Scar Tissue and Adhesions Post-Surgery
 

I had another appointment with Dr. Donahue yesterday and I'm doing great. I find a lot of my visits are spent asking about some of the things I read on this board, and Dr. Donahue is great at addressing the loads of misinformation being passed around.

Scar tissue and adhesions are not preventable. Our bodies are programmed to heal themselves and they do so by producing scar tissue. Some people are predisposed to making more scar tissue than others (those that produce keloids, for example), but there's no way to stop it. He said he has never had to reoperate on someone who developed so much scar tissue that it hurt the positive effects of surgery. Doing too much after surgery is worrisome because you could overstretch nerves or otherwise damage them, but scar tissue does NOT cause problems. I will continue to do gentle range of motion stretches as I heal over the course of the next year or so.

The idea that you can simply pick a surgeon and ask him/her to operate on you is also sort of horrifying to me. Anyone who gives you a sales pitch, or is ready to operate on you regardless of whether or not they think surgery will actually help, is someone you should run away from. Dr. Donahue will not operate unless he is quite sure that surgery will benefit a patient. There are no guarantees, of course, but his vast experience has given him a pretty good idea of who will and will not be a good candidate for surgery. Also, there are lots of things that can't be seen on various imaging techniques. Apparently it takes getting into that area surgically to actually see certain problems.

A doctor's credentials actually DO matter. You want a surgeon who has a high success rate and who does a lot of these surgeries.

Another thing that I find worrisome is that for the over 30 years I suffered from TOS, a lot of my pain was the result of nerve impingement from my c-spine over the damaged rib. My scapula hurting was the result of nerve pain elsewhere, as were many other symptoms. I had a doctor at MIT give me shots in my scapula and neck because that's where the pain was. It was NOT where the pain was coming from and was a horrible idea.

Ok, off my ergonomic soap box for now! :winky: Sending good thoughts for less or no pain to all of you.

you are right scarring in the natural thing a body does, but there is a few ways of minimizing the effects of scarring. One way it to use a medical material to wrap around the nerve so that the scar tissue cannot attach to the nerve. I have read about it on multiple TOS websites and have been talking to a Doctor in California who uses this method and uses a mri process that supposely shows the exact pinch point of the nerve.

From his website here:
*edit*

I guess just because you read about it on various websites does not make it true. Plus, isn't Dr. Filler the sales pitch guy? Scar tissue does not ruin a nerve, overstretching it does.

Basically I mention possible scar tissue/adhesion because in the past so many jumped into surgery with any surgeon that suggested it ,and no understanding of possible risks and thinking " dr X says I need surgery - that all will be 100% fixed.".
And sometimes it did fix it and sometimes it didn't and a few times it was a total failure.
Or they were OK for a few months and for what ever reason sx came back..

I do think there are many more qualified surgeons that can expertly handle TOS surgeries than there was back in 04 when I started learning about it.

Jo*mar, I don't quite understand your answer. Are you saying that because a poster said surgery wasn't successful that the reason had to be that scar tissue was to blame? I'm sorry I'm fuzzy on that and may just be reading incorrectly! :winky:

I had failed surgery in January 2005. Eight months after the surgery my surgeon ordered an MRI with a radiologist who specializes in TOS and he said I had scar tissue building up on my brachial plexus. Both the radiologist and the vascular surgeon explained that the scar tissue was the reason for the continued pain. Several doctors have since told me that scar tissue on the brachial plexus equals chronic pain.

My surgeon did use a wrap in an attempt to prevent scarring but it didn't work in my case.

Kelly

I tend to think that the scar tissue was not removed properly to begin with. There's no way that so much scar tissue could've built up in such a short period of time.

I know of a few from long ago, that did have overgrowth of "scar" tissue/adhesions , internally - not surface scarring, that was a problem for them and caused ongoing pain & sx returning.
I believe a couple did have redos and wraps, but their body just happened to produce much more than the usual amount of scar tissue.
It can build up quickly in some people.

Some of the surgical failures just happen, no rhyme or reason.

I think 2 others were in auto accidents during the recovery time, so that set them back & messed them up quite a bit too. So be careful and make sure you have a safe driver taking you to appts & outings..


I'm sure every dr & surgeon has their own opinion about it. As we do too.

Just something to be aware of post op and long term, and again it may not be an issue for you, so not worth stressing about.

I would like to put forward a word of caution about this scar tissue issue that has been raised. The diversity of the people who share the support of this forum makes it very clear that no one person is the same.

Different surgeries achieve different outcomes depending on the individual and yes, scar tissue does grow depending on the type of surgery and the location. Knees for example is one area. Who else know someone who needed post op clean ups to their knee/leg surgeries?? Its a common outcome in the military.

I would warn against the generalisation that scar tissue does not cause problems, it does, and it gets removed regularly because of it. Remember that it is tougher than surrounding flesh and it doesn't yield, so even a small amount can cause grief.

Everyone, this is a quality forum, lets refrain from applying general sweeping statements from any source without focussing exactly on the audience intended, because it could unintentionally look like a put down of everyone else's opinion and experiences.

Limoges, mine caused issues after five months. My tumour was the size of an orange, so theres a lot of dissecting and playing around with things while they are in there!

Please read what I actually wrote. No one's disputing that scar tissue causes problems, or that it should be removed because it causes pain, or that we're all different.
What I said was that my surgeon told me that too much movement post surgery will not cause scar tissue to regrow more quickly. I'm going by what my surgeon--who has a very high success rate with this surgery--has told me. I should not hesitate to move around and live life for fear of scar tissue ruining the results of my surgery. That's what I said. :)

Blurto, I don't believe that was a sweeping generalization, honestly. I do find that telling people to restrict their movements post surgery for fear of scar tissue forming is misinformation. Certainly I'm as entitled to my opinion as they are. :)

I have scar tissue trapping my subclavian artery and vein, causing complete blockage of both (confirmed by MRA, and about a gazillion other tests). This scar tissue formed after surgery for a broken collar bone that did not heal. It formed to where my arm and hand was going off-color within 4 months of surgery. I make keloids, inside and out. Have not found anyone or any way of preventing or fixing this. It's two years later, and apparently scar tissue is STILL forming in there.

This scar tissue was seen, confirmed, by Dr. Donahue's specially-designed CT scan. Unfortunately, I cannot tell you what he would do about it, because he mixed someone else's neck MRI in with all of my scans, and based "my" diagnosis on the bulging cervical disc that this other person had, but I don't. (Which would explain why he kept asking me about "my pain" when I kept trying to tell him I really didn't have much, it was the blue arm and the cardiovascular side effects that were the problems.) I found this out when I got my hands on a copy of his report about me, while waiting 4 months for his office to appeal the insurance refusal for the botox injections he seems to do on everyone as part of his investigation. (His office was not appealing for those four months. They had not done anything but make me think they were appealing.) When I finally got through to him to tell him of his mistake, he refused to take responsibility for his mistake and dumped me as a patient. So much for the shining Dr. Donahue. He will always be held in a special place with me, and it ain't in my heart. And it wasn't the mistake, it was the way he handled it that has placed him there.

So on to yet another doctor, New York City, again. Who said messing with scar tissue is a VERY BAD IDEA, as someone else in this thread said, it is tougher than regular tissue, so if you start pulling on it, guess which rips first (hint, not the scar tissue). And, also, there is no way to prevent more scar tissue from forming as a result of the surgical cutting. Which is also what a doc at Yale-New Haven, and a doc at Columbia Presbyterian had said when, they both eager to remove rib & all, I asked, well how do you keep more scar tissue from returning? and all they could say was "good question". But no answer. Because there isn't one. Other than to stay away from patients like me that will scar excessively, and ruin your record.

In searching for a possible solution to stop the ongoing internal scarring, I have run across many articles on scarring after TOS surgery that causes further problems and need for further surgery. I have also run across many articles talking about how surgery to repair scarring just causes more scarring, then more surgery, then more scarring.....

I'd also add the caution to be careful of any surgeon who say THEY never have a certain problem, and that it won't happen, unless they have specific, concrete, documented techniques for preventing it. And yes, be careful of anyone too eager to do surgery, but also be careful of those who seem too good to be true.

You seem to be using this forum as a way to discredit a doctor, winc. I can say without hesitation that my experience--and those of most other patients who have had Dr. Donahue perform surgery that I've spoken with on this board--has been completely contrary to yours. He and his team could not have been more professional and caring, dare I say, outstanding. Seriously, every single person I encountered on his team. I'm sorry you had such a bad experience, and I don't doubt that you did, but it's hard to believe we're talking about the same person. I guess like most things in life, we all experience them differently.

I get the feeling that no one has actually read what I wrote, as evidenced by some of the responses here. I think I'm going to bow out of this discussion for now.

Winic, I noticed in some earlier posts that you speak highly of Dr. Adelman in NY. Were you able to get some help from him in the form or surgery or pt? It sounds like you really liked him and found him helpful. Though I disagree with your assessment of Dr. Donahue and his team, I still wish you success in your recovery and peace.

[What I said was that my surgeon told me that too much movement post surgery will not cause scar tissue to regrow more quickly]

Ah that clears it up - I didn't see that from my readings of the first post.
What I saw was this and that's what I was replying about.
[but scar tissue does NOT cause problems]
probably what others were replying about because they have scar tissue and it causing problems.

So the thread got off due to a misunderstanding of sorts...apples vs oranges ...

[I do find that telling people to restrict their movements post surgery for fear of scar tissue forming is misinformation. ]

You thought the suggestion of limiting movements after surgery was in relation to scar tissue growth.??
If I had noticed a post saying that I would have tried to clarify, I must have missed that one.

I usually suggest gentle ROM movements - but limiting of any quick, fast, jerky moves that may cause a problem.
Like trying to catch a falling cup or dish..
( nothing to do with scar tissue- but just in general- post op advice)




*
About Dr talk...
I will say that everyone has their own experiences with various Drs and while some love their Dr, another may have had a bad experience with the same one..
It nothing personal and no Dr is or his office staff is 100% perfect every day..

Mistakes happen.:(

Morning Everyone,

Thanks Jo*mar, we must be so careful in what is said and how it is said. Everyone's situation is unique as is their opinion, taken from personal experiences. Do not misinterpret these personal opinions as misinformation. This is how a well intentioned post can be misinterpreted without a clear focus in the statement.

Jo*mar, I'm not about to argue with strangers on the interwebs, but you took a portion of my entire sentence and posted it completely out of context. I have seen lots of chatter here about how you need to take it easy post surgically because scar tissue and adhesions will form if you don't. Scar tissue will grow and cause problems if you sit still in a chair and do nothing for months on end. I did not say that scar tissue wasn't a problem.

Sweeping generalizations are a bad idea overall. I worry that a lot of the people that read and post here haven't sought sound medical advice.

Taking it easy and sitting still in a chair and doing nothing for months on end are entirely two different things. I have been trolling TOS boards for well over 4 years and I have never read a post here or anywhere about sitting still in a chair to avoid scar tissue or adhesions.

I read and re read many times to be clear on what I was replying about before I replied.....I thought the misunderstanding of the topic was corrected.:confused:



Just sitting still in a chair would probably give you many more problems - a possibility of frozen shoulder, as well as gunk & toxins building up from lack of movement...

Limoges,
I'm cringing reading your posts. They are a little insensitive and inflammatory --- I think they are causing scar tissue build up as I read them. :D

I sincerely appreciate you taking the time to share your TOS experience and hope you will continue to do so over the next several years ---- long term results are what it's all about. I also enjoy how you share what Dr. Donahue tells you. It's helpful for all of us to hear what TOS docs think.

There is no misinformation here. What works for someone else may not work for me. Also, If someone says Dr. Donahue was a jerk and backs it up with specifics, then it is possible that he was a jerk and is capable of being a jerk. To say that he may have experienced it differently may suggest that Dr. Donahue was not a jerk, but the patient just experienced it that way.
Please consider what we are trying to tell you and don't get defensive --- we're just trying to help.

There used to be another TOS website and I read a number of people say that surgery was a great success until 2-3 years out ---- then symptoms started coming back from the scar tissue that built up.

I pray that this doesn't happen to you and that you live the rest of your life pain free.:hug:

A doctor mixing up patient records is a SERIOUS mistake.
A doctor making a wrong diagnosis and treatment plan based on mixed up records is a SERIOUS mistake.
If he had truly listened and evaluated me as carefully as he has a reputation for, and as it seemed, he would have caught his mistake while I was there for the initial examination. If he had looked at all the records he was sent before I got there, he would have caught his mistake (it included a printed, numbered, cross-referenced list of scans. This other scan was not on the list, not by type, body part, or date. I know. I sent him the list and ALL the discs and reports myself, directly.)

His office people at MGH itself were very nice. The one at his outside office who handles insurance and appeals, not so much. AND, she wasn't doing her job in my case. Totally blew it. Tried to lie to me about it (blaming the delay on the insurance company, when after the initial request for approval, she had done nothing further for months, until I spent a couple hours on a couple phone calls transferring department to department trying to find ANY evidence of anything she'd sent in), and in doing so closing ANY opportunity for getting the insurance to allow the treatment, by him, for all eternity, according to their rules. (You appeal within time limits, or forever hold your peace. The same doctor can never apply for that treatment again. So if it had been the right thing to do, I could not have had him do it. Irrational, but that's their system.)

If I hadn't been blinded by the reputation (people here write about him like he is a god) and nice demeanor, I might have questioned his emphasis on hearing about "my pain" so much, when I kept saying pain was not really the problem. And we would have caught his mistake. And, between waiting to get in to see him, waiting 4 months until the mess unravelled, and waiting another month to get to a new doctor, I would have saved six months of my life lost to this.

Am I the first and only person he or his staff has ever made such a mistake on? Hopefully, but probably not. If I had seen anyone else saying, hey, be careful if something doesn't sound right, hey, check up on K in the office, don't trust that she actually is doing what she should, at the very least I wouldn't have lost 6 months of my life, of my kids' lives, to pinning hopes on him. At best, we would have caught his mistake while I was there, and I would have had proper evaluation and maybe proper treatment.

So, yes, I want people to know they should be cautious of the golden glow of his reputation. Or anyone else's. And ANY doctor who claims to NEVER have a problem that it is documented others do, without solid, documented reasons why and how he prevents it, well, he's fooling himself and you. There is a difference between "I have not had that problem" and "I never have that problem". Red Flags all over the place. And that comment is not applied to Dr. D, but to any and all, and again from experiences. You don't want a Dr. Denial on your case.

winic1, that would be so frustrating to go thru all of that and the time lost waiting. Sorry that happened to you.

I guess we have to remember that no Dr is perfect all the time, all of them will have a bad day once in awhile.

Something to remember for anyone consulting with any surgeon or Dr
- make sure everything is clear and be sure ask questions if something is not sounding right.

Did you have sucess with the Dr. in N.Y.? If so who and what were/ar your experiences with that Dr.?

Request for more info...
 

Hi Kellysf,

I had an arterial TOS surgery in Feb 2010. My symptoms returned in about 10 months.
I am having similar issues as you. I started therapy with Peter Edgelow and he was of he opinion that scar tissue built up over time. An MRI of the brachial plexus was done with view of the thoracic inlet and no scar was seen.( at another facility) I live in the bay area and am curious if you went to Dr Scott Werden for your MRI as I am thinking of doing the same to see if they can locate the scar tissue post TOS surgery. I would really appreciate it if you could share any info about anything helping you right now.

Thanks so much.

Stos2









Stos2

Sorry to hear you're having similar problems. Yes, my MRI post surgery was done by Dr. Werden. I had MRIs from before surgery so it was easy to see the scar tissue resulted from the surgery.

My surgery was performed by Dr. G. James Avery in San Francisco.

Let me know if you have any specific questions.

Good luck,
Kelly

[QUOTE=stos2;869696]Hi Kellysf,

I had an arterial TOS surgery in Feb 2010. My symptoms returned in about 10 months.
I am having similar issues as you. I started therapy with Peter Edgelow and he was of he opinion that scar tissue built up over time. An MRI of the brachial plexus was done with view of the thoracic inlet and no scar was seen.( at another facility) I live in the bay area and am curious if you went to Dr Scott Werden for your MRI as I am thinking of doing the same to see if they can locate the scar tissue post TOS surgery. I would really appreciate it if you could share any info about anything helping you right now.

Thanks so much.

Stos2



Hi Stos, I was refferred to dr. Edgelow as doing a certain Osteopathic release method. Unfortunetely I m in S. Cal. Can you tell me your experiences with him. Did he help you? Does he still sell the Edgleow Protocal kit. Do you think it would be worth traveling to see him?
thanks,jkl

Stos2,

I realize I didn't address your question about whether anything was helping me now. Unfortunately, no. I'm in the pain management quandary that many of us seem to be in. Dr. Werden found the scar tissue forming on my brachial plexus but surgery was never suggested, nor would I have considered it to try to remove the scar tissue.

I didn't have any luck with Edgelow, other than the abdominal breathing part. The rest of it always flared my pain and headache.

Good luck,
Kelly

I'm not aware of Edgelow doing any Osteopathic manipulations. I would not travel to him, but find an advance PT and/or Osteopath in your area.

He claims deep diaphragmatic breathing, which you move up into the Brachial Plexus, has helped patients break down scar tissue and adhesions. This has not been true for me, but I still continue to do a very small piece of his protocol daily.

During my rib resection and scalenectomy, Dr. Donahue cleaned up all the scar tissue he found surrounding my nerves. I have never felt better, honestly. He said my nerves were actually wrapped around the first rib, with lots of scar tissue attached from years of rubbing against the bony protrusion on the rib.

Since you are in SoCal, it may be worth at least one visit to Dr. Ando - http://www.andoaston.com/staff. Just make sure you are getting Dr. Ando for that first visit (although James is good too).

My primary care physician is a DO and Dr. Ando's techniques are very similar to osteopathic manipulation in my opinion.

He sounds good. Has it helped you at all? I was hoping to find an Osteopath who is covered by my insurance as my PT visits will run out soon.

Yes, he has helped. I sometimes wonder If I had found Ando two years ago If I would be needing surgery right now.

What helps me keep my sanity...and out of pain most of the time.
 

Thanks so much to all of you and sorry it took me so long to write, I also feel that Peter's core technique does help but in a limited way, and I can't get past the core program without getting into pain.

This is what helps me...
1)About 30-45 mins of cardio everyday, moving around a lot, sitting minimally.
2)Abdominal breathing in a limited range reading of 40-70 only (my comfort zone) on the blood pressure meter and the longus colli strengthening again with the blood pressure meter within 20-21,22 only.
3) I also have to be on some kind of a fibromylgia drug to be able to do Edgelow's therapy twice a day.
4) Keeping positive.
5) Mentally feeling in control versus out of control does help a lot. This is a big One!
6) Trying to stay stress free, no matter what, does help a lot!
7) Knowing and being aware of my limits does help a lot.
8) Doing Edgelow's core program twice a day does help me a lot and I try and stick to that routine, no matter what. It's the only thing that helps me as I can't do any stretches.

Peter is not practicing anymore due to health problems, but there is a Steve at the Hayward Practice who has trained under Edgelow for a good amount of time. I don't have any experience with Steve. To answer the question from some of you on the Edgelow Kit, I believe it can be ordered from Santa Rosa, but I wouldn't purchase the whole kit without seeing a therapist who has been trained and can guide you with the Edgelow protocol.[/B] To start with, I would only purchase a manual blood pressure cuff, if you want to try it out.

Hope that helps,
Good luck to all of you,
stos2

My case is similar to yours... any other suggestions?
 

Hi Anne4tos,

I find myself in a similar situation as yours. I do the Edgelow breathing exercises (only core program) in a limited way along with the three different types of breathing (Diaphragm, lateral costal and sternal) to move the scar tissue, and it does seem to move the heaviness in there, I don't know whether its the scar tissue or some accumulated fluids but it does feel good. What about you? Does it help you even a little bit?

Any thing else that helps you? Have you been to a good massage therapist or an osteopath? Anyone you can suggest to manipulate or mobilize? I am in the east Bay area.
Does everyone with TOS have trouble sleeping on their sides? I can't sleep on either of my sides at all.

Thanks, stos2

Stos:

I do diaphragmatic breathing, but I prefer the Feldenkrais method of breathing. It seems to move more ribs and expand into the brachial plexus more than Peter's method. I also use his air pillow, ball on a stick and 3" and 6" foam roller. I strengthen my longus colli with simple chin tucks rather than the whole blood pressure apparatus. I do this routine twice a day. It does feel good to do it along with cardio.

The only thing which has really helped me though is manual therapy. I receive 2+ hours of hands on therapy per week focused on myofascial release and breaking up scar tissue and adhesions. I wish I had done this at the start of my problems. I will be returning to an Osteopath soon.

Where are you in the East Bay? There was/is a PT in Berkeley named Lori Sweet who treats TOS. I can't find a link for her as she is either no longer in practice or I'm spelling her name wrong. Dr. Ellis would probably have a contact number for her.

Anne

Add-on Edit: Sorry to read Peter is no longer practicing. He's such a nice guy and always a comfort when in pain.

Do you have a good source for the Feldenkrais method of breathing, such as audio, DVD, youtube or URL? Obviously I can search; I'm just looking to see if you have a recommendation.

Dr. Aaron Filler beware of him!
 

Beware of Dr. Aaron Filler! I got a staph infection from the operating room when he did surgery on me to remove scar tissue! This left me worse off than I started out to be as a result he wanted me to get a pain pump! I have lived on pain medications without a pain pump since I had the nightmare surgery at Dr. Filler's hands all a result of a work injury!:eek:

I hear that Drs. Ahn and Gelabert fix Filler's mistakes. Have you considered getting the rib resected and scar tissue cleaned up by a vascular surgeon since Filler is a neurosurgeon and only does scalenectomies?