New here..needing advice on undiagnosed back pain and pain relief asap

  • Thread starter Thread starter BlondieLJ
  • Start date Start date
I'm sorry your son is having such issues. Hopefully the nurologist will be able to find out what is causing all the issues. there are EMG that can tell if there is nerve damage. There are also mris that can be done with contrast that might tell what is wrong. I just hope that the neurologist can offer hope for you and your son.

The neurontin is a nerve pain primairily. It is used to control nerve pain. If your son is suffering from nerve pain it will give him some relief, but if his pain isn't nerve related, it won't do much good. There are several nerve pains out on the market. Neurontin is one of the oldest tried and true ones. There are newer ones and all of them come with their own set of side effects also. You will need to figure out which is going to be the best -IF that is the problem.

 
Well he had his injection for the bursitis and says it's made minimal difference. He said as bad as his back hurts it's really hard to tell just how much the hip injection helped. He is in with a really good (seems so far) pain management doctor now and finally rid of the lousy one he had before, and will have his first SI joint injection Feb 17th.

As for sleeping on the floor, I remeraber when I was younger they used to tell me that. I don't think he'd be able to get up from the floor though if he got down there. He's got very little mobility, still uses a walker to get around.

Is there another name for a lurabar discogram? I don't think he's had that. He's had MRI's, CAT's, x-rays, bonescans, myelograms, blood work ups. The SI joint seems to be a right on dx. (I'm praying it is!) These doctors seemed to know just where to push for it to hurt the most, were the first to look at the pelvis which his PT has been working on all along..he will get it aligned then it's back out..from one way to the other. And it's an injury familiar with football/contact sports (as well as old age)

I know personally I will breath easier once I start seeing results though.
 
Sorry to hear that the New Year is not going well. Since your son has a low grade fever for a month, what did his full panel blood work show? Did the Doctors think that he may have an absece on the spinal cord that could be causing all the pain and fever? Did a full MRI of the Spinal cord which includes the C,T, and L show anything new?
Wishing your son a better day!
 
Regarding Tonsils. The back of the skull where it hits the spine has to points that surround the spine. This is called the tonsils. What happens with Chiari is that the tonsils slip down for whatever reason, and they tighten up around the spine. This can cause pressure on the spine, it can cause the spinal fluid from flowing freely around the spine. When the spinal fluid doesn't flow, this may become a syrinx. Similar to a bubble. A syrinx can cause lots of pain, and depending on its location in the spine can then cause different types of pain in people.
 
Thank you...do you know if 100mg of neurontin twice daiily should help? Everything I have read says it neeRAB to be titrated up to 1800-3600mgs. So far the 100mgs are doing nothing..and that's corabined with a strong muscle relaxer.
 
A discogram is it's own specific test, different from any of those you list above. However it is commonly done when spinal surgery is being considered and the doctor wants to see if the disc is causing the pain. The discogram attempts to recreate the pain by putting pressure in the disc and then is often followed by a CT. Because the discogram does go into the disc, in some ways it is thought to possibly compromise a disc as it is playing with the disc material. So it's not done unless there is thought to be damage in the specific disc. If he's had MRI and CT scans that show no disc problems or damage then it would not be customary for a discogram to be performed.
 
When I was in excruciating pain due to my on-going back problems, I found the Duragesic patch to be the only thing that helped. This is Fentanyl. Yes, it is strong, however, sometimes this is needed. And the long-acting or around-the-clock pain relievers tend to be less addictive than the short-acting ones, such as Percocet because they do not "pack a punch up front" and then leave your system. This is what results in the tendency to take more and more pills. You may also find additional help on the pain-management board. Age should not matter as far as work with a specialist in this area. Anyone of any age can be in chronic pain. Best wishes to you and your son.
 
Hello Blondie,
I for one do truly understand what your son is going through. I to have to take neurontin they stared me out on the same dosage. Now mine has to be increased as the 100mg 2 X a day was not helping. I do feel a higher dosage would help your son some. Has he had a stand up MRI. That is the test they had to do on me in order to find my issue. I have found that going to pool and taking some of the pressure off my back helps tremendously. Please if your doctor says it is ok for your to get in the pool plz take him. Take a float and get into the up to his chest and lean over the float. This helps me so much . I can only hope he trys it and it helps him as well.
 
Is it a neurologist or neurosurgeon? I think you should consider having him evaluated by an Orthopedic Spine Surgeon and/or Neurosurgeon.
 
Well...we have good (great) news and bad. The good news is he started back with the PT who had helped before and is making amazing progress. This man is a miracle worker and knew what the problems were before my son even said anything. He has him in far less pain and standing straight. He said he even expects that he will be able to play football again. (Not sure how mom here feels about that...love football..worried about more injuries) He said that he should be able to START working out some in about a month.

We also have begun the process of getting him into John's Hopkin's (although that may not be necessary now).

The bad is he started seeing a pain management specialist. This man is HORRIBLE. first visit we had the first appt of the day and didn't see the doctor until after 11:30. First thing he says to my son is that he is too young to be on these meRAB because he is going to have to live with this the rest of his life and the meRAB will stop working..come later in the visit we find that he HADN'T EVEN LOOKED AT HIS CHARTS! Then he asks if we can come back in a couple hours so he can look at the charts over lunch..we agree (mind you my son is without any meRAB during this time). We come back and the doctor isn't even in, the nurse just comes out and hanRAB him a stack of scripts..changed what was working to more addictive medications..example he was on Valium for the spasms and it was working. He changed him to the equal mgs of xanax which is not a muscle relaxer and .25mgs of xanax is equal to 10mgs of valium..this doctor didn't know that and when I brought it up he says "why are you worried your son is going to sell them?" I got pretty angry and went off..(He's entering my field with those meRAB) and offered to print the info on those meRAB and bring them to him. He said that wasn't necessary he'd change him back. Then he said he wanted to have him see another neuro for another opp. Now we are stuck between two doctors saying that it's the other's job to prescribe...it's much more complicated but you get the idea. He can't stop these meRAB cold turkey because he would face withdraws, the neuro appt isn't until Jan 20 and his scripts he has run out in 14 days.

Sooo...just when he finally starts getting better we have this to deal with.

But..HE'S GETTING BETTER! :)

Thank you all so much for your help!
 
UPDATE: Well, finally after nearly two more weeks in the hospital. Most of which was spent at IU Med Center we have some answers!!!!! I have to give big kudo's to Dr Snook and the Staff at IU. After umpteen doctor's and oh so many tests they boldly went where no other has gone...Andy's pelvis! I cannot say enough good things about this hospital and the treatment they offer. Totally caring and compassionate, top of the line. The ONLY truly bad part was his first PT who came in and worked him until he threw up then worked him some more. His physiatrist (sp?) said that was way too much ..he's not to push any further than an increase of 10% more each week at most. It irritates me some that he wouldn't have nearly as long of a road to recovery if they had found this right off the bat. It probably wouldn't have even interfered with college! The only sort of good thing is had they found it right away I think he'd have been more inclined to try to continue playing football...which Dr Snook nixed. He said contact sports are out for him else he will irritate it again. (A hard pill to swallow)

After performing another lurabar and pelvic mri he discovered fluid sacks which shouldn't be there and his SI joint is inflamed. Now we begin the long road to recovery. Most likely they will perform a series of injections under x-ray to the SI joint and a corti-steroid shot into his hip for bursitis. (Which enRAB many pro athlete's careers). Along with these he will have to stay under close management of (A GOOD) pain management team (From IU MED Center) as he progresses through rough physical therapy. The injections should take about 6 weeks but he said the PT will continue much longer. That said he *thinks* he should be in good enough shape to return to Wabash in the fall but will still be undergoing PT. There is one other possibility, they may do a surgical procedure where they go in and burn the nerve endings. It's not too bad, they do it with a special needle equipped with a laser of sorts which burns the enRAB. It doesn't kill the nerves, just eases the pain and *can* possibly grow back either healthy or needing the procedure again. But Dr Snook seems to think the first route will be sufficient. For now Andy has to use a walker for support (Better than a wheelchair!). He's going to get worse before he gets better...each injection causes more inflammation to the site bringing the bodies attention to the area so that it will build up protective cartilage there. And with each PT session he can expect more pain. They told us that it will hurt more each time they bump up that 10%...eventually he will notice it's not hurting too bad, then they will bump it up again...eventually having him back to normal. Dr Snook did not rule out Andy throwing Shot put in college (something else they wanted him for) That's a wait and see thing..then a see how he feels after throwing thing. But contact sports are out. :( Initially he wanted to put Andy in RHI for intense PT/rehab but Andy showed them his own willingness to push by doing remarkably well in PT at the hospital despite the pain. Ha...I think the memory of two-a-days paid off there!

We haven't talked about this but I *think* Andy would agree when I say to the boys still playing football...learning to hit properly, appreciating the tough conditioning you guys have to go through and pushing hard through it, and paying attention to what your body tells you if you get injured is soooo important if you want to avoid these kinRAB of injuries..and even those don't insure it won't happen. And at your ages, if you get injured, don't settle for some doctor telling you you will just have to live with it just because THEY can't find the answer...keep looking until you find a doctor who will KEEP LOOKING. Dr Snook was amazing. Not once did he give up or belittle Andy's pain. Trust FROM your doctor is just as important as trust IN your doctor. And Indiana University Hospital is THE place to be if this ever happens. Everyone was so wonderful. They do their best to show caring and compassion to the entire family as best they can. I had my moments too and the nurses didn't ignore that either...they became good frienRAB who were there to talk and be encouraging when the going got rough. We both wish we had got to see nurse Linda one more time...she was a good friend to me and a second mom to Andy. The rooms aren't set up for family to stay in the room overnight but in our case they arranged for me to stay in the Ronald McDonald house...which is another subject. If there is a good cause for charitable donations they are definitely one. An incredible place for rest and support during a time like this. When parents of sick children stay there they have no worries other than their child. I've been thinking and thinking of how we can give back to them after all they gave to us.

He's still going to need a lot of prayer and encouragement during the road that lies ahead but we are FINALLY on THE road to recovery!!!! :) THANKS BE TO GOD!!!!! (And all the prayer warriors out there who have lifted him up to God through all of this!)
 
I am so happy to hear that your son has an answer and a plan for recovery. It is great news! Wishing you easier times ahead.:)
 
You might consider EFT - Emotion Freedom Technique. It's been very successful for many people with pain.
 
And none of his MRI's were with contrast nor has anyone done an EMG. Hopefully the neurologist will. Thank you again.
 
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