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tarlov cyst, tethered cord syndrome

Jocarol
0 Recommendations

Has any had surgery for the above syndromes, and what are the recovery times and what is expected as far as physical therapy?

Explore topics in this discussion:

Surgery Pain Lyrica Tarlov cysts Multiple sclerosis Physical therapy

23 replies

mbooth

Go to TarlovCystFoundation website and you will find a lot of your answers. Also, there are a lot of yahoo groups for Tarlov Cysts. I am on Straight Talk Tarlov and Tarlov Surgery Survivors groups. They are great for information and support!! Please join up. You will get all of the information you are looking for and more. They are wonderful groups of people and have a wealth of compassion and understanding for this horrible disease.

I had surgery with Dr. Feigenbaum in Kansas City. I would start with sending your films to him. You can get his contact information from they Foundation's website. There is a list of doctors that treat this disease. There aren't many, but the ones that do are wonderful.

I hope this helps. Feel free to email me if you have more questions.

Love, Hugs and Prayers,
Mary B

dancewithlight

I have consulted with Dr Long at Johns Hopkins and now with Dr Feigenbaum in Kansas City. It appears surgery is in my future. Any insights? Their techniques are different and I would love feedback from anyone who has had experience with either one.

tarlovian

Dr Long is the most experienced and John Hopkins is the second best hospital in the world...

There are Tarlovcysts all over the world, and great specialists,

Officila Research began in Italy 2 years ago, with a famous team made of neurologists, geneticists, specialists of the dural tube membranes.

I am dealing with this problem (have 7 cysts) a failed fat and glue surgery in 2002 and since that time, like too many of us, I am worse.

If I was in the USA, I would go to John Hopkins because of the quality of the hospital, of the staff, of the doctors,

Because Dr Long is the most experienced, the more cautious, and the more honnest NS I know. My best friend (european) was fixed by Dr long and she is very happy with.

I am on TT and several forums since 2001...I am myself in charge for forums in Europe, and we have results from all over the world, the biggest library about the problem...

You are answered all questions you ask with patients words, drawings, and illustrations explaining you all you must know to make your decision.

And have this in mind: you go to the surgery for being better...that is easy to face, but are you ready to face the worse, if it happens for the rest of your life, but not only YOUR life, also your family life.

A congress is to happen next year, with all over the world specialists and publications of 3 years researches...

It might be worth to wait a little longer to make your decision.

sincerely

Jocarol

What type of therapy was recommended for you after the surgery?

dancewithlight

No therapy has yet been suggested. I have had months of P.T. prior to the diagnosis that helped clarify the symptoms (i.e.. eliminate all other pain from other sources). But I do not yet have a surgery date and it seems that not everyone needs therapy. However, I do have an excellent P.T. if I need one.

Dr long is not longer doing Tarlov surgery. I do not yet know whom he recommends. What would be gained by waiting until next year? Wouldn't the information be available to drs as soon as it is published? There is seldom strong consensus on a particular form of treatment even after a conference......lots of debate though.

Jocarol

Dr Fraser C Henderson, neurosurgeon is in Bethesda Md. He practices at Doctors Community Hosp in Landham, Md. I am scheduled for surgery Nov. 20. You can look him up Tarlov Cyst Foundation. He has done over 90 tarlovcyst surgeries. He also holds a patent.

dancewithlight

I have talked with his staff and he does not take insurance. He seems to charge up front and then the patient has to get reimbursement from the insurance co. Am I correct? From what I have seen, the discrepancy between what the dr charges and what the insurance is willing to pay is more than we can afford. sigh. Let us know how it goes. what exactly will he do during surgery? does he take the cysts out, or drain them and then do something so that they will not refill?

Maggie2300

What does Dr Henderson have a patent for"???

Maggie

tarlovian

Dr Long is going on practising....and having patients..

tarlovian

not only lots of debates..;but things made together to make sense.

till now, even if this one or that one claims most of the surgeries or precedures he is doing as successes,

On the sade of what patients report, it is not the same on the contrary (read dr Wong's survey report).

there is a reason and the reason is surely something.
By meeting neurologists, dural tube membrane specialist,

It can lead to a fact that can change the surgery and make it safer.

at least, it is worth a try.

The foundation has the same idea about..If not, why using their money to pay a researcher.

tarlovian

I must add that "unless it is officially certified" what they calim as number of surgeries made, successes, ...

is only words of their mouth. They can say what they want.

I read each existing publication over the world and noted the number of cases treated:

according to them, we are millions, and very few are going on suffering as quite all surgeries are claimed as successes.

TNACgal

Dr Henderson has stopped using the shunt procedure. He has had successes just like Long and Feigenbaum as well as some that are not. My advise...Please don't listen to anyone about this decision. There are crazy people with hidden agendas that those of us that have had Tarlov cyst disease for many years can not figure out. Groups such as these and the popular ones on Yahoo are a great source of encouragement and strength but unfortunately, these support groups continue to be infiltrated by imposters that request membership under assumed names in order to impose their somewhat deranged loyalty to one doctor or other upon scared and hurting people. It literally infuriates me to see anyone try to sway a persons decision for surgery. If they can't offer support and continue to use scare tactics, I wish they would just choose to be miserable alone!
The decision to have surgery has to be... HAS TO BE, a decision made by the individual having it. Consult with the doctors and do your homework. Know that success has to be recognized as any level of improvement. Pray for a clear decision when selecting your course. Just be careful of any advise offered that is purely given to sway your decision!

irma09

I agree that Dr. Long and Fiegenbaum are the best for TC surgery. However, Fiegenbaum drains the cysts, treats them with some medication and then wraps them tightly with a valve from the heart of a cow.
What we all need to do is beg these doctors to train other docs, and have a follow plan in place just in case the patient doesn't bounce back in 3-4 months like few rarely do from what I am reading. They have to have some good therapy, good meds. Dr. F. I know for a fact just sends you home, saying send me an MRI in 3-6-9 and 12 months. I believe that the surgery was a success for my daughter, but why is she down in bed 5 months after? Here in the midwest there is not one doctor who knows what TC's are and won't help her after surgery. They just say go back to your surgeon. We feel blessed that when she was placed in a rehab clinic, there is a therapist who has helped at least one woman with TC's. He studies this NORD everyday. He is helping her finally. With Gods grace she will be home on Friday after a long month in the facility, and a month before at home in agony. Please just push these doctors to offer more help at home incase things go wrong. Actually, I think she should have had therapy soon after surgery, but we couldn't find one who would work with her because they didn't understand the surgery, until the PT at Manor care. Thank God for him.
HAng in there all of you. Push for more ongoing care, but Dr. F. is the best. I am glad to hear that Long is doing surgery again. Last year my daughter went out there only to find out that yes he does the surgery, but not right now, he was working on a new proceedure, probably like Dr. Franks I hope. We need more doctors like these or we need to clone them. We need to band together and demand more follow up care after this proceedure. We suffer for years before, why should we have to continue suffering after? Irma

Jocarol

There was a consultation fee of 295.00
the doctors fee for surgery is 5000. He doesnot participate with INS. Only the Ins is charged for hospitalization. The office manager wlll give you info to give to your INS for reinbursement for doctors fee and consult depending on whether you have an HMO or ppo. My pain level is at it worst so I had to make a decision to trust this process.

dancewithlight

Today I received an official letter from Dr Long, an apology that he is no longer doing Tarlov cyst surgery but is available for consult on the course of treatment and possible surgeons. Actually having an extremely knowledgeable, experienced and competent doc to talk to about options, and who does NOT have a vested interest in the outcome of one's choice, is a very good thing. so I will be setting up a phone consult a.s.a.p. I agree with TNACgal that the decision to do surgery MUST rest solely with the one considering it and his/her significant others. Do the homework, get all the information you can, consult as many folks as you think you need to and then make your decision. It is the best we can do with no guarantees. sigh. we must be our own advocates and be very intelligent about it. if one could have a good family doc on one's side to help evaluate the gathered information, that would be helpful. I am still gathering information. thanks for everything that all of you have shared.

tarlovian

"these support groups continue to be infiltrated by imposters that request membership under assumed names in order to impose their somewhat deranged loyalty to one doctor or other upon scared and hurting people. It literally infuriates me to see anyone try to sway a persons decision for surgery. If they can't offer support and continue to use scare tactics, I wish they would just choose to be miserable alone!"

that is so true...I completely agree...To scare somebody telling her/him that they are to be paralysed when doing nothing...is a shame..

and people acting by not giving all pros and cons are also people that one day, are to have to face the consequences of their acts.

How can a patient do "homeworks" there are so many things told here and there.

Dr Long consulting on the phone and giving advice is something that is very serious, because he has experience. Patients can't advise others: each is different and there are so many different type of cysts.

May God bless you all.

tarlovian

and about people that infiltrates groups..a claim has been made, proofs have been given ...and the results are that it was about libel, slander for some of them.

thoughts of the day:

“The greater the truth the greater the libel.”

“He who knows how to flatter also knows how to slander.”

“The worthiest people are the most injured by slander, as is the best fruit which the birds have been pecking at”

this forum is a place where the moderator is doing a great job.

Jocarol

Dr. Henderson holds a patent on a series of medical devices use to fuse and stabalize the spine. Google Dr Fraser Henderson -Meet our co-director Dr. Fraser Henderson.

dancewithlight

I have a phone consult scheduled with Dr Long but not until the end of November. small steps seem to take forever with this diagnosis. In the mean time I am functional but in pain most of the time. I would like to get this taken care of before I am bedridden with pain!!!!

dancewithlight

I have a phone consult scheduled with Dr Long but not until the end of November. small steps seem to take forever with this diagnosis. In the mean time I am functional but in pain most of the time. I would like to get this taken care of before I am bedridden with pain!!!!

Jocarol, do you know exactly what Dr Henderson will do with/to the cysts, how he treats them?

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