Blown off by TCi

[Dicon]

I can't even begin to tell you how hopeless I'm feeling right now. I was finally diagnosed with chiari (3 mm herniation but severe sx) by a NS at Tufts in Boston last month so I sent all of my information to TCI in NY, believing that I was finally going to get the help that I've been desperately seeking. Yesterday I received a packet from TCI with all of my CDs and some of my medical info along with a couple sentence cover letter saying they reviewed my stuff and feel no need to see me. So the sx questionnaire that they have you fill out that I was able to check 40 out of 45 sx doesn't matter? My long letter explaining everything I'm going through doesn't matter? Just like that they blow me off? What happened to this wonderful 2-day work up that they put patients through to get to the bottom of things? How did they look at the same brain MRI as the dr at Tufts and say there's nothing wrong? The Dr at Tufts sent me for a cine-MRI but I haven't received those results yet.

I can't believe that they didn't suggest further testing since a PT eval that I sent to them shows upper cervical instability. I have a retroflexed odontoid, incomplete arch of c1 and wear and tear at c1-2...none of that was considered. There was no suggestion for testing for EDS or TCS and my TCS questionnaire had mostly positive responses. Literally just a blow off. If the top experts in the field won't help me what do I do? Live like this forever? Make believe my sx aren't real and just move on with life until my body won't let me anymore? Wait until so much time has gone by that the damage is irreversible or I end up paralyzed then I can say "I told you so!" I can't deal with it anymore. I have not been able to work for the past 18 mos and have to spend the majority of my day in a recliner due to severe pressure at the base of my skull with spastic muscles, numbness all over, difficulty swallowing, difficulty holding my head up, and the list goes on......

Does anyone have any suggestions? Is the issue that my case is a chiari 0 and does TCI not treat chiari 0? Who does? Any help or suggestions would be very much appreciated.

Feeling desperate and hopeless :(

Di

[selmaS]

  With that info, this being an injury from chiropractic manipulation, then PT may be the best thing for u to build up strength in the neck area...

Post op my instability could have gotten worse, but I was very careful to buffer my head in the car to keep it from wobbling...and I also did the neck exercises and I really feel it is more stable now then it was b4 surgery and even right after surgery....and if it is the only issue u have then it could be what is causing ur HA's and pain..and u may not have EDS....

It could be that the chiro popped ur neck area out of joint and since it is out and not in the right place it could be pinching a nerve, and causing the instability....mayb it needs to be slipped back in place and then some PT may help build those lax ligaments back up.????

The issue with TCI is they look for Chiari and syringomyelia as main issues....they did not see that with u....and they do not specialize in rehab if that is what is going on, and the more I hear the more convinced I am that u may have Chiari that is not in need of surgery and u have had a chiro that gave u manipulations causing this residual  issue.....

I am thinking u need an orthopedic specialist one that deals with the neck.....that is who TCI was referring me to for my disk issues.....

[Dicon]

Thanks for your input.  The Dr did actually check the whites of my eyes and did explain to the student he was teaching, about how they can have a blue tint.  He also asked about my healing and actually checked all the scars from the 5 surgeries I had last year to see how they healed (and they are perfect) and he asked about bruising...and I don't bruise easily.  Wish I could answer yes to all of them. He did a very thorough exam and did seem knowledgeable about EDS. The only area in my body with the joint popping/hypermobility issue is my neck......and I believe it's totally from damage from the chiropractor. My PT who assessed my neck as unstable said that 2 of the ligaments that hold the dens to the occipital are lax.  He has written reports and even called a reputable NS b/c of how worried he was for me...and all have blown it off.  I keep saying the reason they don't see the laxity/instability is b/c they image me laying down with my head supported. I really think I need an upright 3D CT or the invasive cervical traction....thought I'd definitely get that at TCI....but was blown off.  Where else could I get these tests?  What other type of Dr would actually put his hands on my neck to assess what the PT did so that it's a Dr saying the same thing that the PT says so that they will listen?  The problem is that none of the NS have even done a physical exam on me yet they refuse to believe the PT who is probably more of a specialist in this than they are. It's all pure ego that is not allowing me to be helped!

[selmaS]

  Hi...sorry I was not on over the weekend....and I did attempt to answer this but  my service has not been the best since lovey Hurricane Sandy,...

What I had  posted b4 in regards to the beighton score is that is to look for hyper mobility...not all types of EDS have hyper mobility, and not all the joints that can be hyper mobile r tested in that test.

It may be that they did not do it correctly,....or looking at other signs....I know  u may think I am a nut, but trust me there r other ways to look at this.,..like the whites if ur eyes do they have a blue tint? Do u bruise easy, and r u slow to heal?....and do u have some joints not part of the beighton testing that do pop or shift out of joint?

  If u said yes to just 3 of these then that Dr did not know what to look for....I would suggest looking for another Dr to review u again,

[Dicon]

I'm so sorry that  you and your son are enduring this too.  It truly is a nightmare.  If only every Dr could spend 1 hr experiencing what we go through.  It's just not right!  Your poor son.  He's so young to have to deal with this agony.  I'm sure it rips your heart out having to watch it and can't do anything about it. You're smart to videotape it.  I definitely document my sx. It's so hard to prove to everyone b/c we look so "normal."  Where have you gone for your son?  I just don't understand how every patient is treated so differently even if they have the same sx and issues.  There doesn'tn seem to be a clearcut approach to this at all.  To have such debilitating sx and to be told you're not bad enough yet is insane.  Do we have to end up paralyzed before they will do anything??  I'm like you - I will not stop fighting!!!!  Best of luck to you and your son!

[Meg17lee]

Wow. My son has a  3 1/2 mm herniation w/ "crowding AND CSF blockage and worsening symptoms. And I was told he's not "bad enough YET".. Are u kidding me? I feel your pain. Im sorry to hear this. I just CANT believe how hard it is for people to get help. Im a mama bear. Hear me roar. I WILL not stop. Im documenting EVERYTHING. Videoing him sobbing w headaches and leg pains and begging for pain meds when I just simply cant give him anymore Tylenol or Motrin yet. Pics of him falling asleep during EVERY car ride (hes 8. 8 yr olds dont fall asleep in the car to go to the gas station like a newborn) I will go to the end of the earth and back to help him. The helplessness and despair I feel for ALL Chiari patients bears a very heavy burdon on my soul. Good luck. DONT GIVE UP! And document document document! Journal EVERYTHING! Any sx whether u think related or not. "Headache. Not relieved w/ pain med. Lasted 5 hrs. Nausea 3 hrs along w headache. Then dizziness upon standing. 11-2-12 at 11:34pm. Missed work." "Leg pain out of control today. Not relieved w pain pill. Lasted 8 hrs. Left work early. 11-5-12 9:35pm" "Missed my daughters recital due to headache and vertigo. She sobbed. Lasted 5 hrs. Relieved by pain pill for 1 hr. 11-5-12 3:35 pm"  Ok.. u get the idea. Be precise. Journal your sx for 2 mo. Make sure u include how it affects your and your loved ones lives.

[Dicon]

I was sent to a Rheumatologist who I was told deals with EDS....that was a joke of an apt. She dx'd me with fibromyalgia then sent me to the geneticist. He refused to do the lab testing due to my scoring 0/9 on the Beighton.  Does a retroflexed odontoid always indicate EDS or can it just occur and not be a problem?  That was 1 thing I was shocked that TCI blew me off - I thought they always assessed retroflexed odontoids b/c they know that often times it is causing a problem!  I'm at such a loss!  I've held off writing back to TCI b/c I'm not sure if they were impacted by the hurricane.  I was afraid I'd get lost in the chaos if so.

[selmaS]

  sigh.....hmmm this is a tough one....I have never heard of a geneticist refusing to check for EDS...not all types of EDS r hyper mobile....so  the fact u r not scoring above a 0 is not proff u do not have EDS or hyper mobile joints as they do not check all joints with the Beighton score test.

Do u know if u have a EDS specialist in ur area?

[Dicon]

Thanks for your input.  I saw a geneticist to be tested for EDS. After doing a thorough clinical exam he said I scored 0/9 on the Beighton scale so he felt now need to do genetic testing. He said I had no hypermobility in my joints. He did not examine my neck, though, saying it's not his area of specialty. The only one that has thoroughly evaluated my neck is a PT that is certified in spinal stabilization and he is adamant that I have hypermobility in my c-spine and there is upper cervical instability but not matter how much I tell doctors they refuse to listen to me or read the PT reports and they never put their hands on me to evaluate for themselves. Unfortunately all of the radiology that has been done has not shown the instability - b/c it's all done lying down!!!!!  Flex/exten xrays haven't shown it either.  Not sure what else to do. I KNOW that it's unstable...I can feel my skull shift and hear bone crunching as I move and that's when all the awful neuro sx happen.   I have to wear a stiff neck brace when upright but that's not even enough support to hold my head up so it feels normal.  Are there other tests that I should insist on??

[selmaS]

  Well the NL and all the  others involved in the surgery, the hospital, anesthesiologist, and what not all worked with my ins....the only one that did not was the NS....so my ins paid a portion of it and there was a small amount for me to pay...but it  was not as much as I feared......

Since ur CSF flow is "normal" then it is not the Chiari causing the symptoms....so, u need to find a EDS specialist and see if that is the cause.....EDS symptoms r very similar to Chiari....u get HA's. vision issues, the cerviocranial instability, joint pain....

  As  I mentioned b4 I was dx'd with fibro and was later told it was not fibro but EDS...I would suggest u check that out first since u have Chiari,  u just r not a surgical candidate now....

Trust me I know how u feel and if I was able to get a MRI yrs b4 I actually did, I may have gotten the same  info u did...but I had the same issues...but they did come and go as Chiari symptoms do.....hopefully this is just a flare and will calm down soon.

But with all the disk issues, I would look at EDS,.

[Dicon]

I will definitely email Dr B.  How did you get insurance to cover everything...did you have to submit afterwards?  I'm confused by that whole process.  I finally got my cine-MRI results and they say it's all normal. I'm beyond confused as to what is going on then. I don't understand how these tests keep coming back normal yet I am a neurological mess every single day and can barely hold my head up. And while in the MRI I was completely numb...my arms and legs didn't feel attached and when I got up I felt totally out of it.  How do I have these sx with no explanation? The radiologist at Tufts even said that my cerebellar tonsils are WNL so now saying I don't have chiari?  Yet the NS looked at a brain MRI and said they were at least herniated 3 mm. Every day I get a different answer based on who's looking at it.  The MRI was done for my entire spine to look for syrinx and they said there wasn't one.  It did point out a few things that I'm not sure what it means and will have to research myself I guess.  It says......mild endplate degenerative marrow signal changes are noted at several levels, as well as T2 hyperintense foci in the T11 vertebral body which likely reflect fatty deposits or hemangiomas. Then goes on to point out tiny posterior disc protrusion from T5-T10 and a small disc bulge at L5-S1.  
If I don't have chiari, is it possible that fibromyalgia really causes all these sx?  When I was given that dx I sorta brushed it off as wrong.  Could I have FM and not CM?  I am so confused and frustrated. I'm not making this stuff up. I have such awful debilitating sx but no explanation for them!

[selmaS]

  I don't know but when I went none of the NS's worked with ins....this Dr R is new and he is the only one that does.,..so not sure what is going on.....Plus much of what I had done was covered by ins, it was just the visit costs...so I paid for that just so I could go there....

Well the fund raising is not a bad idea and I have suggested that to a few others....

Deff try Dr B again and see if he can suggest something to u, explain u did not have ur CINE MRI yet and how u get them to revisit ur case.

[Dicon]

Thank you and selma for your suggestion.  How I wish I could see Dr B....why don't the insurance companies cover him?  The only Dr at TCI that my insurance will cover is Dr Rekate and it's a good, nationwide insurance.  I had emailed Dr B a while ago with my sob story and was told to hold fundraisers for myself.  I was a bit surprised by that response. Dr Rekate has actually responded sounding as if he at least has empathy.  Maybe I'll try to email Dr B again....if he would at least take a look!  ugh!!

[selmaS]

  Well I meant other then the Dr in charge since he is the one making all the changes there...just as zzzipperhead suggests, bypass him and see what Dr B would say....it may help u....

[zzzipperhead75]

i have been a patient at TCI for 10yrs.   it has changed alot.....dr.rekate is the last one there to touch me,  and i'm not real pleased, now dr. bolognese is awesome rolled up into more awesomeness!!   I would try all you can to by pass rekate and speak with bolognese..via e-mail or what not,  check out dr.oro in colorado....h.o.p.e.  hold on pain ends

CdpN

[Dicon]

Yes I had emailed Dr Rekate and then was turned over to a nurse coordinator.  I was told to send my MRIs and all the questionnaires.  She told me to send what I had then send the cine-MRI later once it was done. Probably a mistake to do that way.  I was not told to have any other testing and the "blow off" letter basically just said I'm not a candidate to go there. It didn't explain or give recommendations of any sorts.  My biggest concern is being tested for TCS if that is the underlying issue.  Guess I'll have to wait and see what Dr Rekate finds out when he returns.

[selmaS]

  Did u try to e-mail ne of the Drs directly? I ask this bcuz  I did that and that is how I knew what testing to do b4 I sent my info in.....I was emailing Dr B and he was very nice always returned an e-mail to me....and he was not the Dr I was assigned to when I finally became a patient....

  Just a thought.

[Dicon]

Hi
I just keep praying that God will direct me to where I'm supposed to go to be listened to and taken seriously enough to get to the bottom of this.  i have contacted the head Dr at TCI to ask for further information. He is in Japan right now but did say he would get back to me.  Maybe it's b/c they didn't have my cine-MRI...but most people that go to them don't have a cine-MRI first.  Just from looking at my regular brain/cervical MRI they should see the slight herniation and overcrowding....my brainstem and cerebellum are literally connected!  I'm trying very hard to trust that a path will be made for me eventually..... it's hard though. The day to day is hard. If I didn't have young kids it might not be as hard...but I feel like I'm racing against time and just want to stop the progression of sx!

[Viva001]

i know that my NS has his own protocol & requires re-testing if done elsewhere.  so you are probably right, but sometimes the only way to tell what's going on is to get in there.

[ChiariWolf]

I may be full of bird droppings but... I'm convinced all MRI's are not equal.

For example, before my first CM surgery the MRI was shot at a local Hospital. Pre-op Dr Di felt we were good to go from those MRIs. Post-Op he confessed that he had no idea how much pressure/compression was in there.
Same this time Dr was shocked once getting in there and witnessing the amount of pressure.

There is IMO a great need for better methods of testing pre-op.

Anyway, checked this thread just see if you have been able to come to a sense of peace, and if you've had time to start formulating a new plan of attack?

CW

[selmaS]

  Yes they do, and I have no idea....all I know is b4 I went they had me do more testing....my herniation was only 4mm and 6mm so not much larger then ur own....I had my CINE b4 I sent my info to them...not sure if that made a difference or not.....

  Wait to see what ur CINE revels and resend....

There is a new guy in charge up there now so, I have no idea how he does things....could be diff from when I  went....but it does not make sense to me.....

  I would contact them and ask y  u were not considered a candidate to be seen.....and ask if there was other testing needed what it would be.

Mayb u jumped the gun and sent ur info too soon, mayb u should have waited for the CINE result....I do not know....hindsight is great..only in hindsight.

So, look forward and consider it a fluke and get ur results and see if u would be reconsidered with them.

[Viva001]

did you ask tci why they're blowing you off?  what do they suggest then, nothing?  

i've gathered, from reading here, that some docs won't touch minimal herniation or chiari 0.  that is my dx, & TG my NS takes it seriously.  he also fixes other dr's botched surgeries.  the price for both is that the medical board has taken away his license half a dozen times and have him on a short leash.  that's what happens when you buck the establishment.

i hope you get some relief soon.  feel free to contact me.

[Dicon]

Thank you....I needed that!  I am trying so hard to keep the faith in all of this. It is so hard at times.
The NS that diagnosed me and sent me for the cine-MRI has a wonderful reputation, but when I met with him it was clear from comments that he made that he's not a true chiari specialist. He is also extremely conservative and tends to just "watch and wait" rather than do surgery.  I've lost the last 18 mos of my life as my life has passed me by b/c my sx are so debilitating that I have to spend the majority of my day in a recliner b/c it's the only position that gets rid of the pressure on my skull and spinal cord. I can't keep "watching and waiting." I have 2 small kids that I can't take care of like I should.  I need to do something about this.  I'm praying that the cine-MRI will show an obstruction so that the Drs will believe me.  I could never begin to make up the nightmare that I've been in.
I am going to read those scriptures right now....thank you!

[Dicon]

I just had a cine-MRI last week. I haven't received the results yet.  Why wouldn't they recommend further testing if I have so many debilitating sx?  I just find it strange that they just completely disregarded me.  I emailed them to get an explanation.  Do they not deal with chiari 0 cases?

[killerhead]

I have no answer for you but just wanted to express my sympathies. It's tough getting things taken care of and takes years sometimes to get an actual diagnosis or help.

Hang in there and keep posting in the meantime. Let us know what happens.