What do you think I should do next?

[Spaceystac]

Here is my story, so far... First some history, Scoliosis since childhood, not bad enough to do anything but physical therapy. Neck pain and tightness were chief complaints when I went to Shriner's hospital. I have Bone growths on my right ankle and later heel, they did a bone scan and results were normal. For as long as I can remember, I have been sensitive to different fabric textures on my finger tips. Starched sheets are like nails on chalk board, hanged dried jeans, or all clothes for that matter, they all would feel indescribably uncomfortable to the touch of my finger tips. This symptom worsens when my hands get wet and then pruney. Sometimes just thinking about certain textures can make me feel discomfort.        I also occasionally get a pain in my left arm and it starts out a dull acheyness in my forearm then spreads through my whole arm and neck shoulder area. It makes me not want to use my arm and comes with a lot of weakness. Last year I did some yoga on my wii sports game, I don't remember what the position was but it is where lay on your back then put your legs straight up, then hold up your lower body with your arms. Pretty much you are putting all of your weight of your body on your neck and upper back. Shortly after I did this, I got a sharp pain in that area and I couldn't move. I probably could have but, It was very scary and I felt like I had really messed something up. I babied it and I didn't get better by a week later so I went to the hospital. I don't have insurance so they didn't do any radiology. I couldn't even move my neck without extreme pain and all they did was give my a Toradol shot and a script for Valium ( my body was very tense and I was having intense spasms). I don't remember how long it took till I could move my neck more but I kept having recurrences. There are many more problems I have i just dont want to take all day typing this.                                                                                                                                                                       I also have had issues with my lumbar, in April 2007 I went on along car ride, in the middle of the trip my back started hurting when I was sitting, alleviated when I would lay flat. Of course I had to go home so all the way back I was stuck In the sitting position. My lower back pain was constant for the first two months after this but since have had multiple recurrences.The pain goes down my legs and on my tailbone and I have recently started getting occasional numbness in my left foot. The doc I saw originally for my low back issues  suggested a ct scan, but I had no insurance to cover it and didnt have the money to pay for it.                                                                       Now both upper and lower back hurt me sometime though out my daily activities.   Recently I have been pushing my self, working more at work and at home. I have noticed that all of my problems were not getting better, just worse. I went to the my current no insurance clinic to seek treatment of my normal issues (Ibs ,menstrual issues) with discounts on procedures out of office. I told them about my arm issues and my lower back pain and what my previous doc suggested. At first they didnt want to listen but eventually I convinced them to do a MRI.                                                                                                                                                         Here are my results: Findings: Mild reversal of cervical lordosis is noted without spondylolisthesis. Vertebral body heights are preserved without compression fracture. Marrow signal is unremarkable. High T2 signal is seen within the central cord starting at approximately C3 to T1 measuring up to 1.5 mm in diameter. Partially visualized posterior fossa is unremarkable. Impression 1. Same as above with suspicious for syrinx 2. minimal/ mild disk bulges at multiple levels without canal or forminal stenosis.3 C7-T1 bilateral facet arthropathy.        I think it says approximately after the size was due to the fact that they only did a cervical and lumber mri.      

       Here are the lumber results: Findings: Minimal right convex scoliosis is present with slight retrolisthesis at L4-5. Vertebral body heights are preserved without compression fracture. Marrow signal is unremarkable. A small Tarlov cyst is present posterior to superior S2. Conus terminates at L1-2. No lower thoracic cord signal abnormality is noted.   L4-5 Disk Deseccation with preserved of disk height are present. Mild broad-based posterior disk protrusion with annular fissure and mild facet arthropathy result in minimal and bilateral forminal stenosis left greater than right.  There is some other stuff on there but its just more protrusions and facet arthropathy.                

     So my doctor called my the day after my mri (on sunday jan 10 2010)   She told me sorry for doubting that there was something wrong with you, there is an accumulation of fluid in your spinal cord and you will need surgery to shunt your spine to drain the fluid. She said she would talk to a ns and find out more on what to do next and she said she would call me back. I did a bunch of research and realized why I have been feeling so off lately and every thing was just starting to make more sense. Then the doctor called back and said that the radiologist must have over read it because the ns said it wouldnt be causing my problems. He said no surgery would be needed only to monitor every 6 months with mri.  I have since been doing alot more research and feel like Im not getting the proper action taken to diagnose what my syrinx is being caused by. I made another app with a different doc in the same clinic and requested a mri of my brain and the rest of my spine, she said she would be glad to but that I should try to get insurance coverage first. So that is where I stand. Today I called the place that did the mri to ask if the radiologist that viewed the scan could tell if the syrinx actually ended at T1 of if it was due to the Image plane ending.   The fact that it says approximately and suspicious make me suspicious that it needs to be reviewed.      So my Q's to the people of the forum are 1. What do you know about tarlov cysts?    2. What do you think is causing my syrinx      3. Do you think think I should get a second opinion on my first Mri?  Any thing else I need to know about this condition that you could share would be great. I'm sure there will be many more questions and I am so glad to have found people going through the same stuff I am, It's a long road ahead but I'm glad to know I am not alone. I am so sorry it is so long! It is so complex, I think that's why it has taking so long to get the courage to write this. Thank you for your time!!! Sincerely, Stacey                                          

[Spaceystac]

I am sorry to hear of your conditions, but glad you found the forum...

I believe that Tarlov cysts are sometimes caused by connective tissue disorder (but like is said this is just my theory).  Dural ectasia is somewhat similar to Tarlov and is linked to Marfan Syndrome, and connective tissue disorders. And of course, many of the people with Chiari also have these connective tissue disorders.     I dont think these conditions always go togather, but I would say that in your case, they are from one common cause. Most likely, this was caused by a genetic problem with those connective tissues, so you were born with these conditions.  
  

[firestar419]

Does Chiari and Tarlov also go together. I have both .

[Spaceystac]

Jen is the girl in my profile pic wearing the orange convict costume. Just realized that, I have had that pic up forever...weird.

[selmaS]

Sending prayers to ur God Parents Family...and to you for your loss.

"selma"

[Spaceystac]

Wow so this is kinda of crazy. I haven't been on here lately, just been trying to deal with life. RacingAngel sent me that message on a day that changed my life. I just noticed that message she sent, and I am taken back.

On June 13th it was my god sister Jen's 25th birthday. I grew up around Jen and her family, her parents are my god parents, my parents are her godparents.   Chuck her father passed away on her birthday. Pronounced brain dead from a ruptured brain aneurysm at the age of 53.  He was kept on life support for the next few days to get that process taken care of. Jen and I spent her birthday in the hospital, a month ago today. Please send out your prayers to Jen and the rest of the Stevens family as im sure today will be a hard day   thanks Stacey  

[selmaS]

Hi and welcome to the Chiari/Syringomyelia forum.

May I ask do u have a specialist, not just a NS that has seen u?...I do know most times a syrinx will just be monitored bcuz they r too small for a shunt or a stent.

Do u know if u have chiari as well?...tethered cord?...or other related conditions?

I too have a herniated disk in an area of stinosis....

And I also used all my FMLA and short term medical leave and applied for my LTD and was denied 2 x's...my drs did fill out the forms....chiari and syringomyelia r not always recognized and u have to go in fighting...take a lawyer...I wish I had.Here in the states a new law was enacted to "protect" us causing this to now become a federal case...there r not too many that have the experience with it as such, so much more diff to find a lawyer after the denials.I think the abbrev for the law is ERISA....something like that.

Good luck to u and I hope u continue to post ur concerns and questions here.We r always happy to welcome a new person, but not happy for the reason u r joining us.

"selma"

[RacingAngel]

I have Syringomyelia. I was diagnosed almost 3 years ago. The regular doctors said it was not my problem. The Neurologists say do not let anyone do surgery on it because it is so low. Mine is 1.5 mm runs from T-10 to L-2. I also have Tarvlov Cysts on the outside puching on the nerves from L-5 to S-3 on left side and S-5 on the right side. I suffer from a sore tailbone after sitting a while, my hips freeze up if I stand more than5 to 10 minutes in one place and have lower chronic oain from my waist down. Sometimes my feet get servere cramping that last for hours if I do not take medicine to stop it. I also have L-1 degenrative disk, L-2 & 3 herniated disk, scoliosis, arthritis and stenosis all in the same area. My pain level does not go under a 6 at any time but can hit 10 at any time also. I am allergic to most narcotic pain medication and they have tried epidural and facet shots that do not work. In the last three years I have done 9 months of therapy, and still no relief. So I have exhausted my FMLA at work, my short term disability and am trying to get on long term disability now.
If you are working make sure you get doctors that will help you to disability some do not like doing the paperwork so they will not help you. Good luck and God bless.

[selmaS]

http://www.medhelp.org/forums/search/257?query=tarlov+cysts

here is a link when I did a search of this forum for tarlov cysts...not sure they all deal with it, but it is a place to start to find someone else with this issue...good luck

[selmaS]

My issue was the result of whiplash, but the radiologist did put on the report it could be positional ....as they can see some appear that way when lying down.....I did have PT to help correct some of it, but it never went back the way it should be.

Well, u know u can talk all u need to here : )

No worries and I would say everyone here will understand.

"selma"

[Spaceystac]

When my neck curve issue was first found, it was on full back x-rays that  were taken standing up. You might want to make sure that yours isn't always that way as well. A lot of the neck x-rays that I have had have been standing, maybe you have one they could compare to your MRI findings. So far the only problems I have really had with my irregular neck curve is the DJD its causing. I wish I could say its just positional, I would be way easier that way.  Thank you for listening to my long post you are right I really needed to get it out. They dont always understand and I dont want to bring down the people around me with my medical issues.

[selmaS]

Hi Stacey,

I also have the lordosis comment on my MRI and was told many times it is positional...bcuz we r lying down...it can be the result of muscles pulling the wrong way and PT can correct this sometimes....mine was a result of whiplash.....so ur's could be from ur scoliosis pulling ur muscles??......It can also be called soldier's neck.....those in the military when at attention the way the hold their head and pull it back can cause this to happen as well.....

I am not sure if I know someone with the Tarlov cyst......I am sure someone else will post a comment concerning it if they do : )

No worries on the long post.....we need to get these things out and to someone that will listen...so vent all u need to and get everything out so u can better understand when u do see the dr......

"selma"

[shanmomof3]

Stacey! I'm so glad you finally posted! I've already told you i think you need the brain mri but i also understand not having insurance. Just glad you posted and others here can get to know you. ((HUGS)) Shannon :)

[Spaceystac]

I have been in two small rear ender's but no serious car accidents. My pain did start getting way worse after the bad yoga move and long car ride though. I think the reversal of my neck curve is just a different type of scoliosis, the doc I saw at Shriner's Children's hospital when I was younger mentioned it back then so I'm pretty sure Its always that way. I am not sure what it significance it has though either.  I have done some research on the Tarlov cyst and it also involves CSF flows, so that is why I'm wondering If anyone else maybe has this or if it even has any relevance. I appreciate your time Selma in responding to my very long post

[selmaS]

HI Stacey,

Well, I am not too informed on syringomyelia as I do not have it, but a syrinx can be congential just like chiari or it can be acquired. A chiari specialist that also deals with all related conditions would be the best dr for u to see...getting insurance would be best even if it is state aid.......

The straightening of the cervical lordosis many times can be positional...so not sure that is nething to worry about.

So, were u in a MVA in the last several yrs, have a fall? ...or get hit in the back with something?

Always get a second opinion when u have doubts.

Not too sure on the tarlov cyst either...but will see what I can find for u......

Try and relax and know that there r way too many drs that do not understand  many of the issues of chiari and syringomyelia...it is just a matter of finding that right dr for u.

"selma:"