Hi Everyone, Greetings. So from my previous posts I have stated I have been diagnosed with MS but also tested positive for Cardiolipin IgG (35). I have not been diagnosed with APS but I really have not been able to see a doctor who knows anything about it. I even printed off the list from here and gave it to my NP who I see for primary care but she is saying a hematologist is now added to the clinic so she has referred me to see him. I don't have an appointment yet.
So, after a second opinion a hysterectomy has been recommended for me. I am now worried and fearful. A major surgery already has risk of clots developing and being predisposed to clots I am so afraid of dying from clots doing such a surgery. I believe I do have APS and maybe I don't even have MS. I believe an APS patient doing surgery should have a specialist working with the surgeon pre, during and post surgery.
I do not know what else to do to get the proper care regarding the APS and I don't have money to travel to the UK. Has anyone had major surgery with APS and is there much to fear? Thank you.
Dee
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I have APS and I had cardiac bypass surgery in 2007. I was on Warfarin and I started Fragmin injections and stopped Warfarin a week before surgery and then re-started Warfarin on the day after surgery; keeping the Fragmin going until my INR level was back on target.
Thanks Dave. I only take aspirin daily. That's my concern that I don't have anyone to monitor my condition and treat me the way you have been treated before, during and after surgery.
Since I was diagnosed with APS I have had an ICD implanted. Admittedly, that was not major surgery. Where are you?
Hi I am on Warfarin and have had a hole in the heart closed, and most recently colon polyps removed, neither major surgery but in both cases, and at other times, stuck to the St Thomas' protocol which is as with Dave above, namely off warfarin in time for it to fall to around 1, cover with heparin injections with last on the morning before day of surgery. Then restart heparin cover and warfarin asap, sometimes within an hour, most recently next day.
I may have to return to St Thomas for oesophageal/ stomach surgery at some point, they say they are very familiar with treating APS patients (and I know they have a protocol) so I would be asking your doctor what arrangements they had in mind for you. It is normal to suggest, for people on warfarin, just coming off warfarin for four or five days before but you must insist that those with APS cannot go this route, that they must deal with coagulation and come up with an acceptable plan that minimizes the time you are uncoagulated and that they are alert to potential issues when you are uncoagulated.
Should add, that with proper arrangements, I have had no problems. The hard part is getting them to understand that we are different and normal just stop warfarin doesn't apply. The alternative arrangements seem to be getter better known.
Thanks Tim. As I said to Dave my concern is not getting the treatment you guys are getting now and having no one who is treating/monitoring me for APS. I only take aspirin presently as I have not had a thrombotic incident. They said I need to have one plus the positive test to be diagnosed with APS. I am almost certain though that the spinal lesions and hemangiomas in my spinal cord are caused from APS and not MS. My problems are totally described on the Hughes website. The foot drop, difficulty urinating and other neurological symptoms. Migraines since childhood.
Hi, I remember replying to you before, and I understand the language barrier re Quebec. but you MUST have a specialist who understands fully your situation and also possible need for maybe anticoagulation and 'bridging' if surgery is ever needed. There is of course the possibility of using language translation and writing to those on the list from APS Action in Quebec, and of course seeking an appointment perhaps with interpretation, it is crucial you have the correct medical and comprehensive support in place as this will provide you not only with the medical expertise but will also improve your confidence in any given situation. MaryF
Hi Mary. I did say I found some closer ones in Ontario here. I printed the list and gave it to my NP and she has not made the referral. She chose to refer me to a new hematologist in this city. I found out today he has not even started working yet. So I again asked to be referred to one on the list 2 to 4 hours from me.
A spinal tap was done which showed Obands. However blood was not drawn at the same time and tested for Obands so it makes the previous result null and void. It boggles my mind that a neuro could do such a half hearted job. The MS dx was partly made with that result.
Wow! That is totally pointless! Apparently from what I have read 95% of people with MS have o bands. However, they are not specific for just MS. They can be positive in lupus, Devic's, APS, etc. I'm seeing a new neurologist for a second opinion, and I am going to recommend a anti coagulation trial. They will probably look at me like I'm nuts, but really I think it is worth a shot. Hope you have good luck with a new doctor.
You need to educate yourself on this as much as possible. I was the one to inform my rheumy that I needed to be on plaquenil. This disease does not have many docs who know enough about it so your best defense for this is your own knowledgeable offense.
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