Miri Greidi - November 18, 2007

From: "Miri Greidi " miri774@netvision.net.il
Sent: November 18, 2007

Spinal cord cavernomas are not very common and I guess that is the reason why there don't appear to be many stories or experiences like ours on the support forum. This is my daughters story which she agreed we should share, mainly for the benefit of anyone going through a similar experience (but of course everyone is welcome to read it). Comments, suggestions, questions etc. will be welcome.

At the end of June 07 my daughter started feeling lower back pain and weakness and lack of feeling in her left leg which after a couple of days started dragging. She went to the ER expecting to be given a pill and sent home but ended up staying there for 10 days. During this time they diagnosed drop foot and there was some mention of a slipped disk (that later wasn't mentioned again). She had a CT and an MRI and various other tests. After several days they told us that it appears that she has a cavernoma on the spine. They explained that it was insignificant and probably had no connection to the weakness and numbness in her leg.

Throughout the next couple of months she had various follow-ups with a Neurologist and a Neurosurgeon and they agreed that it was indeed most probably a cavernoma and they should do another MRI, 6 months after the first, to see the situation. No one actually mentioned that there had been a bleed. I had never even heard of a cavernoma before but looked it up on the web and knew that there was that possibility, it was quite a shock when I saw it mentioned on one of the doctor's reports. I queried this and expressed my concern but was told that it wouldn't happen again and there was no need to do anything.

It took about a month for her leg to return to normal and she had no treatment at all except for 2 short sessions of physiotherapy. The doctor proclaimed her healthy on August 21st and we thought it was behind us, although at the same time I was apprehensively waiting to get the "all clear" after the 6 month MRI.

However, in about mid October she started feeling weak in her left leg again and also had lower back pain. She came home for the weekend on Thursday and said she'd go to the doctor the following week. On Friday we decided that on the Saturday, we would go on a walk through the fields near our home and it would be a good opportunity for her to check out her leg. However her situation deteriorated rapidly and after a painful and sleepless night we took her to the hospital instead. The deterioration was frightening, she was walking (albeit not easily) on Saturday at about 8 am and by 10 am she needed a wheelchair as she was starting to lose feeling in her right leg too. She was checked out by a regular ER doctor then sent to the Neurology department where she was admitted to hospital and sent for an urgent MRI where they discovered that the Cavernoma had bled again more intensely than the previous time. She was moved to the Neurosurgery department and the NS there explained that as there had been a second bleed, worse that the first, the chances that there would be a third one, worse even still, were very high and the results of that could be much more serious. Therefore they recommended surgery. She was put on steroids in an attempt to reduce the edema around the cavernoma and alleviate the pressure on her nerves and it was decided to wait two weeks to give her spinal cord a chance to get stronger and then operate. However he explained that if there was any further deterioration they would operate immediately as the longer they wait, the higher the risk of the nerve damage becoming permanent. We were with her at the hospital almost 24 hours a day but popped home a couple of times to bring her clean clothes etc. and in the short while at home tried to find more information and to get other doctors' opinions. With the help of AngiomaAlliance and my boss, I was able to get a few names of doctors who were prepared to look at her MRI if I could fedex it to them, however, before I had a chance, it turned out that the steroids weren't helping and they had to do urgent surgery. Even with our unprofessional eyes we could see that she was deteriorating; she was almost completely paralyzed in both legs and she had hardly any feeling in them at all. It was terrifying! Spinal cord surgery is complicated and very risky however we were convinced there was no choice. The risks of both operating or not were very high.

The operation took about 4 hours however they started it about 2 hours late, those hours in the waiting room were nerve racking. When she was finally moved to the recovery room the 2 neurosurgeons who operated came to talk to us and said that as far as they could tell the operation was successful, however it would take time to tell if any permanent damage had been caused already before the operation. She was hours in recovery before she was moved back to the ward, however when she came out and moved the toes on her right leg we were really happy. For 4 days after the op she felt absolutely awful, she was in a lot of pain and every time she tried to sit up she got monstrous headaches and dizziness and vomited. We were told that the reason for this is that the spinal fluid leaks out during surgery and it takes a while for it to regenerate itself. She was told to drink a lot, but altho' she did, she didn't feel much better. Eventually the NS put her on a drip to get her more hydrated and that seemed to solve the problem. It was awful to see her suffer with little to do to help her, however, at the same time we could see some improvement in her legs so despite her pain we could see something good. When she was finally able to sit in a wheelchair we were all overjoyed!! My husband said how strange it was that when she went into a wheelchair a week before we were devastated and now that she got into a wheelchair we were happy!!

Six days after surgery she was moved to a rehabilitation centre - it is the only hospital in Israel that is totally rehabilitation orientated. The team there is amazing, the patience and devotion are heartwarming. There is kindness and professionalism in almost everything they do. There are thank you letters on the walls addressed to "The Angels" and that really is the feeling we get there. The centre provides one-on-one physiotherapy, group physiotherapy, hydro-therapy, occupational therapy, support groups, psychologists, social workers and various activities.

We are very fortunate that the center is just a 15 minute walk from home which is a great advantage as we can visit her a few times a day and bring her things that she needs. The centre serves people from all over the country and some people have to rent rooms so as to be nearby or take extended vacation from work, even little things like laundry can be difficult if you live far away, so we are lucky to have her close by. She also is allowed to come home for the weekends, which is wonderful. After she had been there a couple of days and we could see she was in good hands and we went back to work, with the understanding that if she needed us we'd be there as soon as possible. I usually visit her for a short time in the morning before work and then in the evening again, usually with my husband and younger daughter, and frequently with food, as dinner is served at 17:00 and as she was on steroids and therefore very hungry.

Regarding medication, she was on steroids from Oct. 20th, they slowly started reducing them after 2 weeks ago and after 2 more weeks she finished them. They cause hunger, don't let you sleep and can affect your mood, so although she is often exhausted from the physio, sleep is hard to come by, especially if you consider also the pain and sharing a room with 5 other girls/women! She is given a pill with the steroids to prevent gastro related side effects. She was given a narcotic painkiller for a few days but it really affected her concentration and she felt very strange in the head. The moment she realized why she felt so weird she stopped taking them. She has also gradually cut down on all the other painkillers and now only takes one a day either before or after physiotherapy. She also gets an injection every day which is a blood thinner to prevent thrombosis until she is up and walking more. She should be finished with that soon too.

She has been at the rehab centre for 3 weeks now and her progress is amazing. When she arrived she was unable to get from the wheelchair to the bed and back again without significant help, she couldn't sit up by herself or turn over in bed, she couldn't brush her hair, get dressed, put on shoes etc. etc. Some of the things she couldn't do (like brushing hair) were due to the pain in her back directly connected with the operation and not actually related to the cavernoma.

Now she is more or less independent, she is very mobile with the wheelchair, meaning she can get around, use the elevator, shower, toilet etc. by herself. Once in a while if very tired she asks us to push her but that happens less each day. She started walking with a walker about a week ago and was only allowed to do so if someone was with her, until a few days ago when she was tested and given permission to use it by herself!! In physiotherapy she started using crutches also. The movement in her legs is improving slightly almost daily altho' they still feel quite numb. Altho' she can walk with the walker she was told to continue using mostly the wheelchair in order not to cause any muscle damage or over-exert herself, she needs to progress gradually.

The doctors at the rehab centre won't give an estimate as to how long she will need to stay, the policy is that you can stay as long as there is improvement. As soon as they feel that you have reached the maximum rehabilitation possible and there has been no improvement for a week they send you home. They also can't tell us if there is any permanent damage; that will probably only be understood when the improvement stops.

The rehabilitation is thanks to 2 things, one is the natural healing process of the body and the other is the physiotherapy etc.

Despite the dark depths we were thrown in to, we are very optimistic. The prognosis we were given at the hospital where she had surgery was "very high potential of rehabilitation" and altho' her surgeon said that he doesn't think her left leg will be 100% I believe that she will walk again unaided and probably get most of her abilities back (and hopefully all of them), she is certainly going in the right direction. It may seem strange that I'm so optimistic and happy, however, I believe that we are really lucky and blessed that the operation was a success and it seems that a very significant amount of damage was not permanent; when I see her move her legs and toes I smile and my eyes fill with tears of happiness, I feel that it is a miracle.

Update June 30, 2008

One year since her first symptoms appeared....I am happy and relieved to say that my daughter recently had an MRI which shows that her spinal cavernoma was completely resected. Her NS told her to have another MRI in 2 years and then come back to see him again.

Today, after 7 months of physiotherapy she has her last session at the rehabilitation centre. She now needs to continue exercising alone.

Altho' this has not been an easy year, we have a lot to be grateful for, beginning with diagnosis that took about 5 days, which I realize is not something to be taken for granted, our wonderful team of surgeons followed by the team at the rehabilitation center, the support we have received from family, friends and employers, and the healing powers of the human body granted from above.

Her progress has been amazing, she is completely independent. She still has some deficits, mainly in her left leg and she tires easily, however, we believe she will overcome this with time (we were originally told that the chances of healing could take up to 20 months).

My daughter's life was changed abrubtly by the cavernoma, however, despite the many difficulties, her experiences have shown her what she wants to do with her life, so she applied to University, took the entrance exams, got accepted and will begin studying Physiotherapy in November. We are very proud and happy for her.

Sincere thanks go to angiomaalliance and the support forum, which has been invaluable, the wonderful people who inspired me with their amazing strength and courage, knowing we were not alone has been a great comfort. Thank you to Connie for this site which has provided knowledge and some understanding of cavernomas and bringing together this "family".

I wish you all good health.

Miri Greidi