Surgery? The effects on Behcets? Anyone? - Behçet's UK

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Surgery? The effects on Behcets? Anyone?

ambersorganics profile image
13 Replies

Have any of you here experienced adverse reactions or complications of major surgery whilst dealing with Behcets? I am due for kidney removal (cancer) in a few days and am apprehensive about flares ups and throat blistering. I get very dangerous and aggressive internal bleeding. I would be so grateful for your input.

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ambersorganics profile image
ambersorganics
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billi profile image
billi

Oh I'm so sorry, you really are having a tough time. I can only tell you that I've had two Caesarians, not across but straight down due to complications but not anything to do with Behcets or losing blood. I also 12 years ago had a bad accident and had four operations in 4 days to save my foot. Again all went well and not a lot of blood loss. Obviously we are all different but I'm sure your doctors must be aware of any complications of the op itself but also with regard to Behcets.

I will be thinking of you and I wish you a safe and good outcome.

Hugs

Billi

ambersorganics profile image
ambersorganics in reply to billi

Billi, bless your dear heart. Thank you. Encouraging words really are the fuel for survival at this time. I am trying to get hold of the anesthesiologist to make sure he is aware of the fragility of my throat, not an easy task they can be elusive. I shall also go down to the hospital prior to surgery to see what it is like and talk with a nurse about any "needs". My surgeon just said I have no choice because if the cancer spreads they can do nothing at all, great comforters! I do understand his logic, caught between the devil and the deep blue sea as to say. You too have endured so much, I pray you go from strength to strength. Was your recovery slow may I ask? Was it better than you has envisaged? Thank you again for taking time to write, it means a great deal to me.

billi profile image
billi in reply to ambersorganics

Yes my recovery was long but good. I can walk well but get sharp nerve pains at times. Still I do have my foot and mobility, very grateful to the wonderful surgeons. So many nurses and doctors,registrars came to look and guess what the accident was. Nobody ever guessed correctly. They thought, road accident or high fall but I was actually making the bed. My good foot got caught in the duvet cover and I couldn't put my hand out as I had carpel tunnel surgery the day before, so my I fell backwards full weight onto my left foot...3 brakes and a bad dislocation from big toe to ankle. I hope this makes you smile...lts true honestly.

Yes please stay positive and strong, worrying won't change anything. Do let me know how you get on.

Billi

Jaxxi profile image
Jaxxi in reply to billi

Oh Billi, the dangers of housework! I tripped over the washing basket and broke my arm and shoulder. What are we like? x

billi profile image
billi in reply to Jaxxi

Yes I'm much more careful nowadays. They do say that the most and worse accidents happen in the home.....so we are two of them😊😊

Hi,

I am not sure if you are in the UK but if you are then you should have had a pre op Assesment. Behcets can cause problems post op and they need to be careful with IV lines ( especially arterial ) as they can cause pseudo aneurysms apart from the problems with your throat as intubation could lead to further trauma.

Has your surgeon spoke to your Behcets specialist? I don't wish to concern you but I would insist on a multi disciplinary team approach. Surgeons are notoriously poor at understanding medical conditions especially complex ones.

ambersorganics profile image
ambersorganics

I was in the UK most of my life, I am British, but moved here several years ago to the USA due to lack of medical care in England. Long story. I ended up staying and getting married. I am really grateful that after years of seeking, searching and struggling I finally have a good team of specialists and full diagnosis. I have several other rare immune deficiency's conditions that aggravate the Behcets, and then cancer was found last year. Anyway, I agree, surgeons are meager in their knowledge of unusual conditions, mine just wants to get the cancer out, which of course I understand the urgency. He is the best kidney cancer surgeon here, his reputation is excellent but I still want him to be more communicative. I am pursuing him speaking with my rheumatologist who is outstandingly informed about my conditions. I am trying to get hold of the anesthesiologist (as I wrote in my previous comment) I am really going to make sure I speak with someone before the surgery date. I think here, the pre-op assessment is on the day of surgery, actually just prior to it, not good in my mind as one might be too drained and stressed to think clearly.

Thank you, for such good and practical common sense responses, I certainly am taking heed of your thoughts on these complications.

cindy2002 profile image
cindy2002 in reply to ambersorganics

Hi Amber, I am in the US as well. I am American, although I was married to Brit for 12 years. We lived here in US but we did spend a lot of time in U.KNOW. I am sorry to hear of your cancer, your surgery...it's a lot to deal with. I would be sure that your surgeon and rheumatologist worked together as far as communication and Behcets. I am curious, if you don't mind, what part of the U.S. do you live?

Cindy

cindy2002 profile image
cindy2002 in reply to cindy2002

U.K. my post was adding letters.

xandii profile image
xandii

Hi Amber,

I can really sympathise with your position !

I had a radical hysterectomy and removal of other bits surrounding when I was 28 due to cervix and Uterus, surface and glandular cin 4, in other words cancer.

My operation went well but they did have quite a flap on because I bled so much and they couldn't stop it easily. It sounds like you may have a similar problem so make sure the surgeon is very aware that you are a bleeder so that they can prepare for having to take action quickly if necessary.

You will probably get a sore throat after the operation anyway from where they take the tube out that you have inserted during the operating process so remember to take some throat lozenges and any other preparations you take in with you to hospital.

The biggest thing is to stay calm about the whole thing. Easier said than done I know ! Lol. Staying calm and believing the surgeon is going to remove everything he needs to and leave you a much healthier young lady afterwards is a great thing as you will sail through the operation if you are not fretting before hand.

Just remember to take everything in your stride and you will bounce back from this operation quickly and be much happier afterwards with the weight of this hanging Over your head now gone !

Take special care Hun, I will be thinking of you okay ? Mwah 💋

Remember ..... Positive Mental Attitude is the best thing you can have to help right now.

Big special hugs,

Luv X xx

Ps I was back at work in full swing in ten weeks ....... actually much quicker than most women after just a routine hysterectomy ! Lol.

Jaxxi profile image
Jaxxi

Hi. I have had ankle keyhole surgery recently - not exactly major but was under the knife for an hour. Recovery was really good then a week after the op the stitches on one of the wounds became inflamed causing a lot of pain, swelling and tightness. No signs of infection. The pain resolved almost instantly as soon as the stitches were out. I am pretty sure I was having a 'pathergy' type reaction to them. Strange that it was just the one of the wounds, but that's Behçets for ya.

I was given an anticoagulant to inject once a day for a week after the op due to the increased risk of DVT with BD, - obviously you won't need this - but apart from that my treatment was no different.

Hope all goes well and your recovery is uncomplicated.

J

Dan_NY profile image
Dan_NY

I am a bit surprised at the anesthesiologist. I had knee surgery in August. Not major surgery by any means, but the anesthesiologist was adamant I have a physical check, ekg, and a few other things before I was cleared for surgery. If I would not have gotten clearance the surgery would have been cancelled/postponed. I did want the medical team to know about Behcets and filled out the paperwork stating my medical conditions. Keep trying and maybe ask the rheumatologist to help contact?

Good luck... You are in my thoughts as well.

I just got non invasive back surgery for a herniated disk and about a week and a half after I am having some symptoms but that could be from meds, stress, or change in diet.

I have mouth ulcers, a little discomfort like genital users may show, my legs ache and my bottom front 4 teeth ache

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