Tethered Cord question

[Devin215]

Hi everyone,
Just a question. I have been experiencing a lot of leg pain ( in the femur area that radiates all down my leg sometimes both other times just 1) and lower back pain ( pain level anywhere from a 4-10) and When I use the ladies room sometimes even though I know I am done it feels like I am not although I have never had an "Accident".... Could this be Symptoms of tethered cord? The pain in my legs is BAD and I am about 12 weeks post op from PFD surgery tomorrow. I asked my NS to look at my MRI from last year in May of 2009 and he says the report does not indicate anything and I have a Cd of all of my MRI's that I got of cervical lumbar and throracic spine and Brain.. Does anyone have a picture of an MRI showing tethered cord and what it looks like? I had the pain before My surgery and now it is more intense and happening about 2-4 times a week...Sometimes it even keeps me up at night. My NS said if it does not go away to come see him and he will examine me more closely and may consider doing a repeat of the Lumbar MRI... He also said Since I had fluid build up and brain swelling post surgery that if blood got into my CSF it could be irritating the nerves and Ibproufen will help and it will subside with time if that is the case.... but I have been taking that and it still is painfull.....any Advice anyone? I also have physical therapy today for my neck ( I have good range of motion side to side but not up and down) I hope that doesnt cause any more pain....????My medical situation is getting very overwhelming since I have been in Urgent care with severe (vomiting included) headaches 2x (2 Cat scans said the fluid build up is almost all the way gone) a sinus infection and a Fall outside my house on some steps... total of urgent care visits since surgery 3x... I just wanna be healthy and need some "words of wisdom:" from all of you guys please!!

[Devin215]

Hey everyone,
Just wanted to update. I have physical therapy tomorrow and am going to ask what to do with the Bulging disks and Facet degenereation of my L4 and L5  vertebre that Kaiser had found but plan tuesday night to meet with my friend and give her a copy of the reports and MRI of my recent MRIS. What can I do to talk to my physical therapist about helping me with my back. It is to the point now where I have more leg and back pain than Neck pain. It is almost unbearable. Percocet and valium dont even help nor do the heat pads or ibproufen. My toe went numb earlier (new symptom) and I have an appointment on the 10th with my NS who has told me he will go over the new MRIs with me and he doesnt see anything that requires surgical intervention. I am getting so tired of this and frustrated. So not only do I have Chiari, Bulging disks in my neck, Bulging disks and facet joint degeneration in L4 and L5, and a second opinion of Facet arthropathy in my entire lumbar spine I am just confused and am due to return to work on the 11th.... I don't think I can handle the pain since I work in a call center. Should I ask for more time off and physical therapy for my back to see if it improves first before going back to work? I am at my wits end and so tired of this pain. I already had my PFD surgery and now something else comes up and it is so painfull.... My hip if I lay on my side can pop... I even sleep with a pillow between my legs and sometimes that doesnt help. I feel like I am going crazy but trying to stay tough and work through it....what do I do? I still get tired really easy and my neck still acts up which I am going to physical therapy for now and they are using heat and ultrasound therapy and traction... its helping and the headaches are more manageable and less frequent... I dont expect to feel perfect but something isn't right with my legs and back....my blood work for rhumetory and lupus came back negative and throacic spine is normal....Any advice is appreciated... I feel like im gonna go crazy and am tired of having to demand all this stuff and proper cre from my doctors... I WILL NOT give up but feel overwhelmed....SOrry for the rant just need to vent tonight is horrible as far as pain goes it is 3:28 am and I cant sleep cus of my back and leg pain... SOS lol

[selmaS]

Great...I am so glad u r listening to ur gut!!

No u r not wrong, but be advised, since u already had surgery, many NS and orthopedists may shy away from u .

But do get that second opinion and keep an open mind to the possibility that they may not want to treat u, but will give u an opinion none the less.

"selma"

[Devin215]

Hi everyone, I have to say I am going with my gut on at least getting a second opinion. I dont think kaiser sees everything. my 2nd opinion dr is one of the top 100 orthopedic surgeons in the nation.....There is a huge difference in the opinions and ii GOT THE  reports today and copies of my MRI from most recently and in L4 and L5 they noted fecet degeneration and disk bulging.... I mean If I have it I want to know so I can figure out what to do to become healthy again.... I am not saying my NS now ***** I just want another pair of eyeballs to look too... am I wrong for that??

[selmaS]

Hi...frustrating I know, but opinions r just that their opinion...if u ask 5 drs u can end up with 5 different opinions.....I can only suggest to listen to ur gut and the dr that makes u feel like he has ur best interests at heart and go with it.

I am also wondering about surgery for a disk issue...please keep me posted on what u find out and finally decide.

ANd I am sending good vibes ~~~ and prayers for that pain to give u a break.

"selma"

[Devin215]

Hi All just an update! I am still having severe leg and back pain 2-4 times a week sometimes bad enough to keep me up at night. I  found out today I had minimal disk bulging or degeneration in l4 and l5 but my 2nd opion dr looked at my mri from may of 09 and said I have Facet Arthropathy in my entire lumbar spine at multiple levels and some spots are bilateral. My blood work from friday said I was negative for lupus and rhumetory arthritis YAY at least that is good.... so Now I have to wait till the 10th to talk to my neuro surgeon... the thing is with kaiser since they are an HMO they will only pay for something out of network that they can not preform or do... my reuglar DR said my Surgeon may just refer me back to his care since he already did my brain surgery and my back may not need surgery and if that happened he will send me to a physical medicne department or physical therapy. He also said MRI readings are all speculatory but I am having a hard time understanding how the difference between all the Drs have such a major difference in opinion where with 1 it is my WHOLE loumbar spine and the other it is only L4 and L5 and I know something like swiming is good for bulging disks since I already have that in my cervical spine as well..I dont know what to do. I talked to my surgeons nurse and told her I want Dr won to call me and she called me back and said he messaged her back and told her to tell me my throacic spine is normal and then gave the resuls of the MRI and nothing in the radiologist report was mentioned of facet orthropathy..... I am going to have dr won request a more detailed or double check of the fact joints from L1 to S1 becuase I called the 2nd opinion dr and talked to my friend who works there and she suggested that....  I will wait till the 10th and hammer Dr won I know he is trying and being patient but I dont see how the 2 opinions are so different. I am going to ask for copies of everything new and send it to my friend for review also. Any other advice anyone?

[Spaceystac]

Man that messed up, how do they just lose a MRI? I am so sorry that you have to go through that again. Good luck and you are in our thoughts!!!

[*Stormy*]

Good luck to you, I really hope they get to the bottom of this quickly!!!

[selmaS]

Hi Devin...Praying ur pain gives u a break and this next MRI is not as bad as the last experience....and that u know what is going on soon : )

Sending u good vibes with he prayers

"selma"

[Devin215]

Well everyone i got my blood work done and mris done Friday however I got a call today and kaiser. Somehow lost my lumbar
MRI but not my thoracic.. So I has to drive all the way out there and re do it. on top of thAt I am having a horrible evening in pain with shoulders head neck back and legs so bad I was crying in the MRI machine I'm not backing down but can't take much more.....I hope i get some answers my pcp dr said another 48 hours and he will have blood results I'm also gonna ask my ns to rush the MRI results since the pain is excrutiating. I have an appointment with him on the 10th

[selmaS]

Good for u !!...We have to be our own advocates to get the best health care possible : )

[Devin215]

I am sooo flippin anxious I am shaking....The lady in the radiology department told me to tell the technician what the 2nd opinion dr said and to have them mark it down on what to look for. I also called mt drs call center and had them send him a urgent messgae to request the work be done today along with my own email lol,,,,,I am not backing down I have to get to the botttom of this. Thank you selma for the advice to keep ppushing through I finally know how to beat the crap out of HMO's when they wanna play games with me.....They dont like me too much right now cus I keep calling and telling them what to do lol...at least they are doing what I say hahahaha

[selmaS]

Wonderful news Devin.......keep us posted and good luck with the MRI's and the lab work!!


"selma"

[Devin215]

hi all i woke up this morning and had a message from Dr Won and he ordered the thoracic spine also MRI....He said to request the blood work from my regular dr so I sent him an email. So now my MRI tonight is for thoracic and Lumbar spine and I confirmed that with the radiology Department. Yipee at least he is acknowledging it! He also said he will review the MRI WITH ME as well,,,,,Now just to get the blood work done

[*Stormy*]

Hi

As I explained before I have an interest in trying to relate arthritis and chiari together as I have so much pain down my neck, back and legs. I found this article and i thought it was really interesting especially if you scroll down to "Compression neuropathy", you might want to take a look: http://www.drlamb.com/chairi.htm

Good luck to you!

[selmaS]

HI Devin...just try to relax....and I wish u luck with ur appointments and getting the thoracic MRI and ESR labs.....the ESR is a type of sed rate that determines inflammation in the body. And Lupus causes inflammation.

I am praying for u!!

"selma"

[Devin215]

Hello,
Well what I did was call and leave a message at the appointment center and my NS Nuirse and they Sent him the info on what happened today. I have my NS email so I am also going to email him. I have my Lumbar MRI appointment tomorrow at 8:50 Pm and tomorrow mornign I am going to call and insist they repeat the Thoracic at the same time. They have not done any ESR??? testing or blood work yet which I am going to ask for. My other friend who had Dr.Won acknowledged her second opinion from an out of network Dr and he went from there before her surgery so I don't anticipate a problem. My mom also warned me about the Celebrex too so I will be cautious. any other advice?

[selmaS]

Hi Devin....try not to get to stressed over this until they know for sure what u r dealing with.My drs did the lupus tests b4 my chiari was found ...I still get checked on a regular basis for it...as we r prone to connective tissue and autoimmune disorders and lupus falls into that category.

Have they done the ESR blood tests to see if u have inflammation ?

RA is another most of us have....but please research the meds like celebrex I heard one person where it removed too much of the fluid and it caused yet another issue......it is a newer med, so have them keep a close eye on u if u do take it.

Is there neway u can get ur Kaiser dr to at least acknowledge the opinion of the out of network dr?

"selma"

[*Stormy*]

From what I know, it is a degenerative type of arthritis that affect the joints by the discs. You are very lucky to have found this doctor!! I have been very sure that some of my problems with back pain are arthritis related but it is extremely hard to get anyone to believe you and to get sent ot the right specialist.
I would tell your NS what this doctor said and ask to get referred to a rheumatologist as soon as you can. There is a lot you can do to help arthritis once you know what it is. Good luck.

[Devin215]

ALSO MY NS SAID TRACTION IS OK AND HE WOULD LOOK FOR SCIATICA IN MY NEW LUMBAR MRI WHICH I NEED TO SCHEDULE BUT I AM GOING TO INSIST ON A THORACIC MRI TOO THE 2ND OPINION DR ALSO SAID MY SPINE OTHERWISE LOOKS GREAT NO OTHER BULGING DISKS HOWEVER HE DID NOT REVIE THE CERVICAL OR BRAIN SINCE THAT IS TAKEN CARE OF HE WAS FOCUSING ON WHAT MY FRIEND WAS TELLING HIM ABOUT MY BACK AND LEGS.....I AM SO LOST PLEASE HELP I AM SO OVERWHELMED I AM ONLY 26 YEARS OLD I SHOULD BE HAVING THESE PROBLEMS

[Devin215]

Hi all,
well I got some weird news yesterday and today....My NS straight told me he is at a loss as to why I have more back and leg pain then neck pain now so he ordered another MRI of the Lumbar spine.... I also gave the copy of my reports from my MRI's last year and the cd with the images on it to my friend last night to have the Dr she works for who is one of the top 100 Orthopedic Dr's in the nation....He Looked at the MRi and said I have FACET ARTHROPATHY THROUGH MY WHOLE LUMBAR SPINE at multiple levels and at some BILATERAL. Which I have not done my research yet but it is a build up of fluid in the joints or discs or something and can definatley be causing my back and leg pain....apparently what they can do is epidural injections to the nerves, have me take celebrex once a day or do facet blocks which I don't even know what that is!!! He also recommended I get a arthritis panel check for lupus, rheumotory arthritis and regular arthritis done to double check everything, and that I tell My NS all this and also do a repeat MRI of the Thoracic spine to make sure it isnt there too,,,, Only problem is the 2nd opinion Dr is outside of Kaiser,,, HELP ANY ADVICE ANYONE PLEASE??? WHAT THE HECK IS THIS?

[selmaS]

Good Luck Devin !!

From what I hear they do use traction for disk issues and Lizzy said he dr mentioned it for her as well....and that was her Chiari dr.....

Looking forward to an update : )

"selma"

[shanmomof3]

Good luck devin! I would absolutely request or insist on another mri. And although the back and legs are hurting more than the neck make sure you tell him about that too! I pray it goes well and you get the answers you seek. :) Shannon

[Devin215]

Wish me luck eveyone! Got my ns appt tomorrow at 1130 am. I have a friend who works for one of the top 100 orthopedic surgeons in the states and she said he will review what MRI copies I have from last year for free to look Into my leg and back pain. On top of that I made a list of things to go over with dr won tomorrow too and my friend gave me suggegsrions to ask for a emg nerve test for my legs and back. I am also going to ask about repeating my whole spinal MRI. My physical therapist did traction on my neck today too up to 14 lbs for 5 mims and I'm
in no neck pain. It's now to a point where my legs and back hurt more than my neck I am still going to double check to see of the traction is
ok post op considering my condition with Chiari and cervical bulging discs we already know of . I will let u all know how It goes

[irishred795]

I was told not to leave heat on the area for more than 5 minutes because it causes fluids to build up in that area and can make you feel worse instead of better. I was told five minutes on and then one hour off before using heat again. I've experienced that "never empty feeling" also. I drive my husband nuts! I go at least twice before we leave to go anywhere. I've found if I lean forward after I think I'm done it helps me empty more. (Sorry if that's disgusting. It's a trick I used when I was pregnant.) My pain starts in the hip and radiates down the leg to the knee. Keeps me awake at night as well unless I sleep in the following position. I'm sleeping on the couch reclining against pillows, with a small flat pillow under my lower back, and two more pillows under my knees to keep them bent. It helps take the pressure off of my back and legs. I'm seeing a Chiari specialist for the first time on Jan 27, too. I'll say a prayer for you and your doc :-)