i would like to thank everyone for the warm welcoming into the group.
My name is Megan and I’m 25 years old. I would like to start off telling my story and then I have a few questions at the end.
For as long as I can remember I have walked funny. When I was young friends always used to ask why I walk like I do and all I knew at the time is that I was just born this way, this is how I am. When I was 14, my dad took me to see a orthopedic. The doctor told my dad that I would grow out of it and that I should go to physical therapy. I was 14 so I never got into it when my dad had his physical therapist friend stop by once a week for probably a month.
It was rough in school. I was teased for the way I walked and I couldn’t really get into sports because I looked funny running. I quit basketball when I started into high school because I didn’t want other people to see me run. I was in the band for a while but it was hard to do the exercises because my knees were very weak. I stopped participating in the exercises and drills after I was doing stadium steps and tripped over my own feet and hurt the girl in front of me when we fell down 10 steps or so.
When I went to college, I went to see a chiropractor with my boyfriend, and he told me he could fix my back and walking problems. I still was unsure at the time and didn’t have any money or insurance to keep going back to see him. I’m still not sure how he could have helped me…
When I turned 20 or so I started getting issues in my legs and got overly jumpy when I was startled or heard something that I didn’t expect. I still didn’t have insurance nor did I know what was wrong or that it was connected to my walking issue. I also was experiencing constipation all the time and I frequently had to urinate.
I work for a nurse anesthesia college in Naples and I finally got the guts to talk to my boss about what was going on. She talked to her doctors connections and told me I should start with seeing an orthopedic. I did and the doctor told me to see a neurologist. The neurologist asked me to get an mri and then referred me then to a neurosurgeon in town who then referred me to a doctor in Miami at the university.
My symptoms are hyerreflexia, Clonus, frequent urination and bowel issues, stiff legs, and stastic gait. I’m making an appointment today to see dr. Levy in Miami. So far all the doctors have said according to my MRI, I have a spinal av fistula at T9, T 10 or T 12. I’m going for an angiogram at the appointment and he said surgery is most definate. I’ve never had surgery or been in the hospital for anything major. the doctor said what I have is congenital but my aunt had an avm in her leg so I’m starting to wonder.
I have read about the dangers of not doing anything and know what I have is getting worse. I’m scared and would like any advise. Is surgery the only solution?
I w will suggest getting the repair. Although it is scary, I have found that if left to their own, these things can pop up as a problem at the most unexpected and incon venient times and be life threatening! I think you could consider the old adage about a "a stich in time......
Trust your doctor hun. It sounds like they know what they are talking about and wouldn't put you in any unnecessary danger. It is quite scary, I have a congenital AVM I believe, and am still now, at 42, struggling to get an answer after going backwards and forwards to the docs for over 20 years!! I am happy for you that they have finally realised what the problem is and that they are going to try and get it corrected for you!! You'll soon be strutting your stuff, putting all those bad memories of being teased behind you. Think positive and stay strong hun. I'm rooting for you!!
Thank you so much for your kind words. Have you ever had an angiogram?
Dionne G said:
Hi Melevitt,
Trust your doctor hun. It sounds like they know what they are talking about and wouldn’t put you in any unnecessary danger. It is quite scary, I have a congenital AVM I believe, and am still now, at 42, struggling to get an answer after going backwards and forwards to the docs for over 20 years!! I am happy for you that they have finally realised what the problem is and that they are going to try and get it corrected for you!! You’ll soon be strutting your stuff, putting all those bad memories of being teased behind you. Think positive and stay strong hun. I’m rooting for you!!
How did it cripple you, if you don’t mind me asking? I will certainly ask him about what he is intending to do next week.
I have had symptoms for ever but I didn’t realize that they were all the cause of this one thing. I thought I had something wrong with my hips. It is progressively getting worse, I don’t know how fast but it’s fast enough.
I have read about Dr. Allan Levi but has anyone else worked with him?
I know how scared you must feel. But there is always the option of seeing various doctors to get their opinions of whats the best option for you. I wish u luck and stay strong. All will be over soon and you can get back on that basketball court and show off your layup skills :p
AVF is much simpler and less complicated than AVM, as they are outside or on the surface of the spinal cord, while type2 avm is inside the spinal code. My neurosurgeon says if I had avf instead, surgery will be safer and much easier.
Hi John
From your post I believe you have gone through alot, I do appreciate you could be more polite though, after all we are not doctors.
Wow, thanks for providing the picture. I am getting my angiogram tomorrow and I have done so much research on it and reading through this discussion, I feel much more prepared.
The thing I’m worrying about now is, why can’t I eat something small like a breakfast bar when I wake up? I meet with the doctor at 8:30am and my appointment is at 12:00pm, they told me not to eat or drink anything past 12 tonight. When I get hungry, I start getting the worst headaches… I know this is stupid but I’m curious how bad it would be if I had something small.
I know how scared you must feel. But there is always the option of seeing various doctors to get their opinions of whats the best option for you. I wish u luck and stay strong. All will be over soon and you can get back on that basketball court and show off your layup skills
The risk of angiogram is very small, compared to embolization for example, it is the golden standrad to a proper diagnosis of vascular conditions.
Hi John
Appreciated, sorry to hear about your failed angiogram experience, I am thankful that I can still walk, work, and have no backache and no bleeds. Also, I have to remind myself that it is best to channel my anger/frustration in the right place, as being sick does not give me the right to be nasty. Best of luck :P
So I have good news, I had my spinal angiogram yesterday and they did a thurough search. They could not find any av fistulas or AVMs. Now I’m at step 1 in what my issues are but I’m releaved that i it’s not as serious as everyone thought it was.
Thank you everyone for being supportive and good luck!
Didn't see this post when I posted my previous comment. Am happy that you don't have a spinal fistula or AVM. Hope you can find out what going on.
Take care,
Debbie
Megan said:
So I have good news, I had my spinal angiogram yesterday and they did a thurough search. They could not find any av fistulas or AVMs. Now I'm at step 1 in what my issues are but I'm releaved that i it's not as serious as everyone thought it was.
Thank you everyone for being supportive and good luck!
I read John Public's comment and at first couldn't tell if he was putting himself down or you. Since you read it the same way I did, I deleted him from the site, which removed all his posts. To get rid of the comment that was quoted in your response, I had to delete your post as well. Nothing is your post was offensive, but I couldn't delete just part of it, sorry.
John is banned for violating the rules. He could try to come back under another name, but the mods keep their eyes open for stuff like this.
The site is meant to be helpful, and put downs of other members are not tolerated. I hope this helps.
Not sure about ignoring your DRs orders, but it might be as simple as they don’t want you to vomit and choke while on the table.
Your “migranes when you don’t eat” reminds me our first Proton Beam Radiation. The DR had scheduled Chari to have an angiogram at noon, hence no food after midnight the night before. Only the procedure was delayed, so she didn’t have angio start until after 2:30. Guess what–she had a seizure while on the angio table. The Dr didn’t make much of it, but it really got our attention as we felt the seizure was triggered in part by not eating (which I’ve read is one of the three: Don’t skip meals, don’t drink much alcohol, and get plenty of rest).
From that point on, when making appointments for surgery or angios or whatever that required fasting, our rule became:
" Chari can have seizures if she skips meals, so we want the absolute FIRST appointment in the morning. Anything else is unacceptable. We’ll be here at 4AM or 5AM, or as early as you can start."
We’ve never been denied that when we bring it up, so in future appts, I recommend you say something similar.
