TUG flap - anyone else had problems?

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I had MX with immediate recon in June '08 using what seems to be a little known technique of using the thigh tissue and muscle. On the plus side it has created a lovely breast but the surgery damaged nerves and has left me with terrible pain and hypersensitivity in my thigh down to my knee. The slightest touch causes me to flinch and any strenuous exercise is not possible. Even just sitting is painful! I had more surgery 6 weeks ago to repair the damage to nerves but there has been no improvement. A rather edgy consultant today has descided to try a whole host of other treatments including neuromodulation (like a tens machine) and a nasty drug called Gabapentin.
A traumatic experience - BC diagnosis, surgery, chemo - all being made so much worse by the damage caused by this particular reconstruction. I’d even asked if by using my thigh would my leg be problematic afterwards and was told absolutely not. Yet here I am facing the possibility of constant pain and discomfort and a lifetime of medication.
Has anyone else out there had this surgery? How is your leg?

Feeling blue x

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Oh dear, I’m stuggling to find anyone else who has gone through this surgery.
It’s a lonely place!

Marita

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Marita
Im so sorry to hear of your troubles-how scary and disappointing for you, but I cant offer any helpful advise 'fraid. Even tho Ive just been to see the plastic surgeon to discuss my own recon, this technique never came up in any of my research/discussions with others. Did they say why they opted for it?
Cathie xx

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Hi Cathie
At the time of dx I had little fat elsewhere! I had a very flat tummy thanks to regular karate and gym visits - can’t remember what that was like now! so use of tummy or back was not an option and neither was an implant as it was thought I would require radio therapy - as it turned out I didn’t! My surgeon was one of very few in the country who was ‘experienced’ in the tug flap, and as I was not keen on waking with no breast I accepted this as the best option. 21 months on I’m not so sure!!
Best of luck with your decision, ask lots of questions and then ask them all again!
Marita x

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Marita, I know this is an old post, but I wanted to let you know that there is another site where people have had this surgery. I’m not sure if the rules of breastcancercare.org allow me to post a link to that site, but it is an online breast cancer organization in the States. I am scheduled for this surgery myself and am anxious about it to begin with. and then I stumbled across your post. I sincerely hope that your condition has improved with time.

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How are you feeling now? I had the same surgery two years ago and still have a lot of pain. None of the women with whom I spoke prior to my surgery mentioned having ongoing pain, but none of them had exactly the same surgery (I had a bi-lateral prophylactic mastectomy followed immediately by TUG reconstruction.) I’m considering seeing a homeopathic doctor to see about accupuncture and alternative ideas. I’ve been to a pain clinic, and outside of narcotic pain relievers and some scary neurological medication, there wasn’t much they could offer except lidocaine patches (which do help), using a TENS unit on all sites, and taking NSAIDs. I hope you’re doing better now!

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Hi

I had the tug flap surgery. I wasn’t aware before my op how new this was. I tom was told there would be on significant weakness. I have not had a good experience. Infact at the end me it all I felt I had been used as a guinea pig. Unfortunately I developed a blood clot in the flap and was rushed back to surgery. Then the flap started to die. I had a third op to remove the flap.

Like you my leg was painful for a long time. I felt so frustrated that my leg was giving me jip. The nurse said they had probably touched the muscle during surgery. I felt that it would never be any difffrent. Gradually after a few months I can now walk a fair way. I still can feel the pull but its not bad. It is the scar It’s so rough. They offered me an op to put tidy it up but I cancelled it as by then I was beginning not to trust the surgeon. Saying that the nursing staff have been so caring. I am having radio therapy so feel I have come a long way. It has been a strange journey.

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Hello - how are you all feeling now? I am just about to have this surgery and hoping that a few years later it’ll have improved! However, my surgeon says he’s only done the op 16 or so times. I am very fit and healthy - just ran a half marathon this weekend - and very scared of not being able to exercise or look after my baby daughter properly.

 

Thanks

 

 

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I had TUC flap reconstruction for BC  in June 2015 all went well at the time and I recovered fairly quickly and well ,  just the inner thigh scar is stretched in places as it got infected and there are some areas of numbness. I also had four rounds of chemo post surgery. 

Lately two years post surgery I’m now getting disturbing pains down the  surgery leg  which seems to be happening more frequently and becoming more and more painful  .

I’m also struggling with fatigue again having had many months when I was feeling so much better and thought I was over everything it’s staring to get me down now !! Has anyone else suffered in this way ??? 

Trying to keep strong 

Angella xxx

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 I had TUC flap reconstruction for BC  in June 2015 all went well at the time and I recovered fairly quickly and well ,  just the inner thigh scar is stretched in places as it got infected and there are some areas of numbness. I also had four rounds of chemo post surgery. 

Lately two years post surgery I’m now getting disturbing pains down the  surgery leg  which seems to be happening more frequently and becoming more and more painful  .

I’m also struggling with fatigue again having had many months when I was feeling so much better and thought I was over everything it’s staring to get me down now !! Has anyone else suffered in this way ??? 

Trying to keep strong 

Angella xxx

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I had a TUG reconstruction five years ago for bc which went well with no problems and an excellent result all round. Owing to a strong family history of bc I decided to undergo a risk reducing mastectomy of the other breast with TUG recon. Disaster!

I assumed the same surgeon would do a similar job but on relfection I feel as it was not for bc he delgated it to a junior surgeon. Not only was the breast recon smaller and, in my opinion, poorly done in comparison to the first op, when I awoke from the anaesthetic I found my leg was paralysed! Initially I was told it would take a few hours to get the feeling back but the hours stretched to days, weeks and I was told by one Professor of Neurology that I would probably never regain full mobility and I should sell my car and buy a manual and use a wheelchair for long trips.

In the end it was six months before I was walking well enough to go back to work and drive again. I did loads of physio, exercises, massage and acupuncture to try to recover from the injury which is known as  ‘drop foot’. I experienced real stress and worry and had to self refer to a nerve specialist and undergo lots of nerve conduction tests etc. The hopsital denied any responsibility but researching it myself I found nerve damage of this kind is not uncommon in patients undergoing hip replacements. It seems that poor positioning or undue presurre on the knee when the patient is in the surgical position can overstretch the nerve and cause damage.

As said the hospital and doctors I saw all closed ranks and said it was just unforseeable and down to my physiology but I have heard since of another woman who had the same problem so I firmly believe it was careless treatment on the op table. Also my consultant later told me she has ‘noticed the surgeon takes more care when positioning his patients’ since my case.

This injury was totally unexpected by me and my surgical team - I felt had I been warned that I could exeprience permanent damage resulting in me being unable to walk, run, kneel, drive etc I would not have undergone this op.

Difficult choices - I am sorry if this worries anyone but I do wish I had known it was a possibility before hand as it seems that I was very luckly to make a full recovery from a drop foot injury as many people do not. Knowing I had chosen to take that risk would have made the result easier to deal with.

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Hello I am due to have my op in 4 weeks and I am so worried about it, I don’t have a lot of support, only me and my son who is 16 at home so I am worried about recovery and my limitations. How was it for you could you manage to walk around ok. I don’t want to be housebound for what they say 6 weeks onwards before resuming normal activities. I am having an implant removed as it capsulated and has caused me great discomfort. Now I’m wondering if I’m doing the right thing. Should I ask if I can try another implant? So so confused about scaring also. Did they take from both thighs.? I am in East grinstead on Wednesday for my pre assessment. How are things for you now.

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hi all. i am 8 weeks out from having bilateral tug reconstruction (march 21) and it’s been so very hard. i would never do this again or recommend it to others. having said that, everyone has their own experience.

 

i had stage 3 bc in the left breast and some suspicious spots on the right. since i also have family history i opted for bmx in february. my lymph nodes were negative but i still may need chemo and of course 5years of tamo. 

 

i was so scared of the recon but didn’t feel like myself flat, so i went ahead. when i woke from the 12 hour

surgery i had a cramp in my left calf and it stayed that way for an entire month despite daily massages. i also have tingling, burning, spasms, and general pain from my left hip to my toes. my skin is hypersensitive so wearing clothing is hard and shoes are harder. i can only walk for short distances before i am exhausted and almost in tears from the pain. i can’t sit for too long in a regular chair, and i can’t even lay in my bed comfortably. it is really so bad that all of my body is tensed up most of the time so i’m now having shoulder and other joint pain. i can’t work, or take care of my house. in addition to that, i can’t sleep because of the nerve pain and that makes everything worse. it has all taken such a toll and i’m really struggling to stay positive.

 

the surgeon apologized and said that nerve damage can happen and there wasn’t anything to do for it but wait. about 4 weeks later he finally gave me gabapentin, but it doesn’t always work. i had lots of support from family and even two weeks of service by a home health aid. they had to do everything for me-bathe me, help me dress, help me walk, they took care of my daughter, our house, and farm. i still have to have someone come in to clean, do dishes and laundry. my farm is a mess at this point.

 

i also had my incisions open in three places. the worst was on my inner right thigh and was three inches long by 2 inches wide. it opened three weeks post-op and it was a big gaping hole in my leg and i could see my bone! noone seemed fussed at the surgeon’s office. their solution was for me to pack it with saline dampened gauze twice a day. it was too much for me and i started having panic attacks. finally the surgeon stitched it closed this past week! the other leg had a small one but it is nearly healed. my right breast also opened close to my armpit. i had to pack that one too but it is on the mend–i guess.

 

the surgeon told me that this was a journey and it could take 18 months with multiple surgeries/revisions to get it right. looking back on that i can’t imagine what the **bleep** made me think that was ok. i should have stayed flat. i was feeling better and stronger and i just should have been happy with that. i think i was seduced by the idea of getting a thigh lift and a set of new perky breasts; like that could ever be worth the hell i’m going through now. oh, and they both look like crap.

 

my two cents–just don’t do it. stay flat or go flat it you have to have implants removed, don’t destroy the rest of your body.

 

good luck with your decisions.

 

 

 

 

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Thankyou for your reply I am home now, been home nearly a week and I think I’m happy lol… I must admit the shape of my new boot is amazing and no scaring. My leg in the other hand I must admit I’m a little shocked at how far the scar goes round, and it seems very raised. I was supposed to have both thighs used but they ended up only using one and liposuction to the other leg. I do hope that they will look the same as the thigh which was operated on is very tight. I was in hospital for 12 days as needed a blood transfusion and a second op to remove a blood clot. All ok now apart from the uncomfortable sitting down. My thigh is very hard but I suppose it’s early days and internal bruising. Glad it’s all over and I now need to get uplift surgery .for the other side. X

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I had a TUG flap surgery on my right breast 4 weeks ago after bmx, chemo, radiation (treatments that ended a year and a half ago) and infected implant had to be removed a few months ago, leaving TUG flap as last option as skin was so damaged and tight after radiation. This was a tough decision as this was definitely a major surgery. I had flaps taken from both thighs, and initially was pleased cosmetically with the result but one of my flaps died after 5 days, so I had to have a second surgery to remove half which was pretty traumatic to think I wasted my flesh. The worst part by far has been the pain in my thighs and dealing with the healing, drainage, and now almost 4 weeks after first surgery, my lthighs are still swollen ( had drains in for 17 days) and I believe I have seromas or infectiona now (we’ll see at my follow up appt in 2 days). This has been a rough road all to try to get back to feeling and looking normal. With all of the complicatiions and pain, and who knows whay lies ahead, at this point I still don’t regret the decision to do the surgery because I felt so disgusted when I looked in the mirror and could see my rib cage and burntskin fromr radiation that I was willing to go through all of this not to have to see that reminder of the bc every day. My legs were also made worse because my dr used surgical glue on top of sutures which I am allerrgic to so my thighs have been red , itchy and inflamed for weks. Definitely do your research on your surgeon and do not let anyone inexperienced touch you. My surgeon tried to delegate my second surgery to remove the failed flap to his inexperienced assistamt, and I refused to let him and had to wait until the evening when my surgeon was available. If you are able to deal with wearing inserts in your bras, you might not want to go through all of this. I was willing to chance it and maybe just to stubborn to admit maybe it was a mistake. I wish I could havw loved my body the way it was but I didn’t. Now I am not sure what is worse- these huge scars own my inner thighs and not being able to sit, walk or stand comfortably which my surgeon downplayed beforehand, by rhe way. I am a confused mixed bag of emotions right now as you can see, and I actually didn’t read too much about ir bedorehand because I knew it would scare me out of doing it, i say pray in it, make your decision, and don’t beat yourseld up about it or have any regrets, and tough it out. You will definitely need support to get through this. (My friend had to come on day 4 after surgery to give me a shower while my husband was at work.) If you decide to go through with it, give yourself plenty of time to heal both physically and emotionally. It is a complicated surgery but it’s worth it if you get good results in the end. Best of luck!