[trixlynn]

I am so frustruated.
The srugery didn't work.
My surgeon has dissappeard. (Well he isn't seeing TOS patients till Feb.)
I have a hard toime swallowing.
My voicew keeps doing theed funky monkey.
HEADACHES!
The pain gets worse and worse.
The dosages on the pain meds keeps going up and up, stronger and stronger narcotics.
My Dr. says that he thinks I will probably be like this fpr the rest of my life, just in varying degrees.
I can't get the rest I need, because I have to run a daycare so we can keep our finances out of the red.
If feel as though I am at the center of a whirlpool of doom.
I just want to quit.
I need some help, but I don't kniow where to look.
I hate TOS
Trix

[Bi-Coastal]

Hi Trix,

I am terribly sorry to hear about your situation following surgery. You may want to seek out more opinions regarding your pain treatment and I do hope you are starting anti-depressants so that you can feel as though you will get a handle on your life.

It is truly amazing you are running a child care business. I could not have physically handled that in the best of health. No doubt, a break from that will help you if you can say,... manage others who are doing the physical activity. It would be great if you could somehow franchise your business and be able to manage part-time without the activities that MUST be hurting you now.

I don't know how much you can rely on a surgeon once he has done his 'thing'. Try to find, (through forum resources if possible), a quality, personalized approach to help you. I hope you will soon enjoy a brighter future.

Try not to be devastated by a statement from a physician who may just not know how to help you. Someone else WILL know how to help you.

I admire you for your courage to face surgery and hope you will continue to heal. I will keep you in my prayers.

Anne

[dianna]

Originally Posted by trixlynn

I am so frustruated.
The srugery didn't work.
My surgeon has dissappeard. (Well he isn't seeing TOS patients till Feb.)
I have a hard toime swallowing.
My voicew keeps doing theed funky monkey.
HEADACHES!
The pain gets worse and worse.
The dosages on the pain meds keeps going up and up, stronger and stronger narcotics.
My Dr. says that he thinks I will probably be like this fpr the rest of my life, just in varying degrees.
I can't get the rest I need, because I have to run a daycare so we can keep our finances out of the red.
If feel as though I am at the center of a whirlpool of doom.
I just want to quit.
I need some help, but I don't kniow where to look.
I hate TOS
Trix

I had the surgery and had my lung collapse. The surgery is horrible, but I would have tried anything I was in so much pain. I felt better for about two weeks after the surgery. I think the only reason I felt better was the high dose of pain killers. All my symptoms returned, the only good news is that I can hold my hair dryer above my head now, without my arm falling. My surgery was in July. I was just diagonsed with Complex Regional Pain syndrome...due to the TOS surgery. The good news for me is that my doctor says a ketamene infusion should stop the pain. A fairly new procedure that has helped many. You cant change things now. Cry get it out of yoursystem and get back up. Start over, find a new doc, and remember, your not alone.

Good luck, hand in there.

Dianna

[trixlynn]

Unfortunatley, I live in Canada, so things are a bit different here. You pretty much need a refferal for EVERTHING. Also, where I live there is an extreme shortsage of Dr. so changing pysicians is out of the question. If you hacve a doc no one else will see you.
I am going to see a counsellor today, and I have ben on anti-depressants for years as I waz diagnosed with clinical depression in 1996. My doc and I have been working on adjusting the dosages, but sometimes it is just situatuional, and you just need to work through it.
Anyway, my best friend has just moved back and she has rheumatoid arthritis, so she and I are going to work together to get better. Dr. or no Dr.
I only watch older children. 1 during the day and then I add 2 from after school. I in all honestly don't do to much, no set programs. I am hoping to shut down in the next few weeks.
Trix

[johannakat]

trix- i keep my own kids in daycare 'cause i can't stay home with them all day (2 and 4 years) so give yourself a lot of credit for helping your family.

Johanna

[LinJane]

I have 4 children. They now are 17, 15, 12 and 5. When I was diagnosed I had 3 young children and it was very difficult. It is not only physical but mental. Please try to find a way to take care of yourself or you will not be any good to anyone. Maybe there is another way to earn a living that is less strenous.

I do not know the health care in Canada but please find someone to listen to you. My surgery was in 2000. It took 1 year for pain to go away. Unfortunately, I reinjured myself last year and have been working on getting better. Don't beleive that this is it for life. That is what I thought. Since my surgery,I had a beautiful daughter who is 5 and the love of the whole family. Nothing is impossible. Think positive and see if maybe there is something, or someone else who can help. Linda

[finz]

Hi Trixx,

How long ago was your surgery ? I hate to be the voice of doom and gloom.....but aren't you supposed to really take it easy after the surgery to avoid the formation of scar tissue ?

Who is writing for the higher and higher narcotic dosages ? Will they give you a referral to a neuro or pain mgt doc who can "cover" you now that the surgery is over ?

Do you have anything like our US social security disability for if you can't work ? I'm still waiting for mine to go through, and the wait is killing us finacially, but I can't manage my own household, nevermind work.

I hope that you can find a way to make it work out. Pain is no fun

[dabbo]

Trix- I am sorry to read of the pain issues, especially after surgery. I am amazed that you run a day care. I have been watching my 17mo old daughter more now that I have been out of work for 4 months, and watching ONE is enough, and watching her too often is too much! I do hope you find the right Dr. to help you get a handle on the pain.

[tshadow]

Surviving rampant TOS is no easy job.

Since you have kids, and you are self-employed, I would definitely see an attorney and/or an insurance agent to discuss what sort of insurance you could buy now that would replace your income if you got sick (or are there too many medical records now for qualification?) Still worth a thought.

In your country, do you have a national social security disability program? What are the applications timelines? (It took mine 2 1/2 years, one rejection, before I won, and got it all. I had the best attorney, I friend I went to law school with.)

There are physical moves that are "ok" for us, and ones that make us worse.

Determine which moves you should avoid, so that you can prolong your use of your arms.

Get a GREAT Pain Management Doctor. This doctor, once all of the diagnostic testing is done, and we know what we have, for sure, then this is the doc that we spend the rest of our life getting to know. Meds, meditation, telephone counseling, water therapy, implants, spinal cord stuff, injections, blocks, BOTOX - and so much more. This is where we go to the well to figure out WHAT DO WE DO NEXT???

And God bless you sweet child. If I could, I would take this and every other suffering off the face of the Earth.

[trixlynn]

Well, according to my Dr.s, I am completely physically disabled, and should not be doing any work of any kind. My lawyer and vocational councellor informed me on friday that I am loeaving myself wide open for a lawsuit by continuing to run the daycare after they have all tolod me not to.

My lawyer and my vocational councellor are working on getiing an applicastion for Canadaian disabilty pension. I do not know the timeline for it. I do know that I am getting worse day by day.

My Dr. wants to send me to a pain clinic that is about 6 hours from where I live, but it is not covered under provincial health care. I cannot afford the out of pocket costs for it. The only pain management Dr. here is a quack. When I last saw him he told me all I needed to do was work through the book "The Artist's Way" and I would be free from all the pain I have trapped in my body.

My Dr., lawyer, and councellor all know that I will not get better until I get some respite. If I continue to care for my family of 6, and run my daycare my Dr. feels that in 6-8 months I could be bed-ridden. I understand, and appreciate this, but in the meantime, who is going to earn the extra money that my hubby can't provide? I will never get better if my kids go hungry, and I lose my home.

I need to figure out my next step.
Thanks
Trix