Steve's Spinal Arteriovenous Malformation - Webmaster of SPINALAVMINFO

[Steve]

October 8th, 2004 - Diagnosed with Spinal AVM

Was diagnosed with a Spinal AVM (Arterioenous Malformation) from an MRI Scan after months of strange and unexplained symptoms and tests.



October 30th, 2004 - Meeting with Neurosurgeon at University of Michigan Hospital

After speaking to the actual surgeon that may be doing this procedure on me, we really only learned a few new things. Most of which we were told, we were already pretty aware of.

What we did learn was, that he was specializing in embolisation and in physical hands on micro-neurosurgery. We also learned that I had one of the more/most complicated AVM's to correct. The veins are actually directly inside of my spinal cord and are being fed by veins from multiple locations. Its so complicated in fact, that he is afraid to just jump into any type of corrective procedure. He wants to contact some of his people and also volunteered to contact Dr. Spetzler from the Barrow in Phoenix, AZ (Spetzler invented the chart that determines how bad AVM's are and is somewhat of a celebrity in AVM surgery).

The surgeon we talked to originally studied under Dr. Spetzler and was informed by us that we may be interested in having this surgery done by Dr. Spetzler. He seemed confident in his abilities but did understand that we wanted more opinions on such a problem/procedure and willingly volunteered to speak to Dr. Spetzler, show him my films and ask about my AVM.

More detailed MRI scans have been scheduled to give the neurosurgeon a better idea of how badly the veins are entwined into my spinal cord and where the veins are going and coming from that are feeding it. After this MRI, and possibly some other test(s) are completed, this is when the real deciding factor comes into play. This will determine if surgery is in fact the best route, or if embolisation is the best route.. or a combination of both. There also may be a possibility that the AVM is being fed by veins that cannot be cut off and will require alternate surgical methods.

Our information is still fairly limited at this time as far as the corrective procedure goes... but they have NO intentions of rushing right into correcting it without knowing as much as they possibly can and the best way(s) of going about it. Sounds like a good plan really. Dont want to be taking unnecessary risks.



November 3rd, 2004 - Radio Station Interview

A local radio station for my area, 96.1 WHNN, was contacted by a friend of the family and now has scheduled to interview me on the Morning Show. They want to help with my problem and have been informed of my website and it's future plans and want to help make it public.



November 4th, 2004 - Personal Update

As much as I enjoy keeping the people that care informed with this website and continuing to update it with as much information that I can possibly get my hands on... I fear that it may soon come to an end.

The reason I say this.. Is my numbness symptoms are getting worse. In fact they're starting to get so bad... that I sometimes have a hard time moving around the house, and especially sitting in front of the computer and/or typing.

So... in short... should you notice a lack of updates.. this would be the reason. In addition... I don't really know too many people who would be willing to take over doing the updates. I may know a couple, but I have no idea what there thoughts would be. I'll have to check into that.

Anyway... thanks again for everything...



November 12th, 2004 - Neurosurgeon news/update

Got a call from the neurosurgery department at University of Michigan with information regarding a possible embolisation procedure solution. They want to have a consultation with me to discuss this possible method(s). Also a more detailed MRI scan has been scheduled and all information regarding my condition has been sent to Dr Spetzler in Arizona for review.

Hope something happens soon... symptoms are getting worse almost bi-daily. I'm afraid that it won't be long before I'm living at the hospital. My mobility and every day life has become very difficult. Thus the reason for this short update...

Embolisation Procedure - http://www.avmsupport.org.uk/content.php?cat=50




November 16th, 2004 - Being Admitted

After making a phone call to my neurosurgeon explaining the new symptoms that I have been having... and how they have been a lot harder to recover from, sometimes not recovering. They called back today saying that I should come and stay at the hospital to make things move faster and that things should be moved along quicker.

The only things left before the actual procedure(s) are the consultation with them about the embolisation procedure and the detailed MRI/MRA scan. (to my knowledge)

Well... it looks like this will be the last time this site is updated until I'm out of the hospital... I may never be able to walk or type again... so scary.. but still wishing for the best. Wish me luck... And thank you everyone for your kind words and support. I'll be thinking about it a lot!



November 24th, 2004 - Attempted and Failed Embolizaton procedure + bad news

During this day... A very long day I might add.. I was prepped for the Embolisation procedure with Dr Rayzak at University of Michigan Interventional Radiology. Prior to the procedure the Dr came and spoke with my family and I and the others that were with me at this time to fully explain what this thing really was, and what was really involved and at risk.

Since no other doctors had done their job to the fullest, and he realized this after speaking to us because we had not known everything there was about the procedure and options and ways of going about it, he directly called Dr Spetzler from the Barrow in Phoenix and came back to us in 15 minutes with a reply and answers. Physical neuro surgery is only a following step in my case because my AVM is far too complex and risky to do surgery on without having the main feeding vein(s) closed off to the anomaly first.

Dr Rayzak explained the risks involved and how the procedure would be done. After this, It was a very rough and emotional time. We learned that not only is the AVM affecting my spinal cord but there is also a malformed vein going to my brain. The worst part of this is, normal people develop this vein but it drains blood FROM the brain to your spinal cord.. well I have an additional vein that comes from the AVM and feeds my brain. This creates a risk that I'll also have a stroke of the brain should the glue not stick where it's placed and travel through my veins. This creates the risk of possible mental problems in addition to paralysis just from that one vein, and does not include the already existing risks of paralysis just from the spinal AVM. In addition I have approx. 5 feeding veins to this AVM. So even after one is closed, the blood will start rerouting itself to the remaining feeder veins and the entire process could continue over again. In addition, this also increases the risk of hemorrhage in the new veins.

After being told all this, I then had to make the vital decision (yes/no) on the procedure. I must admit this was the hardest 15 minutes I've ever lived in my life. I of course realized, as did my family and friend, that there were no options and this had to be done and this was the only way and authorized the procedure. The doctor gave me a few minutes to be with my family and I went on my way to the procedure room.

I was there for 3 hours while they were attempting to get inside this vein with the catheder without any success. It turned out that the vein was wrapped around in a circle and is very extremely difficult to get inside of. It was becoming far far too difficult for me to stay still and I was on the edge of going crazy from having my head taped to the table and the meds were also starting to wear off and they could not safely give me more. They had to stop the procedure and have scheduled it for December 6th. This time they will be knocking me out completely until the procedure is done.

It has taken me 3 full days to even half recover from just this procedure... so I now realize how hard of a road that I have ahead. Each time another procedure is done, the same risks to my general normality are compounded and it could take up to 5 or 6 times of getting this done throughout my life. During which time, the risk of hemorrhage will always be existent until the AVM is eliminated.



December 6th, 2004 - Successfully completed first embolization

Went in on the 5th, spent the night at U of M and went in early morning on the 6th for the primary and first Embolisation procedure of my AVM. They put me out almost completely this time, and I was not really aware of what was going on. I guess they woke me a few times to make sure I could move still.. but I do not recall it.

I woke up after the procedure and was told that it was done. I was amazed.. I could move my arms and legs and was almost fully awake! It was definitely a happy moment.


They kept me in ICU for 24 hours for observations which went very well. They sent me home the next day in the afternoon after taking some MRI and CT scans to recover.


After speaking with the doctors that performed the procedure, I was told that they successfully shut off about 70% of the main bloodflow feeding the AVM and the aneurysm that was inside. The blood seemingly re-routed itself (as expected) to some of the other veins that feed the AVM and will still need corrective procedures to complete. (I'm hoping at much less risk) Also, the vein that was backwards and feeding to my brain, I was told is no longer a threat, therefor there probably isn't a risk of brain stroke. This is also a good thing.



December 10th, 2004 - Personal Update

Still recovering from the procedure... found out that I have about 95% use of my right leg and have some weird numbness/temperature sensing issues with it from my butt all the way to the right foot. But all things considered... this is acceptable.

In addition, today I experienced a very very strange attack of joint pain in my elbows and knees, and it transferred down my legs to my feet. This lasted most of the day, but eventually did go away. Heat seems to help relieve these symptoms. I'm awaiting to find out what they doctor has to say about this, as the pain was bad enough to call in (which I did).



December 17th, 2004 - News/Update

Experienced a problem on December 16th... symptoms seemingly got worse all the sudden and numbness got worse as well in my leg.

I tried to sleep it off but didn't work. Ended up calling U of M and they suggested i go to ER and have it checked out ASAP. So i did...

They sent me home because they didn't think the problems were bad enough.. come to find out after speaking to Dr. Rayzak from U of M, they should have kept me there for observations because my problems were acute. Especially being post-op.

Now I have an appointment being set up at U of M neurosurgery to determine what the next step will be and to get a full exam and maybe determine why my numbness has gotten like 20% worse.

Dr. Rayzak doesn't want to do more embolisations (gluing) until he hears what the surgeons have to say because the embolisations will be at the same risks. (25% chance of paralysis) There are 2 veins that were opened up after the first one was glued shut, so that would make 50% risk. He isn't interested in doing the procedure unless it's the only option. Perhaps open neck surgery will be a less risky operation. Will have to wait and see.



January 1st, 2005 - Happy New Year

Figured I'd say hello again.. and wish everyone a happy new year.

As for an update.. not much to tell at this time.. Just waiting for my next appointment with the neurosurgeon at U of M to be scheduled.

Symptoms come and go... also waiting to find out what they think of them at the hospital.

Thats really about it...



January 22nd, 2005 - Consultation and update

Not a whole lot to say really. Been spending most of my time relaxing and trying to recover from the procedure that was done... Going very slow.
Its been almost 7 weeks since it was done, and I still can't go out and do something in public that takes more then 30 minutes before I feel like total crap again.

About a week ago, I had a consultation with the Physicians Assistant to the doctor who performed my embolisation. The appointment was made bacause my toes were turning black and going numb when I sat down for more then 10 minutes. Also had the opportunity to ask a bunch of questions that needed some answers.

The PA said that my pulse was good and strong in my feet and that it may be mostly a circulation/lack of activity problem. He didn't believe that it was anything major.

As for the questions I asked, they were mostly answered with variations of the phrase "The condition you have is extremely rare, and it is not common enough to know what's going to happen or what your symptoms will be or even how long they will last" He said the best way to compare what I'm going through right now is to a stroke. He says that it could take 6 months to a year before I'll know what symptoms will be permanent and what the results of the embolisation procedure will be.

Unfortunately, I wont make it that long before I need another procedure done. On Feb 23rd, I have an appointment with Dr Thompson at U of M (their top neurosurgeon - rumored to be one of the top 10 in the USA) to discuss what is next. (more embolisation or open surgery)

The bad news is, the Dr that performed my embolisation, is taking an extended leave of absence for an unknown period of time.. and will not be available to do another embolisation...

That's about all for now. --- I see that the website is still getting a lot of visitors and people are checking out what this site is about and my condition as well. I'm curious why not many people have posted or taken advantage of what I've made available. Don't be shy... if you have something to say, don't be afraid to say it.



January 27th, 2005 - Hospitalized and update

On Jan 26, I spoke to my neurosurgeon at U of M, and mentioned that my symptoms were getting worse and more acute. After hearing what I had to say, he said that it was not a good thing for it to be getting worse 7 weeks after embolisation and told me to come to the ER and be admitted.

I went down that day and was admitted. I underwent my 5th angiogram and an MRI/MRA scan and several physical exams and was allowed to leave 2 days later.

Diagnosis:
Problems should not be getting worse. Thats a bad sign and he stated that more surgical intervention (embolisation) may be required in order to attempt symptoms from progressing further.

I asked for a month to see if they get better and also asked about physical therapy. He said that is fine, and that phsycial therapy may help but might only just slow it down. -- time will tell.



I spend 95% of my time on the couch. The only times I get up are to use the bathroom, feed myself (which is usually limited to the microwave) and to shower. As far as my life... it no longer exists. I'm in so much discomfort most of the time now that I can't do anything without my symptoms getting worse because of activity. My family and friends have to do just about everything for me and it seems my problem is so complex that there isn't much that can be done without more super high risks of total paralysis... or even partial.

I have been trying pain meds for my neck, and xanax as a muscle relaxer & anti-anxiety/depressant. They only work 30% of the time, and I am afraid to take them on a daily basis as I don't believe medications will help or solve my problems. I only take them when I feel I have no other alternatives.

It's rare that I was able to even sit here and write this update... usually I don't feel good enough to sit in this chair for more then 5 minutes before I either need to take a shower or go lay down to relax. I'm really starting to feel the effects of this illness. And I'm afraid if it does not improve soon, I don't know how much more I can take before I literally go insane. I would not wish this type of suffering on anyone... and if you're reading this because you have what I have... I'm sorry... because it really sucks.



February 16th, 2005 - Starting physical therapy

I had my first visit with the physical therapist today... and it went pretty well. I seem to be feeling better after I started taking some medication that I had to basically beg for... - by this I mean that I was having such bad symptoms that I told him that I needed SOMETHING or ANYTHING to help get some relief before I went insane.

During the visit, my full medical history was discussed and recorded, and a strength test was done. I have to go back next friday and thats when the real therapy begins... hopefully ill be able to recover some of my ability and be able to live a somewhat normal life... I'm hoping...

Don't have much else to add at this time so I'll end it here.



March 3rd, 2005 - Change of plans

Well, I originally had a consultation/followup appointment scheduled with my neurosurgeon... but his secretary called 1 day before the appointment and told me that he canceled it because -she didn't really know why-.

I of course was angry at this point because it takes 3+ weeks to get an appointment with this guy, and he knows what my condition is and coudln't bother to call me back himself and say why he canceled. I told his secretary to have him call me...

A couple hours later, I get a call from the Interventional Radiologist Physician's Assistant.... he says to me "I was asked to call you and explain what you're going t be having done". Yeah.. thanks... So what about my neurological questions that I had for the neurologist? "You'll have to talk to him" No kidding....

So.. even after I ask his secretary to have him call me.. someone else calls instead. Is he doing this crap on purpose? Is he trying to avoid my questions.. or what... either way, it pisses me off.


Anyhow... the next plan now.. is they want to do something called a "Provocative" Angiogram... Basically it's a regular Angiogram but instead of x-ray'ing the veins/arteries, they are going to use the dye, a balloon and anasthesia.. go into each feeding vein to my AVM using the dye to navigate... close it off temporarily with the balloon and inject the anasthesia to see what parts of my body are "shut off" or affected by the anasthesia.

They say this is not guaranteed results.. but is only a precaution so they hopefully do not paralyze me... or cause major problems when they do another embolisation.

As for any questions I had... I guess they're not important to the Neurosurgeon... Whatever... I'm getting supremely fed up with everyting, and all I want is for this crap to be overwith... I think I'm just going to get as much done as I can, as soon as I can, without taking large risks.

As far as I know, my AVM cannot totally 100% be removed because some of the veins are feeding other important parts of my body.... who knows..
Anyway.... even a week after being told all this, I still cant sit here and say this without getting majorly angry... so I think it's best that I just stop here.



April 3rd, 2005 - Update and news

Symptoms are still slowly progressively getting worse. The neurontin that I've been taking seems to be slowly failing to help anymore.

I guess at this point, if I had to describe how I feel - I'd say that it feels like my body is slowly killing itself and function is slowly failing.

Updates and news on this site have gotten far and few between because of how I've been feeling... I only wish I could do more... writing here and making stuff available to others is a good method of therapy, but when you feel so horrible that sitting here writing is almost unbarable... you tend not to do it as much.


The consultation / followup appointment has been scheduled for April 8th. They also say that my next invasive testing procedure will be some time in late April or early May. (We'll see... but I sure the hell ain't letting them slack off anymore... I can hardly stand living like this anymore... and they're gonna start doing something or I'll go somewhere that will)



April 19th, 2005 - Followup appointment and update

After seeing Dr Thompson on the 8th, we didn't really learn anything new and encouraging... as expected.

We did learn that regardless of how im feeling right now, they have no immediate plans to do anything quickly. They know that im suffering... but they still want to evaluate how it changes/progresses/degresses.

They are still planning the provocative angiogram in the near future, and will most likely schedule another embolisation following. They won't do anything immediately unless I lose function of major part(s) of my body for an extended period of time. (24hrs or more)

Risks are still the same, symptoms still suck & i'm running out of patience.

Been trying to tie up all my loose ends so I don't have to worry about anything should I be unable to do anything for an extended period of time (couple days or more). Unfortunately, that has been more difficult then expected... I have a lot of "ends" and they all take a lot of time. Some "ends" rely on others.. and they have not been adequate in performing their tasks which makes it more difficult for me.

Don't really know what else to share at this time.. cant think of anything positive.. so I'll just end it here.



May 4th, 2005 - Testing scheduled

Received a phone call a couple days ago from the PA, saying that they finally got together and had their meeting and had scheduled the appointment for my provocative angiogram testing.

Its a bit more detailed, complex and uncomfortable then originally expected... They're going to have to split the test up into multiple surgeries because of the length of time & amount of drugs required to complete the testing. They're also going to have about 10 people in the room at all times during my testing to monitor brain function, lungs, nerves, everything that my body does.. EVERYTHING... After they're finished with that sequence of testing, I'll have to stay in ICU for at least 24 hours for monitoring...

This will not be fun.... especially to have it done multiple times... definately not looking forward to it.. but don't see that I have any alternatives.

I'm just hoping (even though they said they probably wouldnt) that if they do some testing and find that it is safe to follow through on an embolisation.. that they just do it... Im tired of dealing with this thing.. its causing me nothing but pain, discomfort, stress and financial disaster. It's ruining my life... and I just want it to end as fast and as safely as possible..


In addition:

I can no longer attend physical therapy... My insurance will no longer cover it. They only cover up to 60 consecutive days. Being that therapy is about 3grand per month... I dont see that happening without insurance unless Im on the floor and cant move.



June 1st, 2005 - 2 weeks post-op and news

It has been 2 long agonizing weeks so far since my last procedure on May 18th. It was originally going to be just some provocative testing, but they did the test AND another embolisation. So.. there's 2 major surgeries out of the way. They plan to do another test + embolisation within 6-8 weeks of May 18th because if they wait much longer, chances of the AVM regrowing is possible.

I have been feeling weird since the time of the surgery.. sometimes I feel better then I did before the surgery, and other times I feel worse.. The other day, I was in the local ER because of severe neck/back/arm/and side of chest pains that didnt go away with pain killers. They did an MRI and a cat scan of the brain, and found nothing wrong and had said that my AVM looked better then it did before the surgeries.

I guess im just having some really bad post-op pain or something? Dont know, still have to do a followup with University of Michigan.

Anyhow, I still don't feel good enough to work, and have not worked in almost 2 months because of everything I'm going through. The realtor is coming over tomorrow so I can discuss selling my house... and I have to find another place to live that is based on income, or move in with a relative.

I've applied for SSD and SSI (Social security) They declined the SSI because I have more then $2000 in my bank accounts (which is retarded because when i WAS working, my monthly OUTcome was $2200 / month.. and still is... so why wouldnt i have enough to cover my back?) Anyhow.. now I have to wait until i have less then 2000 dollars to my name to apply for SSI again, and I have to wait 6 months to know if I'm even approved for SSD. If I am, they will only pay like $850 per month. Reason for this is also very stupid. They say that because of my age (being so young) that they base how much they will pay me off of what I claimed on my taxes for the last 3 years. 3 years ago, I only made about $17000, the year after that was $29000 and 2004 was $56000 but they didnt have 2004 on record and didnt factor it in.. so they used my taxes from 4 years ago instead which i think i mad $120 dollars that year... So lucky me.. i get screwed again... My house payment is more then SSD will pay me monthly... I cant live my life now. Screw you Social Scurity! I have enough left in funds to make 1 last house payment... then GAME OVER. No more income, no more house no anything...

Well... this is where i'm at in life now. I guess im still walking. but not without complications.



August 13th, 2005 - 2 days post-op

Well, after the operation in May, I started to feel a little better so I was spending a lot less time sitting at the computer and more time doing some outdoor/recreational things trying to enjoy life.

About a week before Aug 11 (the day of my 3rd major surgery) I went fishing with my dad... and a couple days before the surgery, I went conueing with some friends! It was a lot of work event though I didn't do much, and I felt like I had been run over by a truck when it was over, but I think it really helped me physically and mentally to have a change.

Its now the 13th and Im home (I stayed the night at my dads the night before) This procedure was a bit worse then any of the others because of the major scares.

Apparently after the surgery, they tried to wake me up and pull out the breathing tube. Once they did this, I had a seizure.. and stopped breathing so they had to cram the tube back in. A while later they tried to bring me out of it again, but this time, I wouldnt respond to them... they feared that I may have been having seizures while i was under medication.. so they had to scan my brain to make sure i wasnt braindead. Luckily i was not. There was liquid in my lungs and they had to take care of that problem as well.

The next morning they brought me out of my "sleep" and I was responding fine, and everything was good. They sent me home that day.. and I have not had any problems since.

They eliminated most of what they wanted to close off, but there are still 1 or two very tiny veins in there that were too small for them to close. They either have to wait until they (1) close themselves (2) reroute themselves (3) grow big enough for them to be closed with glue.

After this surgery, I feel better then I think I have yet so far.. I hope that it stays this way.



December 17th, 2005 - Some of the latest...

Well, I realize that it's been a long time since I posted. A lot has happened and changed over the past few months.

Since the last surgery, I felt great for a couple months, and spent as much time as I possibly could getting out of the house and doing things I enjoyed. Also started working on getting strength and health back in order..

After a few months.. things turned ugly again.. I had a massive attack of some kind. Ten times worse then anything I experienced before. I thought it was going to be the last thing I ever felt. I had to have an ambulance come to get me...

They did scans, and diagnosed it as an UNKNOWN ANOMALY... After talking to the doctors they think it may have been swelling and they're scheduling another MRI to see what's going on (They're going a little slow on this.. still waiting)

Since then, I've had some days where I feel pretty good, and some days where I feel like complete crap. Hit and miss...

Next major surgery/appointment for an angiogram is scheduled in February. They're going to see if there's any more veins they can glue shut (embolise). Previously, they were too small to get into. There are two known feeder veins left.


Cant think of much else to update with at this time... but if there's more.. ill post it.



March 10th, 2006 - February appointment / update

Short update this time.

They did a followup angiogram on me this February, and determined that nothing has changed. There are still two main feeder veins left, but they're too small to do anything with.

Next appointment is schedule for a year later.

Been feeling okay most the time lately, but there are still a few bad days.



September 28th, 2007 - Long overdue update

Well, it's been over a year since I posted any kind of major update to my story. I never went back for another appointment of any kind. They say that since I seem to be stable for the most part, that they do not want to do any more angiograms because they can be risky. I agreed. To choose between waiting for a hemorrhage or to have risky surgery... hmm...

I've been spending most of my time trying to enjoy what life can be enjoyed with minimal income. Fishing, playing guitar and some of my other hobbies. I've spent the rest of the time trying to catch up with my work which has not yet happened in almost 2 years.

I did manage to keep my house, but income and the market/economy are causing serious threat to that again as well.

My right leg is still numb on the back side between the knee and butt. I have some numbness on the calf as well. Sometimes the numbness drives me crazy, other times I hardly notice it's there. The right butt cheek always seems tense or clenched. That is nearly as annoying as the other problem. These are probably the result of nerve damage to my cord from the AVM. They don't show any signs of improvement so I will most likely have to just deal with it.

Most of the time I feel good enough to do things around the house, and get outside and do things once in a while. I cut my own grass with a push mower, although I'm probably not supposed to strain that hard and it could be very dangerous for me.

I started getting back into the social world a little bit. Started looking for a possible girlfriend or even a good female friend. I have been off all medications for a long time and have not felt the need for them.

Things are probably about as normal as they can get for me now. I occasionally have a bad day sometimes still, but they are not as common as before. Unfortunately they are unpredictable, so it happens when it happens. When they do, I can't do anything but lay down.

[Steve]

Hello everyone,

It's been about 1.5 years since I have posted an update on my story. Nothing serious has happened as far as my condition, but I have deteriorated in strength and ability over this time.

I also think that after the last embolization surgery that I had, it caused some kind of minor brain damage. I have had a difficult time concentrating and my short term memory has been exceptionally worse then before. I also feel like I have to struggle more then I used to, to complete a thought or have a conversation.

I took several IQ tests after I figured out I had this problem and was scoring 20 points lower then I used to. Before the seizures, I had an IQ between 130 and 144 on multiple test. I was not able to score higher then 122 and have not been able to score higher since the last surgery. Very frustrating to lose some of your intelligence.

Because of these problems I was never able to catch up on my work and it continued to fall behind as did my bills and finances. Eventually it lead to me losing my home and business. I now live with my mother because I don't have a choice.


As for my current health, I can't do anything for an extended period of time. (more then maybe 60 minutes) before I need to relax and stop. I still have random episodes of problems that come and go, but I have learned to realize when they are and aren't seriously bad. I spent a lot of times previously in the emergency room because something would happen and I would panic.

My symptoms with numbness, weakness and clenching are worse then they were before and I might possibly be slowly deteriorating into further disability. My symptoms never stop and they are extremely difficult to ignore. They have taken a major toll on my stress levels and I'm generally an unhappy person because of it.


I am fighting with Social Security to get my benefits because I need to be able to get some kind of relief for my symptoms. Medication or doctor visits or whatever it takes! They denied me and I'm now in the appeal process. I have been learning a lot about what I need to do to properly appeal my case and get the benefits I deserve, but it still is a big pain in the ass. They need to help me while I can still somewhat enjoy my life at my age before something bad happens again.

Living with other people is stressful and difficult at times and I simply can't afford to get away. Once you've had a place to call your own, living with other people is never going to be satisfactory again. Unfortunately there's nothing I can do about it without compounding my medical risks and dangers. Without Social Security, I don't think I will ever regain independence.


I'm alive, miserable and unhappy, but I'm still trying to get what I need to live. I want to live, but if something ever happens to me where I'm quadriplegic, then I will have no desire to live my life that way. If I can't get help with benefits and medical treatment for my symptoms, I also have no desire to keep living. I have been suffering too much and too long and if they don't recognize my problems then to hell with it all. I will give it some more time, but I don't know how long I can go.

[rfranco5]

Steve, i am sorry to here what you are through. Fortunately my problem was/is not as bad as yours.

[Steve]

Here is a picture of a normal MRI of the Neck.



Here is my Spinal AVM at C5-T2 MRI
(Unfortunately the quality of this scan was poor but it is still quite visible)

[missN]

Hi Steve,

I read your story and you have truly been through a lot. I'm so sorry to hear that you still after all these procedures have symptoms and problems caused by the avm.

I was diagnosed with a spinal avm some months ago after having problems with my legs for years. Mine is a type II located inside the spinal cord at TH12. I'm from Sweden and was sent to Paris to have an embolization which removed 80 % of the avm. I'm now waiting for my second embo that hopefully will remove the remaining part. The neuroradiologist who performed the embo is from what i understand one of the best in world (if not the best). I don't know what possibilites you have to seek medical advice abroad but if you can i strongly recommend you to consult him. The technique and materials have developed a lot just over the past years and this hospital in Paris has the newest technology and equipment. The name of the hospital is Hopital Foch and the neuroradiologist is George Rodesch. Maybe he could help you!

Best wishes to you!

[aqee]

hi! i'm lady bianca, 19 years old from here in Philippines. My sister aqee is currently suffering from this kind of sickness. I know it's so hard for you and my sister is going through. I will always keep on praying for you all to be recovered.

You can email me at lheydienuebi@yahoo.com.ph for some of yous stories.

Thank you and Godbless.

[Steve]

Thank you for your thoughts and wishes. They are appreciated.


I have a little update to give also.

A couple months ago I was approved for a local health plan for people in my situation. I have been able to see doctors now, but have yet to have any major issues resolved. A few pain medications and muscle relaxers have been prescribed. They help a little, but the symptoms do not go away.

I was finally approved for Social Security Disability. This is a big step. I may finally be able to stop living with family and relieve some stress by having a place to call my own again.

The new problems I have now other then symptoms, are finding a way to pay for a live in care giver. I didn't qualify for Medicare because of stupid technicalities. The house I owned and that was foreclosed on apparently was still in my name during my Social Security application process, according to state records. So, it counted against me, even though I had not been living there for over a year. It made me ineligible and I did not qualify. This also cost me about $1200 from SSI To get Medicaid, I must be disabled for 2 years.

The program in the state where I live to pay for caregiver service, the "Waiver Program", uses medicare/medicaid to pay the caregiver. There is also about a 5 month waiting list for approvals. I don't know what I'm going to do here. Very concerned about this.

That's all for now. Best luck to everyone suffering along side.