New here...and looking for support

[LiveLoveandTrust]

Hello everyone, I'm looking forward to getting to know ya'll! I thought I'd share my story and ask a few questions.

The whole big mess started my Junior year in high school in 2003. I naturally have very lax ligaments and I ended up stretching out my shoulder ligaments a good deal on the swim team (I was a backstroker). My mom took me to my PCP who sent me to an orthopedic who diagnosed me with multidirectional instability. This was causing radiating pain down my arms and my shoulders to sublux (partially dislocate). After a couple rounds of failed physical therapy I had surgery on both shoulders, a year apart in April '06 and '07. The pain went away and my shoulders were successfully stabilized. I felt great! That is until 2008 when I had an acute bout of pain in my left shoulder. I freaked thinking I messed up my shoulder but I was told by my PCP that it was just bursitis and I was sent to PT. 6 weeks into PT I was still in the same amount of pain until one day when I woke up and it was just gone. Poof! Someone said it may have been a blood clot that passed but no one really thought more of it. I was sent to a orthopedic who said my shoulders were fine and to go back to PT. I did that again. Ugh. That's when I started getting muscle spasms pretty regularly along my shoulder blade and up my neck. My PCP sent me to the chiropractor. It didn't help so I was sent to a neurologist who diagnosed me with TOS.
Now this is where I'm most frustrated because it was never really explained to me at this point what TOS was and how serious/progressive it could be. I was sent to a neuromuscular physical therapist which didn't work and I just dropped it because no one seemed to think it was that big a deal. I dealt with the pain with my flexeril and tramadol which didn't need to be used all too often until I realized that I wasn't really having good days anymore and my bad days had gone from being around a 4 on the pain scale to about an 8. I was sent for an MRI of my neck; this was now in summer 2012. I was sent for 2 rounds of PT again this time focusing on TOS since the PT thought I had it and I was discharged after 4 months for lack of progress and symptom progression.
They found 2 minor bulging disks and a slightly impinged nerve so I was sent to an orthopedic who specializes in the neck. I was told my neck was "absolutely not causing the pain" and was sent to a neurologist. The neurologist said everything was absolutely normal and that pregnancy can make things hurt a little... wow, really? My pregnancy did this? Someone call the Guinness World Book of Records because I just had the longest pregnancy in history. She wanted to send me to a hand surgeon or a pain management clinic which I refused because it was ridiculous. What I wanted were answers not pain meds. She sent me to "the shoulder guy." Yet ANOTHER orthopedic. In the meantime my PCP sent me for an MRI of my brain to check for MS and then off to a rhematologist to check for any "weird connective tissue diseases." Keep in mind, I have told ALL of these doctors that I was previously diagnosed with TOS and ALL of them had said they were not qualified to diagnose this but would send me to someone who could. I went to the new orthopedic who said that he thought my neck was causing the issues and my shoulders were anatomically perfect. I asked him to please give me a referral to someone who could diagnose TOS.
Of course, he sent me to a Vascular Surgeon who does not diagnose TOS so I ended up seeing a different one. The first time I went down to his office (over an hour away) he was stuck in surgery and I was seen by a medical student and a PA. They took half a medical history and told me that bilateral TOS symptoms didn't happen so I probably didn't have it but to feel free to come back again. The medical student told me that it was all in my head.
I did come back. I was seen first by the medical resident who said I didn't have TOS because I was not losing my pulse but when the doctor came in he stated that the resident did it wrong and I clearly did. I now have an appointment to see the Thoracic surgeon that will be doing the surgery with the Vascular surgeon and they will schedule a first rib resection and scalenectomy in January. I've been told there is involvement of the artery, vein and nerve.
So FINALLY I have my answer. It took years because of my other medical issues but they finally got it. The weakness, fatigue, loss of dexterity, the pain and the numbness will with any luck be a thing of the past.
What I want to know is about your experiences with surgery. I've read past threads but there are a few things I would really like to know.

Firstly, has anyone had any experience with the surgeons at Yale New Haven Hospital in CT? Unfortunately, I can only see a doctor in CT and most do not take my insurance. I do not have the funds to go out of state :-(

Secondly, can you share what medications you were taking both in the hospital and upon discharge? I am currently a lactating mom and I need to be able to research when/if it will be safe to give my baby my milk.

Thirdly, what can I expect pain-wise and function wise week by week? Specifically, how able will I be to pump breastmilk? Shower? When will I be able to hold my baby (she'll be 15 months old by surgery time)? How much sleep will my body crave? I need to know these things so I can plan to have help for my significant other. He and my mother will be able to be with me at all times but they will need breaks too I'm sure. I know it will be exhausting to watch after both me and my daughter so I want to make sure I schedule other people for breaks but I was wondering how far out to do this.

Lastly, any suggestions for me to keep me occupied? Eventually I'm sure I'll be at the point where I won't want to sleep all the time but my arm will be in a sling. Any suggestions about ways to keep myself busy? A girl can watch only so many movies!!

If you've managed to read this far, thank you. I really do appreciate it. After all this time it's good to get it off my chest and share the sense of relief I have that I'm not crazy after all.

[Iris]

do you mean a vascular doc and thoracic surgeon at yale new haven? If so, PM me.

Originally Posted by LiveLoveandTrust

Hello everyone, I'm looking forward to getting to know ya'll! I thought I'd share my story and ask a few questions.

The whole big mess started my Junior year in high school in 2003. I naturally have very lax ligaments and I ended up stretching out my shoulder ligaments a good deal on the swim team (I was a backstroker). My mom took me to my PCP who sent me to an orthopedic who diagnosed me with multidirectional instability. This was causing radiating pain down my arms and my shoulders to sublux (partially dislocate). After a couple rounds of failed physical therapy I had surgery on both shoulders, a year apart in April '06 and '07. The pain went away and my shoulders were successfully stabilized. I felt great! That is until 2008 when I had an acute bout of pain in my left shoulder. I freaked thinking I messed up my shoulder but I was told by my PCP that it was just bursitis and I was sent to PT. 6 weeks into PT I was still in the same amount of pain until one day when I woke up and it was just gone. Poof! Someone said it may have been a blood clot that passed but no one really thought more of it. I was sent to a orthopedic who said my shoulders were fine and to go back to PT. I did that again. Ugh. That's when I started getting muscle spasms pretty regularly along my shoulder blade and up my neck. My PCP sent me to the chiropractor. It didn't help so I was sent to a neurologist who diagnosed me with TOS.
Now this is where I'm most frustrated because it was never really explained to me at this point what TOS was and how serious/progressive it could be. I was sent to a neuromuscular physical therapist which didn't work and I just dropped it because no one seemed to think it was that big a deal. I dealt with the pain with my flexeril and tramadol which didn't need to be used all too often until I realized that I wasn't really having good days anymore and my bad days had gone from being around a 4 on the pain scale to about an 8. I was sent for an MRI of my neck; this was now in summer 2012. I was sent for 2 rounds of PT again this time focusing on TOS since the PT thought I had it and I was discharged after 4 months for lack of progress and symptom progression.
They found 2 minor bulging disks and a slightly impinged nerve so I was sent to an orthopedic who specializes in the neck. I was told my neck was "absolutely not causing the pain" and was sent to a neurologist. The neurologist said everything was absolutely normal and that pregnancy can make things hurt a little... wow, really? My pregnancy did this? Someone call the Guinness World Book of Records because I just had the longest pregnancy in history. She wanted to send me to a hand surgeon or a pain management clinic which I refused because it was ridiculous. What I wanted were answers not pain meds. She sent me to "the shoulder guy." Yet ANOTHER orthopedic. In the meantime my PCP sent me for an MRI of my brain to check for MS and then off to a rhematologist to check for any "weird connective tissue diseases." Keep in mind, I have told ALL of these doctors that I was previously diagnosed with TOS and ALL of them had said they were not qualified to diagnose this but would send me to someone who could. I went to the new orthopedic who said that he thought my neck was causing the issues and my shoulders were anatomically perfect. I asked him to please give me a referral to someone who could diagnose TOS.
Of course, he sent me to a Vascular Surgeon who does not diagnose TOS so I ended up seeing a different one. The first time I went down to his office (over an hour away) he was stuck in surgery and I was seen by a medical student and a PA. They took half a medical history and told me that bilateral TOS symptoms didn't happen so I probably didn't have it but to feel free to come back again. The medical student told me that it was all in my head.
I did come back. I was seen first by the medical resident who said I didn't have TOS because I was not losing my pulse but when the doctor came in he stated that the resident did it wrong and I clearly did. I now have an appointment to see the Thoracic surgeon that will be doing the surgery with the Vascular surgeon and they will schedule a first rib resection and scalenectomy in January. I've been told there is involvement of the artery, vein and nerve.
So FINALLY I have my answer. It took years because of my other medical issues but they finally got it. The weakness, fatigue, loss of dexterity, the pain and the numbness will with any luck be a thing of the past.
What I want to know is about your experiences with surgery. I've read past threads but there are a few things I would really like to know.

Firstly, has anyone had any experience with the surgeons at Yale New Haven Hospital in CT? Unfortunately, I can only see a doctor in CT and most do not take my insurance. I do not have the funds to go out of state :-(

Secondly, can you share what medications you were taking both in the hospital and upon discharge? I am currently a lactating mom and I need to be able to research when/if it will be safe to give my baby my milk.

Thirdly, what can I expect pain-wise and function wise week by week? Specifically, how able will I be to pump breastmilk? Shower? When will I be able to hold my baby (she'll be 15 months old by surgery time)? How much sleep will my body crave? I need to know these things so I can plan to have help for my significant other. He and my mother will be able to be with me at all times but they will need breaks too I'm sure. I know it will be exhausting to watch after both me and my daughter so I want to make sure I schedule other people for breaks but I was wondering how far out to do this.

Lastly, any suggestions for me to keep me occupied? Eventually I'm sure I'll be at the point where I won't want to sleep all the time but my arm will be in a sling. Any suggestions about ways to keep myself busy? A girl can watch only so many movies!!

If you've managed to read this far, thank you. I really do appreciate it. After all this time it's good to get it off my chest and share the sense of relief I have that I'm not crazy after all.

[LiveLoveandTrust]

Originally Posted by Iris

do you mean a vascular doc and thoracic surgeon at yale new haven? If so, PM me.

Iris, yes, I do mean a vascular and thoracic surgeon at Yale New Haven and, unfortunately, despite my years as a computer tech I cannot for the life of me find any way to PM you. I am, however, extremely interested in what you have to say.

[mrsD]

Just a note.... new members cannot PM for the short period
they are in probation. This is done to detect spammers.

[Iris]

Can I private message her? I don't want to post this on the forum. Thanks!

Originally Posted by mrsD

Just a note.... new members cannot PM for the short period
they are in probation. This is done to detect spammers.

[Iris]

Originally Posted by Iris

Can I private message her? I don't want to post this on the forum. Thanks!

apparently your pm box will open up if you keep posting.

[mrsD]

If your PM's do not automatically open soon, check your options to
send and receive PM's. It is in your User CP file, which can be accessed from the upper left bar under NeuroTalk at the top of the page.

[NerPain4]

Originally Posted by LiveLoveandTrust

Hello everyone, I'm looking forward to getting to know ya'll! I thought I'd share my story and ask a few questions.

The whole big mess started my Junior year in high school in 2003....That is until 2008 when I had an acute bout of pain in my left shoulder. I freaked thinking I messed up my shoulder but I was told by my PCP that it was just bursitis and I was sent to PT. 6 weeks into PT I was still in the same amount of pain until one day when I woke up and it was just gone....
Now this is where I'm most frustrated because it was never really explained to me at this point what TOS was and how serious/progressive it could be. I was sent to a neuromuscular physical therapist which didn't work and I just dropped it because no one seemed to think it was that big a deal. I dealt with the pain with my flexeril and tramadol which didn't need to be used all too often until I realized that I wasn't really having good days anymore and my bad days had gone from being around a 4 on the pain scale to about an 8. I was sent for an MRI of my neck; this was now in summer 2012...wow, really? .... Yet ANOTHER orthopedic. ...I went to the new orthopedic ...
Of course, he sent me to a Vascular Surgeon who does not diagnose TOS so I ended up seeing a different one. The first time I went down to his office (over an hour away) he was stuck in surgery and I was seen by a medical student and a PA. They took half a medical history and told me that bilateral TOS symptoms didn't happen so I probably didn't have it but to feel free to come back again. The medical student told me that it was all in my head.
I did come back. I was seen first by the medical resident who said I didn't have TOS because I was not losing my pulse but when the doctor came in he stated that the resident did it wrong and I clearly did. I now have an appointment to see the Thoracic surgeon that will be doing the surgery with the Vascular surgeon and they will schedule a first rib resection and scalenectomy in January. I've been told there is involvement of the artery, vein and nerve.
So FINALLY I have my answer. It took years because of my other medical issues but they finally got it. The weakness, fatigue, loss of dexterity, the pain and the numbness will with any luck be a thing of the past.
What I want to know is about your experiences with surgery. I've read past threads but there are a few things I would really like to know.

Secondly, can you share what medications you were taking both in the hospital and upon discharge? I am currently a lactating mom and I need to be able to research when/if it will be safe to give my baby my milk.

Thirdly, what can I expect pain-wise and function wise week by week? Specifically, how able will I be to pump breastmilk? Shower? When will I be able to hold my baby (she'll be 15 months old by surgery time)? How much sleep will my body crave? I need to know these things so I can plan to have help for my significant other. He and my mother will be able to be with me at all times but they will need breaks too I'm sure. I know it will be exhausting to watch after both me and my daughter so I want to make sure I schedule other people for breaks but I was wondering how far out to do this.
.

Congratulations, you made it through the "TOS doctor shuffle"! Depending on the severity and presentation of one's symptoms, patients can be passed from doctor to doctor without a clear diagnosis for a long time.

You can improve your own experience with this by reading up on TOS as much as you can and focusing on just the "diagnostic" doctor visits, that trims down the extra history that each subsequent doctor has to review.

If you are currently nursing it may not be a good idea to have your surgery right now for the health of your baby. Sometimes after surgery your arms and hands are extremely weak and you may not be able to pick up and hold your baby easily. I had severe functional difficulties and my surgical side was basically limp for 3-4 months after my surgery but my experience is not typical. Patients recover at various rates and there could be nerve bruising so you could be back to normal in 2 months or 2 years.

I'm not sure how long you are planning on nursing, as that is a very personal question, but if your TOS surgery is not urgent, perhaps you could plan the surgery for after you stop nursing.

The medications that you will be on are very strong pain medications, Opiates and Nerve pain meds. I think I was on over 7 or 8 medications. Please feel free to PM me if you want some examples.

Good luck and take care with your decision! TOS surgery is not something to take lightly as it could be very life-changing. It could also be very life-improving and your baby will hopefully help you cope in a positive way!

[LosingHope]

Wow, what a terrible time of it you've had! Unfortunately, your type of experience is all too common amongst us TOS-ers. I've posted a lot of details on my surgery (which was done on July 25 this year) and recovery in the thread that was originally about Chris Carpenter (it's the one titled "Chris Carpenter St. Louis MLB, etc.), and another member is posting about his current post-op experience in that same thread. You may find some more information there helpful to your "length of time" and "level of care" questions.

I agree with NerPain that you will likely be unable to nurse or use pumped breast milk after surgery due to the drugs you will be given and the length of time you will have to be on them. You'll get opiate narcotics for sure and possibly a nerve drug as well (gabapentin, Lyrica, etc), in addition to whatever you're using now to control pain (i.e. flexeril, tramadol). In the hospital, you'll likely be given an injectable anesthetic (like propofol) and pain meds (like fentanyl or hydromorphone) before moving onto toradol injections and oral meds (like Narco). You also have to consider the possibility that after surgery, you could have a complication such as lung infection (requiring antibiotics, and sometimes steroids or other bronchodilators) or a blood clot (requiring blood thinners) - or other complication that makes it difficult to predict what kind of medication you might end up taking. If your TOS is not life-threatening and breast feeding is vital (i.e. your baby has a formula allergy or intolerance), you might consider postponing.

As far as holding your baby again, that varies from person to person, but you will be on a "nothing heavier than 5 lbs" restriction for at least a couple of weeks. Personally, I could have safely held a sleeping baby in my non-surgery arm with the support of my other arm at about 3 weeks post op, but I wouldn't have trusted myself to hold a wiggly, lively baby (i.e. one that might be able to squirm out of my arms) until after week 5.

As for your specific questions, I was able to shower (with no help) the day after I was released from the hospital. Ability-wise, you shouldn't have trouble pumping milk with a quality pump; I think the drugs would be your bigger limitation. You will want to sleep A LOT the first week - partly from your body needing to repair, and partly because good pain control drugs are sedating. By the time you are spending more time awake, you will be able to manage using the computer mouse, reading a book, doing crossword puzzles (or sudoku or whatever). I got a lot of reading done but was glad I'd stockpiled a bunch of TV shows on DVD to watch. I was never actually in a sling at all (which I found very interesting at the time, seeing as how they'd put me in a sling after my scalene block - different doctors, though).

Good luck with everything to come - believe it or not, you've already done the hardest part - getting the right diagnosis.

[LiveLoveandTrust]

Thank you so much everyone!

To give you a little more info on the breastfeeding thing, my baby was born 2 months early (as if I didn't have enough to worry about!) and never learned to feed at breast. Instead, I've been exclusively pumping for the past 13 1/2 months. I'm down to 2 pumps a day and still am able to provide her with all her milk needs for the day. By the time I have surgery she'll be about 15 months old and there's no medical reason she continues to need my breast milk. She's extremely tall and well above average for her length. She has no nutritional problems or food aversions and has tried cows milk and coconut milk successfully. I have absolutely no worries about having to dump milk for awhile. I have about 2 months worth of milk frozen in the fridge but even if I have to go through all that, there is no problem for me to just give her coconut milk and dump my milk until it is clean from medications then start up again. My concern was mostly that I would be completely unable to pump (for about a half hour twice a day). I do have a good pump and if I need to I'll rent a hospital grade. I'd like to continue to provide her with milk through next cold/flu season so... a total of 2 1/2 years but if I end up drying up from all of the excess resources going towards healing then, though I won't be happy about it, it will be okay.
At this point, I'm in so much pain and have so much weakness/lack of dexterity that it has become more important for me to be able to play with my baby, to snuggle and to hold her than to provide her with breast milk. I was in tears the other day when I took her into her room to play. All I could do was lay on the floor and watch her. I feel like a stump on the ground- unable to participate in life; only look on.
It's time to start feeling better so I can be a mom to my baby.
I do have a wiggly baby! She won't stop moving, she's the most active child I've met! I'm hoping that I will be able to hold her quickly or at least safely snuggle up next to her. I don't plan on being alone with her until at least 8 weeks have gone by.
Thank you very much for the list of pain medications! As I said, if I must pump and dump, I will but if I can safely give the milk to my baby than that would be ideal. It's just as painful to watch that go down the drain as TOS! I am not currently taking any pain killers or muscle relaxants for my baby's sake. Let me tell you... I am one unhappy camper. Unfortunately, flexeril never helped me (nor did Skelaxin) and Tramadol was great until I started developing an allergy to it. I do know that propofol and hydromorphone are safe while breastfeeding (believe it or not!)
Thank you so much you guys. I want all the information I can get. I'm the type of person that needs information to feel comfortable moving forward. I hope you know how truly appreciated this is! I've already spent many hours looking through old posts to get a feel for what I'm up against.