[EasternShoreLady]

Hi All!

I'm finally getting TOS surgery in a couple of weeks and I'm trying to get an idea of what to expect as to a recovery experience. I've already had a number of years of PT after getting a C5-C6 fusion to fix the numbness & pain problems (made things worse of course). Had wanted to try conservative treatment 1st and make sure TOS was the full culprit before undergoing more body part removal (also had to prove beyond any shadow of a doubt to docs that it wasn't carpal problems... ). Finally got myself referred to Hopkins and am getting it done by Julie Freischlag who's supposed to be one of the tops for TOS issues.

My fusion wasn't too bad tho I was a terrible patient on taking time to actually heal some before I waded back into life (really didn't have the option, am caregiver for mother with Alzheimer's & train mobility disability Service Dogs and of course Murphy's Law couldn't give me a break for once ). Have a feeling that tho I'm going to try to do better this time around, I'm probably going to be just as impatient a patient to get back to "normal". I'm supposed to have a 2 week down time before I start heavy PT for 12 weeks. Has anyone else had the TransAxillary TOS surgery approach? If so, how'd it go with pain at surgery and afterwards and how long before you were getting back to normal movement. Anything ya'll found that helped to alleviate the worst of the recovery time? Really not keen on undergoing the knife again but since I gotta, I want to get back to functioning ASAP and any words of wisdom are greatly appreciated!!

Many thanks!

Mary

[DiMarie]

I am sorry to hear your long travels with pain and limitations. I hope that with surgery you can reduce symptoms and have a better quality of life. The cervical issues were a battle itself.

Why does TOS seem to hit the family members that so many often depend on?

My daughter had a transaxillary, both under the arm, then turned over of the finish to do the detching of the rib and sclenectomy from the collar bone. She had a second surgery to clean up scar matter about 18 months later, along the collar bone.

The one thing that helped was having the cheap recliner I bought at second hand store, and bag of ice. Keep up with meds, don't miss a dose. Keep pillows around to support your arms while sitting. Try not to drive for the two weeks, it is the anesthesia and the turning of the head that is the killer.

Try to baby yourself, prepackaged foods, frozen, or make extra now and freeze so no cooking.

I did see you note, heavy PT? It seems odd to have this, the site needs time to heal, not be overworked as it will inflame the nerves sensitive from surgery.
A good commited person, and OT in the hospital can show you what to do at home for range of motion. It should not over stretch, should not hurt, sure be tendar, but cry in pain doing motions ever, should be only using fingers to climb the wall a bit, reaching up and out for range,

I would not think anything on the order of therabands, handbikes, or active T would be the course. I guess it can depend on the surgeon. But, the PT does not make your recovery you do. Listen to your body, don't baby it, but don't over do. Know your limits.

Blue ice packs or bagged peas are handy for recovery too. Keep them on the incision. using a soft ball to squeeze.
Keep the blowing maching going to. Often the lung is collapsed so the surgeon does not injure it. The breathing keep you from having lung problems as pneunomia.

By two weeks my daughter did very well. After a week to ten days she could start to do her hair but I did it to avoid the strain, as it was waist length. She started to drive, but turning the ehad was a trigger of an ouchie, you had cervical so you know how it can remind you that you are healing. But, Take it real slow, and listen carefully to not injure the area.I mention taht as you say you are a caregiver, and lifting could put strain on the surgical site and healing of the area.

Depending on how much they have to do, your recovery should be less painful then the cervical, I only say that as there should be more mobility and no hardware left behind. the scar becomes thin and a necklace should cover it.
Are you having surgery on the east coast? I am in PA.
Good luck and keep us posted.
Dianne

[gbsb]

From my experience I'd say that two weeks down time is an absolute minimum.
Also your mention of heavy PT, again from my experience is a bad idea. Take it very easy.
Surgery proof and prep your home. Clean, do laundry, groceries, supplies, pay bills, remove clutter, anything that you canget done before hand is a good idea.
You may feel well around two weeks post surgery as I did. Unfortunately I was on Hydrocodone, Oxycodone, and Valium. The meds made me feel better than I was.
There's all kinds of good tips here from sleeping in a recliner to using a dishwasher.
Search around the TOS forums here. People have posted some good pre and post op tips and experiences.

[fareastY]

Hi, I had left 1st rib resection with transaxillary approach almost 7 years ago.
I had pneumothorax right after surgery and it was like riding an emotional roller coaster at that time.

Anyway, it took me almost 1 year to recover from surgery but I'd like to emphasize that it was an exceptionally long recovery time.
Your range of motion may be limited for awhile but PT should help increase it.
Wearing bras might be one of the biggest challenges for you after transaxillary approach (at least for me!) so find the bras made of very soft materials.

There, of course, have been ups and downs but I think surgery helpd me alot ,though my docs desagree
I can imagine how scared you are right now. It must be the same how I felt about 7 years ago...but YOU WILL BE OK.

Good luck on your surgery.
If you have questions, PM me.

Yasuko

[EasternShoreLady]

Thank you all for your suggestions! I have an old recliner that I'm not quite sure if it will work or not but I'm going to try in the next couple of nights to see if I can sleep in it (fun fun). Any particular way of propping pillows around you helped better than others? I have a squishy bead U shaped pillow I bought from Walmart that I already use at night on my neck (I look like I'm the pole that someone made a lucky throw with at horseshoes). Have a bunch of icepacks but sounds like I need to stock up on more so I can rotate them out. ::chuckling:: Have a feeling my freezer is going to be at least a quarter full with icepacks.

Fortunately, bras won't be too much of an issue as I'm small enough that I can go without (a blessing and a curse). Not sure what clothes would work best as right now getting button up stuff off can be uncomfortable. The dogs help with pulling sleeves but I have a feeling they'll not be gentle enough during the initial recovery. Pullovers are a definite no go. Of course I'd do this during a winter that's colder than it's been in many a year with most of my warm wear being pullover styles. I'm probably going to get some more sweat pants to wear for the first month. Any particular types of shirts and sweaters worked well for y'all?

I have short hair that I don't really need to do much with other than blow it upside down. I'm getting the sinking feeling tho that bending over might be a bit more painful than I'm hoping it will be. Obviously the first couple of days I'm going to look pretty scuzzy but will I be able to use my other arm well enough to clean myself up in a couple of days or is this going to be affecting most upper body movement for a while?

I noticed a number of people had RSD issues flair up after surgery. I sent out an email to the doc last night asking about that as one of my docs thought that I might have it. What kind of blocks are supposed to help prevent it from spreading?

Freischlag didn't go into much detail about lung issues other than to say she might have to reinflate. That's one thing I'm not real keen about with her. I like full details to prepare well. I'm guessing she's of the school the less the patient knows the less stressed they are. If you don't know what to ask her, it doesn't get addressed. I have full faith in her operating skills but the recovery part I'm not feeling well prepared for at all. I'm prone to lung infections when I get colds due to someone else contaminating a pathology lab I was in during my microbiology days. Fortunately colds aren't something I easily catch but I'm concerned that lung collapsing might be a whole different ball of wax for preventing my resident germ from redecorating. Are lung issues a real problem with this surgery? Do I need to stay on top of that with the docs to make sure I'm not put at risk for pneumonia?

As to PT, Freischlag apparently is a firm believer in pushing it ASAP. I'm supposed to be using the arm as much as I can during the 2 weeks and the only time I should be wearing a sling is when I go out just to warn people not to bump into me. Having seen a neighbor of mine freeze up her shoulder from not doing PT enough after her shoulder surgery, I'm certain that's probably why the doc has such a rigourous PT schedule as part of her therapy. I don't know what all it will entail but it's supposed to be PT 3 times a week for 12 weeks (I hope my insurance covers it all).

My fusion actually didn't limit me all that much strangely enough. The worst was that it didn't take care of the numbness in my hands constantly keeping me awake so sleep dep on top of the fusion was giving me killer migraines that changed to include uncontrollable vomiting. In hindsight, I'm sure that the fusion flared up the TOS to cause that as my migraines went entirely away after my botox injection into the middle scalene that Freischlag uses as a diagnostic. If I could have continued with the botoxes, I would have cause that treatment was miraculous on taking all my symptoms away for almost a month and a half. I could even easily touch my toes when I did my stretches. The back spasms were entirely gone even with my degenerative disc disease and I didn't have to take any pain killers. Fingers (toes, eyes, etc) crossed, once I heal from the surgery, I'll have that bliss again. The fact that that botox was so convincing is the main reason I agreed to the surgery. I had an idea that it wasn't going to be a fun one and after reading all the posts and responses, I'm even more convinced it's going to be a rough and long road back to "normal" (if I ever was that to begin with).

My biggest concern is loss of ROM. I've worked extremely hard to keep as much as I could after my fusion and the worst limitation is on the right side where they're going to be doing the surgery. I'm guessing that the surgery will initially cause issues there but after it settles down it'll hopefully be better since the scalenes won't be a factor anymore. I'm also pretty concerned about difficulties with neck stabilization. I've talked to a couple of PTs around here that said they treated people who had the release and resection and those people had serious stabilization issues. Last thing I need is to have that with my plated neck. Freischlag says I won't be a bobble head but I'm not going to bet that Murphy's Law won't kick in somehow. Murphy just loves to irritate me way too much. Has anyone else had problems bobble neck or is that just a myth to scare us?

Well, time for me to get ready for the 3 hour drive from Salisbury to Philly to pick up the pupper (waving hello to Diane on the way). Thank you all so much for sharing your experiences and tips. It's very, very much appreciated!!

Mary

[watsonsh]

Good luck with your surgery ESL,

Everyone has given you such good advie. I will add a small one to the list. Buy Tegaderm patches from 3M. The big ones or ask for some from the hospital. They are wonderfully waterproof patches that allow you to bathe. I was able to take a shower the next day and not a bit of water got on the surgical site. Easy to get on and off too. I used them for 2 weeks and they were great.

Best of luck and I will keep you in my prayers.

[beth]

Mary,

Hi, you sound as though you have things well in hand for your surgery! I hope Murphy is conveniently far, far away on that day (perhaps bothering an insurance agent or IME physician?? One CAN dream!!). Your response to the Botox injections and the amount of ROM you've retained are both very positive signs.

I will echo what others have said re: the PT. Dr Freischlag is of the So. Cal philosophy rather than the Denver school on this, and while geography in itself does not matter, the Denver trio of surgeons seem to have the edge at developing PT that works by collaborating with the actual therapists who see their patients post-op. The resulting PT is done 5 days a week the first 2 weeks post-op with a Denver therapist, then continued at home with a local therapist who has familiarized him/herself with the protocol.

It begins with gentle stretches, nerve glides and ROM, and proper positioning of scapular muscles, proceeds to non-weight-bearing exercises on one side of the body, then to cross-body, before moving to light weights. But the key is that never do you push if you are experiencing any nerve sx - tinglinging, numbness or nerve pain. Those sx are a sign of too much, too soon. This is what you MUST listen to your body for, and if you feel, stop what you are doing and let the PT know, then ease up til the point the sx don't appear.

As your body recovers, exercises requiring heavier weights, other upper body movements, and programs such as Feldenkrais and/or Pilates may be added. Again, do these activities at your body's pace and level of tolerability; while you may have a low patience factor, our bodies require time to heal from surgery, as well as food and restorative sleep.

The block I received to help keep my RSD from worsening was (I believe) a stellate ganglion block. This is the sympathetic nerve ganglion at T-2. Other Drs may choose to do a plexus block or another form of block, there are several types, but the stellate ganglion is the likely choice.

If it helps, I did catch myself with my head leaning toward the non-operated side the first few months, but quickly re-trained the remaining muscles to hold my head upright. And I never wobbled.

Best wishes,

beth

[camey]

been there done that ---better than having scalene only removed that sucked with alot of scar tissue... I did real well with the trans ax--hardly any pain and I am inchin back toward normal.... although work comp put the second surgery off for almost a year and because of that I have permanent nerve damage----I am doin alot better than before the second surgery.... I had a doctor in Denver do mine and I am real happy well I wish you well and hope all turns good for you....shari happy valentines day

[olecyn]

Be gentle with the PT after surgery.
My surgeon told me to return to all normal activities and it was the wrong thing to do.
I had the wrong PT and it hurst for 5 months.
Until I found this forum I was being told all the wrong things.
These are smart peeps who have been through it all.
Listen to the experiences of them.

Also, research the use of a sling.
The docs had me in one and the PT went crazy as the arm and shoulder needs to be mobile.
The sling creates imbolization, lack of circulation and thats when your shoulder can freeze up like you said.
You will find the swelling will go to your fingers and your elbow will start hurting more so.
"Frozen shoulder" issues are a problem with TOS with the lack of gentle movements.

1. Swimming the breast stroke is the best way to keep your body mobile, the muscles strengthened. No overhand (freestyle) swimming.
2. No lifting over 10 lbs, thats a gallon of milk or water.
I still have a difficult time with that.
3. Keep your clothing in your closet at waist high as not to reach. Paid someone to come reorganized my closet and still abide to it to this day.
4. No lifting of wet laundry from the washer to the dryer.
5. No vacuuming.
6. Nothing repetitive.

You will find that everyday household chores are repetitive, raising your arms, grabbing and dropping.

Just remember gentle glides, and then strengthen with swimming or the Edgelow protocol.

Hope we have helped.
And good luck with surgery.

[dealingwithtos]

Hi.

I sent you a private message regarding surgery.