellent. However, we need a neurologist now to deal with her symptoms. Thank you so much.
June

Magicmomi - posted on 05/07/2013

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My granddaughter is 7 and had spinal surgery for a tethered cord in 2012. She still has the syrinx in the lower back. She has issues with leg pain, back pain, headaches, vomiting and constant urinations. The doctors think that it's no big deal even though she has sm. Are we crazy thinking that she still has issues from sm?

Jean - posted on 02/01/2012

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Childrens Specialist Dr. Frim in Chicago or The Chiari Institute in N.Y. is where to go!

Mary - posted on 01/03/2010

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Honestly Angela, it's been so long ago, I don't remember the exact size of the syrnix...but that wasn't the major issue that she had, so I guess that's why it didn't stick with me. I'd have to read her surgery reports to remember. Her issue, BTW she's 19 now, was the UTIs and the tethered spinal cord. The surgery was to untether the cord so that the nerves and all to her bladder would function correctly and empty her bladder completely...which it wasn't doing. No, the syringomyelia, syrnix or tethered spinal cord never really kept her from everyday things. She's tough though, maybe that's it. She had her surgery the first week of Christmas break and was back to school by the the end of Christmas break. A real trooper!! She still has a lot of back pain, but takes nothing other than Tylenol & such for it, if she does, most times she just deals with it. I don't blame you for wanting your daughter OFF the morphine!! No way to live... :(

Angela - posted on 01/02/2010

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Hi Mary,
How old is your daughter now? Do you know what size the syrinx is & where it's located exactly? How severe was your daughters pains & symptoms? Did it keep her from doing things in her everyday life? I also forgot to mention that my daughter had the urge to urinate very frequently before the surgey. She still has the urge, but it is a little better since surgery. She has never had an infection just the urge. The Neurosurgeon that did her surgery was our second opinion doctor. The first Neurosurgeon said everything she was diagnosed with was mild & no surgeries were needed. He recomended pain management. Well, all the pain medicines before & after surgery don't even touch her pain. She told me that only morphine sort of helps, but who wants their child taking morphine on a regular basis.

Mary - posted on 01/02/2010

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Hi Angela. My daughter also had the tethered spinal cord, and had the surgery 10 years ago. She still has the syrnix, as the neurosurgeon thought it would be more detrimental to remove it than leave it alone. She still has chronic back pain, but the UTIs have not been as often as they were before surgery (that was the reason to untether -- chronic UTIs). We too dealt with test after test after test to find out why she had the UTIs for about eight years before she was finally diagnosed with Syringomyelia. It is very frustrating knowing that with all the technology today, she still has pain in her back, still has UTIs, although not as often, but they are severe when she does get them. And from reading about your daughter, now that I think about it, mine does have the headaches, and the fatigue also. I sometimes wonder if the surgery was the right decision, as she still has the UTIs and the back pain is worse. She does have scoliosis, so that may be a factor of the back pain, I really don't know...
Have you gotten a second opinion? I would recommend it.

Angela - posted on 01/02/2010

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My 13 year old daughter has a 2mm syrnix in her spinal cord at T3. We have been dealing with her symptoms for years, but it was not confirmed she had the syrnix until August 2008. June 2009 she was diagnosed with Chiari Malformation & Tethered Spinal Cord Syndrome. She then had surgery to release both of these in August 2009. The surgery only helped her chronic neck pain. The Neurosurgeon says after these surgeries the syrnix usually gets smaller or disappears. Her symptoms have gotten worse since surgery. Before the surgery the MRI showed her spinal fluid flow was slower than normal also, but the doctor said it was not slow enought to worry about it. She has chronic headaches, chronic leg pain, chronic back pain, chronic fatigue, numbness, muscle atrophy & skin discoloration that is patchy that comes & goes. It looks like she is dirty, but she is not. The patches are getting more regular & covering more of her body when it occurs. Since the surgeries the doctor has had other tests done & also had other specialists check her for other issues. I know he is trying to rule everything out, but now she has had basically every test possible ran & they are all normal. All we know for a fact is she still has the small syrnix & slow spinal fluid. I don't want her to have the surgery to remove it, but if this is what is causing the problems then it should be done. All I know I am watching my daughter deteriorate in front of my eyes & she hasn't been to a real school for two years. The school sends teachers to the house. Did your child have surgery to remove a syrnix? If so, how did the surgeon finally decide to do the surgery? I would appreciate any information.

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