[Jamiemarie23]

Hey My name is Jamie and i'm 24 years old. I live in california. I'm legally disabled due to CRPS and other various conditions.

I'm scheduled to have major surgery on January 19th to remove a spinal thoracic arachnoid cyst measuring 1 foot long going up my back!

I'm scared and could use support and any advice or experience you all might have, anything would be great, good or bad. I dont like it sugar coated lol. I don't have anyone to talk to who understands and i'm overwhelmed with 5 more drs appointments before my operation.

Ive never had anything this invasive or major done before. I don't know what to expect as far as pain and recovery goes. I also wonder how long the surgery is.
I know everyones different but if anyone had any advice or experience with this type of surgery, i'd love to hear all of it! If i know what's next, i'll be able to chill out some.

So im going to try to be a brief as possible.
Firstly, i have CRPS full body- Dx'd 15 years ago at age 9. No Tx's left to try.
Large Spinal Thoracic Arachnoid Cyst, 1 foot long set to be removed 1/19.

ISSUE:
In september 2014, an MRI found a one foot intradural Arachnoid Cyst on my Thoracic Spine. The cyst is in between the layers of my spinal cord.

The cyst was found while looking for a cause to severe pinching, sharp and radiating rib/neck/upper back pain.
The pain from the cyst has now become worse than my CRPS pain, which is awful. That scares me. I can't be upright or walk too long, or a spasm starts around the cyst and it feels like vices are crushing my upper back. even laying down hurts.

FINALLY: After three doctors appointments and a wrong diagnosis; i found a Doctor (out of town) who recognized the severity of my pain could equate my pain and other issues to my cyst. This doc was very kind and took an hour and fifteen minutes to examine and inform me of the current situation with the cyst.

SOLUTION: 1/19/15 at 12:00pm-Surgery to remove the cyst, it will involve a 7 inch incision on my thoracic spine, then the removal of 4+ dorsal vertebrae to access the cyst on the cord in the middle layer. This all may change and be more invasive depending on what he finds and how bad it is in there.
After the cyst is oh so delicately excised, and removed he will put the vertebras back on with plates and screws. Im set up to be in the hospital for a full week; but i know my body, and i know it will be possibly a longer recovery because of the CRPS and other conditions. Doc wants me up and walking within 24 hours after surgery- we will have to see about that.

TERRIFIED!
I've had a lot of surgeries, upward of 40 but mostly SCS's, donor ligament replacement, Pain Pumps etc.
This upcoming surgery has me more nervous and uneasy than any other before.

The most invasive thing i've had done was a double Spinal Cord Stimulator implant done in Colorado in 08'.
Ive never had anything this invasive done before. I'm terrified mostly because i don't know what expect. I also Don't have hardly any emotional or physical support through this all. Im also nervous ecause i must remain self sufficient and be able to keep up my apartment and care myself and my service dog.

I live upstairs and i can't/don't drive so im forced rely completely on my father who is unreachable past 4pm because he's a closet alcoholic from 4pm till 6am the next morning.
The Dr/Hospital im having the surgery at is out of town, of course.

Now my last major surgery (and EVERYTHING else i went through) my late mother (a retired nurse) was with me 24/7- even when i asked her to go home and sleep during my many hospital stays. Amazing woman she was, she fought my pain with me for 12 years, even took me to the Mayo Clinic, she stuck by me until she couldn't watch me hurt anymore and took her own life in 2011.

So yeah im pretty scared. I haven't ever had anything like this done before.....
I have so many questions but i haven't found many people on NT with the sort of spinal cyst i have due the its rarity.

PLEASE HELP ME!
I hope you guys can share your stories and experiences with this type of operation. Any and all advice or emotional support you have in any way would be so very greatly appreciated. Im pretty much on my own with all this, Which totally scares the C*** out of me.

Hope you are all doing okay, and i really hope to hear from you soon!

[Lara]

Hi Jamie Marie,

I can imagine why you are scared about your upcoming surgery especially as you are already dealing with such a painful condition with the CRPS. I know I would be too.

It sounds to me as if you're going to need some type of practical help and support once you get home from the hospital.

Don't be scared now about needing to start walking 24 hrs after the surgery. That sounds daunting, but it's like that for all surgeries. I'm sure the nurses will just get you standing and doing a few steps in the beginning and then gradually increase from there.

Have you been given any handouts or advice about what to expect after surgery? Will you have someone to drive you home once you're discharged? Any physio organized post surgery and when you're at home?

[EnglishDave]

Hi Jamie Marie,
I know what it's like living with an arachnoid cyst, although mine is in my brain and not causing the imminent trouble yours is. Also, drop a line to Angelita who has a symptomatic cyst at the moment. No-one should be left to deal with things like this alone.
I cannot offer advice about your op, but understand your trepidation with regard to your CRPS as I suffer extreme Neurological Hypersensitivity along with numerous neck/spine damages.
But, as you say, you have found a superb doctor and seem to be in the best hands medically. You will need physio tailored to your pain problems. As for the emotional support, I offer myself to be part of that. Severe pain is very lonely and you should.know there are people on here who understand.

[Angelita]

Hi Jamie, like Dave I've got an arachnoid cyst on my brain. It is causing me a lot of problems at the moment. I did read that it can occur in the spinal cord region also. I just wanted to say that you seem like a really strong and positive person. I'm really sorry you don't have any support and you must miss your Mum a lot. She's always with you so don't feel alone.

I'm in the UK so I can't really help with offering any groups suggestions or advice line numbers but all I can say is try your best not to be frightened, The Docs wouldn't be doing it unless they really had to. You know the drill with blood clots n walking so there's no getting out of being mobile asap just try your best.

God Bless x

[bluekrikit]

Originally Posted by Jamiemarie23

Hey My name is Jamie and i'm 24 years old. I live in california. I'm legally disabled due to CRPS and other various conditions.

I'm scheduled to have major surgery on January 19th to remove a spinal thoracic arachnoid cyst measuring 1 foot long going up my back!

I'm scared and could use support and any advice or experience you all might have, anything would be great, good or bad. I dont like it sugar coated lol. I don't have anyone to talk to who understands and i'm overwhelmed with 5 more drs appointments before my operation.

Ive never had anything this invasive or major done before. I don't know what to expect as far as pain and recovery goes. I also wonder how long the surgery is.
I know everyones different but if anyone had any advice or experience with this type of surgery, i'd love to hear all of it! If i know what's next, i'll be able to chill out some.

So im going to try to be a brief as possible.
Firstly, i have CRPS full body- Dx'd 15 years ago at age 9. No Tx's left to try.
Large Spinal Thoracic Arachnoid Cyst, 1 foot long set to be removed 1/19.

ISSUE:
In september 2014, an MRI found a one foot intradural Arachnoid Cyst on my Thoracic Spine. The cyst is in between the layers of my spinal cord.

The cyst was found while looking for a cause to severe pinching, sharp and radiating rib/neck/upper back pain.
The pain from the cyst has now become worse than my CRPS pain, which is awful. That scares me. I can't be upright or walk too long, or a spasm starts around the cyst and it feels like vices are crushing my upper back. even laying down hurts.

FINALLY: After three doctors appointments and a wrong diagnosis; i found a Doctor (out of town) who recognized the severity of my pain could equate my pain and other issues to my cyst. This doc was very kind and took an hour and fifteen minutes to examine and inform me of the current situation with the cyst.

SOLUTION: 1/19/15 at 12:00pm-Surgery to remove the cyst, it will involve a 7 inch incision on my thoracic spine, then the removal of 4+ dorsal vertebrae to access the cyst on the cord in the middle layer. This all may change and be more invasive depending on what he finds and how bad it is in there.
After the cyst is oh so delicately excised, and removed he will put the vertebras back on with plates and screws. Im set up to be in the hospital for a full week; but i know my body, and i know it will be possibly a longer recovery because of the CRPS and other conditions. Doc wants me up and walking within 24 hours after surgery- we will have to see about that.

TERRIFIED!
I've had a lot of surgeries, upward of 40 but mostly SCS's, donor ligament replacement, Pain Pumps etc.
This upcoming surgery has me more nervous and uneasy than any other before.

The most invasive thing i've had done was a double Spinal Cord Stimulator implant done in Colorado in 08'.
Ive never had anything this invasive done before. I'm terrified mostly because i don't know what expect. I also Don't have hardly any emotional or physical support through this all. Im also nervous ecause i must remain self sufficient and be able to keep up my apartment and care myself and my service dog.

I live upstairs and i can't/don't drive so im forced rely completely on my father who is unreachable past 4pm because he's a closet alcoholic from 4pm till 6am the next morning.
The Dr/Hospital im having the surgery at is out of town, of course.

Now my last major surgery (and EVERYTHING else i went through) my late mother (a retired nurse) was with me 24/7- even when i asked her to go home and sleep during my many hospital stays. Amazing woman she was, she fought my pain with me for 12 years, even took me to the Mayo Clinic, she stuck by me until she couldn't watch me hurt anymore and took her own life in 2011.

So yeah im pretty scared. I haven't ever had anything like this done before.....
I have so many questions but i haven't found many people on NT with the sort of spinal cyst i have due the its rarity.

PLEASE HELP ME!
I hope you guys can share your stories and experiences with this type of operation. Any and all advice or emotional support you have in any way would be so very greatly appreciated. Im pretty much on my own with all this, Which totally scares the C*** out of me.

Hope you are all doing okay, and i really hope to hear from you soon!

I can't imagine what you are going through with all this and wish I could help. Just try to be positive...I'm sure you'll get through the surgery perfectly and who knows .. some of the professionals that you meet through this may have insight on ways to either cure your pain or alleviate it! I have to believe that soon there will be a cure for this horrible disease...and my daughter and you and all the other people that suffer with it .. will be back to normal!