1: Wed Sep 08, 2010 12:50pm lmyzick
Hello, I am a new member. I recently submitted my story to the Story Section for posting. It has not yet been posted. I also feel the best way to introduce myself to the group is to tell my story to the group and see what happens. So here it is:
About 6 years ago when I was playing softball in Florida, my feet started to tingle. I did not think much of it until after a couple weeks when strange things started to happen, like one leg would temporarily get a stone like feeling and my feet felt like electricity was going into them causing a burning feeling. Over the next couple of months, I kept getting worse with the feelings and my walking ability. I was starting to limp and I was getting strange fluttering/tingling sensations in my abdomen and left side. I went to doctor after doctor trying to find out what was wrong with me. I even went to a neurosurgeon at the begining of my ordeal because an MRI showed I had spinal stenosis which he indicated was no problem, and sent me on my merry way. As it turned out, this nerosurgeon could not even read an MRI for which you will soon find out. For the next 4 months I kept going all over the place seeing numerous doctors who just followed the original mis-diagnoses of the original neurosurgeon, and wanted to treat me for other things or provide additional testing to find my problem. I even went to a place that called themselves the Spinal Institute where a doctor mis-diagnosed my problem as being spinal stenosis, and proceeded to give me several treatments of cortisone shots with big needles through my butt into my lower back. Even that doctor could not read an MRI, and my condition became worse.
Over the course of 4 months, I started out with tingling/burning sensations in my feet, which then generated into limping with minor leg spasticity, which then generated into using a cain with more spasticity and more tingling/burning sensations, which then progressed over a couple weeks to more spasticity and draging my left foot. The uncomfortable feeling in my stomach and side had progressed from mild fluttering into a sickening, dead like, rubbery feeling. At this point, I felt I needed to find somebody fast who could help me or put out of my misery. I had no idea what was happening to me. I was lucky, I finally found a neurosurgon in another city who told me that I had a bleeding cavernoma at the T/5 level, as plainly seen on the orginal MRI and a new MRI. Within two weeks, I was operated on by another neurosurgeon whose speciality was cavernous malformations at the University of Miami Spinal Institute. Within that week before surgery, I could no longer walk, my legs and feet were burning/tingling big time, and I needed a wheel chair to go to the hospital. My butt felt strange like I was sitting on a rubber ball. My bowles and urinary tract at this stage were compromised.
Immediately after my operation in May 2005, I was paralyzed from my T5 level down to my feet. Life was #### for the next several months while I went to rehabilitation. I was completely at the mercy of medical personnel and therapists. At that time, I really wanted my life to end. I progressed slowly over the following year with a lot of ups and downs, like a rollercoaster. After about a 1 1/2 years, I was able to walk fairly well without a cain, but needed a brace for my left foot. My left leg was weak but had feeling. My right leg was strong but had little feeling. Both legs had spasticity at various times when resting. My stomach and entire midsection felt stiff with a paralyzing feeling, but yet I could bend and walk. I had constant pain from T/5 downward. I was like this for about 2 1/2 years, and then: BINGO --- The cavernoma slowly came back again and I quickly started to loose my walking ability when it started to bleed. I went for my second operation in March 2008. Another neurosurgeon did the operation because I moved to another state. This time I was not paralyzed after the operation. Rehabilitation over the following year was tough, but not like before. Right now, I am able to walk without a cain but for only short distances. Anything over several street blocks, I need a wheelchair. I have constant neuropathic pain. You learn to live with it. I feel like I have a wide board running up my back. My legs and feet are still the same having little feelings but strong muscles in one and more feelings but weak muscles in the other. Both legs feel stiff and are spastic from time to time depending upon activity level. This is very bothersome when trying to go to sleep. My stronger leg always has some type of dull, pin pricking feeling in it with a very stiff feeling foot. My mid section, stomach, and back below T/5 level have a feeling of being stiff or rubbery depending on the area. I only have feeling on one side of my butt and hip area. Sometimes I feel like a zombie when I walk, but I am walking. I am extremely thankful that my bowels and urinary functions are functioning even though I have little sensation on bowel movements. I do take 2800 mg gabapentin (neuroton) a day to help settle my nerves. It seems to help a lot. I recently had a MRI, and everything looked really good. I am very hopeful of the future even though my softball playing days are over.
The bottom line is this: Cavernomas are very bad things. You got to get to them quick and have an excellent surgeon doing the job. However, for those of us who have had spinal cavernomas removed, we must also face realty. Somethings, like sensations, feelings, and walking will never be the same and we have to live with it. We must also have a strong determination and will. Therapists told me that my improvement beyond two years after the operation would be deminimus at best. Guess what, been there, done that, twice over five years rehab now, and I am still improving in the walking and endurance department. Please feel free to e-mail me if you have any comments. Thank you.
2: Wed Sep 08, 2010 2:30pm libby
What a great story. People sometimes write in asking about spinal angioma operations and we really haven't had many people on the forum who have had them. Welcome to the Angioma Alliance and the forum.
You are right. It is absolutely amazing how even years after a bleed things improve.
You have been through so much, but you are resilient. I respect that in a person.
3: Wed Sep 08, 2010 9:08pm ketogan
And welcome to AA your story is sad and but also intresting yes spinal cavernomas are nasty as they are so difficult to treat.
You had to have surgery due risk of becoming paralysed what research has shown is that if you have pain then surgery isnīt really a good option as it rarely can be treated.
The doctors at Barrow Neurlogical Institute in Phoenix AZ did a survey in 2006 and that was their conclusion (Dr.R.Spetzler & J.Zabramski) especially Joseph Zabramski is the top when it comes to cavernomas in the spinal cord.
But you have survived and hopefully the nervepain etc... will someday subside it can take some years but donīt loose faith.
I have 6 of them in the spinalcord both in C-spine and Thoracic spine the one in C1 has caused trouble with swalloing and lost the gag reflex and then the ones in T 5 and T10 have caused pain,spasticity,problems with incontinence.The other 3 have so far not bled:)
As they are all intramedullary ones and so far havenīt caused paralysation they have decided that surgery isnīt an option.
I also take Neurontin these days I get by with 1800 mg but iīve been taking as much as 4500mgīs so it has become easier.
For your spasticity have you tried Baclofen for many it really helps alleviating the spasms.
But as Libby said it was a great story so thank you..:)
Michelle from Stockholm,Sweden
4: Fri Sep 10, 2010 2:46am Elizabeth
Thank you for sharing your story. While my cavernoma is in my brain, I think many of us can relate to your frustration in getting the right diagnosis and treatment (or no treatment if that's best). Best wishes on your continued recovery!