VY Advancement flap?

Peter, Yes feels tough sometimes but you do the best you can with what life throws at you dont you. I cannot believe it is coincidental that you started feeling better at the equivelant time as me. Your description sounds same also of still there but feels improved and manageable. Hopefully for you the diff is that yours continues as had really bad last 2 days although seems to be tied in with sitting down a lot which have to do at work. Will call Mr B tuesday for another Botox jab asap. Hope its not going to be a long bank holiday weekend waiting for Tuesday though. Feels like last chances aloon before the op. Are you still going ahead? Will check out oxygen treatment, sounds interesting. Steve

Steve, yes I am still going ahead when I hear from the hospital. I was told that it would be no later than the end of September but this is the NHS and if the surgeon is away in September I am going to delay it until he comes back as I want the person who recommended it to do it.

Assuming that I don't suffer a relapse when the botox wears off I could as I said just about live with it but it has not healed and is supported by an artificial regime so for me one further step is worthwhile. I don't think however that I would jump to a LIS just yet.

I am really interested anout the pressure testing so keep me up to date and also with what Mr B says about renewed botox.

Apart from that enjoy the rest of the holiday.

Peter, Am pleased you seem focussed on the fissurectomy. Guess you can get used to a restrictive way of living to avoid sgy at all costs but reality is the sgy will probably work and life will return to normal. Feel bit fed up today as really unsure what to do next. Like you am better than was but still very uncomfortable. Am booked in for pressure test on 16th which think could be useful info although think pretty certain going to come back high. If i wait until then i wont have any botox in meantime as would give false result. Be great to think about something else other than my backside to be honest! Steve

Steve, yes you are right. We could just bite the bullet and it will probably be all over. But I just don't get on with the thought of a muscle being severed.

It is a daily issue but I could add to it daily discomfort from an arthritic ankle, untreated hernia and a recently torn meniscus in my left knee. You have worse to deal with!

I telephoned the hospital today to find out what was going on with my \"no later than the end of August\" op to be told that nothing was booked!

Hi Peter, Been a little while and hope all going ok. Had the 2nd dose of botox with Mr B and seems to have made a diff straight away this time. Within 2 days pain virtually gone. Am aware things change daily but just enjoying feeling something positive for now. Have you got date yet for sgy? Steve

Steve, all good news for you. I am sure that it will continue.

I don't know about you but getting back to some normality is almost anti climatic!

I have held up pretty well after we had that sudden improvement a few weeks ago. After I have my bowel movement in the morning I am now pretty much pain free the rest of the day. When you think of the mental and physical drain of having to endure what appeared to be never ending pain you would think that I would be euphoric but may be it is the sensation that I am still not quite normal and it all might recur that is stopping the celebration.

I am still on stool softeners and prunes/flax seed oil diet and to be honest I have little idea at the moment whether that is going to be a long term regime. I doubt that the stool softeners are good for me but quite frankly I am not ging to risk the slightest constipation which would set

off another episode of what we have been through this year.

While I have my symptoms under control I do not have the feeling that I am cured so the botox fissurectomy is still on the horizon. I could live long term like I am but I would also take a normalised physical condition.

Having said that I am still not even scheduled for the op.

I did ask Mr B more questions about botox and his response was the effect of the Botox wears off in at about one week but the reduction in spasm persists for up to two or three months and it is during that time that the fissure heals. It may have taken six weeks to get to the point of real reduction in symptoms.

I thought that you were delaying the botox because of the pressure test?

Hi Peter

I think maybe the fact we are not corresponding so much shows improvement on both our parts. Your non euphoric description is spot on although after my last message some pain has returned after passing large stool. But even before this you cannot allow yourself to feel too positive prob due to all the downs that follow the ups which i guess is why some sufferers opt for the sgy regardless. I was due to have pressure test last week. I cancelled as two weeks before pain was pretty bad and made snap decision to have the botox next day which meant test result wouldnt be accurate after having botox. How are you managing other conditions, have they improved?

Steve, I am pretty much in the same place.

I can now live with my condition. It is supported by an artificial regime but then again I guess that lots of people have long term disabilities which require daily dietary modifications and pill ingestion together with a curtailment of normal physical activities. To that extent I guess that I should not complain too much.

For those however more interested in the course of the ailment- is there anyone apart from you and me?- the fissure seems pretty much resistant to healing fully. It is now a \"managed\" condition for me and I suspect that anything less than daily vigilence would set it off again.

I will for that reason undergo botox/fissurectomy when I get the hospital appointment. If there is a chance of full healing I will take it but

where I am at the moment I would not risk some surgeon cutting me open.

I am seeing the consultant for the hernia in early October but have put that on hold because of the fissure. Unlike in previous years doctors do not operate urgently as in most cases it will not strangulate and you can live with it depending on the discomfort until you feel the time is right for an operation.

It is a pity though that you do not also suffer from this condition. The condition is as fertile as this for differences of opinion on types of treatment-open v laparoscopic, mesh v non mesh, types of mesh etc etc We could have discussed the pros and cons of this for another few years and been paralysed into total inaction.

Hi Peter

Hope you feeling better and things continuing to improve. After 2nd botox 7 weeks ago things really started to pick up. Very little pain and discomfort but sadly started again last week for no apparant reason other than that Botox maybe wearing off. Going to book into see Mr B again and choice is either more Botox or LIS. Fissure looks healed but still pain now. Hope you fairing better.

Steve

Steve, nice to hear from you. Still seems am unpleasant journey without end for you.

As I stated before I am better in the sense that I can better manage my condition and the pain through an artificial regime but I have no sense that the condition is cured or that it will ever heal. Can this really go on indefinitely?

The saga over the botox/fissurectomy continues. I was due to have it in August. That never happened. Somehow that stretched to December and on checking last Friday with the hospital was told that it had been cancelled. I am trying to find out the story behind it.

I am not sure why you don't escalate to botox/fissurectomy rather than just botox. I still think that LIS is too radical unless you are really desperate.

One good bit of news: the hospital backed down over the £315 surcharge for the injection.

Hi Peter

Really pleased you got the £315.00 back. Its seems a bit silly classing it as a surgical procedure but maybe its hoped many dont query and it just gets paid. To answer your question why i dont have botox/fissurectomy combined is guess 2 reasons, firstly fissure is healed but i continue to spasm causing the pain so fissurectomy would actually reopen a healed wound and not cure spasm prob. Secondly success rate i dont feel as good enough for an op. I had 3rd botox last week and now in pattern of feeling good for about 6 weeks before pain returns. Agreed with Mr B to have LIS early january if not better. He feels no risk of incontinence or any prob as have been fine with botox and said will perform tailored `nick` into sphinc which is not full blown LIS. Hope your other health stuff isnt getting in the way of your recovery. Know what you mean about improvement without cure and whether to accept or not. Also hope appt happens soon and fissurectomy goes well for you. Keep me informed! Steve

OK Steve, that seems sound reasoning.

A mere \"nick\" might even persuade me that I was not having a LIS!

Mr B has suggested that I now simply wait and see what transpires. I think that I must have the exact opposite to you. Unhealed wound but no spasm which ended sometime after the first botox. For that reason he said that he would also consider the flap although I was not aware that he did that op.

I am seeing the NHS this week and will see what they have to say.

I am also at hospital tomorrow about my hernia which is being treated by \"watchful waiting\". As I previously said that's another saga

of conflicting advice and opinions about differing methods of treatment which vary wildly depending on who you see. Factor in surgeon reputation side effects which vary from non existent to \"I wish I had never had the op\" and you have a parallel with this experience.

Actually I think that this is probably an accurate reflection of the state of modern medicine. Most people will simply take on trust what they are told by their GP or consultant unaware of the complete variability of opinion and standard of skill. On the other hand ignorance can sometimes be bliss.

Hi Peter, Good to hear from you and hope hernia visit works out somehow for you. I know when people say that to me i often feel like telling them to p**s off as my experiences dont match others optimism.

Interesting development although not a good one my end. Am bemused why fissure looks healed but still have the pain, just doesnt make sense same as the spasming idea, why would it spasm if it is fixed? And on a forum i seen someone similar who said found out she had pudendal nerve entrapment. So booked in with yet another consultant who confirmed could be the issue although seems to me like too much of a coincidence that can have fissure and nerve prob at same time in same area. It isnt a pleasant condition and gets worse as time goes on so my 80% of day thinking about pain is now 100%. No pain relief after latest botox so to be honest dont know what to do next.

Re the `Nick` suggestion he did make it sound appealing and mentioned `no risk` of incon which felt reassuring but still struggling to understand why would need if fissure healed. Have you heard in your readings that pain/spasm can still follow on?

Steve

Steve, I am sorry to hear this. You are right though. Spasm should cause failure to heal.

If the usual model of understanding the condition is correct then

you should not have healed and if you have healed you should not have spasms. I have not read about anything like your condition, perhaps because it just does not fit in with the way the condition is understood.

To state the obvious it is either something else which is causing the pain or the muscle has somehow gone into a persistent cycle of spasm which is not easily broken.

Can all other causes be eliminated by e.g MRI? I think that I would want to know what is causing the problem before I received treament which is supposed to cure it.

I have had to put up with it a long time. You have had it as long but way tougher without real complaint. I have to believe and am willing that you will come out of this OK.

I am at StM on Friday. I will update after that.

Peter, Thanks for support. How did Friday go? Hopefully very well.

I have dismissed pudendal nerve suggestion, just seems to much of a coincidence. Met with Mr B again last week. Booked in for sgy before xmas. His new thought after examination is poss internal skin tag causing the pain so wants to try removing. Am still not convinced and have option to have LIS at same time to cover all bases (or nearly all). MRI scan was fine. Anyway feels all about me at mo and keen to throw support your way too. Keep me updated Peter.