sallyb sakky...

[sallyb]

Some of you may remember me...some may not. Anyway, I have had Firbromyalgia since 1983. I also have herniated disks, cervical and thoracic. T8/9 has spinal cord compression. My pain is very bad...usually to the point of crying. Yes, rainy weather is more painful. The pain ranges from about mid back (T8/9) to the floor. Occasionally it is also in my upper back, neck and head...but, it is the lower pain that almost makes me feel chlostrophobic. Does anybody else feel that way? Sometimes I feel panicky because I feel to be smothered with pain...with no escape.

My doc just doubled my Ultram to see if it will help me. I am not sure if it is helping me a little, or if I am just too tired to care. Makes me feel like dirt. Doesn't do much for depression.

sally

[Sara1979]

I can definitely relate to that feeling of panic when my pain is so out of control and I have no means to lower it.

It sounds like you are in a lot of pain for Ultram to control. I am taking the max dose of 400mg. It used to work well for me but I have been taking it for 8 years so it does not work for me very well. I am not sure what the next step will be for me.

You should definitely talk to your Doctor about b/t medication in the very least. It sounds like you have been through a lot so I am assuming you have already gone the Tylenol, NSAID, Anti-Seizure, Anti-Depressants, Biofeedback, etc. If you have I would say that it is time to move into opiod therapy. Have you been to a pain clinic?

[wildpinky]

hi Sally, i remember you...i dont have anything to offer that would help you...

i hope you start feeling a little better soon...

(((hugs)))...

pinky

[cindybear]

Hi Sally,
I could never forget you !!!! Ultram !!! That is M&M's.....Has it ever worked for you...It has never worked for me...It was a joke, I would of just use tylenol.....Would your Doc give you something a little stronger...maybe something , that would last 24/7...I mean that is your pain..Why suffer...Glad to hear from ya' Sad to hear your in so much pain...Hugs, Cindy

[sallyb]

Yeah!!! I rember both of you!!! Been a long time. Glad to know that you are both here.

Yes...the Ultrams are like M&M's. At first, the doubled dose was unsettling because I was not use to it at all. At least, it gave me something else to think about besides the pain!!! But, 6 days later, I am just fine except for being a little weak....and hurting as usual. My doctor claims to be a PM doc, but I don't think he knows what he is doing. Went to a neurologist to see if he could help me, and he said that what I need for pain management is a Rheumatologist. Have an appointment for that on 10/31...long haul. But, at least I can have hopes of getting relief before long. Yes, I suspect I will be put on much stronger medication. It has been so long since I have been relieved by anything. That is why it feels like it is smothering me...I can't get away...panicky. Fortunately, I usually am able to fight that claustrophobic feeling. It doesn't feel good mentally.

My daughter, Katie, just graduated from high school, and then went immediately into the Army. They gave her a $67,000 college bonus for going. She graduates from basic training on the 13th...in South Carolina. My mother is paying to fly me there for it. I can't take the wear and tear of the road...too painful. I cannot wait to see her. Miss her soooooo much!!! After that, she goes to A.I.T. (Advanced Military Training) to learn how to be a Patriot Missle Launcher. Sounds feminine, doesn't it? Ha! Ha! Anyway, at least that position will keep her off the battlefield, and into a safe place for missles which battle, or protect, from a distance. I spend a lot of time writing her, and that also gives me an opportunity to loose "self". That is the only way I have found to escape pain. Loose "self".

Thanks for responding to me. It really feels good. I hope your pains are, and will be reduced...maybe fixed!!! Wouldn't that be great???

Love, sally

[sallyb]

Hey, Sara. I did not mean to NOT address you. Just got excited to see people that I remember. I appreciate your response to my writing. It is good to have a caring friend again. I forgot how good it was to have the forum. Nothing like talking to people who understand what you are talking about.

My real name is "Sarah". "Sally" is a nickname. Something in common.

Glad to have a new friend......sally

[cindybear]

Sally,
OMG, A missile launcher....Tell her thanks for protecting us for the next couple of years..She is very brave and deserves all the thanks she will be getting...My son just got out of the Marines not to long ago...It's just a big worry, no matter what jog they have..He was loading bombs into the jets, right before they took off and bombed IraQ....He did that for 18 months...And I was worried sick the whole time...Even though he stayed on the boat...I think my eyes was glued on TNT or TNN...Hope you get better care at the other docs...Hugs,Hun. Cindy
P.S. I'm very proud of your Daughter

[sallyb]

Thanks, Cindy. Yes, I am a very proud and worried mother too. I will tell her thank you for you. Tell your son too. I even have a tendency to walk up to military personell that I see on the street to thank them. It is a huge sacrifice which I did not even consider when I was young. I think the kids of today are made of something more than I was. Not looking forward to the possibility (I hope not) of her being sent to Iraq, or some other war zone. I don't think her occupation warrants that. I rest in that thought. She has enlisted for 4 years active, and 4 years reserve. I hope not....

Got to leave to go see my mother in Slidell (going with my son). I hope to get back to the forum this evening if the road doesn't do me in.

Love, sally

[uvamomb]

Sally,

I've been to PM, but I have found that the best person, for me anyway, to manage my pain is my physiatrist. I'm probably spelling it wrong. She really knows here stuff and also does botox injections, refers to p.t. and keeps in close contact with my progress there. Just another thought for you. I want you to get some relief!!!
Hang in there,
Kathy

[wildpinky]

Congrats to you and your daughter, Sally...tell thanks from me too...you should be very proud of her...my son is in his second year at college with Junior standing...he could graduate a year early but doesn want to...he is on a full scholarship and even gets spending money throughout the whole year from the college...

good luck with the Rheumatologist...my daughter was diagnosed with Juvenile Rheumatoid Arthritis when she was in the second grade and is now 23 and never outgrew the JRA, her Rheumalogist is great...he makes sure she isnt in that much pain...so i am keeping my fingers crossed that your will help you too...

i hope you are having a nice weekend...

[Boopers]

Hello Sally,
It breaks my heart to read that you are suffering so much. In this day and age, with all the different meds on the market, you shouldn't be in so much pain. It sounds like you definitely need to be on opiates for sure. I am so thankful that I have such a good PD as he makes sure that I don't suffer. Before I found him, I was like you. My mind was so consumed with pain, that it took over my life. I ate, slept, and breathed pain. Thankfully, no more. I pray that you get the relief that you need.
Congrats to your daughter. I know you must be very proud.
I hope you find pain relief soon.
Love,
Linda

[Quahog]

Hello Sally,

Yes I also remember you and I am sorry to hear that you are still in severe pain. I agree with the statement that Ultram is nothing but M&M's but if they are helping you than that's great, if they aren't then you should definitely ask your doctor to put you on something else. In this day and age there are so many pain medications no one should have endure untreated pain.

congratulations to your Daughter for completing Basic. It is difficult and not everyone makes it through. I must saying hearing about it brought back memories for me when I went through it. I am curious do you happen to know where she will be stationed for her AIT (Advanced Individual Training)
I myself knew quite a few patriot missile operators and with my MOS (Military Occupational Specialty) I worked side by side with them as I provided power to the missile battery. I was a 52 Delta a power generation mechanic. Of course this was just a fancy name for someone who tested, setup and repaired electrical generators, and welders, etc. Anyways, I digress. I wish you and your daughter all the best.

Take care.

Glenn

[Peter B]

Sally,
I don't know you, yet I know you. I won't go into details about myself. Suffice to say that I've had 23 operations in my life. Everyone here knows that if 23 surgeries were performed you can probably quadruple the number of tests and procedures.

I have seen much. YOU NEED MEDICATION. Your doctor(s) should be ashamed of themselves for letting anyone who obviously needs relief, suffer. I have been relatively fortunate with regards to medication, but I've met quite a few who aren't.

It almost makes me want to cry as I think of the 4 or 5 people I have met in Dr. offices who were in abject misery. Believe me when I tell you, I have met quite a few 'fakers' so it's easy for me to tell the difference. (for the most part). These people I speak of were living in ****. One gentleman I met was so embarrassed by his appearance, he would hide behind a wall in the Dr. office. His back was so bad he wore a full upper body brace that kept him slightly hunched and the sweat would pour off of him. That's probably why he hid. He told me how much meds he was on and the miniscule amount made me sick.

I hope that you get relief as soon as possible. The physical pain is bad enough. The mental torture it causes is unbearable. I know.

Pain free days,

Pete

[sallyb]

Thanks Guys and Gals!!!

Kathy and Linda...I appreciate all of the concern. Forgot how good it is to talk to people who understand the problems. I have a deep feeling that the PM doc that I go to is into ***. After so many meds that do nothing, it appears that he is just enjoying it. Can't imagine how he can call himself a PM doc with a good heart. Guess that sounds like sour grapes, but it is hard to think any other way. Can't wait for 10/31/06 for the Rheum doc.

Pinky...congrats on having such a great son. Good kids are hard to find sometimes. You should be proud too.

Came back from Fort Jackson on Saturday, with my chest puffed up like a bantam rooster...so proud. The military knows how to make a graduation memorable. It was beautiful. When I first saw my daughter, I stared at somebody running towards me for a few seconds before I realized who I was looking at. She is not thinner...just firmer...but, very buff and neat as a pin...a far cry from the rebellious teen that I remember!!! Her batallion was the "Honors Batallion" due to the fact that they won every competition except one. She was very impressed with her very rough drill instructor (who I would not think I would like), and appreciated all that she taught her.

GLEN (52 Delta)......Katie is one of only 3 in the 1200 graduates that went to Fort Bliss. She is at odds with all of the free time and freedom. Sure she will get used to it and realize again that it is only minimal freedom compared to civilian life. Thank you for having served our country. I am proud of all who have...gutsy...wonderful...what makes the old USA what it is.

Peter...23 ops!!! So hope that it has helped you. My neuros say that they do not want to operate on me because the T8/9 buckles towards the inside, and it must be operated on through my chest...moving majoy arteries, lungs, heart...and whatever. But, one neuro gave me the name of a surgeon to go to if I ever decide to. Pain is bad...but, I can honestly say that that it is not bad enough yet to put life on the line. Guess I will get there since it progresses...but, not yet.

Love to you all...............sally

[Tbackpain1]

Sally,

First, congratulations on your daughter's graduation! And please, give her a big "Thank You" from me for serving our country. You must have been so proud of her.

Second, I don't know if you are a candidate, but there are surgeons here in the US that now do Thorascopic procdures, not the open thoracotomy fusions of the past. Dr. Curtis Dickman (Barrow Neurological in AZ) and Dr. Jho (Pittsburgh, PA) are the two who have pioneered the techniques (they both do them slightly different, but the result is the same). If you would like their contact information, please let me know. Both will do film reviews for you, and let you know if you qualify for their procedures.

I live with T-spine pain every day (T7-T8, T11-T12 are the worst, but all of the T-spine is arthritic and discs are degenerating). For me, the crushing, wrap around pain of the ribs and abdomen is the worst. But, I've had very good results having Botox injections to treat the spasms, and they are minimized quite a bit (I've been able to reduce my intake of BT meds significantly). I agree with the others that Ultracet/Ultram is like M&Ms for some degrees of pain, but if they help you, it's possible that you could take a higher dosage. Before the Botox procedure, I was taking the max per day (400 mg of Ultram), but I now only take 150 mg/day. I've been able to reduce the amount of Norco per day as well. The big thing that helps is having a long acting base medication (MS contin, Fentanyl patches, Oxycotin, or Methadone) to keep your pain at a much more managable level. Please, talk to your doctor if you can about being on a LA med. The change for me was dramatic and very positive, once we found the right med and dosage.

Best of luck to you.

Theresa

[sallyb]

Thanks sooooooo much for that info on thoracoscopic spinal surgery. Now...to figure out how to finance it...or if I will even qualify since I also have COPD!!! But...it is the best news I have heard in a long, long time. Wonder why no neuro has ever told me about it!!! I have found a lot about it on the I-net. Suppose these docs keep up??? I know that my Mom will foot the bill. Just hope it is not such that would make her last years struggling ones. I will try to get all of that info before I ever consider approaching her on the subject.

And...Botox!!! Shows how little I have kept up with things!!! Didn't know that it was now used for chronic pain! I will ask the Rheum about it.

Thanks.....sally

[Tbackpain1]

Hey Sally,

No problem :) Glad to pass the information on. When I first started with the T-spine stuff there wasn't any option besides thoracotomy fusions, and I am definitely not a candidate for that...I don't like the odds of paralysis. And waiting till you can't walk or control bodily functions is just not high on my list of things to do. So, I keep researching and reading, and researching some more. Once Dr. Dickman and Dr. Jho started publishing about their work, I was ready to jump out of my chair and shout "YAHOOOOO!" Now, there are alot of doctors that are doing them, but they're docs that have been studying for years, and are learning the procedures either here, or with other docs that have studied over-seas, since they're waay ahead of us when it comes to spinal medicine.

About the insurance stuff, and getting the surgeries paid for. I also consulted with Dr. John Regan (California), who has an extensive background with poineering technologies (expert in MISS, principal investigator in ADR studies) and he was the first to use a new technique called Video Assisted Thoracic Spine Surgery (VATS). You can actually find video on the net of his procedures (though the web addy escapes me atm), which is graphic but very informative. Most of the docs I spoke with were more than willing to work with me, since I'm dealing with the Workman's Comp system. They were willing to give me the documentation to support my claim that this is the right procedure (provide written testimony if it went to court), and accept what the WC carrier paid. Considering that the thorascopic procedure isn't anywhere near as expensive as a thoracotomy fusion, one would think any insurance carrier would jump at the choice, but they just don't have any idea. If you're dealing with private insurance, I don't know, but I would think you should be able to appeal and provide them with info if they needed it. My local PM doc and OSS were willing to support me if I had the procedure done, and would do all of the follow-up treatment necessary, as long as the treating surgeon gave them the guidelines of what they needed to look for. With the thorascopic procedures, there certainly alot less after care and wound checks necessary, since the incisions are so small.

I am absolutely amazed at the things that are coming in the near future with regards to spinal medicine in general, but especially with the T-spine. For so many years, t-spine folks were told there was only one thing to do...sit and wait till your spine was junked, then we'll do surgery and hope for the best. The big issues that you face as a T-spiney is that doctors have trouble accessing the offending parts...its alot of work (and risk) to open up, unless its a posterior procedure, its uncommon (though more common than some doctors think) so lots of docs don't have a clue what to do to fix it, and it's an inherently stable region with alot of architecture keeping it that way; once they start removing parts, they are setting it up to be like a Jenga tower...pull out the wrong part and the whole thing will collapse.

About the Botox...I was able to get quite a bit of literature on using Botox to treat musculoskeletal disorders from my doc, but I did a bit of research on my own. Alot of the papers out there are about using it to treat various types of dystonia, but the principles are the same when it comes to using it for pain management. If you knock out the offending muscle's ability to spasm, then you won't have the pain. The most important thing is that the doc use some type of EMG guidance when injecting (using a Myoject needle system, which connects to the EMG machine). They need to make sure that they're putting it in the right place. It was wierd not to be able to feel my ribs for a couple of months, but it was a blessing that they didn't hurt at all.

Feel free to PM me if you want links to some of the research papers/articles. I'm in the process of recompiling all the data I've posted over the years, just in case the tech folks can't restore all of the data from the forum crash.

Take care of youself.

Theresa

[sallyb]

You are a life saver!!! Please do not loose all of your studying. Unfortunately, when it rains, it pours, and my printer is not working. Unable to do anything about it because expenses seem to be peaking at the moment. But, as soon as I can, I will visit Mom in Slidell, and use it as soon as she gets on line (still picking up the pieces from Katrina). Please keep them handy. If you haven't (and you probably have), put your info on a new thread. I am sure that others would like to know about it too...that is, unless I am the only stupid one in the group!

thanks soooooooo much.....sally

[exitwound]

"Doubled my Ultram" after 23 years of pain? That is an OUTRAGE!

[Sara1979]

Hey, Sara. I did not mean to NOT address you. Just got excited to see people that I remember. I appreciate your response to my writing. It is good to have a caring friend again. I forgot how good it was to have the forum. Nothing like talking to people who understand what you are talking about.

My real name is "Sarah". "Sally" is a nickname. Something in common.

Glad to have a new friend......sally

Ooops. Sorry I didn't respond. I got so used to the board being down I haven't checked. Congrats to your daughter. My husband is actually in the Army if you have any questions.

[sallyb]

Exitwound...you're telling me!!!! I generally run a 7, 8, or 9 on the pain guage...depending on a lot of things. Guess 10 is crying screaming, and begging to be shot. That is why I am finally going to a Rheumy on the 31st. I have high hopes for that.

Sara...tell your husband thanks for the sacrifice. Thank you too. I would imagine it is hard to see him go when he is called. Katie, my daughter will hopefully be coming home for 2 weeks at Christmas!!! They are hoping that her group will graduate from AIT by then. But, Katie is having a very hard time with her breathing in Fort Bliss, Texas. She is a below sea-level girl who breathes well with lots of water in the air. Think its kind of thin there. When she ran 3 miles, it took her 2 minutes longer, and she felt like she could not breathe. The memory what it is...LOL...I will try to remember that you are the one who can answer Army questions for me. Thanks.

sally