Searching for Ehlers Danlos Syndrome ladies who also have OC

[Trickysite]

Hi lovely ladies, I would like to know your experience of surgery if you also have Ehlers Danlos Syndrome, as I do. TheEDS causes strong muscle spasms and muscle weakness all over, especially lower back. If that goes, it takes me 2 years to recover. I am very nervous of the major operation to remove tumours on both ovaries, omentum and stomach. Please let me know any tips for before and after op, and how it went for you.

[BJ_UK]

Hi, Trickysite.

I was diagnosed with seromucinous adenocarcinoma of my right ovary in October 2011. My tumour was stage 1a - unfortunately it sounds as though yours may be more advanced than that. Fortunately I have not had any recurrence, and I was not advised to have chemo, as it is not particularly helpful with the type of EOC I had. I have EDS hypermobility type, though I had not yet had an official diagnosis back in 2011.

I did, however, have very severe side effects from the anaesthetic, which made my life a misery for the next two and a half years. I'm afraid that this is a long and complicated tale, but knowing it may help you to protect yourself. I'm not telling it to you to try to dissuade you from having the operation, which it sounds like you do need, miserable as that fact is.

I was given an epidural pre-op for post-op pain relief, but unfortunately they breached my dura in doing so. They told me they had done so and said that if I got a really bad headache afterward, I should ask the medical staff to contact the anaesthetists to come and see me. (There were two anaesthetists - an experienced one teaching a beginner how to put in an epidural. Mistake number one - not insisting that the beginner just watch!)

When I woke up the day after the operation, I couldn't hear properly. Everything sounded muffled. I explained this to the surgeon when she came to see me and tell me how the operation went and continued explaining this to every nurse I saw. They all said that it was nothing to do the operation and I should see my GP about it once I was out of the hospital. (Believing them was mistake two - what neither I nor they realised was that this was a symptom of the breached dura. If I had known to insist on seeing an anaesthetist then, there was still time to take action that might have avoided what was to follow.) This symptom persisted for at least three weeks and only gradually resolved. My hearing only got back to normal about two months post-op.

My operation was on a Tuesday. I had been hoping that I would be discharged on the Friday, but I woke up feeling awful every time I tried to sit or stand up. This was the closest I came to the really bad headache I had been warned about, but I experienced it as a general malaise rather the "the worst headache I ever had", which the anaesthetists warned me about. I did report it to the surgeon, who decided to keep me in an extra day but did not think to contact an anaesthetist. I was feeling much better the next day so was discharged home on Saturday.

I was glad to be home and back in my daughter's bed - she was living away from home and our roof was being replaced, which made our bedroom temporarily uninhabitable.

Things went on fairly uneventfully until the following weekend. I went to bed feeling a bit off, and woke up Sunday morning seeing double so badly that I had to crawl to the loo on all fours. I rang the ward - you guessed it: "nothing to do with the operation - ring your GP". So I rang the out of hours locum service, and bless the doctor who answered, he told me that I needed to see the emergency eye clinic and/or the emergency neurology clinic, but he wasn't sure which would want to see me first. He told me he would ring back within half an hour with further instructions, and he was true to his word. It was ophthalmology first, with the expectation that I would likely be referred from there to neurology. And so it happened.

It was actually really awkward for both departments, because I was due to see the surgeon who did my op the following morning at 9 am to be told whether or not my tumour was malignant and what if any further treatment I would need to have. Both the ophthalmologist and the neurologist that I saw knew I had cancer, so were worried that the double vision might be a symptom of brain metastases, but couldn't really tell me before my surgeon did, especially as they were unable to explain in any detail or tell me what further treatment I needed. What they were very clear about was that I had a severe sixth cranial nerve palsy and needed an urgent MRI for which there would be a long wait as one of the trust's MRI scanners was out of action. I needed to be an inpatient for this to happen, but they were sure that it wasn't going to happen that night, so they registered me as an inpatient and sent me home with instructions to come back to the ward immediately following my appointment with the surgeon.

So I went home with my husband, with my right eye masked, and I expect you can guess what I did next: I googled sixth cranial nerve palsies. I discovered two possible causes that might explain my problems: 1) Lyme disease, as I had suffered a tick bite by finding a tick still attached which must have been there well over 24 hours, probably more like 48 hours. Our GP had not felt prophylactic antibiotics were necessary, but I had been bitten in an area where Lyme disease was endemic. 2) Sixth cranial nerve palsies can be caused by breaches to the dura. I reported both of these possible causes to the neurology house officer when I returned following my appointment with the surgeon. He took a blood sample to check for Lyme disease and looked in my notes to see whether it said anything about the breached dura. It did, and that's what it eventually proved to be, once they had ruled out mets with the MRI.

I was unable to use my right eye until January, at which point they were able to give me the strongest prisms they had so that I could try to use both eyes together. My eyes did gradually improve so that they gradually reduced the strength of the prisms, but they eventually reached a plateau, and when I had gone a year without further improvement they referred me to an ophthalmic surgeon for squint surgery, which took place two and a half years after the ovarian cancer operation. During that two and a half years I had no depth perception. To start with I couldn't even pour myself a drink. Until my eye op I couldn't do any of the needlework or crafts that I loved, I couldn't dust any of the dust catchers I have without knocking them to the floor, where I couldn't identify them, even reading was much more tiring. I couldn't cross the street safely by myself because I couldn't tell whether cars were moving, let alone whether they were likely to hit me. And it could all have been prevented had they done a blood patch three days after the epidural! Problem was, none of the medical staff on the surgical ward, including the surgeon, were aware of any symptoms of breached duras except the terrible headache, and that was the one symptom I didn't have!

Anyway, apologies for the long tale.

As far as tips go, make sure that both your surgeon and your anaesthetist have taken on board the fact that you have EDS. The anaesthetist will probably want you to have an echocardiogram, if you haven't had one, to make sure that you don't have any of the possible cardiac problems that can go with EDS. You might want to discuss whether or not an epidural is appropriate for you - because we have defective collagen, our veins don't close up to prevent blood loss as efficiently as most people's do, and while I don't have any proof, I suspect that the same may be true of the dura and cerebral spinal fluid. Epidurals can provide good pain relief, so I wouldn't necessarily dismiss one out of hand, but do be aware that there are many possible symptoms of a breached dura besides the horrible headache which is the only one that most doctors are aware of! Feel free to share my tale of woe if you think it might help, and if you do have an epidural be sure to ask the anaesthetist if your dura was breached!

As far as getting back into shape after the op, do ask for any relevant physio. It is worth asking your GP if he/she can refer you to any local gym. Many of them do programs that will help you to get back in shape that are aimed at being gentle and appropriate for those recovering from operations and/or cancer, and they often provide access to an appropriately trained personal trainer. Make sure that your trainer knows that you have hypermobile joints. You may even get a reduced rate. My GP referred me after three months recovery, and I did find it very helpful.

Hope that your operation goes well and that your situation is not as bad as you fear,

Barbara

[Trickysite]

Sorry to hear you had such a terrible time and there was a huge Amount of medical incompetence. Truly awful experience. T

[Smileeveryday2021]

Hello TrickysiteI like you have EDS.

I had surgery to remove omentum and hysterectomy just over a year ago.

I didn’t experience any problems or complications due to my EDS though I was careful about my posture in the recovery period and practiced the pre and post op exercises they suggested before surgery so I didn’t have to learn them after surgery.

I was reasonably fit before the surgery and so was up and functioning pretty quickly. I walked mainly in the early days and did pelvic tilts gently to keep my lower back moving.

My stomach didn’t quite go back to it’s pretty surgery shape but nothing anyone would notice under clothes. I got a bit stuck with my exercise routine after about 8-9 months so had a Zoom consultation (paid for privately) with this sites exercise advisor Lizzie Davies. Highly recommended.

I wish you well, don’t be nervous or expect your EDS to flare. Keep moving and keep your sitting and standing posture good. Good luck xx