Some Posts To Fern
 

Thank You So Much Tam! I really do appreciate everyone's good wishes. I guess I was feeling bad as I was having a hard time with my given family and feeling a lot of stress. So when I was finally able to go online I was hoping for some positive communication w/my TOS group. Now I will know to be attentive enough to start my own thread. I do appreciate everyone's support on the forum. And, well, now that I had the good sense to return to my own home, even though I could have benefited from my mom's continued care, I feel so much better!

Tam--re: your commment "Three - I had one PT BLAME my TOS on my reduction that I had back in 87. I doubted that a surgery that never had any complications could do that, so beware of that sort of talk."
This is so interesting to me. I've had some medical sorts try to blame my TOS on my large chest but other experts like Peter Edgelow and Dr. Newkirk told me to expect a maximum of 5% less TOS with a reduction. Funny isn't it that unknowledgeable people can blame the reduction surgery OR the womens chest for causing TOS!

I actually had a second surgery at the same time as the reduction, in order to make more room for the axillary rib removal/s. Some weird genetic anomolly. So I have 4 incisions to contend with instead of the usual 2. I can't stretch out my arms and need to keep them by my side for the time being. But everything is going well and I am able to walk around the block with my hands in my pockets and arms glued to my sides! Yippee-- being outside in nature and keeping my body moving is something that really recharges my batteries.

Post Surgery Headache w/noisy head
 

OK, now I'm not sure where to post about my surgery so I will do so here. If not right someone pls correct me.

I have had a terrible headache that started about 3 days post surgery. I asked the plastic surgeon about it at 5 days and he said--"not my territory, must be due to your other conditions". But then I asked his nurse who told me that a LOT of wmn have a really bad headache and that it could be due to anesthesia or meds or the surgery or whatever. At 6 days, when I reutrned to my quiet home I noticed a loud buzzing sound in my head. Then at 7 days post surgery I had a very heavy car trunk come down on the back of my neck just below the occiput. Since then the headache has grown to include the front of my skull too--incl. sinuses, jaw, eyes, cheecks, teeth area... Now I'm at 9 days post-op and the headache has subsided some but it's still bad. The noise is still there. I know that it is partly muscular from my tight neck, shoulders, jaw, etc. and maybe it is partly medicine related, whether anesthesia or oral meds.

I am taking fish oil instead of anti-inflamatories now as my stomach ODed on them. I'm on less meds but they are Lyrica and Lidderm and also ice-packs, Tylenol, Vicodin and occassional Flexaril. I'm taking in extra fluids in order to release all the toxins from my body. My "stop-gap" doctor (still no treating doctor) suggested massage but my body with all of it's many stitches is not ready for any kind of pulling on the skin. If anyone has any suggestions for reducing the headache I would LOVE to hear them.

That's a hard one cuz first off, the Vicodin causes a recurring headache in many patients. Yes, anesthesia can give you a few days' headache, or positioning while in surgery. Flexeril definitely has on occasion given me a rebound headache after it wears off.

At day 6, the loud buzzing - and I am not a doctor - but for me, that means I am in an inflammatory mode MAX., but did you have ANY of this prior to surgery?

I am shocked that you were hit by a car hood on Day 7. I was just talking ot a TOSer and said, "watch out after surgery (rib removal, etc.) to NOT fall or get into an accident, etc., as the goal is to heal as much as possible with as little scar tissue and it surprises me how many people get in accidents right after surgery." So there again, you have this accident, and it's got to have some negative effect I would think - but I do hope no permanent damage.

Definitely all points to sit face-to-face with the surgical doc / TOS doc and talk it over!

P.S. I do hope you're monitoring your blood sugar levels with the Lyrica - having it drawn every month or so? Look at the results - I found my own diabetes when I had three months at 500, and the TOS docs ignored it. Just fyi.

that car trunk lid hitting you in the back of the head- wow.
After your stitches heal I might think chiro, osteopath, or spinal specialist PT type of care. To make sure the vertebra are aligned.
esp if the symptoms continue and worsen.

Fern- just wanted to reiterate that I (along with many others) have been stressed and/or flared all week....I DO hope you are recovering well.

I think a reduction is a great thing to do if you have large breasts and TOS, it should relieve at least some of the pulling down on your shoulders. I DO hope it offers you some relief :) And so sorry not to have given you more well wished beforehand.

*hugs*
Johanna

Thanks Everyone! Feeling a bit better this morning. More draining but less headache until I start doing--stuff. Gotta watch that desire to DO stuff.

Re headache.
Yes, I've had the noise before. It was worse I recall pre-neck surgery and for some time (yrs) after. I can always hear the "sound" if I press my palm into my forehead as in isometric style; even when I don't have the headache. Then I developed a ringing due to way too much Neurontin some years later; that seemed like tinnitus and dropped off w/reduction of Neurontin. The noise hasn't been around lately until post-this reduction surgery. I expect, though I am not a pro, that the headache and big noise are symptoms of swelling but I don't have any idea if that's correct.
btw-Pre-my neck surgery they tested me for a suspected "bruit" and it was negative.

If no other suggestions I will sub. Tylenol for Vicodin as I have already started to do (1/2 Vicodin + 1 Tylenol.) I was told by stop-gap doc that I could take up to 1250 Tylenol at one time.

U suggested to ask my TOS or surgery docs, but sorry, thats not happening. The Plastics doc said "not my problem, ask your treating docs" even though his nurse reported to me that many wmn get a headache post-op. I asked the "stop-gap" doc but he didn't care either and told me that it was clear I didn't have a concussion from the trunk--which I knew anyways. He wasn't willing to answer more than 2 Qs on the phone so I am on my own.

I do have an appt w/a pain doctor this week so I will ask him. Well, I'll ask hiThat is if he sees me. As I said this town s***s; I've lost count how many docs I've visited or phoned in my search for a TOS treating doctor. Last week was that head of Neurology at the Univ MN who said that TOS is usually caused by surgery, is 95% vascular and so NOT a neurological issue and may not exist at all. All that before he cancelled my appt for me after I had dragged myself there feeling terrible post surgery and had to get my mom to assist me in getting there. Remember the bridge collapse?; the Univ MN clinics are right over that and some other bridge.

Re: the Lyrica. NO, I was never told to watch my blood sugar. I only realized my weight was gain due to Lyrica when I read this on our forum. I will ask that Pain Doc to check my blood sugar; thank U tshadow. But monthly?; I hope not.

Fern,

i would love to hear how you feel (as time goes on) the reduction has affected your TOS. I had rib removal surgery in the spring and at that time the surgeon recommended I consider a reduction and I agreed to see a plastic surgeon (however I have yet to hear about an appt - I know last time I was sent to a plastic surgeon for a consult regarding my ulnar nerve it took over a year before I heard a peep from the doc. I was told by my surgeon it could take over a year to get in with the plastics doc...anyway). I see the surgeon again in a few weeks and I am sure this will come up and want to know what to ask, etc. I know there is no cut and dry answer on this but be willing to hear what others have experienced.

A reduction is something I have fought in my mind for a long time...and not really sure where I stand on the issue. I have a million questions...

Glad to hear you are feeling a little better this morning! Maybe tomorrow will even be better...

Jamy
 

JAMY, do U live in Canada? It was remarkably quick, I had a 3 mo. wait to see the surgeon but when another doc offered to phone for me, the initial appt was moved up to just a few days. Then the wait for surgery was only 30 days, the amount they said it usually takes to get Ins. approval. I guess that's the good side of that highly occluded vein. Even Dr Annest said no waiting for someone who developed the vascular symptoms.

RE the outcome: I figure I'll take what I can get. If it makes the TOS 5% more bearable, if it makes the TOS surgery recovery more bearable, if it makes my cervical neck pains even 5% better, it's all good and worth the operative trauma and the post-op pains. Not to mention the comfort of a smaller size. Now I know I'd be singing a diff tune if I had thrown that clot to my lung but I felt the risk was worth it. I think you can find posts by others who had surgery quite a while ago and check out their results. I knew one wmn w/neurogenic TOS who was so delighted by her results and has worked FT for years since having reduction surgery only. She found articles and used them to prove to Kaiser that the surgery was warranted for her TOS and RSI pains.

You raise some good points Fern - I have been trying to get a "re-do" cuz I'm basically a 38 DDD right now - not good for TOS at all!

I hope you're loving your results!!! After one year, I was so totally healed that no one could tell I had it done.

Good thoughts your way.

Tam

Wow Tam,

If I had RSD, and I do, I would think pretty hard about having ANY type of elective surgery. You sound as though you are suffering significantly from RSD, UGH!!

I met a young woman who was a physician and a fellow patient of my Pain Doc. She had developed TOS from an auto accident (whiplash). She had surgery so she could get her life back. Well, NOW she is in constant, extreme, RSD pain all over. I felt so bad for her, it was obvious how the pain and depression was taking it's toll. :(

I have nothing against surgery generally speaking, but the RSD puts a rather different spin on that idea.

P.S. Spousal Unit has been using our main PC, so I have to wait before I can continue our conversation. I cannot wait to be able to use my laptop for routine email again.

Take Care,
Anne

Anne is correct about RSD concerns
 

Anne is right about RSD possibly arising out of a bad healing situation with surgery, or being triggered by an injury and then further irritated by surgery.

However, I had nothing to lose with my rib resection / scalenectomy, so I considered the risks, and luckily, my circulation saw improvement, and thus it helped my RSD situation. This may not be true for all.

I never presume to tell anyone else to have surgery or not - it has to be a personal decision, and I can only relate my personal outcome, and encourage everyone to do their research and hopefully personally interview a FEW TOS surgeons. (As I did.)

Tam-how long ago was yours? Another surgery doesn't sound fun.

My many stitched areas and actually many nearby feel like my soft cotton pajama top is made of the bristols of a broom. It's awful, especially when I move even a tiny bit. Do ya think I should be rubbing the stitched areas the way they have you do after the TOS surgery? It's pretty creepy to feel so much stitched skin. I've been putting Vit E oil on and no matter what my upper body, even my back feels like Im wearing a porcupine coat. The good news is that the headache is slowly subsiding! It may be due to less Vicodine, who knows, but I am grateful for the relief. I'll feel so good when I can stretch again.

My surgery was '87 I think. I kept vaseline on my stitched areas for a whole year or more each night to encourage healing. I know they have scar healing gel now but the vaseline did fine. Do not use an antibiotic one, as that creates keloid scarring - causes too much skin production to cover the cut mark. Any bothersome stitches (ones that wouldn't dissolve) I quickly noted to the surgeon for a quick removal - I didn't want any pesky slow dissolvers to create a lumpy look. I kept wrapping and the bras situated much longer that I should have - I still gave breathers and took cotton with witch hazel to gently cleanse and let the area breathe - but then I'd wrap it up nice. Gosh, I remember that first time taking all of that off, and standing in front of the mirror - woowie - I felt like I was 14 years old again, and I do mean YOUNG. It was such a high!

Sadly, over the years, my breasts just continued to grow. The only thing that helped to keep them in a healthy smaller version was to speed-walk every day for an hour - I was in great health while doing that. But when I got sick, I couldn't do it any more, and so the breasts began taking on weight, and now, here I am, with circus-sized breasts once again, that pull me forward with such weight, and I am sure attribute some to the TOS pain.

Like I said, I am ecstatic for you, and God bless your healing process!!!

My surgery was '87 I think. I kept vaseline on my stitched areas for a whole year or more each night to encourage healing. I know they have scar healing gel now but the vaseline did fine. Do not use an antibiotic one, as that creates keloid scarring - causes too much skin production to cover the cut mark. Any bothersome stitches (ones that wouldn't dissolve) I quickly noted to the surgeon for a quick removal - I didn't want any pesky slow dissolvers to create a lumpy look. I kept wrapping and the bras situated much longer that I should have - I still gave breathers and took cotton with witch hazel to gently cleanse and let the area breathe - but then I'd wrap it up nice. Gosh, I remember that first time taking all of that off, and standing in front of the mirror - woowie - I felt like I was 14 years old again, and I do mean YOUNG. It was such a high!

Sadly, over the years, my breasts just continued to grow. The only thing that helped to keep them in a healthy smaller version was to speed-walk every day for an hour - I was in great health while doing that. But when I got sick, I couldn't do it any more, and so the breasts began taking on weight, and now, here I am, with circus-sized breasts once again, that pull me forward with such weight, and I am sure attribute some to the TOS pain.

Like I said, I am ecstatic for you, and God bless your healing process!!!

PS - take a quick read of what RSD feels like and just check to see if you feel that is occurring to you and then talk to your surgeon. Doesn't sound like it to me - my RSD was severe swelling, burning, hot spots and then whole areas of my body felt like I was layed in a pizza oven (for real.)

re vaseline
 

hi guys..,...quick thought....I have had some ideas about putting Vaseline onto a healing area.....remember that it is sticky and if bacteria get in there they too will stick....so just keep all super clean as well as minimal amounts of the goop and you should be fine!

take care
victoria:hug::hug:

Hi Fern,

Yes, I am in Canada...things tend to take a long time here...I waited a year and a half for an ortho consult on a foot injury, so long that I actually couldn't remember why they were calling!!! Then when I went to the appt, all the surgeon asked about was my scar from my rib removal surgery!! I get that a lot! I expect the reduction thing to be a topic of my next appt with the surgeon...I am just really torn about it all. Not sure why...guess I just wonder what effects it would have (on TOS, having children, etc)...time will tell.

Almost the second week post-op...! Yeah!
 

Hi Fern!

How's the recovery going? Has the headache gone away yet? I bet you must be glad to be back at home...I certainly know how trying it can be to have a parent do the aftercare, especially when we are adults! Stressful for everyone.

My advice on the incision-site pains is to try touching the skin with as many sterile textures as possible, though you might want to wait until after the stitches are out. When nerves get hypersensitive like that, sometimes they need to be "retrained" back into their calm state. Using hot/cold contrasts can help, too.

Take care,
Melissa

Just a quck update as I haven't had time or pain-free time to be on computer. I am at 2 weeks today and the headache is subsiding. I FINALLY had an appt with a doctor that understands TOS and my meds and what it is I am looking for. I had never had a good experience with a Pain Doctor before so I am very relieved. But he said he doesn't see people twice--darn; I forgot to ask but I think maybe it's because he's the head of a program. The follow-up at his clinic is with a man I've spoken with, very intelligent and understanding and I think a nurse. We had a teriffic meeting. I brought him many of my records to puruse and he had a bunch of them copied. I brought up the hypermobility issue as I really hadn't done that before except for asking neck neuro surgeon some yrs ago. I feel confident that he will find me the caregivers I am looking for and yes, he did provide me with the prescriptions for refills I was in need and it is wonderful to have that off of my chest! Also he gave me a script for Ultracet so I can get off the Vicodin --which I asked 2 other docs for but was denied.) And lastly, I drove myself to the appointment. I still hurt a lot but it feels good to be independent enough to be able to drive a bit. I still can't open a heavy door or carry things so I have to wait around and request that of people but no problem. So now I still lack a TOS treating doctor but have confidence I will have one soon.

The reduction site is healing fine but the feeling of wearing sandpaper or a coat made of broom bristles around my upper arms remains. And a lot of stinging and deep pains too, but tolerable. The doctors both said it is only disthesia and I know it will go away. I feel better knowing it has nothing to do with RSD, something I fear from any surgery as I know how terrible a sentence RSD can be. Good suggestion Melissa, I am trying what you mentioned with the fabrics and touch, as the TOS surgery recommends.
Regarding the vasoline, I was told that's not such a good idea. I am using a Vit E oil immersed in other good oils. I don't mind using a lot as 4oz were only $4 at Trder Joes.

I'm in a rush as my mom is having cataract surgery this morning and I will help be her partial caregiver now. I haven't recovered as fast as I thought so there is another relative in place to drive her and to do most of the work.

Thanks to everyone for your support. I don't have time to read other threads for a few more days but I hope that everyone is doing well. I send good thoughts to all.

Just a note - I am allergic (very) to Vit. E oil, so that was / is not an option for me.

I didn't have the nerve pain you are describing, but I had staples around the bottom, not so much stitches, and I wonder if that was a difference?

It sounds like the pain mgt. group you have found is a good one - thorough - so maybe they have some ideas on helping to avoid RSD after surgery? Just a thought.

Take care...and very glad to hear of your progress...