September 9th surgery

[mabeckoff]

Hi Melissa

I think I went every 2 days for a week, then every 3 days, then once a week for my arm. It was 5 months total. You can do the arm exercises at home in between sessions. Walking the wall is one of them where you use your fingertips and walk and stretch up a wall and lift your arm.

The PT sessions with the hot and cold packs felt good. Don’t get too used to it, you will want to go everyday.

After about 4-6 weeks, they will probably put you on the arm bike. That’s the one exercise that really helped out my upper back. If a patient elects not to do PT for scoli surgery, they would never know about this. It will toughen up your paraspinal’s in your thoracic area.

Do not judge this doctor, you have never met him. Besides, I never saw my arm surgeon after my decision to have the arm done. There was no reason to. These arm surgeons do 5 arm surgeries per day, they just line them up and bang them out. After what you have been through, this will be a piece of cake.

Ed

Thanks Ed for the PT advice. Regarding the shoulder doctor, I just want the best and he is the best so that is what I will judge him on , not his personality.
The TENS unit as well as heat and the massage would be wonderful every day but that is not possible. I use the arm bike now. I feel it in my back

[mabeckoff]

I am not doing well. I am so stressed out.None of my drugs are helping anymore. Moving to CA was the worst decision that I ever made. We cannot get a house. I am still tired of living without my things. If it was not for my son, I would have no reason to live.

[rohrer01]

Oh, Melissa!

I'm so sorry you are feeling this way. I wish I could say something to comfort you. Where are you living? Did you rent an apartment? I'm sure your son would feel very sad to hear you feel this way. Pain can really zap a person's joy. Is there any way you can talk to your doctor and maybe switch pain meds? Maybe it's just what you are on. I hate to even suggest this (because it is soooo hard to get off of), but have you considered the fentanyl patch? It may be that with your other problems, like fibromyalgia, that you may need long term pain management. Sadly, my experience with fentanyl is that my body became accustomed to it and I needed more and more breakthrough medications. It's sooo difficult to manage chronic pain. I know that you are fused from top to bottom, but is there any way you would be able to get a morphine intrathecal pump? I know that they would have a hard time getting past the fusion mass, but that might be a better alternative to fentanyl if they can do it. It's supposed to kill all the pain without making you woozy because very little gets into your bloodstream. Just some thoughts to throw your way.

My daughter has a word, schnooky. It means I wish I could make everything better for everyone. So I'll end my reply this way.

Schnooky,
Rohrer01
((((HUGS))))

[jrnyc]

hey melissa
tried sending you a PM...your mailbox is full....

jess

[JenniferG]

I am not doing well. I am so stressed out.None of my drugs are helping anymore. Moving to CA was the worst decision that I ever made. We cannot get a house. I am still tired of living without my things. If it was not for my son, I would have no reason to live.

I can't tell you how sorry I am to hear this. With everything you've got going on, it's not surprising that you're feeling this way, you're only human. I think some serious relaxation is called for, turning your mind off the outside problems and back to thinking about healing. I know this is difficult, but I think the stress is causing your fibro to flare up; that would be my uneducated opinion, and your health is more important than anything. The fibro seems to be your biggest problem, you will be gradually healing from your surgeries but the stress will be making your fibro worse. When is it again, you're seeing the fibro specialist?

Stress has a LOT to answer for.

*hugs*

[Doodles]

Melissa--
Just checking--how are you doing today? I know it's been so difficult for you. I wish the move had proved a more positive thing for you. Perhaps in the end it still will. Don't give up hope on that. I can't recall if you've tried anti-depressants at all. I know you have tons of stuff already you have to take. With the myriad of physical difficulties you've had, I don't know how you could do it without some. Praying for some better days for you. Janet

[jrnyc]

hey Melissa
i hope you have a therapist to talk to...
if not, i really hope you are able to keep a diary...
sometimes it is helpful to go back and look at previous days...
weeks, months....it can be amazing to see what we have
survived in the past...how we got thru something before, how much
things changed....
if the doctor doesn't want you on an antidepressant because you
are on Cymbalta, can you get a referral to a specialist...?
psychiatrists are usually better at prescribing such meds than
other doctors are.....
??
it's so hard to move to a new state...i think it is particularly hard to move
from east coast to west...
i really hope CA turns around for you....
i hated northern CA when i was younger,
then i got to know southern CA later on, and i fell in love with it!
the weather alone is heaven!
i hope it all changes for you....

jess

[debbei]

You are in my thoughts Melissa. I hope things improve for you.

((Hugs))

[mabeckoff]

Thanks everyone. I answered on Doreen's thread

[Confusedmom]

Hi Melissa,

A few thoughts...

One, moving to CA might not be the worst thing. After all, it did get you to Dr. Bederman, which probably will turn out to be for the best in the long term.

Two, I think Cymbalta is an antidepressant. The newer version of Prozac from Eli Lilly, if I'm not mistaken. Sometimes people who take these SSRIs need to increase the dosage at various points. I know several people (including myself) who have used these at various times, and they can be remarkably helpful--IF you are taking enough. Aside from removing that feeling of despondency, they actually can provide some pain relief. I would definitely ask your doctor if you are on the right dose of this.

Major surgeries often cause depression. Not just back surgery, but open heart surgery, etc. They are a basic reason for depression, even outside of other things that might be going on in your personal life. It is not something to be ashamed of--happens to many, many people--but definitely needs to be addressed.

Outside of drugs, some of the things you can do are: listen to music, meditate, take walks (outdoors, preferably), read novels, go to movies. All these things can help distract you from the pain and stress.

You seem like a very warm-hearted and brave person. I wish you the best!

,
Evelyn

[mabeckoff]

Hi Melissa,

A few thoughts...

One, moving to CA might not be the worst thing. After all, it did get you to Dr. Bederman, which probably will turn out to be for the best in the long term.

True and my son is going to most wonderful school

Two, I think Cymbalta is an antidepressant. The newer version of Prozac from Eli Lilly, if I'm not mistaken. Sometimes people who take these SSRIs need to increase the dosage at various points. I know several people (including myself) who have used these at various times, and they can be remarkably helpful--IF you are taking enough. Aside from removing that feeling of despondency, they actually can provide some pain relief. I would definitely ask your doctor if you are on the right dose of this.

I am taking 120mgs of Cymbalta which I believe is the highest dose

Major surgeries often cause depression. Not just back surgery, but open heart surgery, etc. They are a basic reason for depression, even outside of other things that might be going on in your personal life. It is not something to be ashamed of--happens to many, many people--but definitely needs to be addressed.

Outside of drugs, some of the things you can do are: listen to music, meditate, take walks (outdoors, preferably), read novels, go to movies. All these things can help distract you from the pain and stress.

I try to do these things or at least some of them

You seem like a very warm-hearted and brave person. I wish you the best!

,
Evelyn

Thanks Evelyn

[rohrer01]

Melissa,

I read your post on Doreen's thread. The medication idea was just a suggestion. I know many "lifers" including myself, according to my doctors. It depresses me at times and I try to wean off. I have a thread about weaning off of fentanyl...it was the worst. If you decide you need lifelong pain management I would personally opt for the intrathecal IF they can do it.

I know the meds aren't good for me and right now I'm trying to exercise to reduce my need for them and it is working. But that could all change with the next cold front. I'm pretty sure I have fibromyalgia, too. I test positive for ALL of the trigger points, but my docs don't like to give that label. They just treat the symptoms. I had one doctor tell me he thought I had it and I told him I thought that it was a term for pain of unkown origin and he AGREED with me! That was my scoli doc, by the way.

It doesn't matter what causes it. It is a real phenomenon, and unless you have suffered with it, it sounds hard to believe. Sometimes during a flare-up my hands hurt so badly that I wake up wringing them, and when I try to stand my feet hurt so badly that I can barely walk. I KNOW that this isn't scoli pain for sure. So I believe you are in a tremendous amount of pain. It only takes a little stress or change in the weather to set it off. Your body has been through a ton of changes in your musculature, let alone the pain from surgery and the stress it causes on your body!

For me, I have to decide on quantity or quality of life. It's a hard choice sometimes. Especially as I lay here typing this and my scoli pain hurts so badly that I want to take a pain pill and am trying to withold until morning. So these are my struggles. They are not nearly as severe as yours and you have a right to feel crummy! But distractions do help. I have found that to be true. They don't take the pain away, but sometimes I can skip a pain pill because I was busy doing something and although hurting, was distracted enough to put it off.

I'm thinking up random things again. I do that a lot. But, I think I've been on here long enough that you all have pretty much figured that out by now.

Take Care,
Rohrer01

[jrnyc]

hi Melissa
i was just thinking that you are in for a whole load of stress coming
your way...i am surprised that anyone would come to stay with you, as
a houseguest, if they knew of all the surgeries you have had, and of the
chronic pain you have been suffering with for months...
it sounds like they are not thinking of your situation...
but..."temporary problems call for temporary solutions"...
i hope you can remind yourself to repeat over and over....
"they won't be staying forever, they won't be staying forever..."
kind of like a mantra, for the days when the stress and strain
become completely overwhelming!
i wish there was some way to have these folks reconsider their timing....

i agree with the recent poster who wrote that CA has brought
good things, most obvious of all... your surgeon....
and the weather must be a joy as well...
but it does sound tough.....moving to a new state, having
surgery and being in constant pain.....
sounds like you can't exactly get out and do things, go places, make new friends...
so it sounds both isolating and depressing....
instead of being able to enjoy a beautiful new environment with all that
sunshine, warmth, and ocean, you are indoors dealing with so much pain...

i suggested getting a consult with a psychiatrist, because they are best at
knowing what meds can be combined with what....
i know Cymbalta is often given for fibro type pain...
IF there is any medication that can "boost" Cymbalta's antidepressant
effect, it would be a psychiatrist who would know what it would be....

i do think that anyone in your shoes would feel depressed, trying to cope
with all you have been through...
bet when you start to feel better physically, you will start to feel better
emotionally and psychologically....
i hope that happens really soon!

jess

[rohrer01]

Melissa,

I agree with Jess on the psychiatrist part. They are trained to know which antidepressants work best for pain. Tricyclic antidepressants are often used for pain as well. Things like amitryptaline or nortryptaline. I tried both of them in my late 20's, but didn't know about my heart condition and reacted badly to them. But I know some people that they work wonderfully for. There are also medications that work on pain and help you sleep that are antidepressants. I don't know their names right off hand.

A psychiatrist may also be able to hook you up with a therapist who deals with chronic pain patients. I had one for awhile. They teach you techniques to calm yourself when a pain cycle begins so that your body's natural responses to pain don't have a chance to kick in and make it worse.

Is there any possible way that your family can be helpful to you instead of stressful? You can look at it as an opportunity to get some help and possibly get some things done that you aren't able to do yourself. Hey, if they are insisting on coming at a bad time, then put them to work and don't play the hostess! After all they are "family" NOT guests. You could tell them that they have great timing because you need this and that done. AND they will be company, too. Just trying to help you see a positive out of this situation. Maybe they can even help you househunt! I don't know how much you are able to get around, but most realtors have online tours of houses these days, then you can send the family out to go look while you get some peace and quiet. LOL It's like killing two birds with one stone.

Anyway, I'm just trying to come up with more ideas for you. Jess' post made me think. I think she's like the forum's psychologist and almost always says just what we need to hear. Bless her heart! I'm pretty sure that Jess is a "lifer" as well because of the bad condition of her back/sacrum AND the damage caused by Lyme's Disease. I'm sure she'll correct me if I'm wrong.

Take Care,
Rohrer01

[LSKOCH5]

Hi Melissa - Just to add to Rohrer's post, obviously meds have different effects for different people, but Nortriptyline has been the one med which has worked for my daughter's fibro/after-affects of Epstein Barr. We have had to increase up the dose every so often, but it's been the most effective. Esp helpful is that it is at heart an anti-depressant, bc who wouldn't have some problems w mood/depression after relentless pain for a year? Amatriptyline nor Gabapentin worked, (& the Gabapentin had horrible withdrawal symptoms). The only other med which they wanted to try adding in was Topamax, which the neurologist's office has used w great success for fibro.
I keep you in prayer, hoping that things begin to ease up for you. And I love Jess' thoughts re family visit - "I'm so glad you're here, could you help me w this..."
Guide them to help you & allow yourself to be the nurtured one intead of nurturing, for once.