help I am at a loss!!

So I went to the specialist yesterday. Not only do they believe that I have tethered cord, TOS, but I also have a herniated disk in my lumbar spine and it seems as though my odontoid bone is pointing slightly backwards which is seems to be causing by brain stem to kink???? In other words my spinal cord instead of being straight it has a bend in it which is causing all of these horrible symptoms to reer their head again is this possible??? God I am so ready to give up I don't even know what to do any more. I now have to go see another specialist in Jackson Ms, someone who supposdly studies the craniocervical junction for what they call a cranial base evaluation, all I know is I am in so much pain and thought I may have been finding answers and everytime I turn around it is something else. If someone could tell me how to post a picture of my mri I would so that maybe someone could tell me if this looked normal. The doctor who referred me said that it looked mild but he would hate to miss it but I have seen mris of patients who went to tci to have surgery for it to be fixed which were not nearly as bad as mine. I don't know I am scared all I know is I am gettin worse and I need help!!!!

[selmaS]

Can u share u u have been to and where u have been referred...we have another member in MS and we r not aware of all the chiari dr out there and it could help her!

As for ur issues, not being a dr it is hard to say as so many of us have addition issues going on...I have heard of the kinking b4, but can not add much more than that.

With ur odontoid bent in the wrong direction causes overcrowding...and that is not uncommon to find in chiari patients.

Do u know do u have a CSF blockage or a syrinx.....tethered cord....EDS?....

It is possible if u r stressed right now for ur symptoms to flare and feel like u r getting worse.How long have u felt like this?

"selma"

[shanmomof3]

actually there are 3 mississippians on this forum. Me, youngwife, and russell (i cant ever remember his screen name lol) sorry selma had to keep you straight lol ;P       Anyway to my knowledge and believe me i have done the research, the only dr in MS is dr Weibe in hattisburg that rachel has gone to. There is a dr in jackson that has done chiari surgery but is not what i consider a True Chiari specialist. JMO! Candace i'm going next month to wisconsin to see dr. Heffez because i want a true specialist to evalute me. I'm so sorry your having problems but know that we truly understand and will offer any help we can. I like selma would also be interested in where you have been and what you have already had done. -- Shannon

[Candace5440]

I am actually from Albany Louisiana I actually traveled to ms to see dr Wiebe because I found him on the thread of drs here on the forum. I do not have a syrinx. Dr Wiebe just had the mris done of my thratic and lumbar spine finally done yesterday and there is no evidence of a syrinx. He does feel that i do have all the symptoms of tether cord although it cannot be seen on my mri that is how the herniated disk was seen in my lumbar spine. I have been unable to work or function at my norm since sept. this has been going on for a while. I do know that stress can cause my symptoms to flare and I have been trying to keep that to a minimum but how can i when i can't even help my family afford the bills because I can't work because I am in so much pain and no one knows why. I did have decompression surgery done in december of 2004 and had a csf leak which had to be repaired so they had to reopen me less than a week later. The dr. that I have been refered to in Jackson is Dr. H.L. Herkey III at UMC. All I know is I am tired and scared!!!!

[selmaS]

Thanks for letting us know who u saw and who u r referred to.I knew there were several people in ur area, just memory is not the best....and please do not just take the "list" as suggestions of whom to see ...u still need to research the drs...the point of the list is so u have a starting place to begin ur research for the dr right for u.

The list is made up of drs that members have been to and liked....not all may be true chiari specialists ....but have treated chiari patients.

May I ask when u had ur most recent MRI's of the brain, cervical , thoracic and lumbar spine?

"selma"

[youngwife]

I would seriously consider finding a Chiari specialist.  It's just worth the time and money.

What about Texas?  Would that be a possibility??

I am so very sorry...so many are in similar situations with little to no hope of getting help.

I will be in prayer for you!

Rebecca

[shanmomof3]

Candace i just contacted youngwife (rebecca) and hopefully she will get on soon and may be able to give you some more info. I'm so sorry i know it can be VERY trying and heartbreaking living with this condition every day! I pray you find some more answers soon! --Shannon

[Candace5440]

Texas would be fine too! I just need some help! As for my last cervical and brain mri they I had one done in october of last year they did a lumbar puncture on me and my opening pressure was 26 my symptoms got better for about a week then they got alot worse so they did another mri of my brain and cervical spine in november to make sure the lumbar puncture did not make it worse. In that time I switched nl because the nl I was seeing just admitted to me that my case was too complex for him an referred me to another nl. The new nl was the one who requested the new mris he told me there was no change in the chiari but he did see the kink and he thought that was what was causing my DAILY headaches numbness tingling in hands, feet, elbows, ankles, knees, scalp, back, and face. Pain in neck, shoulders, face, spasticity in legs, dizziness, lightheadness, passing out, nausea, night sweats, shortness of breath and fatigue not to mention the brain fog. I am problem leaving out a few. He sent me to a ns who told him to do another spinal tap three weeks later and I had an opening of 16 my new nl said that he thought it was high the first time because the first nl did it while I was sitting up and that was not the correct position while the second time it was done while I was laying on my side which was the correct way for it to be done. So I have no idea. I have never had I cine mri only a mri with contrast which they say is fine. I just know my body is telling me something is not right and I am not crazy and my whole family is suffering because of this not just me. And I want to feel somewhat normal again I know I will never be like anyone else but I did have three and half good years after my surgery before my symptoms started to return and the last year they just got worse and worse the last 5 months have been madness.....

[selmaS]

U may want to ask about a lumber and thoracic MRI's to rule out a syrinx or ne other disk related issues as I recently found these bulging disks can block CSF and cause many of the same symptoms....so it is worth looking at.

There was a chairi NS in TX, and I know there r some on the list, but again, I can not say I heard nething about them. I also thought, and with my memory could be wrong but felt the NS in TX was a pediatric chiari specialist...some will not see adults.

DO research them...the other option if u can travel is Dr O in  CO or even Dr Hamp in Nashville, TN.....not sure if I have Dr H's name spelled correctly...but 3 members have seen him...Dr O...just has a really great rep for chiari...and I had the pleasure to meet him and hear him speak on chiari  and was impressed...as well by his poem at the top of the forum.....

"selma"

[Candace5440]

I had the lumbar and thoracic mris done yesterday and dr weibe did look at them i did not have a syrinx and he said that the herniated disk in my lumbar spine does not look as though it would be causing any blockage but it was not done with contrast. Do you know what dr oro charges to review mris. Dr. Hamp is a true chiari specialist?

[selmaS]

I did not have Dr Oro review for me, but if I am remembering correctly it may have been around 40$...I could be off, but I think it was something like that.I am sure if u call they can tell u in advance what the cost would be.

Shane and 2 other members had surgery by Dr Hamp...still research and ask questions so u know if the dr is right for u.....the drs personality should also be considered...if u don't like him u may not trust him...and u need to trust ur dr.

"selma"

[Candace5440]

Thank you so much I may have to call dr oro and se about him reviewing it for me. I appreciate it all.

[shanmomof3]

Dr. Oro's fee is $40. Selma was right (as she usually is) you can go to his website and download all the forms you need, but be prepared it takes up to 6 weeks for him to review the case. If you need any other info let me know i'm happy to help :) Shannon

[selmaS]

Hi...I just wanted to check with u to see  how u r doing?....did u call Dr O?

"selma"

[Candace5440]

no not yet! I have to figure out hoew to copy my mris. I only have one copy which i have to keep because i do have to go see the other dr in jackson also so i am gonna try to to copy the disk so i can try to send it to dr o. I have been in bed for 2 days so the past 2 days have been kinda rough. Thanks for checking on me...

[selmaS]

I am sorry to hear u r in bed fo r 2 days, but rest is the best thing when u r not feeling well.....I am sure u will be able to copy the disk...My DD's fiance did it for me, so I know it can be  done, wish I could tell u how he did it....

I hope u r feeling better soon : )

"selma"

[shanmomof3]

Hi candace. I'm so sorry you've been down for a couple of days :( I hate those days! Listen to selma and REST! Hope You're feeling better soon! Shannon

[Candace5440]

Thanks for the concern ladies! This is the website for the ns I should be seeing soon. I wanted to post it so ya'll could check it out! I have not see him ye so I do not have a personal experience yet. There are two drs listed but I am not sure if the second sees adult patients but I am going for a cranial base evaluation checking for craninocervical instability yay.... Well here is the link!
http://neurosurgery.umc.edu/spinal.html  
By the way happy late birthday Shannon sorry if I am late!!!!!!

[selmaS]

Well the second dr sounds and or looks like a chiari specialist as it is most of his interests...I pray he takes adults : )

Let us know how ur testing for the craninocervical instability goes!!

"selma"

[Candace5440]

From what I understand this is the professors that Dr. Wiebe studied with. He had referred me to Dr. Harkey. So we shall see.

[selmaS]

Well part of his specialty is the reason u r going to him...so I am sure u r in good hands, But u must be the judge of that when u meet him.....I always say, u must be comfortable with the dr and his credentials......if there is no faith in the dr that is not a good thing at all u need to have that confidence in him.

I am praying this all works out for u

"selma"