My testing update
As you know the last many months has been all about finding the sources to this severe periodic swelling I have had to my limbs which seems to be presenting about 40-60% of the time during a month period and is affecting mostly my legs and feet.
In the beginning the thought was first, it was linked to my Fibromyalgia....then they thought it must be related to R A, (Rheumatoid Arthritis) which along with Endo & Fibro, runs in the women of my family. Specialists (Rheumatologists) I had seen regarding these said Fibro does not cause swelling, it can cause puffiness, and though the fibro will greatly intensify the pain felt with this swelling, it could not be the cause of it. He did a blood test for RA; it did not show a rise in RA factor now, so that too was ruled out as the cause.
Next thought was Lymphedema, as I wrote here some time ago. I wrote about that test and how extremely painful it was, it still is shocking to me it could be so painful! I shared how in the end it said that my lymphatic flow was reduced, but not enough to be causing such severe swelling.
This was the point my Dr became allot more worried, the things that were left that could cause this swelling were things that needed to be addressed immediately. These being, blockages, clots, heart issues and tumors. Apparently there are tumours that grow on the Kidney and Liver that are famous for presenting these symptoms. I was booked for a number of tests and labs.
I had a C.A.T and M.R.I scan and was booked in for more Nuclear Imaging; the labs came back with nothing showing in my blood work, which was a relief as that helped rule out cancer causes for the most part.
Just this past week my C.A.T and M.R.I tests came back in.
These tests confirmed more complications being caused by my extensive pelvic adhesions. Apparently they have attached on to my renal artery leading into my kidney. I only have one kidney which we already knew for nuclear scanning in 2000 also had endo and adhesions attached to my ureters, and to a main artery. Since 2000 it seems this is now causing a strangulation of the renal artery which is causing severe restriction of blood flow to the kidney.
This restriction is affecting my blood flow and is causing circulation issues, which causes the pain and swelling in my lower limbs, and also would be the cause of the swelling to my hands.
There are a few big concerns that come with this D/x, the first being extra pressures placed on heart function, next is clot issues, this can cause clots to form that if released can cause stokes, heart attack, lung embolism and so forth. Another is extra strain placed on the kidney and damages that can be done to limbs that are not receiving adequate circulation. So that is the new diagnosis, though it is not the best news, it could have been worse, it could have been the tumor or any other number of issues, I don't like this one, but none the less, I now know what it is I have to contend with.
My new Prognosis;
Since I am in-operable due to the extensive, dense and calcified adhesions throughout my abdomen, surgeons will be very concerned about risking injury to major organs trying to cut through those adhesions to get to my renal artery. Surgeries to that artery at the best of time is a very tricky and risky venture, add to that bound organs, frozen pelvis and calcified adhesions and this relates to nothing less that a nightmare surgery with many known and unknown risks.
I am to see a vascular surgeon to discuss what should be done, we may have to wait until there is no longer time to wait....it may be safer to endure the pain and swelling than to risk further injury, hemorrhaging and so on. These are risks we will have to evaluate then.
The problems these adhesions from my 13 abdominal surgeries in the past never seem to stop coming up, just when one thinks it should be under control, as my last major surgery where they worked at cleaning some out was in 97.....since that time the 3 ab surgeries after has been an open and close affair as they not only could not cut through the calcified adhesions, they could no longer tell one organ from the other as they are bound in a large 'wasp nest' or 'cocooned' in these adhesions so when they go to cut they have no idea at all what lies under the scalpel.
In attempting any surgery surgeons risk cutting into anything lying beneath the adhesions and causing a life threatening event, or worse, damage may not even be known until it is too late, then fixing any damage is just as risky and can cause even further damage..... They have tried 3 times since 97 to try removing some of these adhesions, mostly to free my intestines and bowel areas that are being obstructed in a few areas and causing this extreme pain, elimination issues and the possibilities of full obstruction, strangulation or rupture.
Had anyone said to me there was such a possibility of going through these types of issues from adhesions from having abdominal surgeries to treat the pain of endo, I may have not listened to all these specialists who said they could help with my endo pain. I had no choices of having surgeries when it came to my ovarian cysts rupturing, and they did cause a certain amount of scarring on their own.... but a total of 13, 5 of which were to try and fix the damage caused by the previous 9, is FAR MORE than I bargained for.
Each surgery did so little to relive the pain, later when I asked why I was told it was b.c it is so deep seated in areas where it is too hard if not impossible to get to. Leaving any of it leaves the pain. Allot also had to do with the fact that endo implants create their own nerve supplies and each signal the brain that it is injured, thus the pain impulse is triggered, since all the surgeries I had in the beginning were all laser surgeries where they did nothing more than burn the 'tops' off the implants they found, it is no way effected the nerves underneath that were actually sending the pain signals. By the time science learned about the nerve supplies and that laser surgery was not the best thing they ever found, it was too late for me, the damages and the adhesion growth had been done. When ablation, excision surgery finally became the way to go, it was not a viable option for me as now they could not get to those areas b.c of the adhesions the wrong surgeries had caused, perhaps had I been lucky enough to have been able to have the right kind of surgeries from the start, my outcomes could have been allot different.
Be well, I wish you pain free days,
Loretta
To Lighten the mood, my picture of PLEASURE, My grand daughter enjoying her birthday cake.
