Just curious if anyone has an intramedullary spinal avm. Mine is at T4, diagnosed in 98 with a few minor bleeds, problem free for 10 years and now new symptoms have begun. Hospitalized but then had angiogram cancelled due to risk of spinal stroke. Home now and trying to get back to living life… Still walking, just having minor hot feelings as though I am burning up from inside out… episodes last 1-2 min. Had some stiffness with right leg occur and was monitored. I know the intramedullary avms in the cord are more rare than the ones along the cord…
Hi Kari. There is a sub-group here called Extremity AVMs. Someone there might be helpful…it’s for people who have an AVM outside of the brain. Go to the main page…scroll down…look on the lower right side and you will see the groups. Good luck!!
Thanks so much Barbara! I am still learning to navigate this site. :) I really appreciate all who have helped and given suggestions so far. God bless you!!!!
Kari
Barbara H. said:
Hi Kari. There is a sub-group here called Extremity AVMs. Someone there might be helpful...it's for people who have an AVM outside of the brain. Go to the main page...scroll down...look on the lower right side and you will see the groups. Good luck!!
Hi Kari. I just went to the very top of the page on the right hand side and typed in Spinal AVM. A whole bunch of discussions came up about Spinal AVMs!!!
Hi Kari,
I have a spinal cord AVM and aneurysm that are both type 2 and are located from C-6 to T-2. The AVM bled in 2002, causing significant deficits to most of my left side. They were embolized in 2006, 'obliterating' the AVM and leaving the aneurysm.
I'm supposed to have angios every three years with MRIs in between. My latest angio in September 2010 showed the AVM has grown back. Some of the deficits had been progressing, so I had a feeling something was going on, but I thought it would be something with the aneurysm. I live in NM and go to the Barrow Neurological Institute in Phoenix for testing and treatment. They want me back for another angio in March, so hopefully they'll be embolizing the AVM again then.
Since my bleed my body can't regulate temperature like it used to. I have a very difficult time with heat, especially hot weather, and can get sick or heat stroke very quickly. The bleed also altered my ability to feel heat and cold, so that hot on my left side feels warm and cold feels like a knife cutting through me and can send me through the roof. I swim in a therapeutic pool, which is very warm, but still my left side is too cold in the water so I have to wear the neoprene jacket and leggings. I avoid the summer heat like crazy.
There is a spinal group here if you're interested in joining: http://www.avmsurvivors.org/group/spinalavf
So I'm presuming that since you're at too much risk for angios your AVM is completely untreated? Are you on a 'wait and see' approach then?
It's wonderful that you haven't had any worse deficits than you've had considering you've had more than one bleed. My left knee locks up on me, and the left leg constantly feels like it's going to go out from under me, but that's due to the weakness caused from the bleed.
Hope you'll find lots here that interests and helps you Kari, and glad you found us.
Tori
Kari,
I just read your bio and saw what you said about treatment for your AVM.
Our symptoms and deficits are so similar. A few years before the AVM bled, maybe three times I experienced excruciating, sharp, lightening bolt pain in my back like you described. I didn't have medical insurance at the time so didn't get it checked out. I remember wondering at the time if it could be from standing and walking on a concrete floor at a job I was working at the time, but something told me that that pain was far too severe to be caused from anything like just standing and walking on concrete. Many times since finding out about the AVM I've wondered if maybe the AVM was bleeding or leaking then, but I guess I'll never know. *shrug*
I hope that if treatment is something you want something will be available for you.
Keep taking good care.
Tori
Great to hear from you, Tori! Yes, it does sound like we have some similarities. I think I am right in saying I have a type 2, as it is within my spinal cord and I have been told it is a true avm. I have a narrative posted on Bill Maples support site under Diagnosed T4 AVM. I think it is on the top of the third page of narratives in the avm category. That may help yoou to know my whole story without me writing it all out again. :)
My left leg went "half numb in 98 around the time I had a horrible burning pain in my chest. I couldn't feel hot or cold on it. I can say now years later I do feel cold on that leg, which is wild to me. I don't feel sharp pricks of a safety pin though. My right leg has overreactive reflexes and locks up/stiffens up at times. The stiffness occured after this last round of "heating up" episodes.
Basically, the doctors feel that it is best to just keep an eye on it since I still have bowel/bladder control and am walking. They figure, as do I... why take any risk unless we treat it. Right now, the risks aren't worth me treating it and possibly coming out paralyzed. If I begin to steadily to decline, we will look at an angio and embolization etc. If I have a catastrophic bleed, then I am paralyzed. I take it you are seeing Dr. Spetzler then if you are going to Barrows? I considered going there, but Mayo at Rochester is much closer and I have doctored there before. We live in Iowa.
So happy to have met you online. God's blessings be with you on your avm journey. I would love to keep in touch.
Thanks again!!!
Kari
Tori said:
Kari,
I just read your bio and saw what you said about treatment for your AVM.
Our symptoms and deficits are so similar. A few years before the AVM bled, maybe three times I experienced excruciating, sharp, lightening bolt pain in my back like you described. I didn't have medical insurance at the time so didn't get it checked out. I remember wondering at the time if it could be from standing and walking on a concrete floor at a job I was working at the time, but something told me that that pain was far too severe to be caused from anything like just standing and walking on concrete. Many times since finding out about the AVM I've wondered if maybe the AVM was bleeding or leaking then, but I guess I'll never know. *shrug*
I hope that if treatment is something you want something will be available for you.
Keep taking good care.
Tori
Mine are the intramedullary and can only be reached by going in through the sternum, removing some ribs and deflating a lung, which is a surgery we want to avoid if at all possible. I can’t feel the pinpricks either on most of my left side, which did happen to come in handy when I was getting injections in my back. To be that numb, yet have the horrible neuropathic pain too is SO bizarre. I’ve got the over reactive reflexes too – fun stuff, lol.
The plan for me at this point is to keep everything embolized for as long as possible. If I have another bleed, or if the embos no longer can be done I’ve been told they may have to attempt surgery to remove them, At this point we don’t think along those lines at all, because of the risk of paralysis. Yes, I’m a patient of Dr. Spetzler’s and am usually seen and treated by Dr. McDougall, who is on his team (Dr. Spetzler doesn’t do the angios or embos).Like you, if I have another bleed the thought is that I'll probably be paralyzed.
As soon as I found your narrative on Bill Maples site I recognized it from an update email I had recently from the site (love the photo, btw. Adorable!). I have a narrative there too - it's here: http://stu.westga.edu/~wmaples/smalley_tori.html (Sure do miss Dr. Maples and his almost daily updates, etc.)
Are you still numb, and do you still have the pain? None of that has gone away for me.
You've really had quite a journey so far. I hope all the best for you, that your deficits won't worsen or that you won't develop new ones, and that you won't have any reason to have to be concerned about being treated. Absolutely, I'd love for us to keep in touch Kari. It's only since I've come here that I've even encountered anyone else with AVM in their spinal cord. It's good to know others here understand what living with an AVM is like, but there's something about having contact with someone who also has one in their spinal cord that really makes the difference in knowing what that is like.
Take care!
Tori
Hello Kari!
I've just joined this network and was browsing through the discussion pages. I have the exact same AVM type and I am glad to have come across this! We have a very similar case, although my AVM was diagnosed only last year. I had a rupture 3 weeks ago, and well, the details you can find on my page....
How are you coping with the pain and the numbness now? What medication are you on? I am just now tapering off steroids and taking Tramadol and Gabapentin for the pain.
Hello also to everyone, thanks for the info!!!
Happy Monday to all....
Cheers,
Gen
Hi Gen,
Sorry to hear you have an avm. I have not had any treatment and am still walking. I don't experience any pain unless I am having some change/bleed with my avm. At least this is the case so far. I will be 40 in March and am married. We adopted two beautiful children since we decided pregnancy would be too big of a risk. We are so blessed.
I have experienced some "heating up" episodes in my chest area that burn a little too since flying the beginning of January. Still having some difficulty with my blood pressure right now... possibly due to anxiety? Can't help but wonder if it could be flow changes within the avm. My doctors feel due to the location and type of mine (which sounds similar to yours) that I should continue to live life and treat only if necessary. It takes some getting used to, knowing that at any moment my life could change. Yet, if one thinks about it, no one knows when or if their life could completely change at any given moment. Each day is a gift... live it to the fullest.
Like I said, I don't really have pain daily... thankfully. The numbness... I have gotten used to over the years. The only way I can describe it is like a half numb feeling where I don''t feel hot or cold correctly on my legs and waist area. I have made a joke out of my overreactive reflexes in my right leg, call it my knee trick or leg trick. It is easy to laugh about it when things are going well and I guess it lightens the mood with a room full of resident doctors when I tell funny stories connected to it. :)
I would love to keep in touch. I will keep you in my prayers. Keep your chin up and keep smiling!
God Bless.
Kari
Gen Mariano said:
Hello Kari!
I've just joined this network and was browsing through the discussion pages. I have the exact same AVM type and I am glad to have come across this! We have a very similar case, although my AVM was diagnosed only last year. I had a rupture 3 weeks ago, and well, the details you can find on my page....
How are you coping with the pain and the numbness now? What medication are you on? I am just now tapering off steroids and taking Tramadol and Gabapentin for the pain.
Hello also to everyone, thanks for the info!!!
Happy Monday to all....
Cheers,
Gen
Kari,
I'm your sister, biologically speaking. I have a Type 2 Glomus Intramedullary Spinal AVM (within the cord) at the base of my brain down past C2. I have recently acquired health insurance (haven't had any since 1995) and had an image study done. (MR, CT, Angio, all with contrast & per Cyberknife protocal). I'm waiting for all the doctors to confer on the results and then I'll have the appointment where I'll find out if I'm a candidate for any treatment, hopefully (?), the Cyberknife.
I was diagnosed in 1989. In 2000 I had a SAH and was out of it for quite awhile. Currently I've been suffering with headaches and upper back and shoulder pain that is unrelenting. This week I'll be seeing my primary care physician and hopefully we'll begin a search for pain management to help me cope and have a better quality of life.
Kim
Hi Kim,
Nice to meet you. Sorry you are going thru so much. I will definitely keep you in my prayers. I have been lucky so far to not have any major pain. I will pray that you find some relief. Thankful you now have health insurance and can get some help. Are you doctoring in Chicago for the possible Cyberknife? I would love to keep in touch. Rockford, isn't that just south of Beloit, Wisconsin? That is where my mother is originally from. :) Take care and I will pray that you find some help and relief from your pain.
Blessings,
Kari
Kim Palmer said:
Kari,
I'm your sister, biologically speaking. I have a Type 2 Glomus Intramedullary Spinal AVM (within the cord) at the base of my brain down past C2. I have recently acquired health insurance (haven't had any since 1995) and had an image study done. (MR, CT, Angio, all with contrast & per Cyberknife protocal). I'm waiting for all the doctors to confer on the results and then I'll have the appointment where I'll find out if I'm a candidate for any treatment, hopefully (?), the Cyberknife.
I was diagnosed in 1989. In 2000 I had a SAH and was out of it for quite awhile. Currently I've been suffering with headaches and upper back and shoulder pain that is unrelenting. This week I'll be seeing my primary care physician and hopefully we'll begin a search for pain management to help me cope and have a better quality of life.
Kim
Hi Gen,
Welcome, glad you found the site. There's a spinal group here http://www.avmsurvivors.org/group/spinalavf if you're interested.
Tori
Hi Kari--
I am relatively new to this board and stumbled upon your post from a few years ago. How are you feeling now? Have you had surgery? I had an intramedullary AVM located t7-t9. I had 80% of it surgically removed. It was originally found on MRI and before surgery the drs thought it might be a cancerous tumor. I am so thankful that it was not. I am reaching out b/c intramedullary AVMs are rare indeed! I would love to hear how you are doing.
I'm one year out of surgery and still in pain. Lots of hypersensitivty in my chest area. I take Gralise (a slow release form of gaba pentin/neurontin) and valium as needed to sleep (take quite rarely). I am finding some relief in acupuncuture and cold laser therapy.
Thanks for reading--I hope this finds you well.
Hello!
I am glad you stumbled across my post!!! Thanks for responding! So sorry to hear that you are living with pain. Sometimes I feel guilty that I am doing so well. Of course, I know that could change at any moment.
My last scare was in Jan of 2011 right before this post. Had been on a trip, become ill, (which I now believe contributed to my scare on the plane)... I was still weak and with the pressure placed on my body with that and then adding the flight a day later... my avm acted up. Was very thankful for a neurologist at Mayo who stopped my angio-gram from taking place, and then met with their top neurosurgeon who recommended going back to the "keep an eye" on it treatment plan. Needless to say, my anxiety was in overdrive for quite a few months after that whole ordeal, but I got through it. Thankfully, I am living a very normal life.
Other than weak legs and loss of sensation below the waist, which has improved since small bleeds from the past.... I am doing very well. My doctors feel that to go in and do any sort of treatment would place me at too much of a risk to lose what I do have. So, is it worth the risk? The more information that is out there, I am finding I am thankful no one has touched me. Have had doctors who wanted too.... Perhaps it is the wrong decision, but then again I am living a normal life pain free at this point. I try not to think about how I could lose all of that in the blink of an eye. But hey, everyone's life could change in the blink of an eye. Each day is a gift for all of us.
I feel for you and those who live with the constant nerve pain. I know what that pain feels like, and I don't know how you do it. I will definitely keep you in my prayers. Would love to stay in touch too!! Glad you found this site. When I was diagnosed in 98 I spent hours combing the internet trying to just find more info on my avm, let alone to find someone who had the same thing. I was blessed to meet Jen. We became fast friends and are in touch to this day.
Good to hear you are finding some relief for the pain. I am learning about essential oils right now and have read that some of the oils can be helpful with nerve pain. Have you looked into that possibility?
Need to sign off for now. Hope to keep in touch!