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

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BlondieLJ

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Hello and thank you for taking the time to read this. We are at our witts end! I have an 18 yr old son who injured his back playing football his senior yr (over a yr ago now). During a tackle he fell on another players helmet. Followed by a serious car accident (not his fault). He has seen our GP (repeatedly), a Chiropractor, spine specialists, physical therapists etc and been told that the MRI's and x-rays show nothing. Although the Chiropractor did believe that the cartilage between some of his discs was far to worn down for his age. He is an honor's student and won many academic scholarship to a very prestigious College and was recruited by their football coach (He has him on injured reserve for this year)..leading to seeing the team doctors, trainers, a new PT working on gentle movements in a pool. They are sending him to a neurologist next week so we are hopeful there. Our problem is that while we are pursuing the cause of his pain no one seems to want to help with the pain. Our GP was prescribing helpful pain relief in the beginning but now is down to 5/500 lortabs because she is worried about him having narcotics on campus. The thing is without pain control he can't be on campus. His pain is so severe that he can't walk, sit, or stand for long at all. He's had to be taken by arabulance to the ER and I have driven over countless times to take him myself, they know when he gets there he's in extreme pain by his sky high bp (usually low) and body racking spasms that are obvious. The ER doctors do take care of the pain at the time, usually taking shots of toradol, 2 shots of dilaudid, and 2 shots of norflex just to get the pain down to below a 5 on their scale. I deal with pain as well and can tell you that would knock me out (which isn't easy) but it just makes his tolerable. It does not "buzz" him evident by conversation, alertness etc. He is NOT your typical teenager and our GP knows that, knows him, has seen him with broken bones, concussions and other injuries and how he can take pain normally. This young man turned down morphine for appendicitis because it made him throw up. He's refused pain medications in the past for injuries. He's NOT a drug seeker.

Now we are afraid he is going to see all that he has worked so hard for go down the drain. He loves his college and has been trying to keep up via his laptop from home but the pain is so intense things are not looking good. As his mother I have never seen my son cry repeatedly through out the day due to pain. I've only seen him cry from the appendicitis.

We are looking for suggestions to make his pain tolerable enough for him to attend his classes, how to convince a doctor to prescribe this to a college student, and if the neurologist doesn't help where to turn next? We were told by several doctors that PM's won't see him due to his age (although that was before his 18th b-day). We need fast relief until the problem can be pinpointed and resolved so he doesn't lose his scholarships and have to leave the college he absolutely loves. There is no way we could afford this college without the scholarships. Any suggestions?
 
Here are some specialist in Chiari. Dr. Carson at Hopkins, I do not think that he is seeing new patients. Dr. Frim in Chicago. The Chiari Institute in Great Neck, Long Island, NY. Dr. FelRABtein at Colurabia Pres. in NYC.

Surgery is not always the answer to Chiari. Your son neeRAB to be evaluated by a Specialist to see if this is the cause.

Chiari is very tricky. Some people with the slightest tightness in the brain stem cause great pain and there are some people who have their tonsils dropped and tight do not have any symptoms. Symptoms are varied.
 
After reading your original note, I saw that your son had previous concussions. I was wondering if the fall on the football field with him then having the car accident didn't cause another problem. Has your son had an MRI of the Cervical Spine and the T and L. Have the doctors take a look and see if there is an herniation of the tonsils from the Cervical MRi. I was thinking Chiari. Could there be a Syrinx in the T Spine or L. You need a neurosurgeon to look at the pictures.
For pain from myelograms drinking coffee or caffeine should help. If he neeRAB to do another myelo have him drink coffee right after the test.

These are thoughts that come to mind, I wish you well and hope that someone comes up with an answer.
 
Here's where we are now- They did a blood patch for the spinal headache which was very painful but worked. The doctor who did it said he'd never seen anything like what happened-when he entered his spine there was so much fluid leakage he thought he had hit the wrong place, but it was the right place, he just had a LOT of leakage.

Next they did a Pars (sp?) injection which worked wonders immediately following but wore off quickly. At the hospital they put him on oxycontin, percocet for break through pain and valium for the muscle spasms. This had him moving ok with still some pain and no spasms at all. (without taking the maximum prescribed Valium) and he seemed to be improving. Then we went to a pain specialist. BAD..he had the first appt of the day but because they didn't send him his new patient pak they initially wanted to reschedule, reluctantly they had us wait. 8am appt-didn't get seen until after 11am and then he said he wanted to review his disc of tests done and asked us to come back in the afternoon..at which time we didn't see the dr, was told nothing just handed a new stack of prescriptions. Still on the oxy (20mg 1 every 12 hrs), 1/8 the dose of percocet (5/325) he was on, took him off the valium (10mg up to 3 times a day as needed) and put him on a much stronger dose of xanax (3mg extended release twice daily) which knocks him out and makes him feel really drugged (and I have read is far more addictive), plus the muscle relaxer Zanaflex (4mg twice daily) which we told him didn't help before. He said he was going to put him on pamelor but didn't, also said he wanted to get him into counseling but didn't. He started talking about him having a pars fracture until I said no one had mentioned that, only a bone bruise (which would be over 15months old) then he says "Oh yeah, no there is no fracture" I asked about finding the CAUSE and he gave no answer...basically said that my son will likely have to live like this the rest of his life but that he cannot stay on medications for it the rest of his life.
I'm so completely not satisfied with this! With pain this disabling there HAS to be something causing it! He's 18 years old WAS in perfect health, a strong athlete, top of his class, earned $50,000 in scholarships to go to a prestigious college (had offers from georgetown, yale, princeton and Penn among others on academics but was also recruited to play football) and now we are watching all those dreams and aspirations go down the drain. He had to withdraw from college this semester. If he can get back next semester he keeps his scholarships. Beyond that we aren't sure. He has to register by the 15th and at this point there is no way he could return next semester.

We don't know where to turn next and can't afford to keep grasping at straws. After I insisted during the 2nd to the last ER visit the doctor (after saying kidney stones don't last that long) did check and said there were no stones. I don't know if the test would have shown any kidney trauma? No blood work for arthritis, lupus, RA or anything like that has been done despite all running in my family and my repeatedly speaking up and asking about that. They did mention Fibromyalgia but I have that and have since I was 13, plus have worked with support groups...he doesn't have the presenting symptoms.

The symptoms he has encountered are-
-SEVERE DISABLING BACK PAIN-STARTED IN THE LOWER BACK AND NOW IS ENTIRE BACK
extenRAB down legs if he is too active.
-tingling in his feet
-nurabness and inability to open one of his hanRAB upon waking which lasts for several hours
-nausea and vomiting (seemed to correspond with the neurontin though)
-fainting
-buckling knees
-occasional but notable mental confusion
-back spasms which rock his entire body (looks like a seizure but isn't) you can visually see the muscles in his back spasm.
-weight gain (likely from going from very active to virtually non active plus some medications)
-poor appetite
-walks/stanRAB very stooped over
-tightness in chest w/some mild pain with that
-total nurabness in his left knee

Besides doctors drug testing him, he also gets regularly drug tested as an athlete usually random..and he's always been clean.
MY college background is in social and behavioral science. I know my son and know he is not one to exaggerate or want to be on drugs and I'm not naive about this. Being an athlete he has had many many opportunities to get pain medication and always turned it down. Even with appendicitis and a doctor practically pushing morphine on him he refused it. He has a very HIGH pain threshold so for pain to be such that it immobilizes him and has him needing such strong medications THERE HAS TO BE SOMETHING SERIOUSLY WRONG.

He has not had a standing MRI (we didn't know they could do that?) He has had a cervical mri. Structurally the only thing that has shown on the tests he has had is a 15month old bone bruise (that concerns me..it doesn't seem that a bone bruise should last so long?) and a minor bony protrusion both at the L5 (there was a name starting with an O for the protrusion..I just can't recall it at the moment)

He has seen spine specialists, neurologist/neurosurgeon, chiropractor, our family doctor, team (college football) doctors and trainers, ER doctors and now the pain specialist. He has gone through PT repeatedly, including the hydrotherapy while at college, and occupational therapy

The list of medications tried is endless from NSAID, topical voltaren, narcotics, muscle relaxers (everyone I have ever heard of and more), bio freeze creams, trigger point injections, pars injection, spinal manipulation, anti-anxiety medications, neurontin, lyrica ...you name it.

Tests-
multiple MRI's
CT
x-rays
bone scan
myelogram
EMG (Which they said was normal despite that he felt NOTHING from it in his left thigh)

The chiropractor said that the cart. by his L5 was way to worn down for his age..no other doctor has agreed...but anything anyone has found has been in that area.

An example of the type of person he is and how he deals with pain-he bluffed his way to get to play the last sectional game of his senior year (he was senior team cpt) leaving at the end insisting on walking, in tears holding on to the fence for support.

Come that spring he had improved some and we are going to contact the pt who helped with that now that the holidays are over. That improvement was very minimal but he was not taking pain medication and was walking, could at least socialize and worked in the fielRAB pollenating for two weeks. Couldn't return to lifting or running (training for football which he loves with a passion) and went rapidly downhill with all the walking and working with trainers for the injured reserve football in college. (He'd go from being at the field at 6am, classes in afternoon and evening, evening football meeting etc til 11pm THEN study tables while pledging a frat)

I *think* I have covered everything. Any more ideas??????? We are desperate!
 
Could you explain more about the tonsils dropping? Lately he has been having problems with what appears to be swollen uvula and tonsils. I'm lousy at looking at throats so it's hard for me to see exactly other than it's all swollen closed. It comes and goes..but can be pretty bad. (that said some kind of infection involving sore throats has been going around my family since Thanksgiving)

We have an appt with our family doctor tomorrow to update her (apparently she hasn't been receiving the reports despite us asking she be sent them) and see about being referred to Johns hopkins
 
Maybe pursue seeing a pediatric or adolescent medicine specialist who can focus on helping you find the right spine specialist. I feel bad for your son as he feels the pain but is ina weird in between place being not a child but not considered full grown. A friend of ours has the same problem with his 18 yr old son. He was supposed to go to college out of state next year but now they fell he has to stay close to home. From what he's said most specialists they see are concerned about any kind of surgery as the son is not fully grown. Truth be told I had an L5-S1 fusion age age 20. I ended up growing about a half inch so the fusion did not take. So 6 yr later I had another fusion. Is there a good pediatric facility near you - I know your son is not a child but in many ways his body still is.
 
Since you have tried everything, please consider that because of the football injury your son may have developed Chiari Malformation 1. He neeRAB to see a neuro who Specializes in this! The doctor will want an MRI of the whole spine. They will look to see if the tonsils have dropped even the slightest, they will look for a syrinx. Even if the radiologist report does not indicate Chiari, take the actual films to a Specialist. There are only a few Specialist.
Good Luck!
 
I'm typing from the hospital tonight. Personally I am wanting to just check him out now and go home. They START 500mg Caffiene drips at 9-10:00 AT NIGHT. We told them that his IV was out and leaking several times earlier yet after giving him medication and starting the caffiene drip and having it leak all over him THEN they changed it.
He was scheduled for an EMG before being admitted to the hospital. The group is IN the hospital. Last night one of the neurologists from the group stopped in to examine my son, this morning his nurse called them to ask if they wanted to do the EMG inpatient or reschedule it, they said they would get back with her..but never did, then this evening they call my son to tell him he missed his EMG appt!
His neurologist was even in before they called! And that was another thing..he said "all the tests show is a bone bruise on his L5 vert and that isn't a weight bearing area so that can't be the cause of the pain." It was my understanding that the lurabar was the MOST weight bearing part of the spine and maybe I am wrong on this too but wouldn't a spinal bone bruise that is not healed after a year be something of concern?
But this neurologist says there is nothing significan't found on the tests therefore no need for pain medication..meanwhile my son is lying in a hospital bed having spasms and crying in pain and unable to walk or even sit up now (due to the spinal headache from the myelogram). I REALLY need some help here. I am so worried and frustrated. MY plan is to get him out of here tomorrow, take him home, get him into a pain management group that is near our home and has had excellent reviews (hoping they can see hiim asap) to manage his pain while we continue to try to find a doctor who can find what is wrong. But the ER doctor accused my son of "Dr Shopping to get drugs" so he is afraid to continue looking for a doctor who will give us some answers.
 
It's getting worse. Today he woke and couldn't straighten out one of his hanRAB and had burning in that arm, his knees were buckling on him, feet felt llike they were asleep, sick to his stomach and he fainted. Took him to the ER. And he's in the hospital for tonight to control his pain while they try to get him bumped up to see the neurologist asap.
 
I am very happy that your son is feeling better! But, what was is the actual problem that is causing all of his pain?
 
As of yesterday our GP prescribed neurontin but only 100mg twice daily. Everything I read said that the effective dose for back pain is 1800-3600mg daily, being titrated up 300mg a day.
 
I advise people with back pain to sleep on the floor for couple weeks trust me it's way more comfortable.By floor I mean on the carpet.
 
My heart goes out to your son and you.I have been dealing with the same thing for over a year.Dealing with chronic pain.Doctors do not like giving pain medication.I am currently waiting to be approved to see a pain specialist.If you can get him into a pain management clinic,you might get better results,they specialize in pain.It took a year to find out my problem,2 ruptured disc in my lower back.Xrays and mri did not show the problem,Finally after a year they had me do a lurabar discogram,it shows the disc in detail.You have to keep fighting for your son,the medical community doesnt care.I wish you all the luck in the world,and I will keep you in my prayers
 
BlondieLJ,
I'm sorry to hear what your son is going through. I too have undiagnosed back pain although it doesn't sound nearly as bad as what your son is going through.

As a veteran Neurontin user I can tell you that 100mg twice a day sounRAB almost useless to me. If I were you, I would print off the dosage information and bring it for your doctor to see. It sounRAB to me like he may not be too experienced with using Neurontin for pain relief. The other med you might want to ask about is Tramadol. It's a borderline narcotic but it's not a scheduled med so most doctors are pretty comfortable with prescribing it regardless of age.
 
Still no answers! The neurologist ordered a bone scan, myelogram and an EMG. He's had all but the EMG..and nothing is showing up. They said there was a bony protrusion from his L5 Vert. but that they think that is insignificant. We did get the neurontin upped but it made him very sick (throwing up). Last night after the myelo. his pain and pressure was so intense they admitted him to St Vincents Indy. The ER doctor was only concerned with pain killer addiction and pushing his own pain management team. We did get a new doctor who is an internist who promised him to find the answer and get him feeling better. Today he has the spinal headache. The internist is giving him dilaudid orally every 6 hours..it was as needed then he upped it to scheduled. He's also giving him Valium as well. At least this doctor said "it might be something that was overlooked, might be something rare or even yet unknown but I promise you I WILL find out what is going on and get you back on your feet" Right now he can't walk far at all and it's very painful. I wasn't there this morning but he said yet another doctor came in this morning. There was mention of yet another kind of PT. And FMS was brought up but I have that and have since I was 13...he just does not have the symptoms. (i.e. sore throat, low grade fever, WIDE spread muscle pain, swollen lymph nodes etc..nor the trigger pts aside from in his back.)

Aside from suggestions prayers would be greatly appreciated!
 
I know a little about Chiari malformation due to my FMS (They believe some people diagnosed with FMS actually have this) and when it was first out about that in that regarRAB I had checked and the closest specialist in it was in Chicago but I don't remeraber who or where.

We do have an appt with our family doctor Monday to update her and see about being referred to Johns Hopkins. In my reading they seem to be one of the leaders in more areas and in finding those rare illness'/diseases/injuries etc. One thing I sturabled on on their website was something called "stiff person syndrome" which I'm unsure how severe other than disabling that is, it sounRAB very similar to what he's been going through. Even in that it is primarily treated with Valium and although that hasn't been "enough" it's what has helped the most so far medicine wise. Now from what some sites say about this it usually strikes in the 40's or older but then when I got FMS at 13 that was considered very rare as well so who knows. I'm just hoping he can get in and HOPEFUL that they will find the problem.

I just gave him the link to this board so hopefully if he can focus he can help add to anything I might have forgot to mention or correct me if I got dosages or such mixed up.

I know Chiari Mal causes pain and I know that it has to do with it being basically too tight of a fit for the brain stem? If I am remerabering correctly. Can it be this severe though? I'd want to be very sure before having him undergo surgery for it.
 
I encourage you to seek out a neurosurgeon or orthopedic spine surgeon for a consultation as well.
 
The tonsils involved in Chiari are the cerebellar "tonsils" in the brain (not the same as throat tonsils).
 
I spoke too soon. The physical therapy does help and the therapist says that his pelvis is misaligned. When he gets it in alignment that helps. But the pain returns full force. And now he's been running a low grade fever for over a month (99-100)

I sure wish we could move to Switzerland! The doctors there were far more helpful, unfortunately we have to pay out of pocket there so that's out of the question. But they seem sure that he has nerve damage in his spinal cord. And that all the spinal manipulations etc he's undergone are what have made it even worse.

I'm still very concerned about a bone bruise (L5) to the spine that's lasted well over a year. That just doesn't sit right with me.

Are there NO good doctor's out there?
So we are looking to change pain management doctors (And not finding any locally), have yet another appt with yet a different neurologist on the 20th and are working on getting him seen at John's Hopkins. He's continuing his physical therapy.

I can't help but get angry when doctor's expect us to place our lives in their hanRAB and trust them considering the rate of misdiagnosis' and lack of diagnosis' yet they don't extend the same respect to their patients.
 
BTW, I just wanted to let you all know I greatly appreciate your help and advice. The support alone means so much and the advice is priceless. Thank you.
 
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