Tethered Cord

[Lifesvr7]

Is tethered cord evident on a regular MRI or do they need to do special views or something?

[selmaS]

  I know what u mean,wishing u luck <3

[Lifesvr7]

It's the doctors who refuse to even test. Ill ask the rheumatologist but assume she wont be familiar. Hopefully one of the specialists will agree to test me cuz no one else will.

[selmaS]

  I did not feel I was hyperflexible either, and on my own I can not contort like those pics u usually see...I can do a few of them, once the nurse did it to me, I never would have tried to do it b4...

But the reason  many with EDS do not appear hyper flexible is their muscles are tight and do not allow us the ROM as the muscles try to work over time to help hold us together....this adds to much of the pain we have.....

Were u tested, or just assuming bcuz u r not flexible?

U will have to look for a rhuematoid Dr familiar with EDS....my Chiari NS and NL were the ones that DX'd me with EDS....

  

[Lifesvr7]

I wish you did too lol. So far anyone I have mentioned EDS to says its not possible because I'm not hyper flexible per their standards. I don't have difficulty healing and ECHO was normal. I do feel like joints come half way out all the time and have the shoulder hip thing you describe. It may also explain why I would have issues with my sacroiliac junction, but since I don't fit the mold and there s no test, no one will even consider it. I did get referral to rheumatologist to look in pot joint pain, but assume she will claim nothing is wrong with me like all the other docs. I feel bad for all the people who just believe everything the doctors tell them and don't know to ask questions or to call them out on inconsistencies.

[selmaS]

  Oh I know how u feel, if I sleep on my side I wake with shoulder or hip pain, my joints pop out of joint, and then I try to roll over...I find sleeping partially on my side is best using a roll or body pillow behind me so I do not have all the weight on my side, but I am not flat on my back either...

I actually am sleeping better since taking a antihistamine b4 bed....not sure y, but I have less nights with insomnia....or waking to go to the bathroom...or bcuz of pain....if I do, I fall asleep faster then I was able to b4...

Wish I knew of something else that may help u.

[Lifesvr7]

Well I would but I can't lay on my back. Lol I think it's SI dysfunction from surgery or something. It's literally like my bones lock up. Bone pain is excruciating and I literally can't move. It's so hard to explain. If I lay on my side, even with pillows between my knees or a wedge behind my back, my hips and mid back start hurting. I have not had a real night sleep since surgery in 10/11. I have spent many nights in a recliner but now that doesn't work either. It ***** when you can't get comfortable EVER yet you are plagued with debilitating fatigue.

[selmaS]

I forgot to mention, I was told to help with the lower back pains when sleeping, to place a pillow under  ur knees....this reduces the pull on ur spine and lower back...give it a try : )

[selmaS]

  I know Dr H  is well respected in the Chiari community...the conference he hosted had speakers and they were- Dr Bolognese, Dr Oro, Dr Menzese,Dr Bejjani, those r the bigger names I remember...and I know there were more....so, u can judge by the company they keep and by who is willing to join them in a conference like this....so I was impressed by him as well. Only know someone went to or asked about this Dr u mentioned...I will try the search thsi community feature to see if I can locate the thread for u.

I am almost 14 yrs older then u, so I have had my symptoms longer too....it seems the longer u have symptoms the longer it may take to feel relief or possibly have some residual issues as a result.

This can be very frustrating, but worth going slowly and ruling out ALL related conditions so u do not have post op issues.

[Lifesvr7]

Yeah. Dr Oldfields used to work at NIH before going to UVA. If you remember the member who used Dr Oldfields I would be interested in an opinion.

Lower back is a mess. It's where I had surgery and where back spasms and awful locking bone pain thing keeps me from sleeping more than an hour or two at a time and makes MRIs excruciating. Laying on back or stomach are extremely painful. Legs, I have severe pain in knees and feet at times. No frequent UTIs or anything as severe with bowel r bladder as it seems u have.

Like most, I just want a doctor who is not going to push all my symptoms off onto some other undignosed condition. They could be thyroid, chiari, cord, autoimmune or all of the above and I need someone willing to face the challenge of finding out which.

So frustrated.....grrrr.

Still trying to get all my records for NIH together but think I would make a decent candidate. Ill call them to follow up tomorrow. If Selma thinks he's good, he must be lol

[selmaS]

  Many of the Chiari NS's do not work with ins, but the surgery can be covered if u appeal to them....they cover the cost....something u have to discuss with ur ins and the finance office at the Drs office...

The constipation can be associated with TCS , but if u r sure it is med induced, not an issue then.

The bladder issues, sounds like me....I went yrs where I never felt the urge to go, but would get pains down my spine...and by pain , I was bent over  it was intense...I had many UTI's and to this day I have issues going so much and never feeling like I quite emptied....I also have to have the urethra dilated as it closes with scar tissue...so when I do go, it is slow...stop and go...ugh

I have also had IBS as a DX for many yrs, I still have issues, but they r better with taking probiotics and magnesium...what a difference.

How are u legs and lower back?

I have heard the Oldfield name b4, I think another member went to him....but I really do not know nething more. Sorry I wish I knew more of the Drs....if u get in for a clinical study with NIH Dr Heiss I think is how u spell it, is a very good Chiari Dr, I heard him speak back in '08 he was the host of a chiari conference I went to...so that is an option if u can get in.

[Lifesvr7]

My arm was just in front of me. I may have bent upper back slightly, but not more than an inch or two.

I have "dimples" or did when I was little. One on each side. Not what I know as a sacral dimple in the medical world. As for bowel issues, no. Just constipation likely caused by pain meds (taking fiber and softener s). Bladder is another issue. I was out on Vesicare a few years ago because I always felt like I had to go and once I had to go, I had to go NOW or there was danger of leaking. They assumed it was just bladder spasms. All the NS know I'm on it and no one has made any link.

I have not looked into Dr Rosner. Dr Henderson is the one I called and his office said they don't take insurance. I sent info to Dr. Oldfield at UVA and working on NIH. Do you know if there anyone good at Hopkins or Georgetown?  I'm northern Virginia. About 1.5 - 2 hours NW of DC.

[selmaS]

  When u extended ur arm was it just in front of u or above ur shoulders?

As for TCS, do u have a sacral dimple? Bowel and bladder issues?

It is sad but most Drs uninformed about Chiari all tend to be jerks about it...ugh....so typical....egos get in the way that a patient may know a little more about something then them...sigh...

Same goes for those treating Hashi's....I had an endo that would not look at nething other then TSH, and u need all the other results to know if it is an autoimmune thyroid condition....so y do they back burner us?

Ur description of a rubber band is very much how I feel it too....have u sent ur info to Dr Rosner or Dr Henderson?...not sure where in VA u r....but they are in NC and MD....and may be able to offer insight .

[imkeko]

Oh my goodness! I feel so bad for you!!

I'm sorry I have no advice for you. I am just starting on my journey with Chiari (being diagnosed last month...been suffering much longer....) but I feel you a million percent on the stupid doctors that don't listen and the miles of red tape!

I hope you can get some answers and soon, and an amazing Dr to help you too.

[Lifesvr7]

Forgot to add...I always have felt like my spine is a giant rubber band. I bend my neck forward, my mid/lower back feels like I'm tugging on it. I assumed that was normal....then again, I thought the shooting pains in my head when I cough, sneeze and poop was normal too since everyone has said nothing was wrong with me all my life. I have not really done much research on TCS yet. So I have no clue what symptoms are.

[Lifesvr7]

I don't know what I have lol. I have been having a very hard time with all kinds of symptomsand am dealing with stupid doctors while I wait to hear back from Chiari specialists re appts with them. I'm still in purgatory and still have a body that is psychotic and bi polar (your favorite).

In addition to chiari, like many, I have back issues. Had microdiscectomy L5-S1 in oct 2011. Have had various issues since then. One that doesn't make sense is the pain I have in my thoracic spine. MRI 8/12 showed to "tiny" discs that according to everyone could not possible be causing my pain because everyone my age has those!

Tonight, I reached SLIGHTLY, not even my full arm extended and had sharp pain that was so bad it literally made me scream like I was in a bad horror movie. It only lasted a secondary and of course caused me to freeze in p,ace when it happened. When I went to move again, it happened again, another high pitched girly scream and this time, I went instantly into tingles from waste to knees. Again, only happened for a second. Tingles went away. Pain is still there but at a much lower level. It's like it's just DARING me to move wrong.

I'm so tired of doctors. The NS I saw this week was lock and not a specialist so I didn't expect much, but certainly expected more than I got. I asked him if there was anything I should consider an emergency symptoms...he said no. I said that I had heard of people having drop attacks etc and he laughed and said no one has drop attacks from chiari. If they have drop attacks, they better find out what's really wrong with them. Jerk. That was after he told me chiari had nothing to do with me wisdom and CSF being blocked wasn't really a big deal because a little was still getting through.

Endocrine....yeah, your thyroid is lumpy and may have nodules and possibly Hashi's but unless you are true hypo in TSH etc, we don't treat. We went round and round about the controversy...then I gve up.

I think I will have to find some other specialists. UVA is taking so long to get back to me. NIH, I'm still gathering paperwork, the other one in!arylnd doesn't take insurance and I'm not rich. Maybe ill try Hopkins or something next.

I'm just tired of fighting through the tape already and just started. I feel like just giving up and letting Jesus take the wheel lol I had already been fighting for a few years with my back and now I am starting all over.

This is going to sound AWFUL and I mean NO disrespect to anyone who has been affected by one, but I almost wish I had a brain tumor.,.then people. AND DOCTORS would get it AND all the decisions would be so clear cut,

Sorry for another of my famous novels...but hey, you asked lol

[selmaS]

  Hi most times TCS is not visible via a MRI., so other testing not views are needed.....

Looking at the Brain MRI and the Lumbar can indicate TCS with the spinal cord being longer then normal and the brain stem being elongated....in addition a urodynamics test is done on the bladder, and there is a list of questions....

Many times TCS is call Occulta TCS bcuz it is not seen, Occulta  means hidden,....so it may not be seen,....

Have u been checked to see if u have a sacral dimple....

Do u feel u may have TCS?

If so, what symptoms do u have?