|
|
Post by tamarin on Jan 18, 2012 18:52:49 GMT -6
Hey everyone - Just joined the message boards after months of reading. Real quickly: after years of pain in my right groin area (had a real hard time finding anyone having pain here as a result of an SCT) that was getting progressively worse, my urologist (who found nothing wrong), suggested that it was my back causing my problems. I since have developed other pains in my lower left leg/foot and left hand. I've always had back pain - ever since high school - which has gotten worse recently (I'm 34).
In August, after a couple of MRI's, I was told by my orthopedic that I more than likely have a schwannoma (though my NS said it could also possibly be an ependymoma) and I followed the advice of many of you and sought out the opinion of Dr. Jallo. He responded almost immediately both times I emailed him and gave me a different opinion/suggestion than that of my other doctors. I was more than impressed with how quickly he reviewed what I sent and answered my questions.
In addition to their findings, I also have degenerative/herniated discs and apparently a possible pars defect in a certain area - definitely not helping with the back pain.
Right now, I'm in no hurry to have any type of surgery and will be getting a follow-up MRI in March. Dr. Jallo recommended getting my entire spine and brain scanned the next time around. This wasn't suggested prior. I'll also be starting PT (I should have started much earlier) for the back pain.
Again - thanks to all who posted your stories and experiences regarding your SCT's and with Dr. Jallo.
|
|
Lisa2
Junior Member
Posts: 5
|
Post by Lisa2 on Feb 11, 2012 12:19:57 GMT -6
Hi,
I also have been diagnosed with a possible nerve sheath tumor (at L1 spinal root in the foramen) and contacted Dr. Jallo. He also advised me to get the rest of my spine and brain imaged. If you don't mind me asking, where are you, and how are you going to get someone to order that MRI?
Thanks,
Lisa
|
|
|
|
Post by tamarin on Feb 24, 2012 7:50:18 GMT -6
Hi Lisa. I am in Upstate NY. I am currently scheduled to meet with a Neurologist and hope that he will order the aforementioned scans. Because I also have disc problems, I was told that insurance carriers would prefer that a certain amount of PT be completed and if the symptoms continue, they would be more likely to approve the scans. I'll post again my visit with the Neurologist.
|
|
|
|
Post by Lady of Faith on Feb 24, 2012 16:30:55 GMT -6
My experience was after the tumor was seen in the first MRI, I was sent to see a neurosurgeon. His office contacted the insurance company and ordered MRI's for the rest of my spine. They approved them to be done both with and without the dye. This helps them decide exactly what needs to be done before I put my body through anything. Hope this helps.
|
|
|
|
Post by tamarin on Mar 1, 2013 19:19:03 GMT -6
I had a recent visit with my neurologist. The tumor (it's at S1) grew about 1.5mm since last year. My groin pain hasn't been any issue for a very long time and other than my daily back pain (which could be attributed to my disc issues), I have relatively little going on at this time. The only new symptom is my right two middle toes go numb and only when I'm standing. I'm still at the wait and see stage and unless new symptoms appear, I'll wait until my next MRI in 2014. Based on what I read here in these forums, I could be in a much more difficult place. I think of the people on this board often and wish all of you the best of luck in your experience.
|
|
metz
New Member
Posts: 2
|
Post by metz on Mar 2, 2013 18:05:29 GMT -6
Has anyone experienced atrophy of their feet?
|
|
|
|
Post by peaceandlove on Mar 3, 2013 0:31:58 GMT -6
Mets,
I am too having numb tingling in my toes.They become red some time and some time i feel like the blode vessels inside them are moving when posture and going to be like cut.I ask and hear that a SCT can have all king of strange symptomes.But for artp[hyy sorry no info
|
|
|
|
Post by peaceandlove on Mar 3, 2013 0:39:13 GMT -6
Tamarin ,
Am a SCT.First Laminectomy i have done it, my neurosurgon say that if any surgon touch my ganglioglioma i will be paralyzed.He confirm that to me!!! In the other hand dr. Jallo Who is a great doctor and generous doctor to review our MRI free of cost which unfortunatly in this time nobody will do that He (george) State that he can do it, he can resect it.He is using neurophisiological device to perform resection.My doctor is a great professore of neurosurgery in my place. This word when he say it to me "you will get paralyse" rally it paralyse me again that surgery. I am so confused.I am afraid.Do it or no.In the other hand until when are we going to wait and see.For me the pain is seriously preventing me for all kind of life activity.It is a pain in the a.. Any advice will be apretiated.Thanks
|
|
|
|
Post by tamarin on Mar 3, 2013 12:05:16 GMT -6
Hi peaceandlove - If I was getting conflicting advice from two doctors, I'd probably try and seek out a couple of more opinions from other doctors, to see if there is a general consensus. I've only been to one doctor (and Dr. Jallo reviewed my results as well) and both have given me a similiar opinion. If I choose to have surgery, I'll probably explore my options with other doctors before I choose who should operate. Good Luck to you!
|
|
|
|
Post by teacherjohn on Mar 5, 2013 17:21:34 GMT -6
Hi all just joined and found this forum, I have just been informed I have cancer in my vertebrae plus a fracture in the L1 area.
The worsening problem now is the pain, its ok if I lay down If I lay on my back, but if I try to move side ways or try to stand now I have horrendous electric shock type pain across my lumber region, I go to the specialist orthopaedic doctor to morrow if I can get there as I can't seem to walk for all the pain.
Does any one know what the usual treatment may be for this kind of illness
Thank you
|
|
