Need advice on Future possible Surgery and the Hi Risk I'm told I am!

Hi All! I've been hiding lately from my illnesses, as I'm sick of docs, INR levels, RA, Sjogrens and the like... I seem to be putting my head in the sand!!! I had an MRI of my good legs' knee, as I lost my left leg, I call the rt. Leg my good leg! Lol... I had it done about 5 weeks ago and have not gotten my results as of yet! I'm scheduled for another MRI of my throat! B4 I even knew I had APS my first problem was having trouble swallowing back in June last year! I went ENT & she told me she has no idea why other than GERD! This primped me and Doc agreed that I see a Neurologist! He just wrote me off as having a virus going thru my body! Lol... A big virus and partially true as APsnotsofab sent an article wit much information about autoimmune diseases and viruses! Now my dilemma is swallowing and a constant gruff throat and was recommended by my ENT Doc to see throat specialist due to fact that my throat so badly swollen and small airway to breathe, she cud see nothing! This specialist said I have a severe case of GERD & a small spot on vocal chord and one side of my throat more swollen that the other! He then wanted me to get a CAT SCAN! He put down with CONTRAST! In my chart in BOLD LETTERS it state ALLERGIC TO CONTRAST! Therefore that red tape cancelled and MRI of my throat has been scheduled! I'm in no rush as I went away for 2 weeks to Nashville,& Memphis Tennessee! Just wanted to be happy and have a good vacation for my Hubby's 84Th Birthday! He has Alzheimer's and this was his wish to go there once more b4, his disease escalates! He is cognoscente enough that he sometimes knows he has it! Poor guy! The throat specialist said he won't by oozy that spot on my vocal chord because I'm too hi risk for surgery! I spoke to my Hemotologist and he agrees it shud be biopsyed & wants to speak with me about finding someone who'll do it! Why are we at hi risk? B4 they knew I had tie I've been operated on more than 20 times! So what's the big deal now??? I do know warfarin is one reason, but I can go on the tummy shots instead? Correct? I just don't know anymore & don't think I want to know! My headaches still every morning and I'm tired of this all! Do all of us get these moments and times like the? Ones where we want to forget, stop all meds and just GIVE IT TO GOD??? Thx in ad anytim your amazinly helpful responses! Y'all are truly dedicated to this thoroughly brilliant site that held me and many others! The dedication our Representatives show us is uncaningly amazing and so selfless! I honor them with The utmost RESPECT!, They answer all of us so brilliantly!!! Godspeed!!!

10 Replies

  • Knee surgery can be difficult. My other half just had a replacement and was given a Aircast cyrocuff and cooler to use. Its brilliant as you put the cuff round the knee, put the ice in the cooler and then the cool iced water goes into the cuff. It immediately takes down swelling. Im sure you could get hold of one and they are well worth the price. Also make sure you elevate the leg higher at night so perhaps try and make the end of the bed higher with something or put something under the mattress. I would also advise on support stockings up to the thigh. As far as pain control, you need to make sure that you are taking it regularly so that the pain control is enough to allow you to move around but is also controlling the pain. You don't want peeks and troughs. Think of a straight line and don't let your pain dip below of go above it - must maintain that line which should be the little or no pain line. Hope it feels better soon.

  • That sounds brilliant do they do a top to toe version? If so I will order it now. MaryF

  • Yes you can be bridged onto heparin if you need to have a procedure done. Its unfortunate that a Dr refuses to treat you just because he/she is more concerned about their insurance than they are about treating their patient but in the USA many are dictated to by their insurance companies Im afraid because of the high costs of insurance. I think its just a case of finding a Dr who understands APS well as they usually have a network of other Dr's around them who can treat associated conditions.

  • Hi Notsofab fab! I recently took my dear friend to new Hemotologist she was recommended! Is he has a blood clotting disorder called PROTHOMBINTINE Gene Mutation! I told him I had APS and he said yes another blood clotting disorder that he was testing my friend for! This man impressed me! He also does his own bloodwork by looking at her blood thru his own microscope! I was amazed at this, due to the fact that u NEVER hear of that! Amazing doc and amazing bedside manor who really seems to know what he's doing! I recently had not so good experience with my Hemotologist! I had my INR drawn at the lab! He needed my tests on this past Friday because he was going on vacation! I even called office to remind him to call me! He never did! So I called Momday and got office worker and said I wanted a call from another doc because my INR WAS only 2.2! Too low! I'm good at 3.7! Of course they NEVER called back and I called on Tuesday and was very upset! Other doc there has no idea about my condition told me to do what I was doing till Dr. D came back! This is the incompetence that causes me trouble! My legs are cramping and headaches bad every day! My sis said to go bak to other regiment that raises my INR! I did and I'm feeling a bit better! My Rt leg has pain in calf! My doc may be back this Monday and I will speak to him because this is 3rd or 4th time he's done this! I find this very incompetent and am upset and plan on telling him! This is my body and my life they choose to play with! I hope and pray you are doing well my dear! Any suggestions? Thx from across the pond!!!

  • Have you been given LMW Heparin such as Dalteparin to inject if your INR goes below a certain level such as 3? If not I would set that up with your Dr so that when these situation come along you have a back up to keep thinning your blood until your INR is back in range.

    Sounds like a change in Dr is needed and perhaps that new Dr is a good candidate!!

  • Yes thx for faresponse! I have Enexoparin shots in house, but wasn't sure to do them! I think I may change docs! I go for MRI of my throat Monday afternoon! I've been putting it off, but maybe a goiter as Mary says! They did see small spot there , but this doc won't do any biopsy on it cuz I'm too hi risk as we've discussed before! I also have Sjogrens & LOOKD it up and says people have trouble swallowing, but nothing about swollen throat!!! Have a nice weekend!

  • Hi Deb,

    I keep my fingers crossed for you on this Monday afternoon!

    Good Luck. Bless you Deb!


  • Debbie - if you have the shots you must use them when your INR drops below whatever the level you set with your Dr . What was that , was it 3? Then you must have your INR checked until it returns to the correct level then you can stop doing the shots.

  • Please do also check your thyroid, and not just the TSH test, have they checked to see if you have any form of goitre? The tests that will really who what is going on with a possible Thyroid problem no uncommon with us lots are these:

    Sometimes the most obvious thing such as the elephant in the room is overlooked! At least rule it out.


  • Yes Mary had my thyroid checked! They say no, and they did the extra tests! I aware I have a goiter! I scream all day long because my husband is deaf and has refused to wear his state of the art hearing aids! Sad now he has Alzheimer's disease and life has thrown me another curve and I fight to keep my head together every day! My mentally disabled son also had of hearing/ HOH! So the prospects of me having a gouged are hi! Whenever I speak I'm straining my voice! Today my quiet day! I must make my spot for an MR I! Been approved, but I'm dragging my feet on this one! Thx as always for ur great advice!!! GODSPEED

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