CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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neava
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Re: CCSVI and CCVBP

Post by neava » Mon Apr 16, 2012 4:50 pm

hi dr upright

im the friend nigel was speaking of,
I have a intradural lesion compressing the cord at T6.
my last MRI has showed : the thoracic cord in this region does lie very anterior in the canal with a limited CSF space anterior to it at the T5 level, this may indicate tethering of the cord,
also the surgeons stated that the fluid had slowed.

i was wondering what issues this might cause? i am awear that this can cause pressure headaches,
which im now getting again. these did disappear after decompression surgery, i had surgery in june last yr,
im now on a surgical list and waiting to be called to have my spine investigated, and repaired if possible,
another issue is, they are planning to remove all the bones, im unsure which parts these are, my previous surgery was a laminoplasty and excision of arachnoid cyst T7 -T10, this area is be removed as well as T6 and T5, would there be on going issues? im a bit concerned on this,
but im also in so much pain that im also not able to cope and leave it, so its would be a catch 22.
thankyou for your time

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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc » Tue Apr 17, 2012 12:58 am

Hello Neava,

T5/6 lesions don't cause pressure headaches. More than likely, the surgery failed to fully correct the Chiari malformation. The anterior location of the cord in the spinal canal, however, can affect the motor tracts and cause weakness in the legs.

The left and right lamina form the side walls and rear portion of the ring that forms the spinal canal. The vertebral bodies and discs are on the front side. The spinal cord is in between the front and rear portions of the canal. The two lamina join together to form the spinous (thorn) process which are the ridges of bone you feel on the back. Surgeons use laminoplasty and laminectomy to make more room in the spinal canal to decompress the cord. Laminoplasty is a more conservative approach in which the lamina on one side is completely cut through and the other lamina is scored or only partially cut throught. This allows the rear cover over the spinal canal to swing open slightly and create more space. In a laminectomy they completely cut through and remove both lamina to create even more space. Laminectomies weaken the spine and create instabilities similar to disc surgery. Removal of segements of the spine and cartilage can lead to degenerative changes in the spine.

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neava
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Re: CCSVI and CCVBP

Post by neava » Tue Apr 17, 2012 2:05 am

thankyou for the reply,
since my spinal fluid is now slowing wouldnt that now put pressure on the fluid going to the brain, so to speak,
which could cause the pressure head aches?

the newest CINE mri showed fluid is flowing well in the decompression area, before i had surgery i full compression of fluid, that resulted in the surgery,

my concern is the slowing of fluid along the spine, and the issue that this could be causing, i am aware i need the lesion removed from my spinal cord, this would be causing issues in my chest, breathing and lower body,
this is not an easy surgery, they will remove all the lamine and not return any of these, due to, i tend to have an issue in this area, and if i develop another growth of some sort it allows it room to grow out and not on my cord, that is the surgeons option anyway,

neava

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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc » Tue Apr 17, 2012 2:47 am

Yes. It is my opinion that obstructing impinging or slowing CSF flow in the brain or cord causes local problems with velocity and turbulance of flow that impacts the area of the brain or cord that is involved. I am not sure what you mean by a lesion but it is probably a cyst. Among other things, I suspect CSF obstruction can cause cysts to form in the brain and cord. The T5/6 problem and the lesions or cysts lower down in the thoracic cord can cause problems with tightness or banding in the chest and low back area (similar to the MS hug), as well as weakness and spasticity in the leg muscles.

T5 is fairly low down in the spine across from the bottom of the shoulder blades. It is a remote possibility that it is causing pressure headaches because it is too far away from the brain. Are you sure they are pressure headaches? If CSF is still flowing freely following the decompression surgery there is a good possibility that they may be due to musculoskeletal problems stemming from the surgery.

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neava
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Re: CCSVI and CCVBP

Post by neava » Tue Apr 17, 2012 3:15 pm

in my knowledge isnt the fluid from the spine go the brain? so if its slow wouldnt it be slowed to the brain?

i dont have a cyst in the spine in other words its a tumor, they ruled out cyst, they are unsure what type of tumor they wont know until they crack me open, thats the hard part, we dont know what we are dealing with that why they have called it an (intradural lesion)

im unsure whether these are pressure headaches ive just called them these, ill try explain them, it feels like a balloon, and slowly it is inflated inside my head and its going to explode, it another word, pressure, its like a line and its filling slowly, i can get this all day, to me this is pressure headache, it doesnt hurt, just buildup,
all the specialists have put me into the hard basket, but they understand or dont know, which puts me no where,
i understand the chairi can be causing this, and maybe always will, no matter how many surgeries i have,
i do wonder when i have the tumor the removed whether the pressure will ease there is so much that is unknown about the spine and fluid and what it effects,

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Re: CCSVI and CCVBP

Post by uprightdoc » Wed Apr 18, 2012 2:06 am

CSF is produced in the brain and flows down into the cord. It then flows back up again to be absorbed into the venous drainage system of the brain. The mass in the cord may be affecting pressure in the brain but because it is down so low in the spine it is unlikely. It is more likely to cause problems with weakness and spasticity in the legs. In any case, getting the mass removed from the cord will reduce pressure and improve blood and CSF flow.
It definitely sounds like a pressure headache.

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Kathyj08
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Re: CCSVI and CCVBP

Post by Kathyj08 » Wed Apr 18, 2012 7:36 am

Hello Dr. F.
I have not been on here much lately. I recently purchased your book from amazon.com but have not started it yet.
I don't believe I have asked you this question yet, but would my sympathectomy that was done 30+ years ago be similar at all to what you refer to as trauma?
The way the surgery is written it explains it as a bilateral T-3 costotransversectomy and a bilateral T-2 ganglionectomy.
I have been wondering if TOS is a possibility with me. I have been told by several Dr's and medical massage therapists that there is probably quite a bit of scar tissue along that area. If I do have TOS, I know that would not be the only thing I have because I have symptoms from head to toe.
Still no diagnosis other than CCSVI.
Thanks for your time on here!
Kathy

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coach
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Re: CCSVI and CCVBP

Post by coach » Wed Apr 18, 2012 7:56 am

Will dicuss with my husband. Hope he will be open-minded. If you would be so kind as to send me a PM laying out the details of the study. I know my husband will have lots of questions and want to be prepared to answer them. Thanks so much. I am interested.

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Re: CCSVI and CCVBP

Post by uprightdoc » Wed Apr 18, 2012 9:30 am

Hello Kathyj08,
The sympathectomy would be considered a form of trauma. In your case, rather than doing a lamincetomy to decompress the spinal canal, they did a similar procedure called a costotransversectomy to get to the sympathetic ganglia. The problem is that surgicial removal of pieces of the vertebral segments of the spine or the discs weakens the structure. This can lead to shifts in position, misalignments and collapse of segments. In your case the weakness created is behind and mechanically linked to the thoracic outlets. Shifts and segment collapse in the upper thoracic spine can alter the shapes of the bone soft tissue tunnels that make up the thoracic outlets.

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neava
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Re: CCSVI and CCVBP

Post by neava » Wed Apr 18, 2012 3:40 pm

thankyou,

i didnt know that fluid was produced in the brain then travelled down the spine then back up, thats very interesting,
i never spoke with the nuero surgeon about the pressure headaches since having decompression headaches, it will make no difference as he is happy has fluid has returned to the the base of my brain,
there is anything i can do to relieve these type headaches, they difficult to deal with,
also would you know if there is anything i can do with the nerve pain that im getting with due to this tumor, im not enjoying taking morphine for it as it doesnt really do anything for the pain but it gives me a stoned feeling, so it atleast helps with taking my head away from it, lol sad but true,
im on nerve pain relief but they dont do much,

i really appreciate your time,

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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc » Thu Apr 19, 2012 11:04 am

Your welcome Neava. It's interesting that the CSF is flowing freely according to the neurosurgeon but you still have pressure headaches. It is also interesting that morphine, which is very powerful and the other medication you are currently on don't relieve the headaches. My next book is on migraine headaches, migraine variants, trigeminal neuralgia and cluster headaches among other things. I was going to include seizure disorders but I will leave it out of this book. I have a great deal of success treating patients with all types of headaches. They can definitely be helped in nearly all cases using safe, effective and inexpensive solutions. Most require understanding the different causes and modifying lifestyles to avoid triggers.

The problem is no two headache patients are exactly alike. Solving the problem requires careful attention to history and a thoroght examination. In addition to complete neurological and orthopedic musculoskeletal examination I palpated (touched) and checked all the abdominal organs and ausculatated (listened) to the thoracic organs. I would also check the iris, tongue and the classic Chinese alarm points, which are mostly organ points. Once you know the cause there is a wide variety of supplements that are available to fix most causes of headahces, including pressure headaches. I used a urea based compound for pressure headaches. Neurosurgeons uses similar acting substances such as mannitol, acetazolamide and glycerol among other things to control increased intracranial pressure. They also use hyperventilation and ice. Hyperventilation, however, can be dangerous. I also worked on diaphram and hiatal hernia type issues, as well as constipation and other bowel problems that cause Valsalva type problems and raise intracranial pressure. The bottom line is, there is no single answer but in your case you can always use ice. It is analgesic (stops pain) and antiinflammatory (reduces inflammation ) and reduces edema (swelling).

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neava
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Re: CCSVI and CCVBP

Post by neava » Thu Apr 19, 2012 8:25 pm

that will be interesting to read the book when it is released, when will it be realesed?

my headaches dont really cause my grief, its the back pain caused by the intradural lesion that causes my issues, and that why i was put on morphine but due to that type of pain it doesnt help, im also on dopress, that helped for about 3months then it stopped being effective, is there anything that you might know of that could help my back pain? its getting to the point i dont like leaving the house, and i have 3 kids that im having trouble looking after
'
my NL put me on topamax for headaches and that is not doing anything,

i never spoke to my surgeon about headaches my first followup with him after surgery, it all stopped, it has all started to come back again, im unsure whether its best to talk to him about it, it been 3months since i have seen him (end of jan)

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coach
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Re: CCSVI and CCVBP

Post by coach » Fri Apr 20, 2012 6:58 am

My husband brought me an article about Neurontun being linked to hoarseness. I've used it for years and have greatly reduced the dossage. At one time I was taking 600 mg. 3 times a day. Now I'm taking 300 mg. once a day. Am having a laminectomy on May 1. Hoping that will help. Still concerned about upper cervical spine but drs. don't seem to be concerned.. Radiologist report said that there was a reduced volume of spinal cord posterior to C7 and T8-T9 and T9-T10 level. STIR increased signal and enhancement following gadolinium but these have the more typical increased T1 signal compatible with hemangiomas although somewhat atypical in that they usually are not visualized on the STIR images. Impresssion: No cord compression, cord signal abnormality or abnormal enhancement. Suspect multiple hemangiomas in thoracic spine that are not classic.

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Re: CCSVI and CCVBP

Post by uprightdoc » Sat Apr 21, 2012 3:22 am

Coach,
Decreased space around the cord compresses the epidural space which sits between the cord and the walls of the spinal canal. The epidural space contains the vertebral veins which are used to drain the brain and cord. Because of its proximity to the brain, compression of the space around the cervical cord can affect CSF flow and cause backjets into the brain. Compresion of the vertebral veins also alters local fluid mechanics causing turbulance, velocity changes due Venturi effect, and backjets (inversion flows). These changes stress and strain the cord. Overtime they can cause dural and arachnoid cysts or tumors such as hemangiomas to form in various tissues in the cord, such as your have in your thoracic spine. Your cord may be slightly tethered in the thoracic spine as well due to degenerative changes.

The upright and cine MRI studies being done by Dr. Rosa entails blinded before and after sham and Atlas Orthogonal correction. It also includes upright anatomical views. Dr. Raymond Damadian of FONAR corporation was at the last study. Although they haven't changed the clinical outcome in every case they have provided many insights as to the cause, which I am certian lead to more surgical solutions currently available, such as venoplasty, CSF shunts, endoscopic surgery for the spine, and endoscopic surgeries for the skull base. There are many possibilites. It will also lead to early intervention and prevention of neurodegenerative diseases in many cases. In which case there may be genetic skull design issues that the females your family share in common, such as a hypoplastic (undersized) posterior fossa a steep clivus or a flat base in the skull. You may also share similar design issues in the lower spine as well.

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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc » Sat Apr 21, 2012 8:12 am

Neava,
To control inflammation, pain and edema in your case as well as to relieve the pressure headaches, I would try icing the back of your neck and your thoracic spine toward the bottom of the shoulder blades. Just wrap some crushed ices in a towel or get a reusable ice pack and place them in a towel before applying to the area. Leave the ice on for 10-20 minutes. You should also get some physical therapy if possible and have them do some soft tissue work on the head and neck for the pressure headaches.

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