Superficial Siderosis

Please contact Dr. Kumar, and Dr. Morris at Mayo Clinic Minnesota. Also, Mayo Clinic/ Steve GRINSTEAD. Google it. It is a discussion of my operation to stop the bleeg

@janeilene sorry SS has made it almost impossible to type. Please see Dr. Kumar and Dr Morris Mayo Minnesota. See Mayo Clinc/Steve GRINSTEAD a description of my operation for SS. The operation stopped the bleed but I still have iron deposits on my spinal cord, brain stem and cerebellum so I still have SS.

Thank you for the recommendation for doctors at Mayo. We don't live that terribly far from them (about three hours I think), but I'm not sure we could do that trip. We have 5 house cats and 2 Chihuahuas so I'll have to figure out how to find someone to come and pet sit for us. We have three kids. One in Pennsylvania, one in Indiana and one in Iowa about an hour from where we live. She has a full time job as a pharmacy tech and I don't know about her getting off work for that. I'll have to check on that. I'm going to be having an appointment to get some injections from a pain clinic. When I ride or drive a car my neck really hurts so I can hardly hold my head up straight and I get a terrible headache in the back of my head. I'm wondering if this is a part of the SS. What do you think. Is it fairly easy to get an appointment at Mayo or do you have to wait months and months? Again thanks for the recommendations.

You had to wait. That is why they call us “patients”. If you have an active bleed like I did you must get it fixed immediately. If you don’t you will get much worse quickly. The operation @janeilene operation to stop the bleed does not remove the iron deposits so you will still have SS. To illustrate my operation was in 2017, for years after that I did not have double vision now I do. So, SS is progressive in the wrong direction. You are in the right place. I recommend that you join several groups like “living with Superficial Siderosis. “ we can help you and give you encouragement

I don’t know if the neck pain is coming from SS. Could be. Have you ever been diagnosed with any problems with herniated discs in your neck. I do, and yes it hurts. You really need to go to Mayo! Now.

About the mid ninties we were taking a tree down on our farm. As I saw they were sawing off a branch that was about 10 inches in diameter I moved to get away and I would have been clear of it if it had fell straight down like it was supposed to, but instead it hit another lower branch and bounced off the back of my neck and head. It completely knocked the wind out of me as it doubled me over in a sitting position and my biggest problem I had at that time was breathing! So I'm wondering if that's what caused my SS. I just started getting MRI's of my brain December of 2024 after a cognitive test (I have amyloid plaque in my brain) and did have a small brain bleed in my left parietal lobe which showed up in a CT scan. They called me on the way home and told me I didn't have to come back until the next day and that's when I got my first brain MRI. They chose to just "watch it" and I started having more MRI's 6 months later. In August last year I finally was able to get hooked up with a neurologist and she's scheduling MRI 's maybe about every 4 months or so. My August scan showed the small brain bleed was almost stopped then in December I had another MRI that showed about 6 micro bleeds. No one mentioned my micro bleeds in August, but the radiology report in December said they were stable from August so they were apparently there in August. So I'm wondering if the above accident with the tree limb is the cause or is it just rotten veins in my brain because of the amyloid plaques. I'm thinking because I'm 76 they figure "oh well she's going to be dying soon anyway" I can't, of course, get the super duper infusions for the plaque because of the bleeding since they (the meds) can cause brain swelling and more bleeding so I don't know if I'm ever going to be able to get the infusions. I am on a couple of pills that seems to help my memory thank goodness, but I don't know for how long.
Sorry for the length of this, but I wanted you to get an accurate picture of what all has been going on. So to answer your question about the neck and head aches I have had shots before into the muscles that knot up in my shoulders and it helped so much. I do have a T3 fracture and one at T12 in my back. They say caused by osteoporosis which I am getting shots for twice a year.

@stevegrinstead
Yes I have degenerative disk disease, bulging, spinal canal narrowing, foraminal narrowing all in the cervical region and at

I'll try this again. It disappeared when I was typing. I have disc bulging , spinal canal narrowing and foraminal narrowing from C2 to C7-T-1 and T1-T2 disc bulging with disk protrusion. That's all the further they scanned.

Likely the cause.

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A lot happening in your life!!!

@stephenstroud
Too much. Going to doctors has become my social life. (sigh)