Tomorrow is the day I am supposed to be at the Hospital at 5 15 I believe...
The Carotid bypass was a success! And was bypassed to healthy tissue. The are not 100% sure if the subclavian bypass was a success. And I have been having a lot of nerve pain after the surgery in my left hand because of one of the incisions where they messed is of my nerves. They say it will get better in a relatively short amount of time. My hand has been hurting worse than my 3 incisions.
Thank you for your prayers!
Wonderful news! Wishing you a speedy and complete recovery!
Hi Beka and all, I am new to this group. I am really inspired and admired how strong you are Beka after reading your blog and this page. I wish you well in your speedy recovery from surgery. Apologise for barging into these thread of conversations. I would like to know more about the disease. I am pretty anxious and scared. My Rheumatologist is suspecting that have Takayasu Arteritis. My both carotid has stenosis, the subclavial artery to the left arm and both renal arteries. The strange thing is my ESR and C-Reactive Protein shows no sign of inflammation. I do not feel any pain or symptoms at the moment despite of my stenosis everywhere. I wish to know if your ESR and C-Reactive Protein had shown inflammation result before they say its TAK. At the moment they prescribe aspirin, hypertensive and statin medications even my cholesterol level is normal. No prednisone for me yet since I argue about it if thiey are sure of TAK and not something like FIbromuscular dysplasia which mimic TAK. Thank you and will appreciate it very much if anyone can give advise. God bless you all.
Hi Amie! Im sorry you are having a tough time. To answer you question. My ESR and CRP levels didn't show much such of inflammation until right when they found my left common carotid and left vertebral arteries were 95%-100% occluded. Until then I had just been on a baby aspirin after they found my left subclavian to be completely occluded... They thought I was in remission. I know the unknown can be scary...but, hope in The Lord... He won't leave you. You may not always understand His ways but keep hope! One of my scriptures is Psalm 118:17 " I will not die, but live,And tell of the works of the Lord. " I say this multiple times a day. :) Do you have a support team at home?
God Bless you as well!!!!!
Only my husband, we do not have children. We have friends here but does not really understand this as well. My family are all overseas. They will come in if I will have a recommended surgery. The reason why I joined this as a support group and to learn more from actual patients. I live in Melbourne Australia and my doctor said I am a rare case with some aneurysms in spleen and aorta. So they want to know exactly why narrowing is happening. My carotid stenosis in the right is >70% and left is 80%. My subclavial is also occluded, renal artery is >60%. Kidney function is normal, for some reason I do not feel any pain. Thank God. So basically they are on a wait and see situation for me. Doctor told me not to get into strenous activities and as much as possible no travelling at this time. I am outpatient at the moment. My next appointment is on Wed. I will ask though, even I am not in any symptoms or pain at the moment, is it okay to ask them what is their benchmark for any surgical procedure. My feeling of wait and see its like I have to wait for symptoms before they do anything. By the way, I have one question, before your carotid surgery, when you lie down on your side where narrowing is, do you hear in your ear any whooshing or beating sound ? Thanks.
I sometimes hear something in the back of my head... Sometimes even still.
Thanks for the info. I hear it in my both ears sometimes loud when I am lying in bed. I am very skinny and very susceptible to colds. Reading all those side effects of prednisone and cytotoxic drugs, I would rather have surgery done for the occlusion than taking all these. I do not think these drugs is really helping after analysing and watched entire Symposium of Vasculitis and Patient Stories, TAK has about 90% remission and 50% relapse. So if this is the case, and it was clearly mentioned. This disease has no cure and prevention. They claim Prednisone et all will control TAK. How come there are relapse. So I do not see the logic really!! Pain and inflammation should be treated with NSAIDs , non-steroidal drugs combined with aspirin and hypertensive medications. I know Doctors will hate me for saying this. It is just concerning to think, while having this TAK condition, those drugs they prescribe is making the immune system shut down therefore no way body can fight back to pain and inflammation. And we end up with a lot of other trouble like high sugar (dabetes), eye cataract, elevated BP, ostheoporosis, mood swings..etc... As a contribution to this group and research of this disease. I will challenge and questions the medical experts with my current condition, with my consent and full responsibility to prove a point, I will not accept script of Prednisone. I am saying this because I feel with those types of stages of TAK, first is Pre-Vasculitis stage- where fatigue, fever, joint pain, weight loss, skin rash and headaches and some other symptoms, then the second is Occlusive stage - where narrowing and inflammatory stage which cause pain in extremities, joints, arm numbness, blurry or double vision, headaches or combined with pre-vasculitis stage. Then Remission stage and finally Re-lapse. It is a chronic disease and need constant monitoring. So even the expert found it hard to draw a line when increasing and decreasing dose of prednisone and combining with other cytotoxic drugs. I have seen your actuall stories that they just determine dosage on a level based on its activity level. So, this is giving me a sort of opinion, they are also clearly doing a trial and error. Getting back to my point now, I find my condition in occlusive stage and have no pain (yet), ESR of 22, all blood work normal, no history of strokes (thank God!). So granting if I have this started several years ago, with minor symptoms (as I remember I have random headaches), and occlusion progress very slowly, so does this mean its active or in remission? I asked this to my Rheumatologist and he could not give me any accurate or definitive answer. All he thinks I should start Prednisone regardless. I told him, give me a clear/concrete evidence that Prednisone really controls. Otherwise, I would not take it with my consent and full responsibility and let us see what happens. Anyway, this rare disease is also known as a"wait and see" rare disease and we could not relax that it is gone completely. If you are interested, I can give you updates. Apologies for the length of my comment. Our Father in heaven shall heal all of us!! Keep the faith alive!
Btw, the Stroke Team, who is my Primary Care who coordinate with other specialists (Renal, Rheumatologst & Vascular Surgeons). They refer me for a second opinion outside the hospital where I had the initial dagnosis to an expert Neurologist of another hospital. I will see him next week. Surprisingly, there is no Cardiologist in the team that checks me. Maybe I should ask for one.