Scar tissue

[Proud to be erratic]

@zippyjojo said earlier in the Group 7-day waking average post:
This morning I had my first Scar Tissue massage which was absolutely brilliant and I'm so pleased to have found out about it. The practitioner was incredibly knowledgeable and explained all about what would have been done to me when they operated and basically no wonder I've had so many weird knotted, tethered feelings ever since. She worked on me incredibly gently for nearly and hour and has given me some homework to do and I'm seeing her again in a month.

This reminded me that I meant to post a cautionary note for anyone who might have had major surgery at some time, not necessarily very recently. I had a Whipple's Procedure in Feb 2020 and the pre-op notes had a moderately long list of risks associated with the surgery, which included scar tissue. The list also included death and unsurprisingly I was more interested In understanding that risk and didn't pay any attention to the scar tissue potential!

In June this year I ended up in A&E after a painful weekend and feeling poorly and bloated. I'd resisted calling for an ambulance over the weekend, which turned out to be a poor decision. After X-rays and a scan in A&E they diagnosed that my upper colon had become snagged and twisted on the scar tissue from Feb 2020. They also determined that above the blockage I was "filling up" with what was a singularly foul and poisonous fluid, that was imminently going to overflow into various cavities - with seriously life-threatening consequences. A tube was immediately put in and I was promptly "drained". The A&E Doctor told me I had been very lucky, a little more delay could have been very serious; and it had been fortunate that I rested through the previous night sitting up, because I felt so nauseous. After 3 days nil by mouth I had further surgery, on the line of my existing scar (so now more scar tissue and the 3rd time of opening that up)! I spent almost 3 more weeks in hospital and needed several more weeks to recover from that.

What I learnt from this was that scar tissue can become very problematic; apparently my 27 months was relatively short, it can be many years before scar tissue can harden and interfere. I also learnt I should not have delayed seeking medical help; I simply had not appreciated how scar tissue could become so troublesome and I'd effectively ignored the declated written risk.

Now I just have to find where I can get scar tissue massage. I don't want to be opened up again!

 

[everydayupsanddowns]

Thanks for sharing @Proud to be erratic 🙂

 

[zippyjojo]

Wow - that must have been incredibly frightening for you. The practitioner (who is also a physio) did say that it's not commonly known about, which seems so ridiculous. Funnily enough we're hoping to move up to the Lake District and I recently saw a poster in a shop window for Scar Tissue massage so I'm very pleased about that. I know it's early days but I've realised that today I'm feeling much less aware of my abdominal area. I will be counting the days until my next appointment in a month but in the meantime will be doing my home-work very gentle stroking and cupping exercises that she gave me to do. Thanks @Proud to be erratic for picking up on this.

 

[helli]

@Proud to be erratic sorry to read about your scar tissue problems.
You have reminded me of a diabetes related issue with scars: it can seriously affect insulin absorption.
The advice I was given for my pump was not to place it any closer than 5cm from a scar. Thankfully, the only scar on my abdomen (I seem to focus scars due to injury on my hands and legs) is from keyhole surgery so less than 2cm long. However, I need to be aware of it for insulin dosing - the difference with absorption is very noticeable if I place my pump too close.

 

[eggyg]

I have adhesions on my small bowel caused by scars from my surgery. Two years ago I was in hospital with a bowel obstruction. I never want to go through that again. They opted not to do surgery and I had a gastric nasal tube for 48 hours which did the job. Again not something I want to make a habit of. I now eat a very restricted diet, low fibre, no seeds/nuts/skins, limited fruit and veg and small potions. Pretty miserable but better than having my bowel burst I’m awaiting a colonoscopy to check it out as I’m suffering from terrible bloating and nausea all the time. I feel like I’m a ticking time bomb sometimes. I saw @zippyjojo’s post re scar massage I think 15 years post op might be shutting the stable door after the horse has bolted, I wish I’d been better informed all those years ago. But I’ll just keep doing what I’m doing as cr*p as it is at times.

I was also told not to inject near scar tissue, quite difficult in my case as I’ve had two lots of major abdominal surgery and my stomach looks like a hot cross bun!

 

[Proud to be erratic]

@zippyjojo, I had a preliminary consultation with a scar tissue therapist on Monday, who told me that her therapy tended to be for people with difficulties with the surface scar. Although she recognised that I had deeper "knotting" below and just beside my scar - she couldn't be sure what help she could provide. She described my surface scar from 3 years ago and two more openings on it in mid 2022 as beautiful, totally healed and already fading away, certainly not needing any assistance. It seems to be a question of whether there are deeper adhesions from the surgery, or possibly some sort of protective muscular response to the trauma of being opened 3 times in the last 36 months.

Would you mind saying a little about your scar tissue treatment, please? Is the therapist working on the surface scar or on problems below the surface? Did your therapist distinguish between the 2 possible problem zones? Also how many sessions does your therapist think you should need? Do you have follow-up exercises you have to do between sessions?

My therapist is from the Rennie Grove Complementary Therapy and Support services; although the paperwork (consent forms, etc) claim their therapists are not specifically medically trained, the lady looking after me is a former SRN, seems very knowledgeable about my surgery and the consequential D and her scar tissue accreditation is with the Emma Holly company known as Restore Therapy. I have no concerns about her qualifications, but wasn't sure whether I really need physio rather than scar massage, to reduce the so-called "knotting"? Perhaps the boundary between adhesions and muscular response is inevitably vague. Unluckily I was due to have a physio session tomorrow (actually for accupuncture for a different problem, trying to remind some nerve endings that they need to pay attention to signals from the brain - who knew that needles between one's toes and in the scalp could join dots between the brain and abdominal area? .... !). Alas this has been postponed, so I can't "quiz" that expert!

 

[zippyjojo]

@zippyjojo, I had a preliminary consultation with a scar tissue therapist on Monday, who told me that her therapy tended to be for people with difficulties with the surface scar. Although she recognised that I had deeper "knotting" below and just beside my scar - she couldn't be sure what help she could provide. She described my surface scar from 3 years ago and two more openings on it in mid 2022 as beautiful, totally healed and already fading away, certainly not needing any assistance. It seems to be a question of whether there are deeper adhesions from the surgery, or possibly some sort of protective muscular response to the trauma of being opened 3 times in the last 36 months.

Would you mind saying a little about your scar tissue treatment, please? Is the therapist working on the surface scar or on problems below the surface? Did your therapist distinguish between the 2 possible problem zones? Also how many sessions does your therapist think you should need? Do you have follow-up exercises you have to do between sessions?

My therapist is from the Rennie Grove Complementary Therapy and Support services; although the paperwork (consent forms, etc) claim their therapists are not specifically medically trained, the lady looking after me is a former SRN, seems very knowledgeable about my surgery and the consequential D and her scar tissue accreditation is with the Emma Holly company known as Restore Therapy. I have no concerns about her qualifications, but wasn't sure whether I really need physio rather than scar massage, to reduce the so-called "knotting"? Perhaps the boundary between adhesions and muscular response is inevitably vague. Unluckily I was due to have a physio session tomorrow (actually for accupuncture for a different problem, trying to remind some nerve endings that they need to pay attention to signals from the brain - who knew that needles between one's toes and in the scalp could join dots between the brain and abdominal area? .... !). Alas this has been postponed, so I can't "quiz" that expert!

Hi Roland - good to hear from you. Funnily enough I was with the therapist yesterday morning. Her work is very much for the stuff below the surface - although she does do some light stroking and gentle manipulation around the external scar, which she said is very neat too (I don't know how these surgeons do it!). Her qualification is called "Scar Work" and if you google that and put in your area you will find therapists near you who do it. She is a physio too and I think personally that it's great that the two can go hand in hand. She does some brushing type movements on the scar but she also puts pressure and holds positions that you can feel working deeper. Yesterday she was pressing (very precisely) on part of my diaphragm. She also does a cupping type thing with her hand and that is one of the things that she has shown me how to do myself and also the gentle stroking exercises. So in answer to your question - yes it's the deep stuff which will hopefully be able to effect deeper scar tissue and adhesions. I told my surgeon about it and he seemed very interested. I'm seeing her again in 4 weeks so it's not a regular thing. I'm hopefully on the point of moving and have already found that there is someone up in the Lake District who I will seek out to carry on with the treatment. Good luck x

 

[Proud to be erratic]

Hi Roland - good to hear from you. Funnily enough I was with the therapist yesterday morning. Her work is very much for the stuff below the surface - although she does do some light stroking and gentle manipulation around the external scar, which she said is very neat too (I don't know how these surgeons do it!). Her qualification is called "Scar Work" and if you google that and put in your area you will find therapists near you who do it. She is a physio too and I think personally that it's great that the two can go hand in hand. She does some brushing type movements on the scar but she also puts pressure and holds positions that you can feel working deeper. Yesterday she was pressing (very precisely) on part of my diaphragm. She also does a cupping type thing with her hand and that is one of the things that she has shown me how to do myself and also the gentle stroking exercises. So in answer to your question - yes it's the deep stuff which will hopefully be able to effect deeper scar tissue and adhesions. I told my surgeon about it and he seemed very interested. I'm seeing her again in 4 weeks so it's not a regular thing. I'm hopefully on the point of moving and have already found that there is someone up in the Lake District who I will seek out to carry on with the treatment. Good luck x

Thanks Jo @zippyjojo, very clear.

I was finally discharged from my HPB Surgeon at the Churchill in Oxford in mid 2022, but my scar therapist has asked me to reach back to him to confirm that he has no concern over my receiving scar therapy treatment. I'm still, theoretically, under the Surgeon in Stoke Mandeville who did my emergency op in July 2023 and I shall be checking with him also about scar therapy. I can't imagine either surgeon having any concern.

By chance, I've just this morning had an unexpected teleconsult with my Oncologist, from the Churchill. I was expecting to speak with her in Feb. But she had my recent CT scan in front of her as we spoke and while the muscle detail was not clear from the scan, she could see some disturbance around the adhesions from my 3 ops, along with signs of a further hernia on the incision line. Not cancerous, I should add!

Good luck with your move. Our house was sold, but the sale collapsed (thanks to Liz Truss; our prospective purchaser had their mortgage offer lowered and they've now bought elsewhere. Still getting viewings, but infrequently). We are planning on moving from rural Bucks to Wokingham in Berks - so should remain within the Bucks, Oxford and Berkshire West Integrated Care System (BOB ICS) and so I'm hoping my Oncology and Diabetes care will remain at the Churchill. It is still a special place for me.