Reporting improvement.

[SWAlexander]

Hello everybody.
Saturday (yesterday) I landed in the emergency.
Blood in the Urine and blood dripping from the vagina even though I have had no uterus since 1980. Ultrasound showed blood collection in the lower abdomen.
Blood thinner Marcumar, for the Antiphospholipid-Syndrome, was responsible for breaking through the cervix scar.
Now I´m back home by choice. Must wait until the bleeding stops to have eventually (not clear yet) an exploratory laparoscopy.

 

[lenora]

I'm sorry to hear about your problems, @SWAlexander.....however, one must be positive and think that at last they may find a reason behind so many of your problems. Patience will be the hardest thing to find as you wait for the bleeding to stop and a laparoscopy to be done. I certainly wish you well. Yours, Lenora

 

[SWAlexander]

Patience will be the hardest thing to find

You are right, patience is not one of my virtue.
So I thought, since I must be in bed I finally can catch up on some neglected BIO lectures.
I found out that some Prostaglandins are the culprit of thrombosis and the med BC007 could be more effective in fighting antiphospholipid syndrome.
All blood thinners, soon or later, can lead to internal bleeding.
Thanks for your kind words.

 

[SWAlexander]

Last Friday an appointment with a gynecologist. He sent me straight to the emergency.
In the emergency, I had a doctor who listen to me after blood in my urine was found again. He did not ignore my wish and ordered among many other tests a CT with contrast.
Results: diverticulitis with a broken fistula. The upper part of my sigmoid colon was as thick as my arm, caused by acute inflammation. This was the reason I was bleeding from the vagina even though I had no uterus.
This however was good since the blood came out instead of turning into gangrene.
Instead of being bombarded with antibiotics, or having surgery (Ileostomy), I am now on - 3 weeks of 1-gallon water daily, only light broth and once a day very mild smoothies.
I agreed to this because I believe I would not survive another surgery.
After the last surgery in 2016, the doctors had a hard time waking me up after anesthesia. Today I know the reason - post-polio.

 

[godlovesatrier]

Jesus that sounds really horrendous. You must be in so much pain!

I don't know why we deteriorate so badly after a general anaesthetic but as someone who's had one I can totally attest. They really mess us up. If it is enterovirus that causes the post worsening then that would be interesting.

I really hope this works for you.

 

[lenora]

I'm so glad they found the cause for your illness, @SWAlexander. Quick thinking Dr, which probably saved you from a bad outcome.

Be good, do as your told and know that you aren't missing anything. After all, it's August. Yours, Lenora

 

[SWAlexander]

Lenora, you are very concerned, thanks.
"Be good, do as your told..."
That's the hard part. I´m stubborn in many ways, - not this time. I just don´t feel like dying yet.
The same doctor called me today to remind me how seriously ill I am and how dangerous a busted diverticuli - fistula can become.

 

[SWAlexander]

Hello to all you very caring people.
I´m again on the mend. Almost no more pain.
I stopped all meds except Hydrocortisone but I take VEDICINALS-9.
Yesterday and today I had a little green salad and a soft-boiled egg and lots of water and self-made mixed juice.
Short naps during the day. The energy level is slowly coming back. It remains a wait-and-see situation.
No inflammation blood test yet. My doc is still on vacation until Aug. 28.

 

[SWAlexander]

Here we go again - false diagnosis.
The last CT scan at the emergency Aug. 5th did not reveal the major indicator for bleating.
When I received a direct connection to a radiology CT scan and I began looking for the bleeding fistula. There was no indication of a ruptured fistula in the sigmoid. I concluded that one of the Tarlov cysts caused the bleeding. So I called radiology and asked for the doctor who evaluated the CT. Like in many cases before, this doctor was also too busy to talk to me. The assistant ask me what my question to the doctor would be. Point blank I told her that there is an incomplete or faulty diagnosis, and there is no mention of the Tarlov cysts. Well, she answered, "we don't look for cysts in the sacrum if not specifically asked for." She asked why I think I have cysts. I asked her for her direct email address and sent her right away the previous CT scans reports that showed cysts in the sacrum and T11 and 12 and a link that explains how to "Diagnosing Tarlov Cyst Disease"

.
and "Spinal Meningeal Cysts & Tarlov Cysts"

These are the symptoms described by Dr. Frank Feigenbaum and Reta Honey Hiers, I have a lifetime:
Dr. Feigenbaum: Symptomatic is in the sacrum and when the sacral nerve roots get compressed as a result of a Tarlov cyst patient typically experiences a specific constellation of symptoms it's usually sacral pain radiating to the buttock down the back of the leg to the foot. They can get numbness in those areas and weakness in the feet. particularly in pushing up or climbing stairs, they can get pain or numbness in the private areas, bowel and bladder dysfunction, painful intercourse or sexual dysfunction and in particular difficulty sitting. Can´t find a comfortable position to sit patients are constantly squirming in their chairs. Symptoms are made better by lying down.
Reta Honey Hiers, Tarlov Cyst Disease Foundation. www.tarlovcystfoundation.org
Hips legs feet as far as nerve pain causes more nerve damage over time so symptoms involving headaches all the visions sensory issues board vision double vision because it increased spinal fluid pressure causing. In some instances papilledema optic nerve swelling would cause those vision changes and vision symptoms also auditory changes in terms of pushing noises or a feeling as if you’re in a plane and you've changed sort of level and your ears sort of stopped up or some patients experience sounds like buzzing popping snapping cracking crickets. I'm just mentioning all those that have been mentioned by patients that they experience so the set of symptoms literally, that can go from head to toe starts to make the patients and a little crazy in their own head multi systems issues and it doesn't make sense to a lot of the medical community that there could be that many body systems involved.

I am so tired of false diagnoses for nearly 70 years, where patients are blamed or even accused of being hypochondriacs.
I wish nobody the overwhelming pain these cysts produce, where no pain meds work.
MRI 2016

Figure 1: Sagittal T1 -weighted MRI with contrast revealing a high signal intensity 3 cm cystic lesion in the lumbosacral spine at S3-S4. Red arrow points to the lesion.

Rare Disease Database
https://rarediseases.org/rare-diseases/tarlov-cysts/

 

[SWAlexander]

Tarlov cysts formation Causes and Symptoms
Excerpt:
Although the cause(s) of Tarlov cysts formation is yet scientifically unproven,there are a number of conditions that can create increased spinal fluid pressure, increasing the flow of cerebrospinal fluid into the cysts and causing them to expand in size and create symptoms. The cysts are then termed symptomatic Tarlov Cysts. Some incidents or conditions that might potentially cause the asymptomatic cysts to become symptomatic are traumatic injuries such as falls, automobile accidents , heavy lifting, childbirth, and epidurals. Trauma to the spinal cord, an increase in the CSF pressure, or a blockage of the CSF can result in cyst formation. Read “What happens in spinal cord injuries?” in Our Library. It is also noted that the herpes simplex virus can cause the Tarlov cyst symptoms to worsen during a herpes virus outbreak, but there is no known “connection” related to any virus or infection with causing Tarlov cysts to develop.

Symptoms:

• Pain in lower back (particularly below the waist) and in buttocks, legs, and feet
• Pain in the chest, upper back, neck, arms and hands
• Weakness and/or cramping in legs and feet / arms and hands
• Paresthesias (abnormal sensations) in legs and feet or arms and hands, dependent on cyst locations
• Pain sitting or standing for even short periods of time
• Pain when sneezing or coughing
• Inability to empty the bladder or in extreme cases to urinate at all requiring catheterization
• Bowel or bladder changes, including incontinence
• Swelling over the sacral (or cervical, thoracic, or lumbar) area of the spine
• Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
• Headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, double vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
• Other sensory system symptoms: Tinnitus/Ear noises (ringing, buzzing, snapping,popping, cricket sounds,etc.)
• Dizziness and feeling of loss of balance or equilibrium, especially with change of position
• The feeling of sitting on a rock
• Pulling and burning sensation in coccyx (tailbone) area, especially when bending
• Sciatica
• Vaginal, rectal, pelvic and/or abdominal pain
• Restless leg Syndrome
• PGAD (Persistent Genital Arousal Disorder)
• Sexual dysfunction and painful intercourse

more info: https://www.tarlovcystfoundation.org/info/

 

[SWAlexander]

Headache response after CT-guided fibrin glue occlusion of CSF- venous fistulas

Abstract
Objective: To assess headache response and patient perception of improvement after computed tomography (CT)- guided fibrin glue occlusion of cerebrospinal fluid-venous fistulas (CVFs) in a large sample size and with a long clinical follow-up.

Background: CVFs are an increasingly identified type of spinal leak in patients with spontaneous intracranial hypotension (SIH), and CT- guided fibrin glue occlusion has been introduced as a treatment option in a prior small series.

Methods:
Retrospective case series review of medical records from a single institu-tion was performed for all patients with CVFs that were treated with CT- guided fibrin glue occlusion between August 2018 and April 2022 in an outpatient or inpatient setting. Pre- and posttreatment Headache Impact Tests (HIT-6) were administered to patients, and a change in scores was evaluated. In some patients, pretreatment HIT-6 tests were not obtained prior to the fibrin glue procedure, and the patient was asked to fill out the pretreatment test based on personal recall of their symptoms prior to treatment. Patients completed a Patient Global Impression of Change (PGIC) scale after treatment. Pre- and posttreatment brain imaging was compared using Bern SIH scores.

Results: Thirty- five patients (19 females, 16 males; mean age 60 years) with CVFs treated with CT- guided fibrin glue occlusion met the inclusion criteria. Mean pretreat-ment and posttreatment HIT-6 scores were 64.7 ± 10.2 and 43.4 ± 9.9 (p< 0.001), respectively. The posttreatment HIT-6 questionnaires were completed on average 10.3 months after treatment, and 20 patients filled out the pretreatment HIT-6 form after their treatment. The mean PGIC score was 6.1 ± 1.3. Mean pretreatment and posttreatment Bern SIH scores were 5.9 ± 2.5 and 1.5 ± 1.5 (p< 0.001), respectively.

Conclusions: We report a large series of patients who underwent CT- guided fibrin glue occlusion of CVFs. We showed that headache scores decreased after treatment, and the majority of patients had high PGIC scores. Posttreatment brain MRIs also showed improved Bern SIH scores.KEYWORDSCSF leak, CSF-venous fistula, fibrin glue occlusion, headache, spontaneous intracranial hypotension
https://headachejournal.onlinelibrary.wiley.com/doi/epdf/10.1111/head.14379

 

[SWAlexander]

Researchers identify possible target for a type of sporadic ALS

What
Researchers have published two papers describing how they identified a potential new pathway for treating a sporadic form of amyotrophic lateral sclerosis (ALS). The studies were published as part of a cooperative research agreement between the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health, and the Switzerland-based biotechnology company GeNeuro Inc.

One unusual side effect of hundreds of thousands of years of evolution is that the human genome now contains DNA sequences from ancient retroviruses—referred to as human endogenous retroviruses (HERVs). Though most remain dormant, reactivation of HERVs have been implicated in several neurodegenerative diseases, including ALS.

The first of these papers shows that a specific HERV produces a protein that can be found in the cerebrospinal fluid (CSF) of people with ALS. This protein, called HERV-K ENV, is toxic when added to neurons grown in laboratory dishes. In addition, a special kind of mouse genetically designed to create HERV-K ENV develops symptoms very similar to ALS. Adding the CSF from people with ALS to lab-grown neurons resulted in damage to the cells. When a synthetic antibody designed specifically to recognize HERV-K ENV was added as well to those neurons, the toxic effects were reduced. These findings together suggest that the improper activation of the HERV-K ENV gene could be the cause of the symptoms seen in certain cases of sporadic ALS.

The discovery that a synthetic antibody to HERV-K ENV could be protective led the researchers to look at whether the immune system of people with ALS produced any antibodies, as well. In the second paper, the authors show that indeed higher levels of antibodies against HERV-K ENV were seen in the blood of a group of people with ALS as compared to healthy donors. The pattern of antibodies against this viral protein was also more complex in persons with ALS. In addition, there was also a correlation between higher antibody levels against HERV-K ENV and longer overall survival.

Together, these findings add evidence to the hypothesis that a reactivation of the HERV-K virus plays a role in the development of ALS, and that an antibody response against it is protective. These data also suggest the possibility that treatment with a synthetic antibody raised against HERV-K-ENV might have beneficial effects in those persons with ALS who also have evidence of HERV-K reactivation.

This work was supported by the NINDS Division of Intramural Research (NS3130), the ALS Association, and GeNeuro Inc.
https://www.nih.gov/news-events/news-releases/researchers-identify-possible-target-type-sporadic-als

 

[SWAlexander]

We find CSF-venous fistulas in about 40% of patients with frontotemporal dementia due to brain sagging but we need to increase efforts to find the cause of spinal CSF loss in the other 60% of patients.

https://twitter.com/i/web/status/1604738175284695040

Introduction
Due to loss of brain buoyancy, spontaneous spinal cerebrospinal fluid (CSF) leaks cause orthostatic headaches but also can cause symptoms indistinguishable from behavioral variant frontotemporal dementia (bvFTD) due to severe brain sagging (including the frontal and temporal lobes), as visualized on brain magnetic resonance imaging. However, the detection of these CSF leaks may require specialized spinal imaging techniques, such as digital subtraction myelography (DSM).
https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/trc2.12367

45 y-o man had headache brain fog and fatigue. Covid-19 +. MRI: brain sagging and dural enhancement but read as normal. Dx: #LongCovid. Four months later ataxia while deer hunting and #SIH diagnosed in small rural Midwest hospital. Symptoms resolved after ligation of fistula.

https://twitter.com/i/web/status/1603837490900541441

Cerebrospinal Fluid (CSF) Leak
https://www.cedars-sinai.org/programs/neurology-neurosurgery/clinical/csf-leak.html
Conditions We Treat

We treat and provide specialized care for:

• Brain sagging
• Cerebrospinal fluid leak
• Cerebrospinal fluid-venous fistula
• Chiari malformation
• Craniospinal hypotension
• Intracranial hypotension
• Spinal cord herniation
• Superficial siderosis
• Tarlov cyst

 

[lenora]

Hello @SWAlexander.....The first major neurological problem I had was an illness called Syringomyelia whereby cysts form inside the spinal cord. The pain was very bad and if I used my arms, neck pain that was highly aggravated would be present for the next week.

I was working then and had 2 children. True, it was part-time work and didn't interfere with their lives, but I was getting weaker and weaker from pain all of the time.

Each week found me sitting outside some doctor's office first thing in the a.m. Long before they even opened. At least I was seen and while the doctors all knew there was a problem, they couldn't help me. All were young and just starting out. The older doctors seemed to dismiss me although one did find a pituitary cyst. And so it goes for us.....one thing after the other.

I've written about ice for stopping that burning pain....have you ever tried it, the Ace ice packs in particular. SM surgery was EXTREMELY painful and brain surgery was nothing in comparison. Gabapentin cream (and a mix of other things) is available via prescription from a Compound Pharmacy. If you want to try it, let me know and I'll give you the combo.

My neurologist, who actually became a good friend, died just a short time ago. He did so much more for me than neurology. My husband also misses him and we worked on many papers for others to read. This was when I did heavy volunteer work....hard going, especially the years before a personal computer. We were both on a tremendous learning curve. He diagnosed my illnesses as time passed and I'll be forever grateful to him. His wife was in home hospice, but he died before her...a very, very sad situation.

Try the ice, it may help. I also have a med for leg cramps....not very well known, but it does work. Let me know if you more details. Yours, Lenora

 

[lenora]

Hello godlovesatrier.....Yes, I still take heparin, but doctors are very careful with other meds and are interested in the vitamins I take. I'm careful to not have any negative interactions going on. I hope you're doing better.

Just make certain your Dr. is aware of everything you're taking. Wishing you well. Yours, Lenora

 

[SWAlexander]

Lenora

The older doctors seemed to dismiss me although one did find a pituitary cyst.

This is outrageous. How did you or your dr. approached the pituitary cyst? At the time did you have had neuro- inflammation as well? I do.
Thank you Lenora, for your inspiring words and offers to help.

Ace ice packs are no option for me since I have post-polio. PPS people cannot tolerate cold.

About the muscle pain.
In 2016 I have been told to take potassium (eat 2 bananas a day) and exercise. The same answer I got from a neurologist in Germany. Potassium deficiency was not the answer and exercise did more harm. So I researched my DNA. There it was "actinin 3 deficiency. α-Actinin-3 deficiency results in altered skeletal muscle metabolism, with the X homozygous genotype (ACTN3 577XX)". PPS is also linked to the same mutation.

After this discovery, I wrote to the same neurologist in the US and presented the DNA evidence with over 20 links to papers related to genetic and epi-genetic (mutation caused by a virus(s) and possible bacteria (sepsis).
The US neurologist wrote back and confirmed in short, what I know already. "in the case of genetic ACTN3 577XX mutation there is nothing we can do about it).
The German neurologist admitted that he knows about muscle differences in super sports athletes but nothing about ACTN3-altered skeletal muscle. I sent him a link to a Youtube teaching video explaining the 3 muscle types. He called, telling me his English is not sufficient enough to understand.

I wonder sometimes if some doctors cause more harm than they do good. You also have had your share of experience.
Well wishes to you and please take care of yourself.

 

[lenora]

Thanks @SWAlexander. You've tried and you're right. Sometimes it's best to just to "go it alone." Once we have a diagnosis it's easy to see if there are any new insights to be found.

I didn't know that post-polio patients couldn't tolerate cold...sorry about that. There are meds that help now and if people don't want to use meds, then compound creams (most don't go via organs). These do work and certain meds can be added or subtracted as needed. Of course my neurologist has now gone and the new one doesn't especially know me, so I think I'm fine on my own. I'm just tired but I do encourage young people to keep enquiring and finding new things that may help. After all, if you don't do it when young, when does it occur?

After all these years, one knows exactly what we're up against. Yes, I have or have had plenty wrong....and always will. The older years just add to the symptoms. There's always something going on and to be honest, I ignore what I can.

It's most comforting to have a doctor who knows and trusts us (the latter being ultra-important in my mind). However, it does take time to build a relationship....and once my internist retires, there will no one. Heavens, my dentist knows me better!

I know this happens to a lot of people, you're one of them, and I can only return good wishes to you and hope that at least pain will be kept to a minimum. Thanks for your good wishes and stay safe. Yours, Lenora

 

[lenora]

Addendum: You asked about my pituitary cyst. This was actually found by my gynecologist (now also dead). Treatment was easy enough: I took the medication bromocriptine for a number of years (one forgets how many) and it eventually became a non-issue. One of my easier problems to be sure. Your problems are difficult to solve, but I could have told you to eat one banana per day. No, it really doesn't get easier, does it?

Sorry about yesterday's problems. I hope you do better this week. Yours, Lenora

 

[SWAlexander]

Some of you remember my post from Jul 31, 2022

Saturday (yesterday) I landed in the emergency.
Blood in the Urine and blood dripping from the vagina even though I have had no uterus since 1980. Ultrasound showed blood collection in the lower abdomen.
Blood thinner Marcumar, for the Antiphospholipid-Syndrome, was responsible for breaking through the cervix scar.
Now I´m back home by choice. Must wait until the bleeding stops to have eventually (not clear yet) an exploratory laparoscopy.

Now Dec 18, 2023 I finally have a conclusive answer: "Rectus sheath hematoma"

• Spontaneous Vessel Tears: In some cases, blood vessels within the rectus sheath may tear spontaneously, often due to underlying vascular conditions or weaknesses in the blood vessel walls.
• Complications of Anticoagulation Therapy: Patients who are on anticoagulant medications (blood thinners) are at a higher risk of developing hematomas, including in the rectus sheath, as these medications can increase the likelihood of bleeding.

What I have learned is, not to believe the first diagnosis. At the time I followed my first instinct and stopped Blood thinner Marcumar.

 

[Rufous McKinney]

Saturday (yesterday) I landed in the emergency.
Blood in the Urine and blood dripping from the vagina even though I have had no uterus since 1980. Ultrasound showed blood collection in the lower abdomen.

gosh, I just read all that....these threads that vanish and I didn't know you'd had such difficulties.

You're very brave. I'm incredibly impressed with you having gotten through all this. And you are still dealing with it?

I feel like my digestion is very precarious inside there. Like all the ligaments are really weak, and I can feel how digestion is so taxing. Pant, HR increasing, etc.

so-banish, whatever is: rectus sheath hematomas.