nearly 2 years post SAH and now I get this??

[JimInChicago]

Am new here. 8-2010 I have 4 AV fistulas bleed at the same time at about C4. Happened while I was at the hospital so went on life support. Major SAH occurred and I was saved by the dept. chair. Spent 2 months in the hospital; the second in a rehab hospital setting. Thought that I got away with something (except for having to cath) because I ended up largely intact. Now I start having trouble walking. A CT Myleogram shows extensive adhesions and tethering from C5 thru T11. Walking getting harder and rapidly so. I see another neurosurgeon this week but I cannot find any info on any patients having an SAH followed by adhesions and tethering and what to expect from here on. I am a 66 year-old male. Would love any advice and maybe pointing to research in this arena. Thanks for reading. I am quite concerned for my future mobility.

[SCI-Nurse]

Do a search on our forums for the word "tethering" and you will find many previous posts. I will also ask Dr. Young to comment for you when he gets time.

(KLD)

[Wise Young]

Originally Posted by JimInChicago

Am new here. 8-2010 I have 4 AV fistulas bleed at the same time at about C4. Happened while I was at the hospital so went on life support. Major SAH occurred and I was saved by the dept. chair. Spent 2 months in the hospital; the second in a rehab hospital setting. Thought that I got away with something (except for having to cath) because I ended up largely intact. Now I start having trouble walking. A CT Myleogram shows extensive adhesions and tethering from C5 thru T11. Walking getting harder and rapidly so. I see another neurosurgeon this week but I cannot find any info on any patients having an SAH followed by adhesions and tethering and what to expect from here on. I am a 66 year-old male. Would love any advice and maybe pointing to research in this arena. Thanks for reading. I am quite concerned for my future mobility.

Jim,

As you know, subarachnoid hemorrhage is associated with arachnoiditis and adhesions that can compromise function due to tethering. The only treatment that I know is surgery to untether the spinal cord. The outcome of surgery is quite variable and, in my opinion, depends on the skill of the surgeon. The cleaner and gentler the surgery, the less the likelihood of further neurological loss. The surgery may not reverse the damage but should prevent progression of loss. If your condition is progressing, I recommend finding the best neurosurgeon available and have an untethering operation.

The question of who is the best neurosurgeon and how one would find that surgeon is a matter of common sense. If you met with a neurosurgeon and that surgeon did not tell you the above, that neurosurgeon is probably not the right person to do the surgery. Follow your common sense. The surgeon should be experienced with a track record of restoring function and preventing progression of neurological loss associated with arachnoid adhesions. It is quite a common condition and therefore many neurosurgeons are aware and experienced.

Wise.

[StemCells&AtomBombs]

What Dr. Young says is very true.
I had surgery done on an arachnoid cyst after my spinal cord was damaged by a hematoma from a bleed.
Anyways, after the arachnoid cyst, I lost the feeling that I had gained back and in the end the cyst even came back (probably causing a syrinx that I later had to have operated on).
The doctors believe that the current cyst is not worth operating on because it's small and the last time they did it, it came back, but I have all the common symptoms of arachnoiditis.
I'm currently thinking about a third opinion.

Good luck to you!

[JimInChicago]

At least since the diagnosis. He says I have no fewer than 16 tethers, some directly opposed to each other, distorting the cord. Says there is no way to determine exactly which one is causing my walking/right leg issues because the adhesions and tethers stretch from C5 thru T11. He explained that the view, at this point is kind of an all or nothing deal meaning if I decide to do this, we are talking a surgery taking maybe more than 20 hours, opening the whole thing up, and doing laminectomies at each level. He said this given the scope of this, the risks are quite large. He is doing an MRI of cervical and thoracic spine and an MRI of the brain to see if there are differences from the 8-2010 studies that might jump out at us.
I learned my non-programmable shunt may be an issue for this surgery too. Problem is this is progressing at a fast clip. It is worse than a week ago, for example. HOWEVER I AM still walking and driving too but sensations are changing fast. So, depending on what the new tests find, I am inclined to ride this out a bit. After all, I have had to cath since the SAH in 8 of 2010 and I do NOT want to loose bowel function too.
Anyone with suggestions is thanked in advance. This has not been a good day.

Thanks to all and for this forum.

[Charlottes Web]

Hey, Jim, in the windy city! Sounds like you had a close call and have a mess in your spine to prove it! Sorry about your situation - arachnoid cysts are devils! I have one, (I call it Charlotte), at T2, T4 with extensions, (I call them Charlotte's legs) to T8, last MRI. My cyst has been ever changing and the changes come on fast like you describe. I'm almost 4 years post accident and still able to walk - some moments better than other moments.

I agree with Dr. Young and StemBombs (Dennis). If the damage progresses something will need to be done. My Neurosurgeon will not remove my cyst unless it increases in size. He says the cysts almost always come back, the surgery is risky, it can sometimes make things worse, and it's a tough recovery. I think there's a fine line with respect to surgery and hoping I never have to face it!

I'm glad you got some answers today and hope you're more relaxed - Arachnoids don't like stress, or at least Charlotte doesn't... Please keep us posted on how you're doing and feel free to ask any questions if I can help! In the meantime, welcome to CCC!

[JimInChicago]

Guess I call you Charlotte? Anyway, thanks. They never said I had a cyst, unless that is a given with 16+tethers and adhesions from C5 thru T11. All I know now is that it appears that no one is suggesting surgery yet mainly because it means they have to open the whole distance and the risks of that and the rebuilding of the spine for support is kinda big. My walking is going downhill day by day. I began using the cane today and my right leg has gone numb from the lower back on down. What I wish is that they could somehow know at which level the problem really is that is causing this so they could do just that part of my back. I am told there is no way to know. And, worse, I have been told so far that no one has seen tethering this extensive. Seems most people who have an SAH as extensive as mine was just simply do not survive to make it as far as I have to have these problems begin. I hope that the MRI's next week will give me more information. BUT, I can walk, today! And Chicago has 72 degrees, sunny, and it is beautiful. And I can go up today to see my 3 grandkids, ages 4, 6, and 18 months. So I have much to be thankful for, even in spite of it all. I am going to enjoy all I can for as long as I can.
And thanks, again, for your comments.

[Charlottes Web]

Way to break the record, Jim ...several of them! 16 plus tethers?!?

I agree with your surgeon, not that it's worth much, but unzipping your spine from top to bottom sounds, well, risky. You'll find lots of folks here in the same boat, including me; the risk of surgery out weights the benefits. BUT, you have a great attitude, determination, energy, and 3 Grandchildren to keep you motivated, no risk there!

Hopefully, the MRI will help you and your doc come up with a good plan of action to keep you with your smile and Grandchildren a long, long time! Keep us posted!

Oh, you can call me, Tina!

[Kitten]

I have suffered from tethering myself and yes, it is something that keeps reoccurring, at least in my case. Luckily though my first surgery to remove the tether left me stable for 9 years before it happened again. I think your situation is different though since you have so much tethering going on and even if you have a great surgical outcome there may still be complications. My surgery was done by Dr. Scott Falci at Craig Hospital in Denver, CO, detethering is his specialty and he gets patients from all over the country and even the world. He might be able to look at your MRIs and figure out which parts are causing the most trouble. I don't think I would go for the 20 hour surgery to fix all of it at once, I had a detethering surgery last year that lasted 7 hours and the recovery period was difficult and it took a few months before I felt normal again. I understand your urgency in wanting to do something right now before you lose more function and I completely agree, but it will be difficult to find a neurosurgeon to go in without doing a thorough study of your situation. The potential to cause more damage is just too high. Try not to let it get to you too much. In my case the first detethering stopped further deterioration only but my second detethering actually returned some of the feeling and function that was lost. Not saying that happens all the time, but sometimes it does.

[JimInChicago]

The numbness has increased. Now it is the entire right leg right up to the lower back and the left foot. MUCH worse when trying to stand and walk. BUT I can STILL walk, tho it is wobbly, but I have yet to fall. Neurosurgeon at NW has now decided since I have progressed so far and this fast, that he WILL do the surgery on the 17 tethers which means over two days and more than 20 hours. I had them put me into the schedule as they are SO backed up. The last conversation seemed to impart that we are not so much trying to restore function or feeling as we are trying to stop further progression of symptoms. I am not sure I am up for this. On the 18th, I go to another medical center here for another opinion from a neurosurgeon on what should be done. The problem as I see it now is that I CAN still walk but I think they are saying that if I don't stop this stuff until I cannot walk, they can't restore function once it's gone. Is this the usual case with the effects of tethers?