Congenital Spinal Stenosis

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Keydetmomma
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/11/2010 9:08 PM (GMT -6)   
Hello--
My 15 year old son was just diagnosed with congenital spinal stenosis this week. After a jarring hit at football last weekend, his fingers on both hands went numb along with severe pain in his shoulder/ neck and arms. We sought medical attention through the sports medicine doctor who is affiliated with the high school that next day. Long story short, the dr was perplexed with his Xray and immediately sent us for an MRI that night. We were stunned to find out that my son has this condition along with 2 bulging discs and 1 herniated disc.
We are being referred to a neurosurgeon and we are trying to wrap our brains around this. He has been told that football is a thing of his past now and that alone is hard to deal with. But then to be told that he has the "neck of a 50 year old"...that is one that is hard to swallow for me. We are on day 4 of a steroid to help with the swelling and that seems to be helping quite a bit because the radiating pain in his arms has subsided and the numbing/tingling is gone. However he still has soreness in his neck and shoulders.
I guess I am just trying to find others who have this congenital form of stenosis and what their experiences had been. I am thankful that we have found this out before a devastating injury occurred where he could not walk again. However, we dont really understand what we are dealing with. Most people we have talked to say that they have never heard of a 15 yo who has disc issues and stenosis.
Any info you can give would be greatly appreciated-
Thanks in advance-

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 11/11/2010 9:36 PM (GMT -6)   
a good friend of mine had the exact situation; age, football, congenital all of it. this i believe will take the best neurosurgeon available. it is not a hopeless thing. my friend had a neuro. perform a spinal fusion on him at 16 and he got better but the surgeon informed him he would need multiple decompressive laminectomies frequently. this was not the best neuro. for him. he got very bad and symptomatic and found a very experienced ortho. he performed a decompressive laminectomy and the 40 year ortho said it was the toughest spine surgery he has ever done but the results where amazing, miraculous, he was almost cured it seemed to this day. the reason he said the surgery was so difficult was the first surgeon should not have fused his vertebrae at that time. the point is for congenital spinal stenosis i would get as many opinions as possible. a group of neurosurgeons that are regarded as the best in the norfolk VA area have a web address www.nsinc.org that is informative with links to other sites that are informative on cervical stenosis. best wishes to you and your son and remember that this can have a good ending and i will pray it will.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: OxyContin 60mg 2x, Dilaudid 8mgs [brand] 4x p.r.n. brk., Phenergan 25mg 3x prn nausea, Lyrica 75mg 2x,Adderall 20mgs 1x A.M., Soma 350 mg 3X, Relafen 1000mg 1x, Klonopin 1mg H.S. or prn anxiety Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/12/2010 1:03 AM (GMT -6)   
Hi Keydetmomma!

And welcome to the Chronic Pain family. I'm so very sorry for the reason you are here. I must admit I have tears writing this as I know how painful it is when one of your children is either very ill or injured. Most moms and grandmas are like that I guess. Please tell your son that there are people out here who've chatted with his mom, that are praying for healing and recovery from his injuries.

I haven't dealt with this particular issue with my children so I do count myself lucky in that respect. When one son asked to play football in Jr. High I told him we'd leave the decision up to our doctor. That took care of that right there. His advice was that as long as his bones were still growing there's no reason to be risking injury. I'm not trying to make you feel bad by mentioning this. You make the right choice for your son and family at the time. But I wanted to share what I went through for others to know what I did. My son inherited very bad shoulder and knee joints and I'm not sure how long he'd keep walking if he banged into them more. He's in his early 30's and those joints let him know they're there but he keeps rock climbing (shudder) and fishing, camping and working way too many hours. He loves life and lives it to the fullest.

Enough about my story, back to you. I hope your son's doctors are able to find a reasonable solution for him and that it works. It must be so very frightening for you right now...I know I would be. The people here on the Chronic Pain forum are very much a family who cares and shares with each other. All you have to do to join in is say 'Hello'. So please keep us posted on his progress either positive or not and we'll be here to listen and for you to lean on. I've wet many a shoulder over the years here. wink So take my hand (extending hand) and we'll be beside you whenever you need us.

Warm hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums

“If you want to live a happy life, tie it to a goal, not to people or things.” Albert Einstein

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3696
   Posted 11/14/2010 2:30 PM (GMT -6)   
Keydetmomma

I do not have children with the condition of your son, how ever I myself have severe cervical disk problems in my neck. I had a massive herniated disk at C-6/7 that required surgery at the age of 34, the doctors swore I had to have been in some major accident for the disk to rupture the way it did, but I had not! since then I had another disctomy and fusion at C-5/6 last year, and I am having more surgery tomorrow at C-3/4. The Doctors now claim that it is my genes, and I was just told I have the spine of an 85 year old man, ( I am 59) the reason I am telling you this, is because, I understand how difficult this must be for you and your son, and it definitely is! But it is also manageable and please make sure your son knows this, it is not the end the world, yes he will have to make some major changes, but he can be succcessful, and get through this. There are many of us here with disabilities, and allot of young folks too. Some your sons age, and they have faced some pretty major things in their lives, for being so young and they have persevered! I would suggest that you try and find out as much information as you can about your sons condition, ( I am sure you have already started) knowledge is power. I am glad you came here to our forum, we of course can not cure anything but we can lend you our ears and listen, and give you support and what advice that we may share. I do wish you well, and your son and your family


Good Luck to all of you!

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Keydetmomma
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/14/2010 3:46 PM (GMT -6)   
I wanted to thank all of you who took the time to answer my post. In the time that I first posted we have been referred to a leading pediatric (yes...he is 15) neurosurgeon and we are meeting with him on Thursday. I feel confident that we will get some helpful info on where we go from here. I have done alot of research over the last few days and I do feel that my son was very lucky that this was found before he suffered a severe and debilitating injury playing football. It was certainly a blessing in disguise.

I will keep in touch and continue to post here and become a regular as much as I can!

THanks again for your support and understanding!

Surfergirl47
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/14/2010 5:39 PM (GMT -6)   
Hi, I'm interested to know what your neurosurgeon suggests. Has anyone suggested pysical therapy first? I have cervical spondylosis and have stenosis as well. I get severe radiculapthy down my right arm. I use all different sorts of treatments to help, physio, chiropractor, accupuncture, homeopathy. This is my second severe bout of it. It usually lasts 1 - 2 months then I am pain free. I also must mention that bone problems can be caused by kidney problems and or parathyroid problems. These control your Vitamin D and Calcium levels. You may wish to have your son tested for these as well as a bone density test. I am 45 and I have Graves disease which affected my thryoid and when I had my operation on my thyroid at 20, the surgeon damanged by parathyroid glands during surgery which has resulted in my kidney problems. Don't just take it that your son has this problem without further finding out WHY!!! Don't stop asking questions. For homeopathic I take Rhus Tox, it's good for arthritis.

Good luck!

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 11/14/2010 8:31 PM (GMT -6)   
thats great, and the most responsible parental things to do at this point because the faster you can jump on these things the better chance it can be held at bay. the higher cervical vertebrae at the more important to make sure they are clear and wide margins for the nerves to float freely rather than be squashed up to the sides of the exiting holes. an EMG will probably be a diagnostic thing done. i would be curious as to what the pediatric neuro. says the first moves are; i wish you the best with this physician and you will be in my prayers.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: morphine sulfate ER 10OMg q8 , roxicodone 30-60mg prn,vistaril50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Relafen 1000mg 1x, alprazolam o.5 mg, Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg,

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/27/2010 2:27 PM (GMT -6)   
Keydetmomma,

I also have Spinal Stenosis and my dad also had it. When I was 20 I was DX'ed and told that my spine looked like an old lady's...nice to hear....it's gotten worse ever since...I have had 2 surgeries the last was fusion...neither did any good. You and your son are lucky that it's happening now...instead of 24 years ago...he has a much better chance to get it fixed....Good luck

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 12/27/2010 4:13 PM (GMT -6)   
Get Several opinions, before deciding on any surgery, surgery might help for now
but there might be consequences later down the road from surgery, best thing
is to get several consults, before making any decision, this will not be an easy
decision....and ask what the outcomes are....
Prayers and healing hugz for you and your family...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/29/2010 7:01 PM (GMT -6)   
Yes, absolutely...surgery isn't a cure-all. I was so naive about it and trusted that it would "FIX" all my back problems...NOT!! That's not to say that it doesn't work at all, some people get very good results..I'm not one of them.

Fusion surgery, even without the instrumentation, is a hard one to recover from...bot physically and mentally. It has been 6 years and I'm still worried about something happening. Every little crack, twinge, or pop sends me reeling. So, think about it and talk to a lot of people as well as Dr.'s

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16416
   Posted 12/30/2010 12:58 AM (GMT -6)   
Hey guys this post has been sitting stagnant for a month and this person has not been back to the forum since mid November.
Moderator Chronic Pain Forum
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