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Vice grip on both legs with both feet feeling stiff on bottoms.
Bones, Joints & Muscles | Last Active: Jul 16, 2023 | Replies (45)Comment receiving replies
Thanks Lisa, for the welcome, and, hoping that your son's tether release was a success, and that he is doing well!
As I describe my experience, I want you to keep in mind that his experience is, and will be completely different than mine. Early diagnosis, treatment and ongoing observation from skilled clinicians means everything..It was quite different 67 years ago, and I knew Nothing about my diagnosis until I was 27 yrs old. Most doctors then had never heard of tethered cord.
The doctor that did my delivery noticed a closed "fat pad" over the base of my spine, and commented to my mother,"I just don't know about this.", but let it go. I grew up with no feeling on the outside of my left leg & thought everyone was like that. Everything else was typical kid stuff. I was walking at my 6 month pediatric visit. I took tumbling, tap, on pointe, played sports, etc. I remember having temporary weakness below the waist if I hyper extended my back or legs, but I never mentioned it
At 22, I became an RN, married at 23 & had my first child at 27, By then, I knew the leg numbness wasn't normal, but I was too busy to figure out why. I finally saw a specialist who had me waste a year doing low back exercises.
One day, I tried to toe up with my left foot, and couldn't. I also noticed my leg was cold, and felt a bit smaller. I kind of panicked, and so did my doctor. My entire leg was 2" in diameter smaller than my other leg. He ordered a myelogram which clearly showed the tethered cord, benign tumors and spina bifida occulta. I was then referred to one of 3 neurosurgeons in the country that had experience with this. My neurosurgeon actually practiced at the hospital where I had trained, He did the most complex head and spinal surgeries there. He was rumored to be on call for President Kennedy when he visited the midwest.
We (students) were all intimidated, and afraid to make rounds with him! I became his patient, and I was still afraid of him!
He did my surgery when I was 28. I was the first adult he'd ever done. He excised the tumors and released the cord. I think he saved my future as a wife, mother, and as a nurse. I had another child at age 30, and worked another 35 years.
I recently had an MRI at Northwestern Hospital in Chicago, and found that my original surgery remains stable! As a senior citizen, I do have some problems associated with my cord, but these are also things that could happen to anyone as they age. We're retired, and both love to travel, do estate sales, and enjoy grandkids. I know this is more than you asked for, but I wanted you to know that I led a normal life.
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Hi, @pammiesue51 — thanks for the good wishes for my son, who had tethered spinal cord surgery at 3 months. Yes, thankfully, his surgery was a complete success, and he is doing just fine now. He has what we call an "upside down happy face" scar around his tailbone — pretty significant one — but we figure only maybe teammates in a locker room, a cabin mate at camp, or a future wife will probably ever see it. The surgeon decided to remove the hemangioma along with untethering the cord, thus the larger scar. I was happy to see that go, as it was very unattractive and angry-looking.
In the short term, his recovery was slow in some ways, as he had delays in sitting up, walking, self-feeding and communication. We were one of those families that count every word uttered to ensure he had at least 50 words by age 2. The school district tested him, developed an IEP, and did a lot of OT, PT and speech with him. They felt his body had to put so much energy into his recovery that some of the other areas fell behind. They did a great job over a couple of years, and he did catch up.
I would say that even for us, in 2006, our son was considered a rarity of interest to medical students and trainees, and just about every doctor he's ever seen has been fascinated by his case. I can hardly imagine having this condition in a time where doctors were unfamiliar with it, and I'm sorry that you were not diagnosed till age 27 — though so glad they found it for you. That is quite a long time to go with a condition that is undiscovered, but I can completely imagine it 67 years ago. Sounds like you were way beyond our son in your development as a small child. Walking at 6 months is quite amazing. So glad to hear you were able to do all those sports.
It sure seems like you had an excellent neurosurgeon when your condition was diagnosed. That is a wonderful thing. My son's neurosurgeon, too, was rather intimidating, but he had a very sweet, soft-touch nurse who went around with him and stayed behind at each visit to kind of hold your hand, explain anything you didn't understand, and the like. Do you remember if your surgeon had someone like that on his team? Perhaps you knew the others on his team, if you worked there and rounded with him. The key thing, though, in my opinion, is the surgical skill. That is so wonderful you feel your surgery saved your future as a wife, mother and as a nurse, and that you went on to have another child and work 35 more years. What a blessing.
So happy to hear that your original surgery remains stable.That's great news. I am sorry to hear that you do still have some problems associated with your cord. Very glad to hear, though, that you've had a normal life and are able to enjoy your grandkids, travel and have a great retirement.