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pennie
@pennie

Posts: 4
Joined: Jan 29, 2017

Weakness in legs and knees

Posted by @pennie, Jan 29, 2017

I have a lot of problems walking when I have a really bad hradache. I have an LP shunt and have had a stroke two years ago
It feels like my knees want to give out on me. I have a lot of issues including IIH, optic nerve swelling and vision loss.
Just wondering if anyone else has ever had this ?

REPLY

Hi @pennie, welcome to Connect.
I’m tagging fellow members @wronnie888 @thegoodwife @ejlouboutin16 @predictable @jeancary @alicein_wonderland @beachgal8 @motherrules4 who have talked about LP shunts and/or strokes recently on Connect.

Pennie, are your headaches classified as migraines? Here is more information about symptoms of migraines http://mayocl.in/2bvc4bc, where it states “Sometimes, a migraine with aura may be associated with limb weakness (hemiplegic migraine).”

Have you spoken to your physician about the headaches and weakness in your legs and knees?

Hi, @pennie. Glad to see you reach out for fellowship here on Mayo Clinic Connect. Sad that I don’t have personal involvement to share with you, but a good friend has just spent more than a year in treatment and rehabilitation from normal-pressure hydrocephalus. She had a shunt installed and has worked through virtually all of the impediments her condition caused — including the symptoms you mentioned and more — and she is now nearly always comfortable in her old haunts among friends and neighbors around town. She says her success came from a good, communicative relationship with the best specialist on hydrocephalus on the East Coast. He practices in Richmond, Virginia — only 100 miles away from her home. Can you visualize yourself tracking down a real expert to work with?

@predictable

Hi, @pennie. Glad to see you reach out for fellowship here on Mayo Clinic Connect. Sad that I don’t have personal involvement to share with you, but a good friend has just spent more than a year in treatment and rehabilitation from normal-pressure hydrocephalus. She had a shunt installed and has worked through virtually all of the impediments her condition caused — including the symptoms you mentioned and more — and she is now nearly always comfortable in her old haunts among friends and neighbors around town. She says her success came from a good, communicative relationship with the best specialist on hydrocephalus on the East Coast. He practices in Richmond, Virginia — only 100 miles away from her home. Can you visualize yourself tracking down a real expert to work with?

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I am in Las Vegas Nevada, diagnosed with NPH and have had the adjustable shunt installed with significant success, by Michael Seiff at Sunrise hospital. After inpatient therapy at Sunrise and Las Vegas Continuing Care, I then went to ActiveRX for follow up outpatient therapy as recommended by dr Seiff to help with weakness in my legs and knees. I am using some of my long term care insurance right now to stay at a memory care facility and work up to the point where I can return to my home and usual activities.

@predictable

Hi, @pennie. Glad to see you reach out for fellowship here on Mayo Clinic Connect. Sad that I don’t have personal involvement to share with you, but a good friend has just spent more than a year in treatment and rehabilitation from normal-pressure hydrocephalus. She had a shunt installed and has worked through virtually all of the impediments her condition caused — including the symptoms you mentioned and more — and she is now nearly always comfortable in her old haunts among friends and neighbors around town. She says her success came from a good, communicative relationship with the best specialist on hydrocephalus on the East Coast. He practices in Richmond, Virginia — only 100 miles away from her home. Can you visualize yourself tracking down a real expert to work with?

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I think that it will take me about a year to work through the symptoms of weakness and discomfort with my physical orientation in my environment. I started with the neurosurgery on 3/2/16 and improved consistently with additional occupational and physical therapy.

@colleenyoung

Hi @pennie, welcome to Connect.
I’m tagging fellow members @wronnie888 @thegoodwife @ejlouboutin16 @predictable @jeancary @alicein_wonderland @beachgal8 @motherrules4 who have talked about LP shunts and/or strokes recently on Connect.

Pennie, are your headaches classified as migraines? Here is more information about symptoms of migraines http://mayocl.in/2bvc4bc, where it states “Sometimes, a migraine with aura may be associated with limb weakness (hemiplegic migraine).”

Have you spoken to your physician about the headaches and weakness in your legs and knees?

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How long does recovery from NPH take?Jean

You need to discuss your headaches your neurologist. They are not NPH symptoms. The NPH symptoms will subside as the shunt is opened more . It will be slow but remarkable as time goes on and the shunt is opened more. PT is a great help. When NPH is stressing the body, residual stroke problems will be more noticeable and limiting. It’s hard to remember or recognize the causes of different difficultirs. Sometimes I feel like a detective sleuthing out why my husband has a new problem and I have to actively advocate for him. Good luck. Try to have someone help with this. 4 ears are better than 2. Good luck

I have Spinal Stenosis which is when the discs are degenerated. Sometimes, I am not able to walk a distance without having to rest for a few minutes. It seems that I will need a walker with a seat on it for future vacations. Also, I can’t walk up the steps on an airplane. Since I haven’t had to since I started to travel by air, I didn’t know that I would be facing that challenge. In the future, if my health is the same, I will need to have more information on the airplane. If there is steps, I will need to request a ramp at my initial check in desk.

@user_ch30d2d11

I have Spinal Stenosis which is when the discs are degenerated. Sometimes, I am not able to walk a distance without having to rest for a few minutes. It seems that I will need a walker with a seat on it for future vacations. Also, I can’t walk up the steps on an airplane. Since I haven’t had to since I started to travel by air, I didn’t know that I would be facing that challenge. In the future, if my health is the same, I will need to have more information on the airplane. If there is steps, I will need to request a ramp at my initial check in desk.

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Hi @user_ch30d2d11,
I’m glad that you posted today. I encourage you to join some of the discussions in the Bones, Joints & Muscles group and the Chronic Pain group. There are several members talking about spinal stenosis in a number of discussions. Here are a few to start with to connect with others:

– New to Chronic Pain Discussion Board http://mayocl.in/2jWnBQ0
– MVA-motor vehicle accident-soft tissue trauma, Rx & type treatment/s http://mayocl.in/2lhUx6H
– Spinal stenosis http://mayocl.in/2dNExX0

@user_ch30d2d11

I have Spinal Stenosis which is when the discs are degenerated. Sometimes, I am not able to walk a distance without having to rest for a few minutes. It seems that I will need a walker with a seat on it for future vacations. Also, I can’t walk up the steps on an airplane. Since I haven’t had to since I started to travel by air, I didn’t know that I would be facing that challenge. In the future, if my health is the same, I will need to have more information on the airplane. If there is steps, I will need to request a ramp at my initial check in desk.

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It’s spinal don’t know what I feel like tomorrow. SOOO upsetting.
Very little help from the medical profession.
Gabepentin is what I use to ease…I mean ease the different leg pains I experience.
More research needs to be done with this horrible disorder.
Take each day with joy and go on.

@user_ch30d2d11

I have Spinal Stenosis which is when the discs are degenerated. Sometimes, I am not able to walk a distance without having to rest for a few minutes. It seems that I will need a walker with a seat on it for future vacations. Also, I can’t walk up the steps on an airplane. Since I haven’t had to since I started to travel by air, I didn’t know that I would be facing that challenge. In the future, if my health is the same, I will need to have more information on the airplane. If there is steps, I will need to request a ramp at my initial check in desk.

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Yes, my pain doctor just said there wasn’t anything he could do to help me any further. Even though, it feels futile, I need to accept each day with joy; because I have seen others in worse condition, and they aren’t complaining!

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