Another cyst found on spinal cord

General What's New With You?
1

hi guys

i got my test results, and well there is another cyst starting in T5 higher then the last one,

what i have just read, its looks to be time for me to get operated on,

the cyst is flattening my spinal cord,

The explains the chest pains, even maybe the heart problems,

i still have grey matter which have not changed sence the previous MRI so atleast that not a progressive diease, but still a problem, my Chiari has un changed but this is CSF present around both herniated cerebellar tounsils and the brainstem, which i think is high fluid rate,

i have a prominent adenoidal tissue is noted within the nasopharynx, lol really good MRI machine to pick that up, so Id be off to ENT specialist, to look at that being removed,

im very anxious about this, ive been though one cyst removal and another one freaks me out,

how do i relax my brain and just not let it bug me until the time is here,

Also does it mean that now i should have my chiari looked at, its two cyst in two yrs, what are they going to do operate every couple of yrs, my thoracic spine, its rare to have cysts there, and well i have had 2, im abit amazed, i wasnt expecting that, im walking around dumbfounded.

any suggestions will be helpful

2

Hi…

So sorry you are going through all this. You are in my thoughts and prayers.

Question for you…Have you had decompression surgery??? My understanding…and I may be wrong…so other members please assist here…thanks!!

Anyway, my understanding is that Chiari is the main cause of SM…cyst…SM stands for syringmelia(sp)…
and at times…if decompression is done the cyst will shrink.

Other memebers…any thoughts on this one for Joelene???

Also have you had a CINE MRI…thats a flow study to see if your CSF is flowing well.???

God Bless, Hang in there!!!

Lori

3

Oh, no. I’ll be praying for a smooth resolution of this.

4

Joelene, please keep us informed, as I have never had dealings with SM, I don’t really know alot about it… But make sure to talk to your NS about all of it… Go in there with your list of questions and don’t walk out till your satisfied, and if he can’t answer them then go somewhere else… I pray that they can help you, and they will not have to do surgery again. Huggs

5

thanks you guys are wonderful

i havent had decompression surgery, my guess will be a shunt will be put in,
they will have to operate now,
im going to make a complaint to the hospital about my NL who sent me away in march and told me there was nothing wrong and get on antidepressants, well i knew something wasnt right, thats why i went to my surgeon inst of NL. im glad that the surgeon ran more MRIs, or else i could end up paralised,
my last cyst grew to 4.1cms before it was found because they didnt see the point on runnung spinal MRI, this one is the starting of it, but my concern is that its already putting pressure on the cord,

i will not be left, I will make sure i get something done, NZ doesnt know about these things properly, so i need to inform them. lol

thankyou for all your support
joelene

6

maybe it should of been done that first time, that the problem with nz, they dont know enough bout it,

A syrinx results when a watery, protective substance known as cerebrospinal fluid, that normally flows around the spinal cord and brain, transporting nutrients and waste products, collects in a small area of the spinal cord and forms a cyst.

A number of medical conditions can cause an obstruction in the normal flow of cerebrospinal fluid, redirecting it into the spinal cord itself. For reasons that are only now becoming clear, this results in syrinx formation. Cerebrospinal fluid fills the syrinx. Pressure differences along the spine cause the fluid to move within the cyst. Physicians believe that it is this continual movement of fluid that results in cyst growth and further damage to the spinal cord.

In the case of syringomyelia, the syrinx can expand and elongate over time, destroying the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.

As a syrinx is not a medical condition in and of itself, merely the outcome of one,

i hope that explains it,

7

Thanks Joelene… This did explain things much better… I wish you only the best quality of dr’s that can help you. I have enough pain and problems just from the Chiari, I just can’t imagine throwing other problems in with it… Abby is right… You have us to vent,chat, and talk to… We all have lots in common… and definately know exactly where your coming from. Hope you have a good Monday!

8

thanks abby and teresa

the research also states that the only way to be rid of the spinal cysts is to have decompression surgery, my question is, WHY DIDNT THEY SO THAT TWO YRS AGO, ive become quite angry, that their lack of knowledge. its put me back to where i started,

now i have to go though it al again and if not more to get things repaired. it explains why the day before i get operated on they were talking about brain surgery, I wonder what changed there mind, things just dont add up,

there will be a;lot of question when i see him next wk
i am very scared, but on the other hand i want to be fixed even just for a while, i want to ran around with my kids, not be to tired and sore where i dont even put them in after school activities, because im afraid i wouldnt be able to cope if suddenly i got bad, every day is run by how im coping, it isnt fair sometimes, i try not to let it get me down, but right now i cant help it,

THERE MUST BE MORE THAN THIS!!!

9

Joelene: Hi…

From what I have learned regarding Chiari and SM…a decompression is ususally the 1st route they go…to see if the syrinx shrinks on its own after the spinal fluid is flowing well after the decompression.

Write down all your questions before you do to the doc…bring your list…I ALWAYS FORGET MY LIST!!!LOL

also, I recently heard of a young girl (15) who has Chiari and SM…they did a decompression…but the ‘old fashion way’…they did NOT open the dura (covering of the brain)…that is the whole POINT…to make more room…the dura must be opened and a patch is placed…mine is synthetic…Now this young girls has to have another operation…I guess this time the dura will be open!!

I cannot remember…forgive me if i repeat!!! Did you go for a 2nd opinion??? I do not know about your health system in NZ…do you have national health care insurance ? can you get another opinion???

Also, when they just did the last MRI was it head and full spine???

Keep us posted and I hope you are having a good day.

God Bless,
Lori

10

hi lori,
it was both full spine neck and brain,
im going for second opinion after i see this surgeon,
in NZ we have public health system, but you wait a long time, if you want to you are able to pay private, which thats what i tend to do, this surgeon is though the public system, i have no choice, but for a second opinion i will pay private,
was private with the NL but when they found the first syrinx i was put straight into the public system as no one did the surgery private, plus i couldnt pay for it,
since i was in it, i stayed in it,

i hope that maked sence

11

oh abby you are my light in my dark tunnel at the moment, i thankyou again for all your beautiful words

12

im so sore tonight, im tempted to go to hospital and get pain relief, i cant seem to get relief ive taken ibufin had a bath, and still sore, im sure its just my cyst making things worse, but what a horrible pain,

13

UPDATE

saw surgeon today,
i dont have syrinx, i have an archnoid cyst which sits on the outside of cord, a syrinx is inside the cord, so the same as last one, i got told today that chiari and this type of cyst is not related, and my condition is congental, i have to go for another MRI in 6months to see how it is growing, he wants to wait and watch, hes givin me amitipylene for pain relief, so i will try it,

he is also sending me back to NL to talk about MS and to see if they are related, so far i cant find much on it, still searching, he told me that he wont leave me and he will look after me, so hey thats something,

i did go away feeling abit let down, i guess i was wanting more results, and action,

i had another really bad night, again, my husband came home i was stuck on the floor of the shower, nearly causing blisters, water too hot, but had to relieve pain, i took codine, paracetimal, ibufen, my spelling really bad, and finally i ending up being pain free, untill later it started coming back, so i went to bed,

so thats my update

hope everyone is well