Newly Diagnosed and Have Questions

Support
1

Hello Everyone,

I am new to this group and the AVM network. In fact, this whole AVF/AVM world is relatively new to me and I have so many questions, I don't know where to begin but I'll try.

On October 14, I was admitted into the ER due severe decrease in bladder function. I thought I had kidney stones so I was in complete shock when I was told I was in for spinal surgery for what they thought at the time was an AVM located on the conus (L1-L2) of the spine.

Surgery and recovery went great. Recovered most of my bladder function and escaped having to use a long term catheter. So in the world of AVM I considered myself VERY lucky and greatful.

A month later, at the follow-up angiogram, they found a fistula near the same location. As a result of this discovery, the initial AVM diagnosis changed. They now believe that what they thought was an AVM was a in fact a blood clot caused by the AVF.

Unfortunately, the risk of paralyzation is too high to remove the AVF because its location is to close to the Artery of Adamkiewiczts which feeds into the spinal cord.

We are hoping for a better pictures after the next angio because there was still some swelling from the surgery but for now our strategy now is to take the 'wait & see' approach with spinal angios every three months. This presents risks as well. The doctors seem to think that this approach carries a yearly 1-2% chance of something catastrophic happening but the risk increases with age. So by the time I'm 50, I am at a 30% chance of something happening. Hence, after our next angio in February, my husband and I want to get a second opinion. My surgeon suggested Dr. Spetzler at Barrow.

So here are my questions:
1. Has anyone sought out a second opinion with Dr. Spetzler? If so, how can I go about it? And if you had a meeting with Dr. Spetzler what was it like?

2. I live in the Northeast and I have access to the Clevelen Clinic in Ohio, does anyone have a recommendation for doctors in those areas? I want to make sure I get the best care for this and maintain the mobility I have.

3. My doctors (PENN NEURO) seemed suprised by the 'uniqness' of my situation. My age (30s), gender, and location of my AVF seem to be rare. Not exactly what you want to hear from your surgeons. That said, has anyone had a similar experience? Is this really unique or rare?

Lastly I still consider myself tremendously lucky with my diagnosis and outcome. It could have been a lot worse. As a result, I have a new found thankfulness for each and every day.

Thank you for any information you can share to help shed light on this situation.

2

Try Dr. Pandy at University of Michigan he took care of 2 of my AVM’s

3

Dear Jess, my advice to you is to go directly to Dr. Spetzler and his team at Barrow Neurology. They have the best equipment in the world and would have been able to tell the difference between a blood clot and a fistula. You will get the surgery or diagnosis you need now by the best in tge business. I flew from Charleston sc to phoenix after being told to do the wait and see thing too. Dr. Spetzler operated on me and he is fantastic. I am alive and walking today because of him. Most of these neurosurgeons have not seen or have the experience to deal with these Avm's while this is Dr. Spetzler's specialty. Just look them up on the Internet and go get yourself fixed!

4

Jess,

My situation was almost identical to yours except I did not lose bladder control my AVM and AVF presented with headaches and loss of mobility on my left side as well as soreness in my neck and down the backs of my arms and in the back of my head. My AVM was located in my cervical spine and was also described as very rare. At the time of my diagnosis I was 34. Anyway my AVM was located on the inside of my spine and my AVF was located on the outside. My seurogeon was awesome and his name is dr barrow and he is the head of neurosurgery at Emory university. I hope this helps some.

5

Hi Tina,

Thank you so much for your response. I apologize that it took me some time to get back. I've been trying not to obsess over this and take my time with the continued testing (2nd ANGIO February 3) and recovery.

I have gathered all of my records and films for Dr. Spetzler and now just writing the letter about my case. I hope to send out the package immediately after my next angio.
Would you be able to tell me more about your experience especially with Dr. Spetzler? Also, do you have any tips for this process i.e. things that one would not think of during this process?

Lastly, have you been 'cured' meaning is the likelihood of anything reoccurring negligible?

Thanks so much again for you support. I'm still think I haven't fully taken in the gravity of this whole thing.

Jessica

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Hi Christina,

Thank goodness everything turned out well. How did you hear about Dr. Barrow and what was your experience like?

Jessica

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Yes, Dr. Spetzler cured me, he has excellent equipment because they have millions of dollars out there in Phoenix! This man sees in 3 D and they call him "God" out there because he is the best. I told them they should not call anyone thgat and they said "We know, but, he does such amazing things. Because of him, I am walking again. If he won't do your surgery then no one will, because he will see what it is and he will fix it. If I had had surgery here, I would have been totally paralyzed. Dr. Spetzler is a good man, very kind and thorough. I would have someone travel out there when you have surgery and expect to be in neuro rehab about 6 weeks. Your doctor suggested Dr. Spetzler because he is the man!! Go for it, this doctor will fix you!!

8

Hello Jess,

first: Good that you have not many problems after the AVM/F. And yes: Its very rare. Have read, bout 1 person of 200.000 developes a spinal dural (!) avm/f. I had the AVF(many feeders) so just like AVM, in T9-T12. Compression high to T6. So the SCI is T6 sub.

Had 5 angiograms, 2 with embolisations. But at the end the surgery (laminectomy) did the final cut: The end of the AVM. They told me: First step is embolisation, cause its secure. But 100% success perhaps only the open spinal surgery. So they did it: And it worked.

I asked the neuro surgeon about Dr. Spetzler: Everyone here in germany knows him. He is the idol for the german neurosurgeons too. So this would be a perfect plan for you.

Not so lucky after the AVM story: Had pulmonary embolism, bowel and bladder issues, numbness and para left. So perhaps: Too late detected. But I had some complete para attacks before the treatment - so I am happy its over. And yes: It started like your story: Bladderproblems.

Wish you all the best,
Michael

9

Hi Tina, I also was operated in L1 area , 17 months ago. I could not walk when i admited myself in hospital.. My AVM was fixed and now i can walk again but very short distances. How is your leg strengt ? I had to catheter myself for 6 months,[once a day]. Now that is almost normal now. I'm from canada .

10

My leg strength has improved very slowly but surely everyday. The big question is do your legs feel weak or tight? You may have what they call "muscle tonus" like me. I have found that extended walking helps as well as stretching the muscles similar to Yoga or Pilates. That uis the next step for you. Walking a treadmill is also good, but, your leg muscles including the inner thight needs to be stretched out now. Good luck!

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Hi Tina: I'ts been 17 months since operation and yes my legs get weak when i walk for more than 5 minutes.. Also my muscles are really tight. I'm doing pool therapy and doing some stretching . When i get up after sitting for a while i have to be careful not to fall because of stiffness.
thx for answering .... hope we can exchange more .
take care. bye bye

12

Nov. 9, 2015

Hi Christina, I work with computers everyday and I must say, to whom I am sending a reply on this site is very confusing but since we are in the same boat dealing with these AVM and need support and giving support I will continue to work on breaking the code for sending and receiving a reply or join in the conversation. But to Christina I most interested in your comments because I to had surgery at Emory University by Dr. Daniel Barrow and felt like we might be able to compare notes on our recovery.

Jimmy C. aka Gwbmusa