[wildberry2277]

I went to the doctor 2 days ago and found out that i have no been reduced to have 4 surgeries and i feel like i am losing it... I am not sure i can go through these surgeries... I am not prepared for all of this.. They want me first to go through another rib recession on left side for my TOS... OMG was the right side painful i don’t want to go through it again on the left... Shortly after that a breast reduction ... Man i am not even sure i want to do that I know they are large i am sitting at an 38 I right now... Yes i said a 38I... i know they are large.. but still... that is such a personal decision... Then they want to place a temporary stimulator in my upper neck and then a permanent one.. I am so nervous i just feel lost for words... they want all of this done asap.. again I am going through the thing where they can barley find a pulse on my left side i just I am so lost all i can do is cry.....


It also doesn’t help i don’t have a support system right now... ever since my house burned down my support system has gone to the crapper... I am sitting here all by my self with these huge life decisions to make... I just don’t know if any of these surgeries are worth my while... but they could change my life and make it much better its like a damned if i do damned if i don’t type of situation....

If you guess have any suggestions let me know... The doctor i seen i fully trust i am just really worried...

Hope you all have a pain free day and gentle hugs to all...

[dreambeliever128]

I totally get where you are coming from.

I've had a lot of surgeries since RSD and still have a few more to go.

I have had TOS surgery on the right side and know that I will someday have it on the left. My next surgery if I can get insurance to pay is a breast reduction. My Dr. has already said ok to it so after I get well from this last surgery, that should be my next. I will be glad to get rid of a few lbs. LOL One way to lose weight. LOL I'm a 34 D and that's too big for me.

You may have other issues going on up top too. I don't just have the TOS that is causing me to want a breast reduction. My whole upper area is messed up. I am going back to PT today to try and help with some of it. It might be a good thing for you. The girls on the TOS forum could give you some input on that. I know some have had the breast reduction.

It is hard when you have no support system. You do have us though. We will all be here for you if you need to vent or talk.

These are your choices though. Even though they want it, it doesn't mean you have to have it done. As far as the stimulator, I would never go that route myself. I have not seen much good come from it, on the forum or around here. I have met 3 people that had the stimulator. One is out, two is off due to making the RSD spread.

I hope you get some rest. I can hear how upset you are in your writing.

You have our support. I know it's not like in real life but at least you can talk to us.

I forgot to say, ask for blocks before each surgery. The Anesteolgist are so up on these nowadays.

Ada

[daniella]

Hi first I am so sorry. I understand not knowing what the right choice in treatment or health direction is. I was going to make a post about that. I am glad you trust your doctor but do you think it may be good to get another opinion? I have no idea but I am big on more then one though it does come with a lot of confusion. I have also been suggested the temp scs and am back and forth hundred times. People think my thought process is off to me it is just that it can help but it can come with problems too. I am sorry I am not much help. Just know that if you need a friend I am here to listen. You can email me anytime. I have my mom but other then that and a few amazing people I have met here my support is small. It does make things like this harder to face. Many thoughts and all the feelings you are having are normal though crappy.

[AintSoBad]

Jacquelina,
I'm so sorry for your circumstances... your losses, and now this type of decision.

You had one tos surgery, how has that worked? Any results positive or negative?

Why are the docs telling you this needs to be done so quickly?

(I'm in a stage in life where decisions are making me want to crawl under a blanket, I understand the feeling of panic..)
Even with surgery, (And don't folks with RSD hafto have ketamine, like that used during a surgery? to suppress the spread?) you're left with microscopic scar tissue where the nerves and vein system run through scar tissue, and "abrade" themselves during movement. The surgery can't do anything to help that.
I've had tos and rsd for 27 years. I've lost lots of muscle to the natural atrophy after the accident. Just like the good doctors told me I would. I've never had any surgery, I'm afraid to death of it!

Relax and get some time for yourself.
I feel your pain, and this news apparently has it ramped way up.

I don't know why you need to rush, I think you need some neuropsych care, if you can get it.
I hope you can.
We're all here for you anyway.


Pete
asb

[lostmary]

I'm so sorry you having to go thru all this. I also had my house burn down on my 27th birthday. (it is thought that my soon to be x set it). I lost everything but my son and my John Denver tshirt. Luckly, insurance helped me put my ouse back, but with a lot less then I had when I started. I've also had 2 scs inplanted. I am not having another one put in. I was looking to a pain pump (drs don't want to do that, I guess they don't get as much money ), but now that I've discovered Opana ER I've put that thought on hold. My 2 daughters need breast reduction, but like you they don't want to rush into it. I wish I could give you some advice, but I can't. take time and think it thru and you will make the right decision.

Hugs
Mary

[Jomar]

I would focus on the TOS surgery and decide on it first.
You know how long recovery from that can take, so I wouldn't even consider any of the other surgeries until you have recovered from the first one , if you decide to do it.

Then see how you are feeling then.
Take one step at a time and it won't seem so overwhelming.

[dreambeliever128]

It took me a year to heal from my TOS surgery, that is why I am putting the second one off for so long.

JoMar is probably right but I was just thinking if you did the breast reduction is it possible it would keep you from having to have the TOS surgery? Just a thought.

I did great with my TOS surgery. Dr Sanders did it and I was so sorry to hear that he is retiring but I do know there are more Drs. doing this surgery now then even back in 2000.

I spent 4 years in Pt before I figured out that the surgery was inevitable.

Ada

[Jennelle]

I can't imagine what you are going through right now. I hope that the surgeries will help improve your life, however my docs won't let me get the surgeries I need because they said it will make my rsd worse....have any of them talked to you about this? Do you just have TOS? I hope having them done is succession will hopefully get them done and over and then you can have a better quality of life. I think the stimulator could be a good thing...talk to others who have them and get advice on it before you do it. All I know is that it works great for some and not others. As a nurse I know some doctors are "cut happy" because they see something they can fix and so they want to fix it NOW. Just remember that you have the right to pick and choose....if it is not life threatening to wait for some of these things than wait if that is what your gut tells you. You can also decide in what order (a lot of times) when you have them done. Maybe you should try the scs first and that may help you through your other surgeries. I just hope all goes well for you and your life is better....
positive thoughts your way,
Jennelle

Originally Posted by wildberry2277

I went to the doctor 2 days ago and found out that i have no been reduced to have 4 surgeries and i feel like i am losing it... I am not sure i can go through these surgeries... I am not prepared for all of this.. They want me first to go through another rib recession on left side for my TOS... OMG was the right side painful i don’t want to go through it again on the left... Shortly after that a breast reduction ... Man i am not even sure i want to do that I know they are large i am sitting at an 38 I right now... Yes i said a 38I... i know they are large.. but still... that is such a personal decision... Then they want to place a temporary stimulator in my upper neck and then a permanent one.. I am so nervous i just feel lost for words... they want all of this done asap.. again I am going through the thing where they can barley find a pulse on my left side i just I am so lost all i can do is cry.....


It also doesn’t help i don’t have a support system right now... ever since my house burned down my support system has gone to the crapper... I am sitting here all by my self with these huge life decisions to make... I just don’t know if any of these surgeries are worth my while... but they could change my life and make it much better its like a damned if i do damned if i don’t type of situation....

If you guess have any suggestions let me know... The doctor i seen i fully trust i am just really worried...

Hope you all have a pain free day and gentle hugs to all...

[ali12]

Hi Wildberry,

So sorry that you are going through all of this right now!!

I also understand your fears and concerns and I think that they are completely understandable because of the RSD!! I had to have an ingrown toenail removed last year and I was absolutely terrified and it made my RSD worse (I developed Myoclonic Spasms). My Pain Management Doctor says that my nerves are super hyper in my leg and that I cant have any procedures done really in that limb that involves needles/injections as it will only make things a lot worse.

If I was you, I would sort the problem out that is bothering you the most first should you decide to go ahead with any surgery. That way, you can get the main problem sorted and see how you react and then go ahead with the other surgery if you respond well should you wish.

No Doctor can force you into doing any surgery that you don't want to do - it HAS to be your decision and no one elses!!!

If you decide to go through with the surgery, please make sure that the doctor performing the op knows about RSD. It is usually suggested that when having surgery of any kind with RSD, you have a nerve block beforehand and then again afterwards to try and prevent any spreading and put an halt to any increases in pain.

I'm sorry that you don't have a support system! I don't know what I would do without my mum - she has been with me through all of this and helped me sooo much!! I honestly don't know what I would do without her as no one else in my family understands RSD - not even my dad!!! As the others have said though, please know that we are all here for you whenever you need someone to talk to. I know it isn't quite the same as having someone in person to talk to but we understand what you are going through and will try and help you if we can !!

I wish I could give you more advice but I can't unfortunately. Listen to your body and go with your gut instinct - you know your body better than anyone else!!

Good Luck with your decision and please keep us posted - I know you will make the right choice!!

Alison.

[wildberry2277]

Thank you all for you words of advice...

My only problem is my major pain is in the right side where i have already had the surgery and this is where the pain from the RSD continues....Than was the major reason i went for the 3rd opinion and this is the third opinion that i should at least have the leftside TOS surgery and breast reduction... I FEEL LIKE I AM BEATING MY HEAD IN TO A WALL..... And 2 docs said so how those tings go but with in 2 years if not sooner you will need a sting.. i am like WTF...