syringlmyela

[Dawn1214]

Hi All:
If a q flow study came back good does that mean that there would be no syringlmyela? Also does anyone know of a specialist near Buffalo NY? I read about the on in Great Neck but that is too far away for me. Thank you..Dawn

[Dawn1214]

I have a book on thyroid and a book on trigger point massage which I'm sure is similar to accupressure. I will check into that book too just to make sure it is in fact similar.

I actually tried acupunture but it wasn't my favorite thing.

Thank you for all of your information Selma, you have been really helpful and although I don't know you I feel that you are a very caring person.

Best of Luck to you and I hope we can chat again really soon and that we both have better news..

Dawn

[selmaS]

Did u ever hear of myotherapy?...there is a book by Bonnie Prudden...called Pain Erasure the Bonnie Prudden Way.

This book shows how to use accupressure...similar to accupunture.But it does focus on trigger points , and was created for fibro patients.


I also hope the thyroid calms down......I have my fingers crossed and will till the next lab report comes in.
I am PMming  to ur profile page....what Hashimoto's can do...and yes muscle pain is on the list.

"selma"

[Dawn1214]

I hope the thyroiditis calms down so you can just get on a med and feel better.
I am also hoping the nodules don't grow.
I had thyrotoxicosis and I was miserable for over a year. I sure sympathize with you.

Do you know if being hypothyroid can cause muscle problems? I have been suffering with this shoulder blade and neck problems for years and am really tired of it. I was hoping they might let up a little when my meds start regulating me. I

t is getting really expensive going to chiropractors and trigger point massages.

Dawn

[selmaS]

My thyroid issue is Hashimoto's thyroiditis...I had 2 US and the nodules were too small at the first 1 and at the 2nd grew slightly.....so I have to wait another 6 months for another US......in the meantime no meds and I am gaining weight.

I am having labs done again the end of this month.

As for the TC- I feel the pulling in my lower back....it feels like a pulled muscle that is twisting at times....Somtimes it just feels like a cramp.Which is the most I have asked about, I thought I was getting side stickers.But they wrapped around my back.

I never know what is causing what...which condition, but from some of the explanations I was given from my Endo.....I know what can be from each.But If my thyroid is flaring or it's my chiari I don't think ne one could tell for sure.

"selma"

[Dawn1214]

Thanks Selma,

I do visit the thyroid forum frequently and have a few conversations with everyone there.

I have been told my CSF is good but I don't know about the tethered cord. Where does it cause a pulling feeling?

Sounds like you have been around the block and back with all your symptoms. How do you know what is causing what. I thought I was having a hard time distinguishing between all of them.

I hope they can help you get it all straightened out. Have they checked your nodules? Have they put a name on what you have with your thyroid condition? I was "thyrotoxicosis "for quite awhile before I figured out that's what it was. I wouldn't wish that on my worst enemy. What a nightmare. I have one very small nodule that we will keep an eye on to make sure it doesn't grow.

[selmaS]

Well, I was dx'd with hashimoto's...we do have a thyroid forum here on MedHelp....so u may want to stop by for info on ur thyroid!

I am not on meds yet which is driving me nutz.....my labs r "normal" but I have nodules that r growing.

Since the size is in question....and it's been 6 months...mayb a 2nd is in order.

U need to know if u have blocked CSF...and or tethered cord...this is when ur spinal cord attaches to the spine...and can cause a pulling feeling....it can also cause Chiari!!
From what I have read, they will do surgery to detach the TC b4 doing a decompression surgery.

The TC can b found in the thoracic, but most likley will be found in the lumbar spine.
TC can also cause mild scoliosis, which I was also recently dx with.

I will PM u some links to info on TC so u can takae to ur dr appoint.

Godspeed
"selma"

[Dawn1214]

I didn't know blurry vision could be from Hashimoto's. I am actually relieved to hear that since I am waiting for my levels to go down. Sounds like we have a bit in common. I have literally been through hell in 2008 and have vowed that 2009 will be much better.

I have had so many MRI's but I don't recall a lombar MRI. I am also not familiar with a tethered cord. Can you explain those to me so I can ask at my neuro appt at the end of the month.

I like and trust my dr. at Dent. He is not a specialist in Chiari but they are one of the top notch neurological institutes in NY state and there are quite  a few dr's specializing in different issues. I know my Dr. consulted with another Dr. on my case as well as the radiologist Dr.'s there. I feel comfortable with that and I did have a previous MRI of my Chiari from another place. The Dr. who read the report had the same information but he measured it to be 7mm instead of 5mm.

So I should have an MRI every 6 months? That seems pretty frequent and if thats the case then I should be due for one soon.

I would appreciate the information on the tethered cord and lombar MRI.

Thanks Selma you are a wealth of info as well.

[Shane99]

I've heard different time frames - anywhere from every 6 months to every year or two. It depends on how large and how quick the herniation may be growing.

Since Mid-March I've had 5 MRI's! My next one is in April. That'll be 6 in one year. I've grown to hate them :).

[selmaS]

HI, I also have a thyroid issue...Hashimoto's....and the blurry vision I get can be either one!

If I remember correctly I believe I saw 6 months....Shane?

As Shane said the Chiari Institute in Great Neck is one of the preffered places to go.
Most will need to travel...some will be close to a specialist.
All drs regardless should be researched by the patient and know his involvement with chiari and do u like him/her!....it is important that u like and trust ur dr.

I was wondering, do u know if u had a lombar MRI ?...I had one and they found that I also have  tethered cord.

Keep us posted as to how u r doing.....and join us on the forum for social threads!!

Godspeed
"selma"

[Dawn1214]

Thanks for your info. You just eased my mind a lot. I had an eng done with all my testing and it showed problems with my right inner ear which could contribute to my balance problems. Numerous other tests all came back negative. I even went to a neuro opthomologist about the blurry vision and all is well with my eyes.

My neurologist has already told me he will order MRI's to check the Chiari. Do you know how often that should be checked?
Thanks so much, this is such a wonderful place for information.

[Shane99]

According to the results you don't have a syrinx.

5mm is usually the minimum level where it can start affecting your spinal fluid (not always, but a good generalization). You'll need to get regular MRI's and check ups to keep on top of that.

Some or even all of your symptoms could be Chiari related - keep in mind, that Chiari can be considered a neurological problem. That means it often goes hand-in-hand with other neurological issues. Even without syringomyelia, you could still have nerve issues, so the chronic pain in your shoulder, the numbness in your tongue and your vision issues could be either. And the balance/dizzy issues are classical Chiari symptoms

I'm sure there may be Chiari Specialist closer to you, but I don't know any specifically. The Chiari Institute is in New York, but you're a couple hundred miles from there. Just check online and see what you can come up with. Surely Buffalo or Cleveland would have someone.

[Dawn1214]

Hi Selma,
Yes I have the report. The conclusion reads: Normal CSF flow study at the cranocervical junction. No evidence for obstruction of flow is noted.

My Mri report for the Chiari

the study is of good quality

There is a Chiari I malformation with 5 mm descent noted of the cerebellar tonsils below the foramen magnum.

No brain parenchymal lesions are noted on any of the scan sequences.

The ventricals are normal in size without distortion or shift
Suici, fissures and cisterns are normal
Calvaria, orbits, and sinuses are unremarkable
No abnormalities on the duffusion-weighted study are seen.
Conclusion: normal MRI scan of the brain performed without contrast demonstrating a Chiari i malformation with cerebellar tonsil descent noted at 5 mm below the foramen magnum No brain parenchymal lesions were seen.


I have been going to Dent Neurologic Institute. They have run most all my tests. I also had an MRI of the Thorasic spine done 1 1/2 years ago which came back negagtive. Have I covered all my bases?

I do not have too many symptoms. I don't get really bad headaches like I am reading I should have. My symptoms (don't know if they are Chiari related or not) are chronic pain in right shoulder blade area (for 4 years now). Occassionl numbness in tongue, blurry vision mostly in right eye with a bit of pressure feeling and some balance problems. I live in Jamestown NY which is about 1 1/2 hours west of Buffalo. I don't trust my Dr's much in this small town but I do like and trust the doctors in Buffalo and usually see them for any problems. I also need to mention that I am hypothyroid and just recently found out that my PCP has been overmedicating me for the past 3 years which has caused many many problems. I now have an endo who is getting my medication regulated again. I am hoping that most of my symptoms will go away once my TSH is regulated.

Thank you for  your help. I truly appreciate any advice you can give me.

Dawn

[selmaS]

Hi, do u have a copy of the report?....I am not sure if that will denote if u have a syrinx or not...the CSF can still flow depending on the size of the syrinx.

TCI in NY....Great Neck is probably ur best bet. I know u need to travel, but most of us will need to travel in order to get to a chiari specialist.

There r some sites that offer travel assistance....I am not familiar with how long a trip it will be for u......in good traffic for me it's 2.5 hours.....plus I will need to stay in NY at my DD's.

Where or how far can u travel?.......

godspeed
"selma"